ALONG THE HEART TRAIL

WAITING FOR THE WORLD TO CHANGE

2011-10-06T06:49:00.000-07:00

If I am not mistaken those are a words in a song...but how many times have you heard people complain about what is wrong in the world. How it was and how it should be....It made me stop when I thought about those words on my walk back from the Pharmacy...and as I walked and pondered those words I realize the reason we keep waiting for the world to changes is because we ourselves are afraid of change...the fear of the unknown holds a lot of us back. So if we are afraid of change so maybe the rest of the folks in the world are afraid of change as well. It would make sense don't you think?

I will continue with words from songs for another thought. Michael Jackson sang about starting with the man in the mirror and asking him to change his ways. Again if we take a moment and think about those words....we are so willing to complain about how things are going in our lives, our neighborhoods, our community, our state, our country and finally the world. But what we don't do and by we I mean a majority of us is take the first steps to do something about it. We are afraid...change is stressful, uncomfortable and again down right scary. Is the solution to bury our heads in the sand and say LET SOMEONE ELSE DO IT. And, when someone else does step forward and does it and changes happens....but it is not the change we want...what do we do...we complain.

I have been through a lot of "STUFF" the last 12 years of my life....there were a lot of changes some that I could control and some that I could not. Was I afraid?...HELL YES....even when I was in control of the change....But even more so when I was not....Am I blessed? Some would say yes and others would say no I was just lucky...I am here today, why because I had no choice my heart was giving up on me and I had no choice. So I got a heart...and it was a good change.

I made some other changes in my life, that some people found rather ODD!!! I made personal choices in my life and for once did not care about the consequences...was I always up front with people about my changes...No, and for that I am sorry.

So as I was walking it occurred to me....we all need to look in the mirror and see that person who could make the world change.....If you keep on waiting for the world to change and let life go by because you are afraid....you can't complain.

Everyone talks about wanting PEACE in the World...is this not the standard answerer for all those BEAUTY CONTESTANTS....."I would like to see the PEACE in the World." Well that is a nice statement but you need to put some actions behind those words.....so tonight ask yourself am I doing all I can to make things better not only in my life, my neighborhood, my community, my state, my country and my world. Your answer may just surprise you!!!!!

PEACE

MAKING TIME FOR ME

2011-10-06T00:43:00.000-07:00

What an odd title for a post...I would agree with you except I think that it is not only true for me but for a lot of you as well. So let us take a look at it :)

OK so we may not have hotels in space or flying cars and robot maids, but we do live in an age of technology. I will be the first to admit that I for one was very sceptical of the whole notion of computers when the first came out. I remember typing my college papers on a good old fashion type writer...it was electric.....some of you may remember doing that with one that was not electric....and some of you are saying, "What the hell is a type writer??" But when I first got sick in 1998 the computer became my friend it was with the computer that I not only found but became involved with ACHA and made amazing friendships...it is sad to say that some of those friends are no longer with us. So the computer became my life and my I would be on it all the time....this was before lap tops and I-pad and notebooks and cell phones that you can do that we have now.

And, I guess that is my point...finding time for me or in your case finding time for you. We are so connected with the world today that it is sometimes mind blowing....and if your not a Blogger or on Facebook or Google Talk or Twitter....you really don't understand how much time you vest with these social media gadgets. Now don't get me wrong I am not saying they are bad...but they can be addicting. I am guilty of it myself..I blog, I am on Facebook, Twitter and Skype. It is fun it allows us to interact with folks we would not be able to interact with otherwise and sometimes we even get to meet these people in the flesh at a meet up where there is conversations but also at the same time everyone is on their hand held device of choice following and telling the rest of the world what is going on.

We have jobs/school and these things are important for us to maintain the lifestyle we have become fond of having there are some draw backs. Demands are made that at times get in the way of taking time for ourselves. It is at time a real pain in the ASS but we need to have a place to live and food so we take the trade off.

We all also have families/friends and taking care of their needs sometimes means not taking care of ours. Is it not IRONIC that people get married have kids and then never get to spend with their children. We get busy. We over enrolled them in to many activities (because as we know you need to raise well rounded children). Then we Bitch and Moan when we have to drive them here or there...we need to work overtime or even a second job so that we can afford these activities...this does not leave a lot of time to be with our families let alone carve out a space of time for ourselves. And let me say for the record that if your spouse is a stay at home spouse and you think they have me time...guess again....there is shopping and taking kids here and there...laundry, cleaning and cooking....maintaining everyone schedule so people are where they need to be when they need to be there.

So, what is the solution.....I don't know....do we go back to the days where we shut down everything for Shabbat (if you are Jewish) do we go back to the BLUE Sunday Laws in the States....Do we change the usual 40 hour 5 day work week down to a 40 hour 4 day week?
I don't have the answers....but I will make a few suggestions. Turn everything off for a 24 hour period once a week...don't have your children in every activity (when they really want to spend time with you). Try a family dinner and game or movie night or better yet just sit at the dinner table and talk once or twice a week. Get everyone involved in making dinner and cleaning up afterwards. Do a weekly family clean up....a dirty house is a sign of a family having fun...not a busy family...every once in a while have a family hooky day from work and school and go do something fun.

Now I know that is easier said then done>>>>but think about it could it work...will you find time for yourself...maybe and maybe not but what do you got to lose by trying it You may actually find time for yourself...what was that called again oh yeah ME TIME

YOU CAN DO IT ONE OF TWO WAYS...IT'S YOUR DECISION!!!

2011-10-05T07:34:00.001-07:00

Those words flowed like water off of Dr. Tuvia's lips when I met with him today for a transplant follow up appointment. Yes today I was able to get an ECHO, Bloodwork and see the man himself all in one visit. It is so good to have the insurance issue that plagued me in September behind me.

First let me state that the visit was Excellent and the ECHO looked great. So what did we have to discuss and why did those words flow like the Jordan River...well you see I still have trouble keeping my sugar under control...a lot of it has to do with me...(I tend to eat when I am bored and I have been bored waiting for our stuff to get here>>>that is a long story and a different post!! So when I met with the Diabetic Doctor last week she was not happy that there was some level of Protein in my urine....so she wanted to put me on a blood pressure medicine to help with that...I took the prescription and got it filled but did not take it...Yes I Wanted to talk it over with Dr. T. he is fine with me taking it but wants me to start out at 5mg a day in 2(2.5mg) doses for a few weeks and then for up to 10 mg 2(5mg doses a day) the Diabetic Doc wanted to start out at 10 once a day...but since it leaves your system after 8 hours Dr. T. wants to do it that way and also it will give us time to see how it effects my blood pressure(which for the record is perfect)

So when those sweet words come at me...it was when we began to discuss Glucaphage ... again Diabetic Doctor thinks it may help me get better control and as she delicately put it will help me lose weight...(for the record on this point I weigh 203 lbs weighed about 195 after the transplant and have maintain this +/- a few lbs. I really don't want to take this medicine..I know that if I watch I can get it under control and I had a really good start till the weekend was over and I was here by myself...I saw what making the right choices can do to maintain a healthy glucose level...And, I do admit to cheating...so Dr. T. looks at me and says, "you can do it one of two ways, it is your decision I don't care if you take it." Now hold on here is the COOL PART....he goes on and says, "But if I were you I keep my mouth shut and only put in there what needs to go in there...in other words if you want to cheat take the medication...if you don't want to cheat then keep your mouth shut."

If you think about those words they can have several meanings for everyone. I can see a couple in there for myself:

1. I am in control of my sugar and yes if taking a pill is how I want to do it I can do that and it would be easy...But I am not one for doing things the easy way.

2. I can also see it working for mental health...only in reverse...if you like to have stress and struggles and anger and resentment in your life keep your mouth shut...but if you want to be stress, anger and resentment free then open your mouth and say something. CAUTION: you have to watch how you say things so that you are not coming across as a TYRANT or MAD MEN and remember by relieving your stress may not be conducive to eliminating the stress, anger and resentment of the person with whom you are conversing...

SO....YOU CAN DO IT ONE OF TWO WAYS......IT'S YOUR DECISION!!!!!!!!!!!!

Happy New Year!!

2011-09-28T04:51:00.000-07:00

Yes you read that right....(I am not having a Prograf Moment) tonight at sundown marks the beginning of the Jewish New Year or Rosh Hashana. We eat apples and honey so that the New Year maybe sweet and healthy.....I understand that. We all need to have our health, because without it Life is Hard. Granted some have it worse of then others, but when it is happening to you, you tend to forget that. Even though I was ill for 10 years with my Heart I would always stop and think of those who had a different type of suffering. An example is watching my dear friends' son, who was only 18 dying of cancer....or hearing of a baby being beaten or shaken to the point of major trauma or even death.

Today I met with my new Endoc(diabetic doc) she wants to make some changes and I will seriously take them under advisement and discuss them with the transplant Doc when I meet with him next week.

I am feeling good and would like to get the sugar levels under better control. I am eating healthier (ok except for the occasional cookie or 2 or 3) I am walking at least a minimum of 3 miles a day (ok more if I get lost and all turned around as to where the hell I am) but the point is I feel good. I will put some of the changes she suggested in to place right now but will wait to add medications till I see the Doc.

My wish for the New Year is that EVERYONE enjoy good health....I also wish everyone a SWEET New Year but as a Diabetic I need to remember to STAY AWAY FROM THE BAD SWEETS!!!

SHANA TOVA

TO MY HEART FRIENDS

2011-09-22T02:42:00.000-07:00

Hello all I am not going to mention you all by name but I just wanted to post that I think of you all everyday. Some of you are facing hard times right now...some needing surgery....some needing transplants and some being evaluated for transplant...I have been where you all are at this time and I want you to know that if I can do it you can do it. I love you all very much and if you need anything do not hesitate to call me if you don't have my number email me at apug32609@gmail.com and I will send it to you.

Now have a great day

LET MY THING GO

2011-09-22T02:34:00.000-07:00

We have been in Israel for 5 weeks....I have had many clinic visits and met wonderful Doctors...problem is all my appointments were early in the morning and I was missing an awful lot of my Ulpan class (not good when you miss like 6 out of 12 days) so I have suspended my class for now and will resume it in November after all the Religious Holidays....what I am hoping will happen next week is that we will finally get our stuff from the US delivered to us next Monday. In order for this to happen I need to pay the shipper in the states and pay the delivery people here.....the second part I can take care of this afternoon and hopefully I can take care of the first part this evening as the shipper is in Seattle....if all this works out to night I will email my Contact person here....I really don't like talking to her because she talks fast...but I will deal with it....I JUST WANT MY STUFF!!!!!

Did you miss it...I mean lil old me?

2011-09-14T11:47:00.000-07:00

So greeting to all my followers who have asked me to start posting again.....I am back....I have officially been living in Israel for ONE MONTH!!!! So I guess the main question everyone has is what has it been like?

It has been really good....we managed to get a lot of things done in a short period of time. That said it is Israel and things don't move super fast. We signed up for Insurance when we landed and it took 3 weeks to actually attach ourselves to the local clinic where I will have a family doctor....I was able to see the transplant doctor to day but was not able to get blood work as I forgot and took my medicine. They also wanted to do an ECHO but the person who scheduled my appointment for today did not schedule that...so I will need to go back...the clinic is about 1hr hour away by bus....not a bad bus ride as does not stop every 5 seconds.....I get dropped off at the train/bus terminal and then I catch a taxi or bus right to the clinic door. Today the Doctor told me that he has a Friend who runs a transplant clinic in Jerusalem...which is where I live so while he would hate to see me go...he feels that if I get overwhelmed by the trip to his clinic that I can change and he would make the introductions...I told him for now I am happy and that since I only have to go every 3 months after this next trip that I think it would be ok and that I would let him know.

So what do I do for fun....right now I am taking an intensive Hebrew course 5 days a week for 4 hours each day...I like it and I am learning but I find the conversational part easier then the writing part...I struggle with that and it only Started on Sept 4 and goes for 5 months...so far I will miss 4 days with 1 or 2 more in the next couple of weeks....for clinic visit and receiving our stuff which should actually be delivered next week.

I do a lot of walking...mainly because I get lost and get frustrated with myself. It would be easy to grab a cab but I figure if I walk I will remember and not make the same mistakes next time. The other day I actually walked around the entire outside of the Old City (that is where the Western Wall is) It took me about 45 minutes then I met Sharon at the mall we had Ice Coffee and then we walked to a hotel where friends from America where staying. ( I was at the Wall for their son's Bar Mitzvah and as I was leaving I was asked to join another Bar Mitzvah because the person did not have enough people to listen to him read from the Torah...I had the honor of saying one of the blessings before the Torah reading) So I walk and I take Hebrew...I meet friends for Coffee and I walk( probably around 3-5 miles a day) of course it is hot here but not the wet hot humid days that we got in Pittsburgh...so it is not to bad....and of course I wear sun screen and even got a hat from one of those fancy clothing lines to wear...and if I am not wearing that I am wearing my baseball hats...I drink lots of water and we are eating a lot healthier here with the fresh fruits and veggies...my clothes are getting loose but my weight has not changes so I think I am just taking the fat and tightening it up....

I FEEL GREAT AND I AM WALKING UP HILLS AND DOWN VALLEYS.....I LOVE IT!!!!!

I think that catches you up....for now....stop back again real soon!!!

As it says getting a heart transplant and what happens after.

2011-08-04T20:23:00.000-07:00

This will be the last post that I make here on Along the Heart Trail.....that is the last post in America....I am moving to Israel....yes you heard that right....so what about health care and follow up for the transplant....Well I have a clinic.....and I just had Blood work done for rejection a few weeks ago and am pleased to report that again there are no signs of rejection....I had my last clinic visit in Pittsburgh last week and the they have been in touch with my new doctor and coordinator...all is going well.....and the transition should be smooth as silk.

So stop back in a few weeks as I post about my new life with my new heart in Israel.

Peace out.

Random

2011-06-22T21:58:00.001-07:00

As the title says Random:

1. Insomnia sucks and really needs to take a vacation from my life.

2. I am still waiting for a reply to a question I asked last week....maybe it will come soon.

3. Friends love ya no matter what you do.

4. I shared my transplant story today at an award ceremony for a County Corner who is a very strong advocate for organ, tissue and cornea donations.......He thanked me for sharing my story because he never gets to see the results of those donations.

5. Thinks that sometimes taking a chance in life is worth it even if people think you are nuts.

6. Really hates that the local cable company breaks in every half hour with News Makers....I am watching a show here.....put that shit on in the middle of the night.....on second thought don't do that as I am usually awake in the middle of the night.

7. Insomnia sucks....

8. I am an adult...I wish people would understand that sometimes.

9. It's almost Friday

10. Pay it forward today.....if we all did that the world would be a better place.

ORGAN DONATIONS SAVE LIVES....SIGN YOUR ORGAN DONOR CARD TODAY!!

BE A HERO TO SOMEONE!!!!

2011-05-30T01:30:00.000-07:00

On this Memorial Day let us not only remember those who gave their lives in service to our country...but all those who gave the gift of life....those of us who receive a transplant will not forget them.

A hero is someone who is willing to make the ultimate sacrifice to defend or save another person's life!!

ORGAN DONATIONS SAVE LIVES....ON THIS MEMORIAL DAY SIGN UP TO BE AN ORGAN DONOR!!!

Be a Hero to someone!!!!

2011-05-20T14:24:00.001-07:00

I had a clinic appointment on Wed of this week. They did an echo the pics were not that great and one doc wanted to shoot me up with contrast to get a better look. So the came and put an IV in my hand....and then the tech comes back the nurse asked if we were ready for the contrast. "No, I showed pics to another doc and he said we are god to go."

That really sucked I got poked when I did not need to get poked.

I was supposed to have my annual rt/left full heart cath....but canceled it because It was a rough few days before as my son, had a stent put in to relieve the blockage of a kidney stone on Monday. (he will have surgery to remove that stone and the ones in his right Kidney of the 3rd of June...lucky his graduation is the 2nd)

After ECHO I met with my Coordinator and the Docs....Everything looks great and there is no need to play with anything at this time. I will have my heart cath at the beginning of June...blood work at end of June and Blood work at the end of July where they will look for rejection and finally a clinic visit the first week of AUGUST.

My weight was up to 215 but no one is concerned at this point. The weather has not been that great to go out and walk..If I had a row boat I would get some exercise because it has been raining so much. My plan is to start walking even in the rain as long as it is not severe storms and start watching more the things I put in my mouth.

Ok I need all my readers to get the word out.!!

2011-05-13T20:43:00.000-07:00

I need your help to spread the word....pass this on to everyone you know!!!!

Just found out that the 2012 Transplant Games will be happening. The sad part is the games are used to educate folks about the importance of Organ Donation and the lives that are changed by it. for those who receive these life saving surgeries and the families whose love ones have made a great sacrifice by choosing to be an organ donor.

here is a quote from the National Kidney Foundation:

NKF SUSPENDS U.S. TRANSPLANT GAMES IN 2012

Will Re-Examine Model in Light of Economic Conditions,

Programs to Encourage Organ Donation Continue

The National Kidney Foundation will not be hosting the U.S. Transplant Games in 2012.

"For 20 years," says NKF CEO John Davis, "the NKF U.S. Transplant Games have educated the public about the life-saving power of organ donation and dramatically demonstrated that those with transplants can and do lead normal and active lives. But the Games represent a multi-million dollar expense for the foundation," he explains, "that also requires a significant commitment of staff resources."

"Now," Davis says, "when most Americans view transplantation as almost routine surgery that restores life, we will re-examine the format and financial structure of the Games, to achieve maximum impact and to ensure sustainability going forward. As always, we will work with a range of constituents and supporters to accomplish this."

AS A PERSON WHO RECEIVED A TRANSPLANT AND HAVE MANY FRIENDS WHO HAVE HAD TRANSPLANTS...I STRONGLY DISAGREE WITH THE QUOTE:

Now," Davis says, "when most Americans view transplantation as almost routine surgery that restores life.

I don't know if this is true but if you ask me or any one else who is alive today if they or their families and friends view this as routine I think we would all say NO!!!

please see the whole article @NKF Website

IF YOU AGREE WITH ME LOOK UP THIS NOTICE AND AT THE END THEY ASK FOR COMMENTS....LET MR. DAVIS KNOW WHAT YOU THINK OF HIS STATEMENT!!

Check in!!

2011-04-07T17:17:00.000-07:00

OK I told you all that I would be checking in from time to time to let you know how things are going. I am doing well with the diet. I walked Monday Morning......I bowled on Tuesday and Wednesday...today I did not do anything I am tired...I spent two days at a table for Organ Donation Awareness Week....Stood there and handed out information and talked to people. I am tired so I did not do any type exercise. So I am giving my self permission to take the day off....weather is to be better this weekend so I am sure I will get my walks in all 3 days.

Changing Directions

2011-04-04T00:48:00.000-07:00

OK so I have decided to change ALONG THE HEART TRAIL just a little...No I am not shutting it down....yes I am still going to post about my progress with the transplant but I have decided to use it as away to keep myself focused on things I need to do.

What are these things that I speak of? I am glad you asked...in addition to being blessed with a Congenital Heart Defect and some Pulmonary Problems....I was given a gift that I would not wish upon people I hate(not that I hate anyone) but if I did I would not wish this upon them...what is it? DIABETES!!!!

For some reason because I was diagnosed at age 33 everyone assumes that I have Type 2 which can be controlled with Diet and Exercise.....WRONGO BONGO.....I have Type 1....My Pancreas makes no...nada..zero...zilch insulin of its own. I have a insulin pump...this little device the size of a beeper is my pancreas....does it work...in a quick response the answer is yes....but only if I can control what goes into my mouth and what amount of time I spend exercising....So in away I must do the same thing that a person with type 1 needs to do...

However, and let me shout this from the roof top, IT WOULD NOT MATTER IF I LOST WEIGHT...I WOULD STILL NEED TO BE ON THE PUMP!!!!

Last Thursday morning my sugar reading was 571...high..hell yes it was high....the problem and danger that this can cause a body is down right scary....my problem is that I can not tell when my sugar is high....I can tell when it is low...but when it is high I can function without a care in the world....which is sad..and scary...one day my glucose meter did not even register a reading it just said high....so I guesstimated that it was about 500 and gave myself insulin...2 hours later it was down to 550 so it was not at 500 it was a lot higher. But last Thursday it was at 571...what ticked me off was that someone told my wife...well if he would just lose some weight he would be fine....NO....if I lose some weight I would have better control but since my body does not make insulin....let's say it together class...I WILL STILL BE DIABETIC!!!

sorry but ignorance is not an excuse for stupidity!!!

I have also discovered as I have written here before...that I do well when I follow a Gluten Free Diet....Some people find it strange...normally you don't connect Gluten with Diabetes...other illness yes...but Diabetes not so much....Maybe my wife is right can I have an allergy to Gluten? I don't know...but the one thing that I do know is that I feel better without it.

So I am going to start again to get off the Gluten....I had zero yesterday....but that fact is I have done it before...only after awhile slipping back into eating it again......I must approach this battle with Gluten much like and alcoholic or drug addict, sex addict, gambling addict and food addict deals with their addiction....

ONE DAY AT A TIME.....that is so much easier said then done...because your mind starts to play tricks on you....the voices in your head tell you...go head one cookie, slice of bread, slice of pizza, bite of pasta is not gonna hurt you...it not like you eat this way everyday...well I am here to tell you that it does hurt...because once I have that one bite something triggers in my mind and I do nothing but grab anything and everything with Gluten in it....and much like other addicts how do I feel after...like a worthless piece of shit. So how do I punish myself....you guessed it I just eat more Gluten....

Do I feel like exercising when I am eating this way....Hell to the NO!! And that is the other part of it....Do I need to exercise? Well DUH...the new heart is not going to do me any good if I don't....so for this reason I will be sharing my journey with you all here as I battle this addiction.

Yesterday....April 3rd I had no Gluten....I did have a high sugar reading of 410 but that was because I did not pay attention and got a smoothie protein drink that was not sugar free...while there was no Gluten in it...there was sugar....for the rest of the day I drank water.....I ate fruit with peanut butter, chips with salsa and a protein bar...my sugar was under 150 for most of the day...it did go up at one point to 211 after I ate but quickly dropped down to under 175 and has stayed there. I also walked for an hour and a half today...this was the first time since returning from Israel where I did a lot of walking that I actually got out and walked...and I felt great...

So you see I have 1 day under my belt so to speak....I have been up since 9am Sunday and it is now 4:30am Monday.....this is called healthy living...Hopefully it is just a little hick up and my body will learn to use all its energy during day light hours.

I am documenting the journey here for one reason and one reason only....this blog is posted on various social networks....so what I need from you is to keep me honest and to call me out if I do not post every couple of days....CAN YOU DO THAT FOR ME????

I have been blessed by having you as readers and friends...we have been through some rough waters together but have always come out OK....I know that I will be OK with your continued love and support.

Thanks

2 years ago today!!

2011-03-25T06:20:00.000-07:00

It was 2 years ago at 9:25 AM I was still in the hospital in Kidney and Heart Failure. I was moved up the list the night before and I had 2 visitors, Leslie and Jill we were having a nice talk when the doctor came in and said, "We have a 22 year old heart, do you want it?" "Let me think about that for a second, HELL YES!!" I said.

He said to call who I needed to call and the surgery would take place later that day.

I called Sharon and told her to pack a suite case for 3 days because we have our heart. I sent a text to my co-workers, who were on their way to visit as I was sending them the message.

The rest of the day was filled with phone calls and visits.

at around 9:30PM some people where getting anxious because the surgery had not happened yet....But I was calm, the heart was mine and I knew somewhere a family was saying goodbye to a 22 year old child...and I could wait as long as it would take.

Finally at 11 PM they took me down to the holding area I said good bye to most of my family and was in the area when another friend Rebbecca came in and saw me. The last thing I remember is the doctor putting pads on my back.

I was told they started the operation at 12 AM on the 26th and it ended at 6:00 AM

As Sharon likes to Joke, That's Anthony he is quick and easy.

I have been blessed by this gift in so many ways that I can never say thank you enough to my donor or their family.

Out of respect for them THERE NOT BE A POST TOMORROW Rather it will be posted here:

2years ago today!!!!!

I received the gift of life. I received my HEART!!

PLEASE TAKE A MOMENT TOMORROW MARCH 26TH AND SAY A PRAYER FOR MY DONOR AND THEIR FAMILY.

IF YOU ARE NOT AN ORGAN DONOR SIGN YOUR CARD TODAY....YOU NEVER KNOW WHOSE LIFE YOU WILL SAVE!!

2 years ago today!!

2011-03-23T21:03:00.000-07:00

It was Tuesday March 24th at about 8 PM. I was still holding all this fluid....the doc came in and told me I was having Kidney failure and they were going to give me meds to help my heart beat more effectively...that was the bad news...the good news was that this would move me up the transplant list....so I called Sharon and told her...at this point we were originally told it was going to be a 18-24 month wait...so I told her maybe it would not be as long but that I would probably be in the hospital till I got the heart...

It was hard to hear those words from the doctor...basically it was like receiving a death sentence....how do you live with both your heart and kidney's failing....it would be a very long and restless night for me.

2 years ago today!!

2011-03-23T13:11:00.000-07:00

It was a Monday..I spent the weekend in the hospital with very little movement in the water removal category....so needless to say that the Hear Cath was off. So we are still in a holding pattern hoping to do the Cath on Tuesday.

2 years ago today!!

2011-03-20T13:29:00.000-07:00

March 20th 2009, I was at a follow up appointment with the clinic, as most pre-transplant people do. I was holding 25 liters of fluid and we made the decision to admit me to the hospital and take the weekend to get the fluid off my body and then on Monday we would do a heart cath and see what is going on with the heart functions.

So I called Sharon and filled her in on what the plan was for the weekend. My next call was to my friend Danny. You see I had already picked up our Shabbos Dinner and it was in the car. So I called Danny and asked him to come and pick up the meal.

After, I met Danny in the parking garage and we exchanged the meal. I went back into the hospital got settled into my room. To be honest I was looking forward to a relaxing weekend of Peeing...

PLEASE READ I NEED YOUR HELP!!!!

2011-03-14T01:19:00.000-07:00

I posted an event over on facebook...sorry twitter fans I can not list it on twitter as it is to long but now you can read it.

Ok so the event is to take place on March 26, 2011 the 2nd year anniversary of my heart transplant. I asked people to please join me in saying a prayer on that day for the donor and their family because if it was not for their sacrifice at a time of sorrow for them I would not be alive today.

A simple request yes...no, I have people who may attend and some who are not attending and some whom have yet to RSVP.

Is it not amazing that people are so busy that they can not take 1 minute to say a prayer or take a minute of silence to remember the sacrifice made by a family who just lost their 22 year old child.

With the horrific things that have happen around the world this week...I realize even more then I usually do that life is a gift and that gift can be taken away at any moment.

Because of the sacrifice of my donor and their family the gift of life was given to 8 people on March 26, 2009....and if in this world we can not take a minute to say a prayer or just take a moment to think of that sacrifice then it is a sad commentary on our lives.

Call me MR. Zero for short!!

2011-03-10T03:07:00.001-08:00

Ok so I am in a good mood. Got the phone call that the results of my blood work for any signs of rejection came in and has been for the last 24 months things are still looking ok..no good...no awesome....no Freaking Awesome. As I posted earlier the results of this test are 100% accurate in showing no rejection...but if there is rejection it does not show how much.

I am still sitting with zero rejection after almost 2 years...if I can get through year 3 with these same kinda of results I will be home free of anything major happening as far as rejection goes.

My next test will be the dreaded Left/right heart cath that I will have in May!!!! Yes I really do not like this test but you gotta do what you gotta do!!

Ok so go out and make a difference in the world today!!!

and a good time it was.....NOT

2011-03-03T19:58:00.000-08:00

Ok so I got to the clinic on time...was called back at 8AM...my actual appointment time and was seen by the Nurse...followed by the coordinator....who ordered a slew of blood work...my weight was up 2lbs from my last visit and has been creeping up over the last couple...(funny my scale at home weighs me the same everyday) Dr. Mike asked if my scale was broken...(no because it shows my wife's weight going down...) so as long as my scale at home stays the same or goes down I really see no issue here. But the appointment at the clinic went a little longer the I had hoped...the above mentioned Dr. Mike and the surgeon..were running a little behind schedule...so after waiting 45 minutes are conversation was somewhat brief.....them."you look great any concerns?" Me "Nope I feel great." them, "good so the plan is for you to get blood work today and then we will see you in May for your yearly Right and Left heart Cath." me, "Sounds good."

Drove over to the lab..got lost but eventually found it.....did not go far enough up the road...go in register and then weight for 45 mins...finally got called back...girl begins to input test in the computer...ok we are ready to go...6 tubes of blood later...and another 5 minutes of waiting while we reviewed my demographics to make sure the right tubes get tested and I was on my way home at 11 AM...was it faster then getting a biopsy....yes in the fact that it only took 5 minutes to take the blood...but from the start of the clinic visit till I was done with the blood work I would say it was a tie.

I did offer a suggestion to my coordinator that I saw today...next time I would like to do the blood work a week in advance...Since it is only 100% accurate for showing no rejection...that way if there is doubt I will already be scheduled for a biopsy and it is far easier to cancel that the day of then waiting to schedule for another day.

I should have the results by early next week...so in the meantime I ask you all to say a brief pray that everything will come back fine.

It is time for the clinic

2011-03-02T20:45:00.000-08:00

In about 6 hours I will leave the house and drive into the Burgh to Transplant Clinic at UPMC Presby...this trip will be different then my previous post transplant trips and to tell you the truth I am very excited about it.

WHY you ask...let me tell you..this time I see the usual people..but instead of leaving them and going to the Cath lab for a Biopsy....I get to go to a different building and get a blood test. The test is a lot quicker then a Biopsy and does not require me laying on a table for 30 minutes with my shoulders (yes they still bother me) screaming and get stiff to the point of tears. The blood test will only tell if there is no rejection..however after having none for the last 23 months there is no reason to think there will be...but if G-d forbid there is it does not say how much there is so I would then need to have the Biopsy done.

I find it hard at times to put my head around the fact that in a short 23 days that 2 years have passed since I received that wonderful gift of life from a family who in their greatest time of sorrow thought enough to allow several people to be helped with their love ones organs. I thank G-d everyday for the wonderful gift I have been given.

I will let you all know how the test goes in the mean time talks among yourselves...
Need a topic....

How do we get more people to become ORGAN DONORS?

Only in my world!!

2010-12-30T08:31:00.000-08:00

As I wrote in an earlier post...I recently was seen at the Diabetic Center at UPMC and we made some changes to my basal settings(that is the insulin I get throughout the day) on my insulin pump. The best way to see if these new settings are working correctly is to fast for 6 hours during the day...on 3 different days and different times.

Well yesterday I decided to do the test from 7AM-1pm. The only requirement was that my sugar reading had to be under 170...well that was no problem so I started at 7 my sugar was 154 at 10 it was 147 so far so good..I then went to the YMCA and did 40 minutes of cardio on the treadmill and elliptical..I finished and got home at 12 so I checked my sugar it was 197 and then at 1 it was down to 163....so I call the doctor with the results. The nurse informed me that because I had the 197 reading that the I would have to repeat the test another day.

I am kinda pissed...it I don't eat my sugar is fine with the settings...however it would appear that exercising only makes my sugar go up!!!

I always said that exercise and dieting will kill you. Just look at the word diet it starts with the letters DIE... That is a joke you all keep exercising and dieting (0r as I like to say maintain that healthy lifestyle).

As my favorite hat says...Failure in not an Option.

I will get this sugar stuff taken care of and under control.

Resolution Time Again!!!

2010-12-28T20:38:00.000-08:00

I know we all make them and then break them but this year is going to different. WHY? Because I am starting tomorrow...I have been a little off with my Gluten Free Diet (GF) the last couple of days....not a whole lot of GF choices at an Italian Funeral...and I am paying the price.....my sugar has been good but I feel sluggish and am having a lot of pain in my shoulders and muscles again..

So tomorrow I go back to GF...I am also going to maintain a 1600 calorie a day diet....as I get my sugar under control if I ate 2000 to maintain my weight...the doc said I might gain. I will also be writing down EVERYTHING that goes into my mouth....

I am returning to the YMCA....I will be picking up an Elliptical from my cousin by the end of the week....I also opened up a Tai Chi DVD that I have had for awhile now....plus I have the Wii Fit.....so I should have no excuse not to get at least 40 minutes of exercise a day...

I would like to lose 20 lbs before I go to Israel in Feb. I would like to get to 175 lbs....in order to do that I need to lose about 23lbs...I know I can do it.

I also have downloaded an app to my droid that tracks exercise, blood glucose readings, carbs, pulse rates, bp and weight.

So I have no excuses not to do this.....

I will also return to my daily meditation and writing daily in my journal.

SO THAT IS WHAT I AM GOING TO DO WHAT ARE YOU GOING TO DO!!!!!

ME UNSWEET!!! HELL YES!!!

2010-12-16T19:37:00.000-08:00

If you would have told me last week that the highest sugar level that I would have today would be 145....I would have thought that they were crazy. However, the fact is after my meeting yesterday and the minor adjustments that we made to the Basal settings on my pump have seemed to have made a big difference...I ate the same things that I ate last week only I did not get the HIGH Spikes that I got then.

Am I happy....HELL Yeah I am happy.

A normal A1c which is your 3 month sugar average should be under 7 mine was 10.1 yesterday...the good thing my kidney and liver functions are good....which means that while the sugar level were high there seems to be no residual effects from it. My goal is when I get the A1c in 3 months that I have it down to at least 7. I know that I can do this..I was always doing everything right...so what was the problem??? It would be that while I was actually telling the old doc the settings that they wanted..it was not what I had put in my pump for the basal setting(that is the insulin that the pump gives you consistently throughout the day) I had 2 settings 1 should have been 1.5 but what I had in the pump was 1.05 big difference as it increase at a.05 rate...so I was so not getting enough....I would get the highs and then I would Bolus(that is what you give yourself when you eat something or you can do to correct a high level without eating) which would then cause the extreme lows I was getting.

So where do we go from here....I will be maintaining a 1600-1700 calorie a day diet...why that level? It appears that one can gain weight when sugar is under control and while normal 1800-2000 calorie a day diet will maintain my weight...we agreed on this so that I would either maintain or I would lose...which by the way I would like to drop about 10-15 pounds. I will continue to eat Gluten Free...as I have discussed here before...processed sugars and enriched flours do not mix well in my body.

So what was the big thing that I got out of this meeting yesterday....while all felt hopeless a few weeks ago...is not. Never give up on seeking out the answers if you are not happy with what your doc is telling you or not telling you....you have the right to always seek a 2nd, 3rd or 4th etc etc opinion. You are just not a patient you are a consumer if you are not getting the bang for your buck...you have the right to take your business elsewhere.

Remember you are your biggest advocate.....Speak up already what are you waiting for..it is your life!!!

And it is out of here...so long and don't come back

2010-12-13T19:10:00.001-08:00

As I mentioned a few weeks ago....I has an overnight pulse oxygen test completed to see I still needed to use the oxygen while I sleep....I was hoping it would work out well and that I would not need it anymore...one because the machine has been in the house for over 10 years....two the machine throws off so much heat which is good in the winter...or like nights like to night when it is freezing out..but is so unpleasant in the summer time....

Yes the results came back....the machine gets the boot!!!! I still need to use the C-pap machine it is a lot smaller and cooler then the big hunk concentrator. I am now totally off Oxygen....I used it at night and for awhile used it when I was awake....I dd have portable tanks that I had to use for a while....I even used a sports water camel to carry the tanks in when we use to go GEO Caching...

But I am please now to be free of the Oxygen...just another step that my health continues to improve....

so hit the road jack and don't you come back no more..no more..no more....hit the road jack and don't come back no more!!

1 more day

2010-12-13T19:03:00.000-08:00

I only have to wait one more day before I have my appointment with the Diabetic Clinic at UPMC...I am usually not excited about early morning appointments...especially when it is cold outside.

However given the fact that I have not been happy with my readings as they have been all over the place....as high as 600 as low as 55...this wrecks havoc on my moods....and while I do my best to warn people I some times explode like Dynamite!!!

So I apologize if I am unbearable to live with...hopefully I will get some answers when I meet with the new team.....Plus I am seriously thinking of looking into the Pancreas transplant...especially if I can get rid of this horrible disease called diabetes.....

Santa Has Left The Building

2010-12-09T18:23:00.000-08:00

Each year I get to play Santa at our holiday party for some of our students and their children...today was that day.

All but one child cried....they were little boys and girls...from age 3mos-4 years.

I have a tradition that if both expectant parents are in the program that they take a Picture with Santa... If a Pregnant Mom is there alone...yep she gets her picture with Santa as well.

I bitch and moan about putting on the dang suit...which does not fit as well as it did when I weighed 65lbs more then I do now....Santa does not walk around....if he did, he be walking around with his pants on the ground....not a cool picture...and the kids would run screaming and kicking out of there.

But I love it....over the years I have looked different...the one year the only thing we could find for stuffing was a quilt...but it would not go round it would only fold in a square..that was the Square Belly Santa....and we laugh at the office when we look at those pictures....

It was fun being Santa...or his helper.....you know cause the Real Santa is busy this time of the year....I guess I have 12 months to either find a good tailor to take in the suit....find stuffing to make the suit fit better or find a new Santa...Yeah I will be there next year!!!

From where I sit.....

2010-12-08T20:29:00.000-08:00

I sometimes sit here in my recliner at night and just think....I am not tired...I don't feel like going to bed..and I just think.

The last couple of days here in Western PA, as with much of the Eastern half of the country has been experiencing a cold spell....well actually a Deep Freeze would better describe it...the temps here have not gotten above 26 the last couple of days...add in the wind and it is BUTT COLD out there. But, the one thing that I have noticed is that I am not affected by the cold air as I have been in the past.

I get to play Santa tomorrow night at a party...I find it odd that after having the transplant and losing almost 65 pounds that I still play Santa....a skinny Santa.

I have bowled the last 2 days in a row and will roll off with Evan tomorrow (after I play Santa) for our league....I like bowling and look forward to the different people that I bowl with....Tuesday is a group of transplant recipients, Wednesday is a mixed group of folks from 20ish to 70ish and we laugh a lot, and of course Sundays with Evan and his friends....I am really improving as is evident by my 187 game yesterday.

I wonder if G-d is going to fill me in on his plan for me...what else am I supposed to do in this world...how is my life going to impact on my fellow man?

I am excited for our trip to Israel and seeing old friends and meeting folks that I talk to on facebook and twitter...we have scheduled horse back riding and other fun activities...Sharon and I will be married in the Jewish faith while we are there...It will also be used by us to mark our 25th year of marriage, which really is not till June but we will cheat a little. I hope Evan enjoys it.

I guess what I sit and think about the most on nights like tonight when sleep does not want to come...is that I have been blessed in my life..I have good friends, family and co-workers...even though I sometimes Bitch and Complain about them. My health is better then it was and hopefully after meeting with the new Endocrinologist we will be able to get my sugar under control. I have my faith in G-d and while I sometimes feel that he is always testing me...I realize that it has been my faith ( Although it has changed...as I have changed) is a big part of my life.

So my wish for all of you is that you may find joy, happiness, health, love and blessings in your life...regardless of what troubles you are facing...if you have supportive people in your life you will be ok.. I really believe that G-d has a plan for each of us....it may not be what we want to do but it what G-d wants us to do.

I volunteered today...

2010-12-07T19:20:00.000-08:00

Ok that is nothing new...I have been volunteering at CORE for over a month now....I go every other Tuesday...I did mailings and Corporate folders the first couple of visits...But, today I made packets...these packets contained information that will be used when securing Organs....also in the packet was another packet that went with the body to the funeral home...1 told of the various organs, tissues and other things that have been donated...a letter from CORE...expressing sympathy and offering to offer any support family would need, also the final thing in that packet was a frame with a beautiful poem in it.

As, I was putting these together I could not help but think that on March 26 2009 a family was getting that packet while I was getting my heart.

What I did today

2010-12-02T16:50:00.000-08:00

I spent the day relaxing and reading a book...first at Starbucks then at Max and Erma's.....it was great.

So what did you do?

Walking from sea to sea

2010-12-01T20:04:00.000-08:00

That is walking from one ocean to another....not really walking across the country...but the equivalent of that on a treadmill.

My brother Mike and his friends have this group called W.I.M.P(work in major progress) started by my brother and then some friends joined in on getting fit....So they decided to do this and I have decided to join them and you can join also...

Here you go...from 12-1-10 to 2-1-11 you need to walk 5.5 miles a day..... That's it...

But it already 12-1-10 I am a day behind so for the next 2 days I will an extra 2.75 miles....I am going to do this....

Some folks are doing push ups or sit ups....that's cool I think it is 200 a day!!

Let's get out there and move!!!

Getting a little tired of the high numbers....

2010-12-01T19:55:00.000-08:00

I can not figure out what in the hell is going on with my blood sugars....numbers that are high like 500+ high...and if you know anything about diabetes you know that this is bad....problem is I don't feel anything when my sugar is high.

Today it was 581 this morning....I finally got it down to 87...I ate and then by the time I ate again it was 105....I had 2 little buffalo chicken wraps with some corn chips...I bolused for 40 grams of carbs which may have been a little to much...I bowled 3 games and came home..that was 3 hours after eating...checked my sugar it was 380....WTF....

Sharon thinks that I may have a serious allergy to Gluten...that maybe true because I ate an apple and cottage cheese for lunch....and the sugar stayed low...I had a snack when I got home of a yogart.....will see what it is before I go to bed.

The sad thing is I really try to watch what I eat and still have these highs...good news is that I am seeing a new Endo doc in the next two weeks....maybe they can help me!!!

Today is Pay It Forward DAY

2010-12-01T12:20:00.000-08:00

BEST WAY TO PAY IT FORWARD???......

SIGN YOUR DONOR CARD!!!!!

WE HAVE OUR MARCHING ORDERS FROM STEVE!!

2010-11-29T19:17:00.001-08:00

This is one of Steve's last post on his blog!!!

YES I COPIED IT WORD FOR WORD!!!!

I find it chilling that this is what he was working on...

And I for one am going to see that this goal gets accomplished!!!

Will YOU HELP!!

A Cure for Heart Defects!
November 26, 2010 by Steve

“I believe that this nation should commit itself to achieving the goal, before the decade is out, of landing a man on the moon and returning him safely to Earth.”
– President John F. Kennedy, May 25, 1961

On September 29, 2010, Fran Visco of the National Breast Cancer Coalition appeared in a video posted to YouTube. It contains a powerful message.

“We can’t count on hope as a strategy to end breast cancer. I’m giving up hope, because hope is not a solution. Hope will not end breast cancer; we need a plan, a goal… a deadline.”

What a statement… and what a shift in thinking! Think about what she is saying: HOPE CAN NOT CURE OUR DISEASE. Hope is a good and pure thing, a friend we hold close in our most desperate moments. Take note that she did not say “I am giving up on hope,” because she’s not. Hope is what keeps us going when the world crashes down around us. But we need to realize that hope alone can not fix defective hearts.

A popular phrase that you may have heard is “We will cure (chronic illness) in our lifetimes.” The problem is, all generations living with the chronic illness use that phrase as a rallying cry. Time moves on, the older generation passes away, but the phrase is still being used. Eventually, the urgency disappears. There is no real urgency for beating the disease… just an empty promise that it will happen “in our lifetimes.”

In the same vein, “Awareness” is not an endpoint for the Heart Defect community. What good is awareness if it does not bring people to take action? We are winning – the number of deaths caused by Heart Defects is dropping. The American Heart Association estimates that in 2005, 3,500 people died from Congenital Heart Defects. That’s the most current statistics that they have available, so the number may even be lower today. But that’s not acceptable. That’s still 3,500 of our friends, our families, our sons, and our daughters – dying each and every year. Being “aware” of a Heart Defect isn’t enough, so perhaps it is time to redefine ourselves, and rethink everything we’re about, everything we are fighting for.

It’s time to declare war on Congenital Heart Defects. All out, bare knuckle, unrestricted mortal combat. Like Miss Visco said, there needs to be a plan, a goal, and a deadline.

THE PLAN:

POINT ONE: To find new medical and surgical options to increase the survivability of Congenital Heart Disease;
POINT TWO: To research the occurrences, causes, and possible prevention of Congenital Heart Disease;
POINT THREE: The reduction and elimination of mortality and disability associated with Congenital Heart Disease.

THE GOAL: To eradicate Congenital Heart Disease.

THE DEADLINE: November 29, 2024 – the 80th anniversary of the first Blalock-Taussig shunt.

So how are we going to do it?

I can’t answer that. I am not a doctor or a scientist; I have Bachelor of Science degrees in History and Political Science. And to add to the challenge, we are going to have to do this all by ourselves. If we’ve proven one thing, it’s the fact that Congenital Heart Disease is an invisible disability and without a unified approach, we have no voice. For several years the Adult Congenital Heart Association (ACHA) traveled to Washington DC to lobby for a federal level registry of Congenital Heart Defects. Only after we united with seven other nationally recognized Heart Defect Support groups and formed the National Congenital Heart Coalition were we able to get legislation introduced in Congress and eventually inserted into the Patient Protection and Affordable Care Act.

So lets put our heads together again. It will be up to us to not only do the fund-raising, but to be the first ones to give – give our money, give our effort, and give our time. We have to gather the resources, fund the research, educate the public and lead the charge. If we don’t support our own cause, why should anyone else support it?

In 1961, President John Kennedy challenged the nation to put a man on the moon before the end of the decade. Back then, we could barely get a rocket off the ground, much less think about going that far. Along the way we won some major battles and we lost some good people, but in July 1969 the Apollo 11 crew landed safely on the moon and came home.

We have to be willing to put everything we have on the table and draw that last card. It could all blow up in our face…but we could also hit the jackpot!

Let’s rise to the challenge. This is our Apollo program, our impossible dream.

Let’s go to the moon.

RIP Steve

2010-11-29T15:49:00.000-08:00

Last year I introduced you all to a friend of mine named Steve who was an activist for many of people with CHD Congenital Heart Defects. Steve passed this morning so I am posting a note here.

Today I am Grateful that I had the opportunity to meet Steve and to call him a friend!!

Rest In Peace Steve.

His Blog was called the Adventures Of A Funky Heart

Please stop testing me to see if I have changed!!

2010-11-28T07:56:00.000-08:00

Dear G-d,

Hey its me.....I just have a little favor to ask of you...I know that you like to occasionally throw one or to test my way each day to make sure I can keep my anger and mood in check but...I really think you have done enough testing for one day and it is not even noon.

OK so I was up till 4AM....my fault I guess...this new heart does not like it if I nap for more then a half hour. However, first the coffee that I set up ends up with the grinds all in it...as I was going to run it again in a new filter the other one broke before I could get it to the trash...so I decided to just load the dishwasher and clean things up...what happens...I smash my little finger in the door way while moving the dishwasher...people need things but...instead of asking me to find it so I can move things along...they ask the boy (not his fault but he gets stuff so mixed up) that I end up getting interrupted from what I was doing to handle the situation. I would like if I can at least get 30 minutes of meditation in without being disturbed.

As I say...I keep on trying....but sometimes I think you get to much of a chuckle watching me with my daily struggles.

And finally G-d if The Steelers could play one game without giving me a heart attack that would be great.

Thanks and have a great day!!!

Baby Steps

2010-11-25T22:01:00.000-08:00

I always say that I am in a catch 22 situation when it comes to my moods...

If I don't talk....there is something wrong

If I joke and tease...there is something wrong

If I am to happy....there is something wrong

you get my point.

Well I was off last night....call it what you want...but I was off!!

I was stressed and I have not been stressed in a couple of weeks...it took me by surprise.....and I began to think what was the trigger...

And I finally just came to the conclusion....that there are a lot of folks out there who are more then willing to tell you how to fix yourself...but can not for the life of them fix them....

I guess that I need to learn to be more tolerant of these people but on the other hand...there are many different things that they can do to make themselves better...but they would rather use every excuse in the world to justify why they can not change....and I guess I find that a little more then annoying. Sorry, I realize that there are some people who have disabilities that they can not change...I am not talking about those folks....but rather there are some educated people out there...who like to tell everyone else how to live their life or do their job or raise their children or clean their house or deal with a spouse. But when you try to offer advise they are usually the first ones to get pissed.

Look we all have issues in life that we need to work on.

But if you flat out refuse to work on your issues or ignore them....then I guess I should just hold my tongue.

Just keep this in mind.....I am working hard on my shit and some times I may get in a pissed off mood when I see and think about people who are like a hamster on a metal wheel running...running....wasting energy....running...but not reaching any goals.

Yes, I have to remind myself that I need to work on me and not let others around me interfere with what I need to do to make myself better...It not going to be done in a day...it is a process.....it is going to take baby steps.

Tradition!

2010-11-25T21:54:00.000-08:00

OK so everyone has them...but my question is how do you start a new one without PISSING people off...

When is it OK to make a change?

And as life changes is it OK to make new traditions...is it OK to say that some Traditions are just not working for you anymore?

Does it mean you care less about those you love if you want to change the way things have always been?

Don't your needs change as you grow older?

Just some questions that I have been pondering.

Let me know what you think.

Did you think that I would not have a blog post for Thanksgiving Day

2010-11-24T19:59:00.000-08:00

Some will use the day to over-eat
Some will use the day to get some extra sleep
Some will use the day to watch Football
Some will use the day to plan Black Friday at the MALL...

But the day is called Thanksgiving...a day to pause and give thanks for all the gifts in our lives.....so again here is what I am thankful for this year....

1. That I have reached this time of the year again.
2. That I still sit at ZERO rejection.
3. That I have great family and friends. My family of origin and those that who are
family by choice.
4. That I have made new friends...and they are a big part of my life.
5. That I have now begun to pay forward to other since I was given the wonderful gift
of life.
6. I am grateful that I have made positive changes in my life.
7. I am Thankful for my donor and I pray that his family realizes what a wonderful
gift that their love one gave to not only to me but to several others.

Finally, I am Thankful that I have this Blog and that I have readers...I know you are out there even if you don't leave comments.

Lets change that now....you tell e what you are Thankful for this Thanksgiving!!

Sunday the end of the weekend leading us in to a short week!!!!!!!

2010-11-21T20:50:00.000-08:00

Monday the only good thing about this one is that it starts a very short week for most people.

Today I attended my first TRIO meeting a lot of folks I knew where there so I did not feel like a stranger....out there and alone.

The talk today was on Kidney and Pancreas Transplantation.

I learned that since I am doing so well after my transplant for my heart, and the fact that the anti-rejection medication for a pancreas transplant is Prograf...which I am already on, combined with the fact that my Kidneys are working well....makes me a an excellent candidate to be evaluated for a Pancreas Transplant.

The wait if approved would be rather short as I do not need a kidney or liver transplant which are usually done with the pancreas. At the most I would be looking at a 6 mos wait...a brief few days in the hospital and that is it.......

What does it all mean....if I go and get evaluated...and if I get listed...and if I get a pancreas....I could be free of my insulin pump and as a matter of fact insulin altogether....I see this as a good thing because as we all know there are some nasty things that can happen to your body if you have diabetes which is not under control....I try really hard to keep mine that way but even the best plans go out the windows.

I think that I have made some positive changes with my eating habits since the heart came in March of 09...I am exercising more(note tomorrow Rich and I return to the Y), I am meditating and writing my blog and for more private thoughts in my journal. I think I see this as a possible step in extending my life.

Like I said it is all in the infancy stage and I have made no decisions yet...I will however be gathering more information before my appointment with the Endo-guys at UPMC on December 15th,

What I need to remember is that I am not the one guiding this ship....and I leave everything in G-d's hands...I believe that he will guide me in the right direction.

Stay tuned....I know whatever I decide to do it will all be posted here...and I will not change the name...because ALONG THE PANCREAS TRAIL does not seem to be have the peppy step in the title...

The pancreas may do a lot of things but hey, let's face it if you don't have a heart you have no use for anything else.

Today I am grateful that I went to that meeting.

Thank G-d I live in PA and not AZ

2010-11-20T20:46:00.000-08:00

Someone posted this over on one of the groups I belong to on Facebook.

A man in Arizona is being denied a life saving transplant....not because there is no donor but rather the Governor of that Arizona has decided that the states medicaid program should not pay for Transplants.

WTF..WTF..WTF AND IN CASE YOU DID NOT GET MY SHOCK OF THIS ONCE AGAIN WTF!!

For the last year we have been slammed by certain Political Parties..."The passage of health care reform will lead to Death Review Panels....etc, etc, etc."

I would just like to point out for the record that this GOVERNOR is a Member of the GOP!!!

I usually don't like to post about religion or politics on this blog but when this was sent to me I knew that I would break this rule.

It is just wrong that we are denying someone the gift of life because they can not pay for it themselves....what the HELL has happened to this country???? I bet this Governor is PRO-LIFE and ANTI DEATH PENALTY...But it is O.K. to let this man die because he does not have private health insurance?

Everyone deserves the right to life...regardless of the cost!!! O.K. so what happens next in ARIZONA....are they going to deny treatment to everyone who is on their state medicaid.....Here is a question MR. DIPSHIT GOVERNOR..."WHY DOES YOUR STATE OFFER MEDICAID TO THOSE WHO HAVE NOT INSURANCE IF YOU ARE NOT GOING TO LET THEM GET THE LIFE SAVING TREATMENT THAT THEY NEED?"

You know what makes me angry....besides stupid people....We as Americans are sending our young people and our money all over the world to help those who can not help themselves and to defend them so they are not kept down by dictators and hostile governments yet we TURN OUR BACKS ON OUR OWN CITIZENS...WE GO AND GIVE MEDICAL AIDE TO THOSE IN FOREIGN COUNTRIES...BUT IGNORE THE SICK HERE...WE FIGHT FOR EQUAL RIGHTS FOR THOSE WHO HAVE NO RIGHTS...BUT YET WE DO NOTHING ABOUT INJUSTICES LIKE THIS!!

Every American should be outraged and get on their knees tonight and Pray..pray...NO BEG G-d to keep you healthy...especially if you live in Arizona....but just remember we never know when this will happen in our own individual states.

Today and tonight I am grateful that I got my life saving organ...please pray that Said DIPSHIT GOVERNOR changes his PEA SIZE MIND!!

I Promise that tomorrows post will be a lighter one.

what am I grateful for today...

2010-11-19T15:48:00.000-08:00

That the biopsy that I had yesterday came back again showing ZERO rejection.
That makes 20 months with no sign of rejection.

That is good

That is great

That is Awesome..... no wait...

IT IS FREAKIN AWESOME....and that is why I am Grateful!!!

May tomorrow be a perfect day...

2010-11-17T21:16:00.000-08:00

Oops, I just looked at the clock...seems like tomorrow is already here....so hopefully today will be a perfect day.

I will be getting up at 5AM which at this point is 4 and a half hours away to shower. I will get on the road by 5:30 and head off to pick up my oldest son(Rich is a young man that I worked with who has become a member of the family...he wanted one and we had the room.) He and I will then travel in to Pittsburgh where I have an appointment at 7:40 at the transplant clinic for my next biopsy...after that we will go to the cafeteria to get something to eat and visit with my friends from TEAM PITTSBURGH, who will be selling various things to help raise money for the next games....at 12PM I have an appointment with the lung doctor...He needs to see me since I have been on the C-pap machine and medicare says he has to see me within 90 days of using the machine. From there we will go see the wonderful Dr. Ellen, who will help me put the thoughts and actions of the last week into perspective. After we will go to Kosher Mart to get Sharon somethings and then to Pinsker's as Rich would like to get something Jewish for Sharon for the holidays. Later Rich is going to come set up the flat screen high definition tv that we bought off of him....he went and got a bigger one so he had to get rid of the old 32 inch one.

Rich was is in the service as a reserve...he was deployed to Iraq in January of 09...he knew nothing about the transplant till May after it was all over...to say the least he was a little upset with us for not telling him...he had enough on his mind at the time so we did not tell him!!

I know that everything with the Biopsy is going to be fine I have had 19 months with no sign of rejection..so unless there has been a major change(which there has not been since I am still on the same meds and the levels were fine a month ago when I got blood work done) I see this as nothing but routine. The C-pap machine is doing what it needs to be doing...so I see the second appointment again as routine....and Dr Ellen and I have been making a lot of progress over the last year so I look forward to our sessions.

So what am I grateful for today....

The Doctors, nurses, lab techs and the Transplant Coordinators at the Heart Center who have taken great care of me since I met them all in January of 2009.

The Doctor, nurses and lab techs at the Lung Center who have taken care of me since early 2008.

Dr. Ellen who I met on March 3, 2009 and only had one other session with me before the Transplant to at least begin to help me make sense of things..but who has since the Transplant forced me to take a good hard look at myself and the things that I needed to deal with in order to be not only happy but healthy. I love the fact that she holds nothing back and that our style of counseling kinda are similar..ie..we both call them like we see them...and she is not afraid to call me on my own Bullshit when I need to be called on it.

Finally, I am grateful to have Rich and his son Tyler(who by the way calls me PAP...I am way to young to be called PAP) in our lives...family is what you make it..I have my family of origin...I have my extended family...and then I have the family that I created by allowing those who need one to become part of mine. I am grateful that Rich is back home safely from the war....he may still be deployed again...I am grateful that he is always willing to help his "DAD" out whenever I need him. He has been a blessing in my life as well as Sharon's and Evan's.

I Laghed my A$$ off Tonight!!!!!

2010-11-17T20:56:00.000-08:00

As I stated in my last I bowl....tonight was the league of mixed folks...young and old..Jews and Non-Jews...it started out as a league for the a couple of temples in the area and now is down to this mixture.

I fit somewhere in the middle of the age range....not to shabby!! I occasionally go out to dinner with what I like to call the under 30 group...well to be more accurate it is more under 29 group. There is A&W, Jdubau, Cupcake, and just added to the group tonight THE ZUES. Tonight we met for dinner at KING'S and then headed off to the lanes. As luck would have it Cupcake and Jdubau were bowling my team and A&W and The Zues were on the next lanes. Some how the jokes started flying and the quick witted responses began to happen during the second game.

By the end of the 3rd game we were all laughing and joking with each other. It made me realize that I had not really laughed like that in a couple of months. It felt good and I enjoyed it...even the part when The Zues called me Old As Dirt!!! Jdubau chimed in with your OAD...

Well this OAD guy is very grateful to have these young friends in his life...because when I am with them...I feel younger and for the most part I feel young to start.

I am so glad that I joined this league and met these fine outstanding...although slightly off their perspective rockers...young people.

So to the 4 of you I say Thanks and I love you guys.

Fun day at the lanes.

2010-11-16T18:09:00.000-08:00

It really does not matter how well I bowl....because lets face it if I was good I be out on tour. But instead I am an ok bowler...today I bowled a 105 and 101 with a 170 tossed in the middle so that I am able to keep my average.

Today I bowled with TEAM PITTSBURGH we are transplant recipients, who participate in the Transplant games. Then things that it does not matter who is bowling who...there are no prizes in the league...but we do cheer for each other. Let me just say we cheer loud and proud!!! Usually the lanes are empty as the afternoon crowd is going home and the evening leagues have not started yet. Not only do we cheer for each other during the games, but we celebrate every milestone.....Birthday....Transplant Anniversaries, Good Medication Checks....we are just living life and grateful that we are here to do it.

I encourage you to check out the web site. The next games will be in 2012, hopefully they will be here in Pittsburgh, but regardless of where they are we will need to raise some money..so if you would like to make a donation that would be great. Just put Along the Heart Trail in your memo line of your check.

Remember you can make a difference by being an ORGAN DONOR so sign up today!!!

I have changed my mind.....yet again!!

2010-11-10T10:14:00.000-08:00

Ten days ago I was going to shut down the old Heart Trail site. It felt to me that the site had done all that it was supposed to do and more.....but I have decided that it had not. It was great keeping a record, which I will always have of the journey leading up to and the first 19 months after the transplant...and I do realize that occasionally there will be people who will receive a suggestion to come and look at this BLOG especially if they or someone they love is looking to be evaluated for any type of transplant.

So with that said...I am going to keep blogging about this experience, because as I have discovered in the last 10 days the journey is never over...and like my heart it just keeps going on one beat at a time.

I hope that you will continue to read it and support me.

THANKS

All I can say is I am trying my best

2010-10-31T09:32:00.000-07:00

Like the song goes I tried my best but my best is not good enough. The more I try to make positive changes in my life it seems the rougher my life gets and in the end I say things that people don't like or want to hear.

It is a circle that never ends!!!!! You all know what I am talking about. I can't do it anymore and I won't do it anymore.

I am feeling like it does not matter how hard I try that I will never be able to get it right. I don't want to try anymore.

I have been extremely emotional the last couple of weeks and I can't put into words why it is happening it just is happening.

So I am going to take sometime and think about what is going on in my head that has me feeling this way. I will not be blogging during this time. I think this blog has done all it was designed to do.

Take care of yourselves and each other!!!

19 months how should I celebrate it!!

2010-10-25T18:56:00.000-07:00

Tomorrow marks 19 months since the transplant. How should I celebrate it??? I will go to work, go bowling with Team Pittsburgh, going out with Evan and his friends for dinner and bowling. So I will celebrate by living a full day!!!

It is okay to take a break....and not feel guilty about it!!

2010-10-22T15:43:00.000-07:00

I am the type of peson that once I make a committment to do something I usually do it regardless of how I feel....I don't like having my time wasted and therefore I hate wasting other peoples time.

But this past Wednesday I decided that I was going to break my own rule....as I have written before I am now eating gluten free.....so it is mostly veggies, fruits, nuts and berries with other forms of protein like chicken and fish....well there is also a downside to this type of eating...sometimes the stomach does not feel all that great and it gives you a kick in the butt. So this Wednesday I did something I usually do not do.....I did not go to Hebrew Class....I did not go bowling.....I basically to Evan to and from school....and later went out to get his Suit from the cleaners and picked up his medication and got all his forms filled out for his weekend away....other then that I slept and relaxed in my chair................Thursday came and I felt a lot better. Truth be told I still feel a little bit guilty...but I am learning to forgive myself. To that end my plans for this weekend is to do nothing that I don't want to do....and do the things I want!!

Have a great weekend!!!!!

Letter G brings you the word of the week

2010-10-22T15:20:00.000-07:00

Gratitude is the word for the week......As I was meeting with the wonderful Dr. Ellen last week we talked about all the events of the last couple of weeks......I will not get into the details of what they were here....but let us just say rough does not even begin to describe it. So after our session Dr. Ellen wrote down one word on a slip of paper for me to keep and look at when things are getting tough....

that word was GRATITUDE .......... Why, because when things get tough I need to remember where I was and where I was heading on March 26, 2009, and then I will remember the sacrifice that another family made for me.....I should feel nothing but Gratitude.

Donor Family

2010-10-20T19:14:00.001-07:00

I have just written my second letter to my donor's family. I just told them how grateful I am for the gift I have been given. I did tell them that the loved one's heart and my body are getting along just great.

This is the second letter...and I apologized for sending my first letter so soon after the transplant...I told them that I was excited about getting a life but I did not stop to think about their grief.

My hope is that I get a response back. It would be nice.....But the choice is theirs.......May God move their hearts to contact me.

why??

2010-10-11T21:15:00.000-07:00

I am writing this post in red....why? I recently attended a conference that spoke on the lower rate of organ transplants in minorities. I knew that organ donations are lower in other ethnic groups but what I heard shocked me. That when most African Americans are first put on dialysis they are not even told about transplantation. WTF is that about.

There are a lot of misconceptions in various ethnic groups about organ donation and organ transplants.

So what can we do about this....one word EDUCATE these various ethnic groups. By talking to them and giving them resources such as C.O.R.E.

so what have we learned today.....Education never stops and this type of Education CAN SAVE SOMEONE'S LIFE!!

Detoxing is a Bitch

2010-10-11T21:01:00.000-07:00

As I stated in an earlier post I had to once again Detox my body after I fell off my Gluten Free Diet. I began detoxing yesterday and let me tell you it has been rough. I have not perspired so much in my life. My sugar levels are coming down but both yesterday and today I had a few lows. But the sweating is what is killing me....I realize that it is the poison coming out of my system still I am sweating like a ran a marathon. The only good thing is I know that this to shall pass.

It is our actions of yesterday that we pay for in the future.

The things you can do just by asking.

2010-10-10T12:22:00.000-07:00

I was at an event at a local Temple one Saturday Evening. As I was leaving I saw a man with a walker. On his shirt was a pin that said ask me about my organ donor and on the other side of his shirt was a picture of a young man (I thought that it might have been his grandson) To my surprise Jack told me that he had had a kidney transplant and that the picture in the pin was his organ donor. We started to talk and he asked if I was interested in becoming a volunteer at C.O.R.E. and if I was involved with T.R.I.O. and if I bowled. Yes, no, yes were my answers. So from that one question I am now a volunteer for C.O.R.E. I am joining T.R.I.O. and have become a member of Team Pittsburgh( transplant Olympics) bowling team.

So the morale of the story is.....that one simple questions can make a GREAT BIG change in your life.

Once an Addict....always an Addict

2010-10-10T12:07:00.000-07:00

This is a very important lesson that I have learned this week. I started a Gluten Free (GF)Diet at the beginning of June. I fasted for four days from foods except protein drinks and fresh fruits and veggies. It was hard at first finding things that were (GF) that tasted good but I did and even though the cost of eating this way is expensive I felt better. People would offer me all kinds of foods. I would politely decline and explain that I was (GF) and then I would talk about how my energy level was up and my sugar down and my moods a lot better.

However, last Thursday I just wanted a veggie and cheese sub so I ordered a half for lunch. What happened next is what I knew would happen. I began a 2 and a half day binge of anything that had flour or processed ingredients. The results where mortifying. Sugar out all over the place with high readings and then crashes that had me shaking like a cat in a roomful of rocking chairs, my energy level down and my mood let me just say that I can only compare it to the worst case of PMS you could imagine. So what did I do. I got up this morning and started the detox again. Simple protein drinks for breakfast and lunch. Snacks of nuts, fruits, and veggies and a dinner that will be well balanced. Finally lots and lots of water to flush out my system.

What have I learned from this? Great question. I learned that like any addict that has a problem I need to stay away from the stuff. And also like any addiction I need to take it one day at a time.

CPAP Machine, O2, and BIG BROTHER!!

2010-08-27T09:02:00.000-07:00

I had a sleep study done at the beginning of August....received a call saying that I should think about a second study with a CPAP machine....hell yes I will try it...why would I not....I have a new heart. Second study a little over a week ago....call you did well with the CPAP would you be willing to try it at home......DUH why would I have bothered to have the study done if I was not willing to use it at home???

Now my CPAP arrived today...not the one I will get to keep but the one medicare insist that I have for 30 days....it has a wireless modem so they can see how many hours I use it!!!

BIG BROTHER IS ALWAYS WATCHING YOU!!!

I am back

2010-08-17T12:34:00.000-07:00

I have not been able to post recently....why....because I forgot my password and just figured it out.

So let me share some stuff.

I had a biopsy on August 5th and the results were great.....zero rejection......do a dance!!

I had a sleep study done and tonight will be part two where I get fitted for a c-pap machine....Hell don't want to damage the new heart now would I.....NO!!

so that is the updates will talk to you all soon.

Welcome back

2010-06-07T13:10:00.000-07:00

Before you say anything I know I have not been here in along time.

So here is the facts:

I have been suffering since December with shoulder and neck pain...we can not find a reason for it....yet I have a doctors appointment next week with yet another doc. Hopefully this will help find a solution. The pain is horrible and it has made me very sad.

However the good news is there is still no signs of rejection of the heart!!!

I failed!!

2010-03-10T14:27:00.000-08:00

Nothing serious....I failed at staying away from Facebook and ACHA message board...Can't help myself..they are a good way for me to inform a lot of people of things that are going on in my life.

So what is so important for me to still be on the computer.....I am 11 1/2 months post transplant....so far there has been no sign of rejection...which my therapist Ellen says is "Fucking Awesome!!!"

I have done more in the last 11 months then I could have dreamed I ever do.....OK shoveling all the snow sucked. But just having more energy then I did a year ago is wonderful.

Now that hopefully the winter from hell is over I can get back to my daily walks!!! I miss them.

So while I may have failed at breaking the addiction to Facebook and ACHA...I still get a passing grade for being here!!!!

Look our Mickey!!

2010-01-27T07:50:00.000-08:00

We are getting ready to go to Disney on Sunday....a lot of last minute shopping and packing..so I am running around again like a mad man.

I just want to get there for a few reasons....

It is warm.

I can get a lot of walking in when we are there.

and I don't have to cook for a week!!!!

After many nights of with Insomnia...what's a guy to do!!!

2010-01-26T00:53:00.000-08:00

I have spent many of nights just staring at the walls and ceiling. It is during these times that my mind starts to play tricks on me. I sometimes will come downstairs and get on the computer like I am doing now...I check my e-mail, facebook, the Adult Congenital Heart Association message board and some other bloggers that I follow. Other times I come down stairs grab my Zune and hope that it is charged enough to get a few hours of music listening in ( I have not yet down loaded any pod cast yet). But more often then not I just sit or lay there thinking about my life.

Sometimes it is about getting things done here around house. Sometimes it is about the things I need to do for work. Sometimes it is about my relationship with Evan and how I wish it was better....sometimes I think about how it would be if he did not have his Autism. Sometimes I think about my relationship with Sharon and how I wish it was better...don't get me wrong it is not that horrible...we have been through a lot in the almost 27 years(hell I am getting old) that we have been together...the biggest being the transplant. and sometimes I think am I doing all I can do with my life now that I no longer have the heart issues holding me back. Yes I am still diabetic but that never stopped me from doing stuff...It is a pain in my ass and it is a battle to manage it but it is not the same.

So tonight while I was thinking again and replaying some of the same old tapes in my head I decided to come down and get on the computer and take some steps in putting a plan into action. I must admit that I am a little pissed because my Zune just died on me..really should recharge it after my walks or my insomnia nights. Anyway I have decided that there are a few changes that I need to make in my life and I figure if they are written down here that I can revisit them, plus you all can keep me accountable to what I write here. So here goes:

1. I am going to tune out for awhile...i.e. no facebook or message boards for the next month. If people leave me a message on either one of those sites I will be notified by e-mail. I am going to only check my e-mail once a day and make responses as soon as possible.

2. I am going to turn my personal cell off for 25 hours each week (a lot of my friends will understand this)

3. When I first came home from the hospital I was given a Kindle and I really have not used it that much so instead of watching tv or being on the computer I am going to read more.

4. I am going to insist that my family have one night during the week where we all spend time together either watching a movie or playing a game....but not everyone scattered all over the house watching different things in their rooms. Also during this time I am going to ask that all cell phones be shut off. I will have to keep on my work one as I am required to be available to my clients 24/7 unless I am on vacation.

5. I have talked and some have suggested that I write a book...I actually wrote and outline but never started it. I am going to start it. So instead of stroking the keys on facebook and message boards I will be spending time on the book.

6. This blog is about my needing the transplant and life after it..I am not going to take down the blog...I will however be posting a lot more then I have been.

7. I purchased 3 journals after the transplant..wanted to write down shit that I did not want to share here or on facebook or msg boards....have I done that no...am I going to start yes.

8. I need to get my exercise groove back on...it has been missing for awhile..partially because of the weather and the issues I am having with my shoulders.

9. I have a DVD that I got to years ago to learn Tia Chi...it is still sitting unopened but will not be as I am going to look at it today...when I get home from picking Evan up from school.

10. This is hard for me to say but I need to just chill and not let the little things bother me...this is especially true in interacting with Evan. I have got to learn to accept that he is not your average 17 teen year old. I know it is frustrating for him which then gets him anger and then I get frustrated and angry it is a stupid vicious cycle that needs to end. This will also help with my relationship with Sharon as my Frustration and Evan's Frustration with each other always put her in the middle.

Well that is my list...hopefully once I begin to make these changes I will not have that many sleepless nights again.

Happy Birthday Evan

2010-01-19T12:38:00.000-08:00

Evan is 17 today.....so what does that mean...well he is becoming a man and I now have the energy to keep with him and his activities....I use to sleep whenever I took him to his youth group meetings now I stay awake.....we can do the Wii and I can sometimes beat him at different games...I can toss the football....I can help him clean...If he needs the help although he should do a lot of it on his own...we now shovel snow.......

Anyway...I hope that we can do more physical things together this year as I continue to get stronger.

Happy Birthday!!

Evan!!!!

Second round of Cortisone was given today!!

2010-01-14T19:51:00.000-08:00

I am still having a little pain in my left shoulder...it was treated last week with a cortisone shot. My right shoulder received no relief from that injection, so as planned I went back to the Doctor today to get an injection in my right shoulder. The good news is the major pain goes away right away. However not all the pain goes..certain movements make me shiver with pain. Dr J. also wants me to use and gel but it is an anti inflammatory so before I can use it I need to check with the Wonderful Colleen (transplant Coordinator) to see if I am allowed to use it. As Dr. J stated. " We don't want to do anything to hurt your heart."

Keep you all posted!!!

RIP Steve

2010-01-14T19:41:00.000-08:00

I received word today that Steve passed away this morning. He was a wonderful friend of many and an advocate for all with Congenital Heart Defects....His lose will be greatly felt throughout the entire CHD community. I am again posting the original post that I used here to introduce you all to Steve.

Rest in Peace my friend....you will be missed.

Steve is a person I know from the Adult Congenital Heart Association. He has a Blog that he writes that discusses Living with Congenital Heart Defects. His Blog educates folks about Congenital Heart Defects not only in Adults but children as well. The thing that makes this Blog special is that Steve links other Heart folks blogs on his site...He always shouts out to what he calls Heart Warriors and when one of us is having a surgery or in my situation he keeps his readers informed.

I wanted to introduce you all to him today because his Blog has been nominated for a 2009 Medical web blog for Best Patient Blog.

Go check it out!!

Congrats on the nomination Steve, I am proud to call you a friend.

What a difference a year makes!!

2010-01-05T20:11:00.001-08:00

I can hardly believe that it has been a year already....no not the transplant but the transplant evaluation...January 5&6, 2009 were the 2 longest day of my life!!!!

Needless to say we all know that everything worked out and I am doing fine!!!!

I posted this on Facebook so I will also share it here:

Dear G-d thanks again for the new heart.....having the energy to try new things and I have done a lot of new things...but snow shoveling is so overrated so if you could turn it off that would be great!!

Thanks, Anthony

P.S. Thanks for the new heart!!!!!

With that being said...what a difference a year makes!!

Sleeping in the Recliner!!!

2010-01-03T17:43:00.000-08:00

I will be sleeping in the recliner until Friday when I finally get to the doctor's office and get 1 shot of cortisone shot in each shoulder. Since moving to the recliner on New Year's night I have managed to get more sleep then I had been getting by being in the Bed!!!

Tomorrow it is back to school and work!!! I am hoping to squeeze sometime in at the Y as well.

Have a good day!!!

UPDATES!!!

2009-12-30T10:08:00.000-08:00

Sorry for the long time between this post and the last one.....time seems to have gotten away from me.

First and probably the most important update is at the last appointment there was great heart functions and again absolutely no signs of rejections....I need to get blood work in January and then the last heart cath and biopsy for the first year of post transplant will be on February 10, 2010. If this goes well and there is no reason to think that it won't then I will have only 4 done in the 2nd year of post transplant.

One of the negative side effects of having 3 heart surgeries and a transplant is that you develop bursitis and my friends I have been suffering long enough...ok not that long but over a month....went to family doc because not only were shoulders hurting but all joints in body killed...blood test and x-rays showed NADA!!!.....Then on 12/22/09.....I fell flat on my back on the ice....went to chiropractor on 12/23 who adjusted my neck and upper back and did some minor tweaking to the shoulders....got a nice rub down after....followed the direction about icing the shoulders as much as possible..still I had no relief.....when I saw him Monday mentioned the shoulders again after another adjustment to the neck.....he felt shoulders had me do some moving and said Bursitis and gave me a number to a doc for cortisone shots....checked with the famous Colleen(transplant coordinator) got the ok for the shots....call family doc yesterday....explain what I want and she says yes we can do that.....long pause....the earliest we can get you in is on the 8th at 7am......I will be talking to him about this after he gives me the shots...I was there a couple weeks ago in a lot of pain and to think I have to wait another week....well lets just say I am not happy...but hopefully the pain will go away....I would like to be able to tuck my shirt in and put my own belt on without asking Evan to help me!!!!

If all goes well I will finally be able to start with the weights which I really would like to do!!!!! I have not really felt like going to the gym because the slightest movement causes great pain..but I have made a promise to myself and my donor that I am going back to the gym on Monday...and I am going to make arrangements to pick up the elliptical that my cousin has offered me so if I can't make the gym at least I will have that at the house along with the Wii fit and cardio.

Well this will be the last post of 2009....I can not believe how fast this year has gone.....It is hard to imagine that at this point and time last year I was blogging about getting ready to go and have the whole evaluation for the transplant....I wish you all a healthy and happy 2010.

Monday after a long weekend and I have to go to the Burgh!!

2009-12-07T13:44:00.000-08:00

That about says it all. I had an excellent time in NYC with Sharon, Ellen and Tanya. But today I had to go get a cath and biopsy done...this was the appointment that replaced the 3 that were canceled by the wonderful Colleen(coordinator superstar) I arrived at 8AM for a 8:20 appointment and finally got in the lab around 11:45 or so......Everything appears to be great as pressures in the heart look excellent and of course we will have the Biopsy results and bloodwork back tomorrow or Wed. I will let you know the Results as soon as the aboved mentioned Colleen lets me know.

That is all!!!

Got the swine flu shot!!!

2009-11-22T17:19:00.000-08:00

Well after waiting and waiting I was able to get a N1H1 shot today....not only me...but Sharon and Evan as well. We are now able to be in crowds and best of all Sharon and I will be safe to be on the plane to go New York in a few weeks.

How would you answer!!

2009-11-19T06:23:00.000-08:00

I attened a class last night where the discussion came up that we are moving medically in a direction with artifical advancements that it is probably going to be a reality that we could live past the age of a 120 or more.

So the question is.....would you want to live that long??

TURKEY DAY WILL BE EXTRA SPECIAL THIS YEAR!!!!

2009-11-17T12:24:00.000-08:00

Well Thanksgiving is a little over a week away.....yes I am getting excited about cooking the Turkey and all the other goodies that I cook for this holiday.....However this year will be special. One is for the obvious reason....I am very thankful for my donor and his family for giving me and my family back my life....It will be a happy day for me, I will be celebrating 8 months since I got my transplant....I find that hard to even comprehend sometimes....I think that at this time last year the journey Along the Heart Trail had just begun!!! IT has been a crazy 12 months....The pre-transplant testing and all nervousness that comes with that!!! The excitement I felt when I got the call on January 23, when we were in Disney saying that I was going to be officially listed when we returned home on the 26. The depression and sense of doom I felt when I entered the hospital on March 20th, thinking I was there only for a few days to get off some fluid...the thrill I got when on March 25th they told me I had a heart.....Going down to the Pit and finally being taken in to surgery just before midnight and feeling a sense of calm. The recovery which at times was difficult but part of the plan....Laughing with Tanya and Ellen, my friends for life who drove down from New York and bought me a spaghetti and meatball dinner.....the meatball was enough for 3 meals...Finally getting to come back to my house with my dogs and the family...The folks at both Pulmonary and then Cardiac rehab that pushed me when I needed it. Returning to work in June and being able to attend the senior dinner and then the zoo trip where I pushed a double stroller around. Thankful that I was not hurt after my car accident on July 21....Although we did have a moment of anxiety. Thankful that in August I was able to spend 10 days at the beach with Evan....getting him up early the one morning to watch the sunrise...meeting a man on the pier who was watching it as well who was a cancer survivor. Thankful that in August I was able to walk a 5k.....something that I always wanted to do!! Thankful that I can go to the Y and work out for as long as I want without getting tired.

I am truly thankful for the second gift of life that I have been given. As a very spiritual person I always questioning why things happened to me and what my purpose was here on earth...learning and perhaps still learning that I may never know the reason. Thankful that I have a story to tell and hopefully my story will help others as they struggle with their journey in life.

I know that I am just running at the mouth...or in this case the fingers!!!!

So let me just finish by saying I am thankful for being alive, having a wonderful, loving and supportive wife, having wonderful friends who I see and those who I don't but we talk over the internet....Thankful that I have people who actually come and read this blog.

Have a great Thanksgiving in case I don't post before then,

Been meaning to update this post!!

2009-11-12T17:21:00.000-08:00

I am nothing special!
I must admit that I was a bit stunned last night at temple...no it was not the service, it is what happened after the service.Sharon and Ev wanted to go get Ice Cream, but we decided to stop into the social hall just to say a quick hello to everyone and then dash off.As, we were talking the mother of a young man who will have his Bar Mitzvah came up and told us that I was her son's Bar Mitzvah project. You see as a young person prepares for his/her Bar/Bat Mitzvah they take on a project that allows them to do some form of Zedeka(giving of gifts, time or money) this young man has been making jar cookie dough..you know the kind that you get all the dry ingrediants that you need to make said cookie...he has been doing it since April around the time of Passover...he has a name for it but I can't remember that at this time but I do know the word heart is in there. His mother wanted us to know because he is donating all the money he raised to the National Transplant Fund...This is the Fund that holds all of the money people have donated to me to help set off the cost of meds and travel and whatever other exspenses I occur because of the transplant.Ok I got teary eyed and told the mother thanks for telling me because I would have been floored to hear this at his Bar Mitzvah.It is an honor to be this young man's project!!

I would like to tell you that Noah did an excellent Job on his Bar Mitzvah!!!
He was pleased to present me with a check for $736.00!!!!

Thank You Noah!!

It has been a very long week!!

2009-11-07T21:17:00.000-08:00

I have been fighting some kind of sinus thing now since last Sunday!!! It hit me and it hit me hard. I managed to go to work the times I needed to go but the rest of the time I was in bed. Finally on Friday I felt good...that is until about 8 PM when that good old fashion pain in my head came back...Spent most of today in bed or relaxing in my chair..I drank a lot of fluid and I made myself some Matzah Ball Soup. It is now after midnight...I took my meds again and did dose off for an hour or so......

Ok I hate being sick..throws my sugar out of whack and makes me cranky or as my family likes to but it "Dr. Anthony and Mr. Hyde" I really don't mean what I say or do and I feel bad but not feeling well and the sugar out of whack makes for a Horrible combination.

Funny thing is while I hate being sick......at least I am here to be sick....did not look that way back in March!!

Whatever this is will pass and then I can get back to the gym!!

Happy Halloween!!

2009-10-30T09:09:00.000-07:00

REMEMBER TO GIVE OUT THE CANDY!!! DON'T EAT THE CANDY!!!! DON'T STEAL YOUR KID'S CANDY!!!!

The break is over!!

2009-10-28T05:31:00.000-07:00

I took about a 3 week break from the Y...I can tell you why....I could use the excuse that I had so much to do, was adjusting to the new school year with the students I work with, taking Evan to therapy appointments. However the truth is that is what would be an excuse.

Being given a second chance at life should not be taken for granted...you need to move your body...you need to watch what you eat....you need to keep your self mentally fit....You need to MAKE the time not FIND the time to do it!!!!

I am going to Make the time.....How about you?

Staying Healthy when in West Virginia!!

2009-10-27T14:52:00.001-07:00

Before my transplant I ate anything I wanted...since the transplant not so much....this causes a bit of confusion for my father in law. Don't get me wrong the man has a heart of gold and would give you anything you need but he is in two words a food pusher. This weekend on Saturday he got some Arby's with cheese for Evan, chicken nuggets (4) for Sharon...for me he got me 2 double bacon cheese burgers from Burger King.....he got them Saturday night and gave them to us when we went to the club to see him....the club that has smokers in it...I sit by the kitchen and he runs the smoke eaters....I don't drink anymore so I sip on Tomato juice......I took the food back to his house and put it in the fridge...he wanted us to take it home when we left so we did not have to stop....when we stopped at the gas station to get Sharon a coffee and Evan a coke I had her toss out the 2 burgers...further down the road the Arby's went as well. I try to tell him that I don't eat that stuff anymore and he gets sad and says he does not what to have when we are there.

He did have yogurt and almonds and juice so I was happy. Oh and he had a cheese pizza that I cooked for Evan.

I did well but may need to have a talk about the double bacon cheese burgers.....I have a 22 year old heart and would like to keep it healthy.

How would you handle this???

Swine-Flu Dodge Ball!!

2009-10-26T10:18:00.000-07:00

This weekend the family and I were going to West Virginia to see my father in law. While there we were supposed to see friends. Friday before we leave the text came that one of the twins has a fever..we decide to still go see father in law. As we are driving there we got another text stating fever was back and stronger. Our visit would be cancelled. We spent the weekend at father in laws house. We enjoyed ourselves. My sister in law called Saturday to say her son has a fever...we were supposed to take some pumpkins over there for the kids from grandpa. We ditched that idea really quick. Had a nice drive home yesterday.....nice visit with the father in law as usual.

I like sports now but Flu Dodge Ball Sucks...Evan was looking forward to seeing everyone and was a little upset...however he got over it......WWE Pay per views will do that for a kid.

Stay well and wash your hands....plus if you are sick stay home!!!

A busy Sunday coming up!

2009-10-14T07:22:00.000-07:00

This Sunday is a spaghetti dinner fundraiser for my transplant fund....I was only out of the hospital 6 days at the first fundraiser in April...I promise I will be staying at this one longer.

However before the dinner, I need to take Evan to religious school until noon....go to the dinner and then take Evan bowling as this is also the start of our new parent/child bowling league.

This upcoming week I need to go get bloodwork.....I would much rather get the needle in the arm then the cath in my neck.

Things are good.... no make that great over the last 7 months.

Just a note!

2009-10-07T11:14:00.000-07:00

Just a note to say Hi!! Things are good!! I hope they are for you!!

It is time to get flu shots!!

2009-10-04T07:33:00.000-07:00

I had already scheduled my annual flu shot for Oct. 15th. When I did the Transplant team was not sure if we should get the Swine flu shot...well that has now been answered and yes..yes we do need to get it!! So now hopefully the doctor will have it!!!! It has to be the shot for both can not do nasal spray...I just feel bad for Evan and Sharon since they have to get them both because of litle old me....

So on the 15th of October Team Pugs will roll up there sleeves at this point we don't know if it will be three or six and take our shot or shots with a big smile on our faces!!!

And the results are in>>>Drum Roll Please!

2009-09-29T18:24:00.000-07:00

My 6 month check up was non eventful!

White Count is back to normal.....++++++med levels are normal...++++ and rejection level is still at ZERO>NADA>NOTHING!!!!!!!!!!!

I AM DANCING IN THE STREETS!!!

Parking is free on Sundays!!

2009-09-27T08:40:00.000-07:00

Went to the Y this morning ..since parking is free did not rush anything. I had a wonderful workout and still find it amazing that I'm enjoying going.

15 cents short equals a ticket!!

2009-09-25T10:11:00.000-07:00

I went to the YMCA today and did my usual hour work out. I had a blast was just cooling down and wiping off the last machine I was on and got my bag and left...It was 12:12pm....I had put 50 Cents in the parking meter for an hour of time but I got a ticket you see I forgot to add the time I would need to change clothes when I got there and my cool down time. The ticket was 3 bucks...now I guess I will have to put in 65 cents so I have the extra time I need.

The good news is I did do my work out...bad new is it cost money...I don't mind the pain..but I hate the paying!!

Have a great day!!

Out of the Burgh before all the crazy people arrive!

2009-09-23T13:37:00.000-07:00

The appointment went well. Got to hospital at 7 and was out by 9:30 there was very little traffic going in and none leaving. Pressures look excellent. I am now on 2 month schedule till we reach the one year mark..2nd year they will be every 3 months and the 3rd year every four months after that no need for them.. I was also given the OK to start lifting weights to bulild up upper body strength.

So let us just say I am doing the Happy Dance!!!

It is time for the 6 month tune up.

2009-09-22T15:15:00.000-07:00

Tomorrow I will get up at 5:45 AM and leave the house by 6:30 AM for an appointment that does not start till 8:AM. I will probably get there early but with the whole G-20 thing going on here in the Pittsburgh area and the protesters who are protesting whatever the hell has them pissed off have already arrived I just want to get in to town and get the hell out of there as fast as I can....Do you blame me???

Well actually tomorrow will end the monthly trips in to the Burgh for Heart Catheterizations and Biopsies...This does not mean I am good to go yet, but I am getting closer. If all goes well tomorrow then I will have a biopsy and catheterization in late November....if that goes well then one late January early February and then the next one will be in March marking the 1 year point.

I don't think there will be any problems tomorrow. I have been feeling great and trying to get my exercise in although tonight I counted housework as my exercise. (cut me some slack the bedroom is up a flight of steps and the washer and dryer are down a flight of steps) I did have some water retention late last week but with 1 little 40mg Lasix tablet that has resolved it self and I am back down to the mid-180's. I am off all non-heart related medications and the ones that I do take I will take for the rest of my life.

I bowl once a week in a league and once a week with Evan. That will change next week when we begin a parent/child league on Sunday nights....then my regular league on Wednesday . I have not gone back to the YMCA yet but that will happen on Thursday right after school. My work schedule so far is great I see students on Tuesday and Friday...These are also days that I don't do the car pool thing so I can hit the Y right after my last class.. and with the weather and leaves changing who knows maybe a hike in the mountains maybe a prescription I may have to force myself to take.

The funny thing is I feel like this whole transplant thing happened a long time ago...but it has only been 6 months. Can't wait to see what the next 30-40 years has planned.

Perhaps they were right...

2009-09-13T16:08:00.000-07:00

When we first started this whole Transplant process the folks that we met with thought I had a great attitude about the whole situation...their concern was how would adjust to life after the transplant. WTF....why would I have a hard time adjusting....I would be healthy for the first time in my life..this was the dream and hopes that I had been waiting for my whole life. It turns out that perhaps they were right...you see I can do more now... I have energy now and sometimes I have to much...

When I was sick we were always on the go. We would go for walks and go bowling and run Evan here and there...Now we don't do to much of anything..I find it very hard...I go for walks...I do the WII and I do move but I kinda get tired of doing things by myself. I found our old GEO tracking device a couple of weeks ago in storage and got excited...I used to hate doing it when I was sick but I did it anyway. Why I guess it was even if I do a little I would give myself some energy when I really had none. Now I got all the energy you could ask for and we have not gone Geo tracking once.

I hate sitting still I want to be moving...I don't know where this comes from..is it real...sometimes I think the last 6 months have been a dream and if I stop moving I will wake and be back to that sickly person....

I thought that by now we would do so much more...hiking...bowling...golfing.....walking...geo tracking....

When I say lets go for a walk even the dogs look at me like.."WTF is wrong with the fat man all he wants to do is move and move."

So if I get angry now it is because I wish we were doing more active things together...this is what I was told by everyone when I need to keep my spirits up before the transplant and during recovery....and I sort of was looking forward to it.

I fell off the wagon....

2009-09-08T20:29:00.001-07:00

I fell off the healthy eating wagon on Labor Day... I started out doing well and had played WII bowling and tennis for 1 hour so I had my workout for the day!! We went shopping at Burlington and then went to the mall....I got a chicken (teriyaki) salad for lunch and a bottle of water. As we are walking around I feel my sugar going south like an Ice Cube in Hell!!!Dashed off to the Dollar store and bought a candy bar...I figured that would get me a quick fix....It did and more!! It opened a whole can of eating every Carb within reach of my hands...ok I also got up to get some but I needed it!!!

So how do you think I felt this morning????? Like 100% certified SHIT!!!! Yep I felt like shit...tired and not wanting to get up.

I have returned to the wagon....next time sugar falls will eat a candy bar or do what I need to do to get it to a safe level...but I will not binge like I did yeasterday!!

Hell to the NO!! I will go for a walk..... eat my almonds.... listen to music....pray....and sit on my hands...but I will not Ever do that again!!!

Just for the record...I have also been with out any type of soda or caffine for the last 3 weeks...I did not fall off that wagon!!

I am nothing special!

2009-09-05T13:11:00.000-07:00

I must admit that I was a bit stunned last night at temple...no it was not the service, it is what happened after the service.

Sharon and Ev wanted to go get Ice Cream, but we decided to stop into the social hall just to say a quick hello to everyone and then dash off.

As, we were talking the mother of a young man who will have his Bar Mitzvah came up and told us that I was her son's Bar Mitzvah project. You see as a young person prepares for his/her Bar/Bat Mitzvah they take on a project that allows them to do some form of Zedeka(giving of gifts, time or money) this young man has been making jar cookie dough..you know the kind that you get all the dry ingrediants that you need to make said cookie...he has been doing it since April around the time of Passover...he has a name for it but I can't remember that at this time but I do know the word heart is in there. His mother wanted us to know because he is donating all the money he raised to the National Transplant Fund...This is the Fund that holds all of the money people have donated to me to help set off the cost of meds and travel and whatever other exspenses I occur because of the transplant.

Ok I got teary eyed and told the mother thanks for telling me because I would have been floored to hear this at his Bar Mitzvah.

It is an honor to be this young man's project!!

HI Ho...back to the YMCA we go!!

2009-09-01T16:02:00.000-07:00

In June of 1998 Sharon got us a family membership..September of that year I went on Disability...we used the Y for swimming and youth sports for Ev. We would also go and use cardio equipment...but the further my health went down hill we used it mostly for Ev....So know last December that I would have the Transplant Eval and all things were pointing to the transplant we canceled the Y membership.....Today I went to register us and the lady behind the desk was you all were members for a long time and then you quit in December..I relayed the story and she said since it was less then a year she was going to charge registration fee for a Second year membership which end up saving us close to 60.00 dollars in registration and first month fees.

So now it is back to the Y to switch up my cardio and begin weight training!!!

For fun and exercise today I took Ev bowling...we had not bowled since his 14th birthday..he and I hopefully will be in a family league on Sundays and I am in a league on Wed. Nights...so we brushed the dust off the bowling balls..Ev averaged 70 for the three game...I averaged 108 thank goodness I had 140 the second game or it would have been bad!!!!

Are old habits really that hard to break?

2009-08-31T19:09:00.001-07:00

Are old habits really that hard to break? Can you teach an old dog new tricks?

Since the heart transplant I have taken a serious look at these 2 questions and for mself the answer to both questions with out a doubt are YES!!! I was a person who never liked the words diet or exercise...But, now I find myself eating better and actually enjoying exercising!! My Therapist the wonderful Ms E. says it looks like I have found my nich regarding my health. That these changes have allowed me the opportunity to come off some anti-depressant medication and some anti anxiety meds. Right now the only meds that I am on are the ones that I will be on for the rest of my life. So have I changed yes!!

There are others who I think still view me as the sick child or adult that they have known most of their lives..if not all of mine. Don't get me wrong these are folks who really care about me, but sometimes the support for the new me does not come shining bright when I would like it to.

So when I was at the beach a couple people were concerned that it was hot and that I should not be out in the heat!! Guess what...I wasn't I would try to walk daily either in the morning or at night...during the hottest parts of the day I was in the camper with the AC on...it was so hot that only one dinner was cooked outside. When the cool breeze came off the bay guess what I built a fire and sat in front of it and enjoyed myself and had a good time with Evan!!!

When I announced that I was going to do the 5k walk...My mother told me don't over do it...she said that I did not have to finish it and to be careful as she thought I only was working out at rehab...she did not realize that I had been walking all around Jeannette and Nut mountain to get ready for this race!!!

Another example happened tonight..I told the boy at 6:20 that I was going for my 3 mile walk...I had my cell and that I would be home by 7:30....Imagine my suprise when I took my phone out to check the time and he called me 7 times..a call fron his mom broke up a few of them....worried I called him and asked him what was up? "I'm hungry!" he said. WTF>>>these calls started 5 minutes after I left...I told him there was food in the house and go head and eat!! When I got home he told me he thought I was gone to long and something could have happened since I did not answer the phone....explained that hard to feel the vibration when I am walking..can't hear ringer since I have the I-pod in my ears!!!

Basically...you shouldn't be over doing it.....you could get sick!!

I realize to those who have been around me my whole life or their whole life that they are used to seeing a sick person.......to them the heart transplant was only 5 short months ago and I should still be recovering. To me it feels like years since the transplant...I have moved on to the second part of my life with a new out look and gratitude that I do watch what I eat and I do exercise. So know that I know when I can press myself and when I should rest.

So I guess I need to be patient while I wait for them all to catch up to where I am right now!!

I did it!!!

2009-08-29T17:37:00.000-07:00

Ok so the %K walk was this morning at 9:00 AM....I crossed the finish line at 10:04 AM. The race had a few more hills then I thought but I knew that I could do it!!!

I am feeling fine and already have some plans to keep looking for these opportunities as they come along. My goal is to do a short walk tomorrow and then Monday morning I will be at the YMCA getting a family membership.

O Yeah I have to join the YMCA because I graduated from Cardiac Rehab Last week.

I called my Mother first after the walk..texted my brothers and sister and my co-workers and then I called my Transplant Coordinator to let her know...she was on call but, her last comment to me on Monday is that she did not want to hear that I was going to the hospital....so I called her and told her my time....also I had not gotten any results of my cath and biopsy this week I wanted to make sure they were fine which of course they were.

Have a good Sunday!!

Hello

2009-08-20T17:45:00.000-07:00

I have set a goal for myself that I am working on!!!! I am going to have my 5 month heart cath on monday and then on Saturday Aug. 29,2009 I am going to do something I always wanted to do...I am going to walk a 5K.

Will let you know how it goes next Saturday after the race!!

Wish me luck!!!!

Where did you all go?????

2009-07-14T19:20:00.000-07:00

Sorry for not posting anything in awhile...everything here is fine I am now 4 months post transplant and I am feeling great.....I returned to work on June first and am now back into the swing of things. Cardiac rehab is going really well and I try to exercise at least 6 days a week...3 at rehab and 3 on my on either walking the hood or at the mall before it opens.

Medication levels are where they should be....all biopsies have come back with no signs of rejection and my lungs have also made a complete turn around....if all goes well at my next 2 biopsies I should only be on anti rejection meds, a antibiotic, and cholesterol pill. I am really happy about that. Tomorrow night I have to wear a pulse ox machine to record levels on room air...if numbers are good then I get to stop using O2 at night.

Well that is all for now!!

If it is monday that means another trip into Oakland

2009-05-31T15:34:00.000-07:00

Will be leaving house at 6 AM to get to hospital......hard to believe that I have not been there in two weeks but there ya go......I will first meet with clinic staff and the have a right heart cath and a biopsy.

Really another poke in the neck a few number readings and then a few snips to check for rejection.....TA DA ...... a bandage and another hickey mark on the neck. What else could I be doing....O yeah.working and rehab.....choices.choices!!!

Have a good day!!!!!!

Sunday to Sunday the week in review!

2009-05-31T13:30:00.001-07:00

Started Cardiac rehab on Wed 5/27

Friday the 29th shrink and cardiac rehab

Saturday visited cousin in from Florida, home to walk for half hour, out to dinner with Sharon, some strolling in the mall, watched the PENS LOSE, bed

Sunday cleaning the house then we went to park to shoot hoops. off to wal mart, to Ali's house to retrieve Evan's cell phone, to a clients house to pick up paperwork, to office to drop it off.

Came home and wrote the thank you note to the donor family. Now off to read a book.

It Is Over And Done!!!!!!!!!!

2009-05-10T16:56:00.001-07:00

I went to see cardiologist on March 20th...He says we can do a heart cath on Monday the 23rd....I agree but only if I can stay in hospital and get some of the fluid off my body...he agrees and so I stay and each day the water remains....on Tuesday the 24th the give me meds that make my heart pump easier and efficiently thinking this would help...doc says I know moved from a level 2 to a level 1b and would I be ready if a heart should be available in the next week or so.......HELL YES!! The very next day he comes in at 10 am and says we have a heart..started surgery at 11:30 on March 25th and finish on 26th.....things did not go well as my kidneys would not play nice so spent a few days on dialysis....finally got to the floor and after a few days they took the bladder cath out......

I was finally discharged on April 21...and a week later celebrated my actual 45th birthday and my first birthday since getting my new heart.

I returned home on May 1stt\..Iam now driving..walking an hour a day starting tomorow...back at rehab and feeling wonderful!!!

Thanks for all the well wishes and prayers!!!

A nice day for a trip to the ER!!!

2009-03-17T17:51:00.000-07:00

Have not been feeling that great the last couple of days...today I had and have a lot of chest discomfort that goes up to my shoulders and neck. Of course after running the standard test it was proven that I did not have a heart attack which I already knew.

The finally diagnosis was that with the single ventricle that my blood is mixing again so my body is requiring more O2 however the Docs at the transplant center do not want me on 24 hour O2. They also do not want me to back off of Rehab...what is happening is a normal progression of what is now going on with my heart!!

Keep a positive though for me!!!

The pre-transplant meeting of what to look forward to as we wait and after!!

2009-03-11T16:41:00.000-07:00

Had a meeting today....it was ok....stage 2 where I am currently listed is the lowest level of the three...1-a are urgent...1-b are next then level 2.....if I go on a heart assist device then I may at the doctors descreation be moved to a levle 1-a for 30 days...you can actually live a fairly normal life with the Heart assist Device...

We talked about stress reduction...weight control...meds....and then 3 guys who have had transplants came in and talked...there were a total of 7 of us at the meeting.

got home and took a nap!!!!

If you reas this and live in Pittsburgh area there will be a pancake breakfast at St Gerard Mejella Church in Penn Hills on 4/26/09.....look for more details here in a few weeks!!

Sunday to Sunday the week in review!

2009-03-08T18:02:00.000-07:00

Last Sunday Sharon, Alison and I took Evan to his religious school. We then went for breakfast..I was not moving well that day and having a hard time getting up and down and in and out of the car...Sharon decided that today was the day to buy a cane...we had talked about it because with congestive heart failure you get week some times and wobbly sometimes....Any way it helps so I am glad. We picked up Evan and went to see Movin Out...I love Billy Joel but fell asleep and missed the whole first act!!!! After the play qwe came home chilled for a few hours and then had Adult Education at our temple....It was a lively debate.

Monday I was not feeling well and thought that I had a bladder infection. We took Evan to the Doctor for an appointment that was made awhile ago...after that I took the family to dinner.

Tuesday morning called doctor made an appointment for after rehab to see them>Rehab did not go well as my heart rate kept jumping over 100 which it is not allowed to do< was given anti biotics to fight infection but was told I would be called by Thursday if the culture was differrent. I took Evan to see his therapist Melissa and then we came home.

Wed....took Evan to school and then stayed in bed the whole day....really not feeling well!!!

Thursday went to office and then rehab...better session this time....got a call from the Doctor's office to say the strain of infection I have does not respond to the anti biotic so we start a new one. I pick Evan up from School and we come home and get him packed for his religious retreat in Cleveland....Sharon and I drop him off and get a pizza on the way home.....

Friday I go to two of my schools and then I have my first appointment with Ellen....she will be my therapist and she deals in cognative behavioral change.....We got along fine and to be honest I probably should have done therapy along time ago...that and the combinations of meds really seem to be helping take awy some of the anxiety. Sharon and I have a quiet dinner then we go to services and spend some time with our friends.

Saturday we go for our Hebrew lesson...it is bad when the boy speaks better then I do and is quick to point it out!!!! Later we go out to dinner with our friends Liz and Lar...We four then head off to see Slumdog Millionare.....at first on Liz wanted to see it but at the end we were all glad we went.

Sunday we went to see Sarah and Sam at their Purim Carnival, we went to the Museum, had coffee with Becca at Starbucks We picked up Evan stopped and got him something to eat....got home I put on my stereo and my head phones and listened to Oldies for 3 hours....great way to end the week right...wrong...

I received an E-mail from a very old and dear friend that I have been trying to connect with for
awhile....now that is the way to end a week end on a positive note:)