Only in my world!!

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!!!

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!!!

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

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

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

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.....

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...

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

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

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....

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

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

SIGN YOUR DONOR CARD!!!!!

WE HAVE OUR MARCHING ORDERS FROM STEVE!!

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

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!!

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

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!

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

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!!!!!!!

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

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...

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...

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!!!!!

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.

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!!

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

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!!

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!!

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

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

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??

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

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.

1. 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

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!!

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

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

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!!

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!!

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!!!

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

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!!

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

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!!

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!!!

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!!!