UPDATES!!!

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!!

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!!!

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!!

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!!!!

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!!

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!!

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!!

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

The break is over!!

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!!

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!!

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!

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!

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

It is time to get flu shots!!

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!

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!!

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!!

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!

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.

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...

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....

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!

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!!

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?

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!!!

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

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?????

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

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!

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!!!!!!!!!!

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!!!

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!!

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!

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:)

April 6th

That my friends is the date for my second heart cath in six months.....I am so excited that I could judt poop!!!


Hopefully the recovery will be quick and the results will not be a suprise!!

Update

It is not a bladder infection but rather a UTI!!! Of course as my luck would have it the first course of anti biotics is not going to work as the strain I have is resistant to it. So after taking it for three days I get to start something new!!!!


Just a few more days of pain.....but at least if the call should come this weekend I can still get the transplant as I do not have a fever accompanying the UTI!!!!


Always look on the bright side of life!!!

what do you give a man who needs a heart transplant???

A heart of course!!! But as my luck would have it I got another medical suprise that started Saturday and I finally could not take the pain anymore.......let us just say making number 1 hurt like hell and my bladder is all a twitter......anyone want to guess??


A BLADDER INFECTION!!!!

Today was not a good day at rehab. After 45 seconds on the eliptical my heart rate was over 120 so the rest of the session was spent doing things at turtle speed to keep heart rate down!!!! I was a bit pissed. But life goes on!!!

Good news is I start Therapy this Friday and think it is going to a positve choice and will help me gain insight in to dealing with all of this.

Later off to drink some water!!

First Meeting of Fundraising team

Saturday was the first meeting of the fundraising team, or as Michael(AKA>>TOT) like to call it the meeting of the Tin Man fund!!!

We kicked a round a few ideas for fundraisers. Don't be suprised if you get a letter in the mail shortly as we decided to start with a letter writing campaign..we are also going to try and have a Pancake Breakfast at the church where I grew up on April 26th. The were other ideas as well but we will keep those close to the vest till we can work out the details.

So thank you Micheal(TOT)Pugliese
Stephanie Pugliese
Ann Williamson who all met at my Mom's house and to Jeff Pugliese who joined us by phone from Tronto.

I am greatful to not have this to worry about!!

The Never ending trip to Pittsburgh!!

On Friday the 27th I had a 1 PM appointment in Pitsburgh. I left New Stanton at 10 min to one for the 23 mile drive to the hospital...I was making good time until I hit Forbes and Fifth Ave. Fifth Ave. is a one way road heading west..there is a bus lane that heads East. This area is around the University of Pittsburgh so of course there is a lot of J walking by folks. The problem is if you are crossing left to right you need to check the bus lane....well that did not happen Friday and someone was hit by a bus...I was stuck in traffic for over 45 minutes to go 9 blocks....I was late for my appointment which was fine I still got seen...I got out of Oakland at 2:40 but need to pick up dinner I ordered at a local shop in Squirrel Hill by 3pm....I made it with 2 minutes to spare but talk about stress.


The appointment went well..this was with a medical Doctor who deals with pain and anxiety around transplants and cancer...but she made it clear that she is not a therapist....we talked for a while and she left to make a call to a Psychiatrist to see about adding another medication to my daily meds to help me relax and sleep better....My mind tends to race at night and agin waiting for the phone to ring is crazy....so she came back with a script for soomething...she also gave me the number for a Cognative therapist who I called Friday but she stated she needed to get back to me Monday as she was not at her office....All in all it was productive day.

Friday in the Burgh!!! Pittsburgh that is!!!

As Karma would have it Thursday nite we went to see Fiddler on the Roof . We have season tickets which is sometimes good and sometimes bad. Usually it could nice and calm the day before and then cold as a witche's.....the nenext nite...this has been true this year....very cold when we saw Jersey Boys in the single digets...last night was a heat wave at 23 degrees...of course no adventure is complete without a snafu along the way...I was a little on edge and on the way there starting yelling at Sharon and we exchanged words and I called her a word that no women should be called.((YEP I was bad and I detest men who use that word) I don't even know why I was angry but it hurt her and well let us say I was in and still slightly in the dog house. Because of this I knew at the appointment today I need to come clean and ask for more help then what the Lexapro was doing so...here is the Saga of Friday!!


I first had to stop at my bank and put in my pay check and grab some money for parking and lunch...Karma....I must have the only bank that does not have early drive up hours....I put the check in the ATM and take Evan to school. On the way there the gas light comes on...I knew I need gas that morning but forgot about it when I went to the bank.....Karma......I managed to get him to school and then got gas and headed to my first appointment which was at 930am. I got there on time...BECAUSE I PLAN FOR RUSH HOUR TRAFFIC>>>MISS DUMB ASS who arrived for her appointment that was at 9 at 920 thus putting everyone off schedule by you guessed it at least 35-40 minutes...Karma...This means I was late for my next appointment that was at 1020 arriving promptly at 1029 AM...Got checked in and was told that the transplant coordinator wanted to meet with me...good I wanted to talk about therapy and some other things with her as well....30 minutes later the nurse comes back in and says has she been in yet...THAT'S A BIG NO!!! so she takes some more notes and while doing that said transplant coodinator shows up and sees us talking and says she will be back......let me just say I am still waiting for her return. Then the doc comes in we chat about the night before and I tell him I feel the time has come to begin to see someone to discuss the anxiety I am feeling.....You know waiting is not easy...you get engaged there is a wedding date......but with this even though I am prepared for it and am ok with the fact of needing the waiting is a BI**H. He recommends his wife who works with people in heart failure and are waiting for transplants>>>good I know the clinic and she is there so we make an appointment......leave and have to wait 12 minutes for my car...but good news is I got a free pass to park next week!!! WHO knows maybe the sun will shine and it will be at least 45 degrees...one can always dream.

Sorry here is a round down of appointments.....Lung guy...feels that the lungs are as good as they are going to get ..feels that the new heart will allow me to have a better quality of life then I do now..but running a marathon and climbing up Mt E are out of the question.....well take those 2 things off my list...hell I be happy to walk a flight of steps with out the pain and shortness of breath that comes with it....He states that my heart is large and has caused the lungs the inability to expand he does not see this improving greatly with the transplant because the right side of my diaphram is not working correctly and there is nothing that they can do about it!! He feels that the pain I am getting with exeercise and other activities is a cardiac thing...this leads us to the meeting with the cardiologist who agreed with everything he said..at this stage you either get tired because of shortness of breath or you get tired and the pains because your heart function is lower....we plan to do another rightsided heart cath in early April...if function is down I will probably be put on IV meds which kinda sucks but the good news is I will get to move up the list.

So that is where we are..have a good day!!

Ok put your brains together!!

Time for your input....If you were having a heart transplant what is the first thing you would want to do once you are cleared to go a head with your new healthy heart life.

Day by day!!

The motto till I get the call for the new heart. Day by day....make plans with the side note of always saying....If I am able since I don't know when the call will come.....day by day....dealing with the cranky moods and being tired...day by day....wishing it would all be over soon!

Fundraising team is in place!!

I would like to take time to thank the following people who have graciously taken on the responsiblity of handling all the fundraising:

And in no particular order:

My Sister Ann Wiilamson
My Sister-in-law Stephanie Pugliese
My Cousin Jeff Pugliese

Sharon and I are greatful as this is one less stress we have to deal with at this time!!

TGIF

I think that says it all..the week was long...rehab was hard...I had 23 pounds of water on me yesterday that is thankfully gone to day thanks to the little yellow pill that made me see yelllow all night......I have no real plans for the day or wekend except taking Evan to his various activities!!! That is all for now!!

I am tired!!

Last week I got to recover from our trip thanks to 2 hour snow delays and school cancellations....this week so far 2 full days of work and I am tired.....Last night I came home and napped for 2 hours got up at 6 made dinner and was in bed @ 8 to watch HOUSE and then lights out at 9:30!! Tonight I am going to try to stay down stairs until 9....wish me luck!!!

Found out yesterday that the average wait on the list is a little over 230 days!! 8 down and 222 to go!!!


Later!!

Not always being on a list is fun!!!

Today I realized one of the down falls of being on the list is my ability to travel without making myself inactive on the list. I know that it sounds stupid seeing how I just got back from Disney...but I found out tonight that one of my best friends is getting married on 2/20 in California and while I would fly out the morning of the wedding and return the next day I would need to become inactive for those 24-36 hours.

MY friend understands...we have the same heart defect.......and we have the same birthday...he said that I will be at the wedding in spirit!! It is true I will be but it still sucks!!!

It is official !!!!

I was called on Tuesday the 20th while in Disney and told everything was good to go for the transplant list....I was on it then Suspended from it till I got back today!!!! SO TODAY!!!! JANUARY 26, 2009 I am on the LIST!!!!

All Packed and ready to go!!

Count down is on till we leave for Disney.....and not a minute to soon.....it is freakin cold and I need to go to where it is warm.

Evan Already has a two hour delay for tomorrow so we will get up and do a little last minute cleaning...take the dogs to the kennel and him to school.....I don't think I will have rehab...I will need to see if the school district where it is located is on a delay......


Tomorrow we go to see "Jersey Boys" we were going to stay at a hotel before our flight but I figured the show should be over by 10:30-11 and then we can grab a bite to eat and head to the airport we need to be there by 4 anyway for our flight....we will snooze in the terminal and on the flights we will be good....I have my Oxygen being delivered to the hotel so I will have for Friday night sleep.

I am going to use the 10 days we are there to relax and enjoy... we know that this will be the last vacation of any distance until the new heart as I will not be allowed to travel more then 3 hours from home....yes you can suspend your place on the list for trips but I have no desire to tempt fate.

So if you are in a place where it is cold...stay warm!!

Will post from Mickey's house if I get a chance!!!

One more Hurdle but it is not a big one!!

Got the call this am at about 11:20 from transplant Coordinator...I need to re get 1 blood test which I did this afternoon....the Hoop is now to get pre approval from the insurance company which she did not think was a big deal and then it will be offical...so now it is quasi offical!!

Later

No News Yet!!!!

I talked to the transplant coordinator early today who informed me that I will not hear until Tuesday. Why because the meeting is the last thing they do before the head home!

So tonight think happy thoughts and I will see you tomorrow.

TICK TOCK TICK TOCK

Countdown to the transplant meeting


or


countdown to Jersey Boys and Disney



or


The steady beating of my heart after losing cable for most of the second half of the Steeler game but getting to see the last 4 minutes!!


You Pick

How do you feel today????

Good I hope..
as for me I feel like a long tail cat in a room full of Rocking Chairs......It's hard waiting to see if I qualify for the heart....hopefully when I make the list I will settle down a bit!!

The waiting game!!

If I had to use a movie to describe how I am feeling right now you all would think that I am crazy.....but then again perhaps I am!!


Ready: Willy Wonka and the Chocolate Factory No no no not the one with Johnny Depp but the one with Gene Wilder..........you no the original one!!!! The better one!!!

Anyway..I feel like young Charlie...you know the boy so poor that he and his parents and both sets of grandparents all live in a tiny small one room house!!! There was one golden ticket left in the whole world and he wanted to find it......remember how bad he felt that his grandpa spent the money on candy bar and how excited everyone was when he found the golden ticket....


Still can hear the song in my head......" I got a golden ticket etc. etc.

Well anyway that is how I feel right now!

it all comes out in the end!!!

Needless to say one of the draw backs of having a CT with contrast dye is that eventually it makes its way out of your system. However I was hoping to at least have an easy time. I was back at work for the first time in 17 days....it was a full day...I went to lunch and had wedding soup and a diet Pepsi....lets just say I was never so happy to get to a school. I felt sick and was sick..good thing we were 20 minutes early for the class so I did not miss any of it. I felt poor afterwards but was happy to get home....it was a long day....I hope the night is just as long!!!!

To sleep would be nice a solid night like 7 hours instead of the 3-4 and then another 2-3!!!


Later !!!

Stick a fork in me I am done!!! Or Day 2 of Testing!!!

Today was day two of testing. Everyone was nice but things were a little haywire!!

I arrived and signed in!! Most of the day was spent in the radiology department having CT scans and ultra sounds done of my stomach, liver, dopplers of my legs and sonogram of my carotid arteries.

The first test I had to fast for 8 hours the third test was 2 hours later and I had to fast for 3 hours....they moved the third test up another hour to 1:30 which meant no food all day>>>yepper pepper a diabetic going almost 15 hours without food.....the LPN who started my IV for the contrasting dye(that I did not know I was getting)..slip me a sugar cookie. The excitement came when he told me they were going to do a CT of my lungs....NO that was done already it is supposed to be a liver and pelvic CT!!! He showed me the script!!! No all test were ordered by same doctor..he gets on computer and finds the right script....OK so now we are all on the same page!!

After all the stuff in Radiology I go up to the heart center to have my blood work done...To bad they took out the IV Site the girl says...now I have to poke you again....GREAT!! ok so who would have known that transplant pre test would involve blood work...I did but I was not ready when the girl says they need 20 tubes for different test including AIDS!!!!

Last stop was for a ECHO Cardiogram...it went ok...and Finally at 3:20 I was on my way to get Evan at my mom's house!!!

Next step is to wait to see what happens at the round table discussion next Monday!!! I am not counting down to that...No I am counting down the days to both Jersey Boy Show and our escape to Disney for our last family vacation...once I am listed I have to stay with in a 3 hour radius of the house!!! If I want to travel for more then a day I will need to suspend my name from the list....but like the saying goes, "I was at that train station when my ship came in!!!" In other words I would have that kind of luck!!

Later Dudes I am one Tired BOY!!

Meeting with Transplant Team Day 1!!!!!!!!!

Well Folks today Sharon and I traveled to Prsby hospital in Pittsburgh and spent the day meeting with the members of the Transplant Team.

We met with the coordinator who gave us a brief overview as to how the process will be handled. Everyone we meet with today in addition to the cardiologist from Prsby and the ones from children will all meet next Monday afternoon and review my case! If I am put on the list then we just wait until we get the call...It is not going to be a speedy thing in fact it could take a year maybe two. I will need to be at the hospital within 3 hours of getting the call...time in hospital will be anywhere from 10 days to 2 weeks....6 weeks after discharge I can drive and about 2-3 months after surgery I can return to work...We talked about anti rejection medications and how they will replace most of what I take right now and that they will be with me the rest of my life....I will have to have weekly biopsies for the first month, bi weekly the second month and then every 3 weeks the third month and so on and so on...then after a year it is yearly...they do this to check for rejections and then they can play and adjust meds before anything major happens.

Next we met with the surgeon who briefed us on the procedure stating it could take anywhere from 4 to 6 hours to complete....that congenital heart patients are a little more difficult due to the plumbing from prior surgeries...However he felt that things should go smooth and the thing is to stay in contact with the adult cardiologist regarding any changes in my status...he said that sometime when folks are sick they don't notices the changes but that people around you usually do. He also agreed that it is better to be listed now rather then waiting because congenital patients tend to see their health decrease rapidly.

Next was a stress test...I lasted about 5 and a half minutes before symptoms of pain in my arms and back appeared...my O2 stats also fell to 85 which is not the best.

Next we met with the social services coordinator who took a social history...discussed that there is a class that I should plan on attending next week....talked about having support during the recovery period...we reviewed the meds I will need to take and what the cost maybe if insurance Does not cover them( although we think most if not all will be)...we talked about fundraising as there are going to be a lot of expenses.

Lunch was Next good thing cause I ate at 7 and was not allowed to eat until after the stress test.

Finally today we met with the Psychiatric nurse...for the most part she kinda went over that feelings of depression and anxiety are common...that the Lexapro I am taking is a good medication to be on...we talked about the fact that I have been preparing for this for a while and knew that someday this was going to be a fact of life...she feels I may have a more difficult time after the transplant as it will be the first time in my life that I have no real restrictions on my activities.....and she informed us that the anti rejection meds cause some very vivid and techno color dreams that are so real it is hard to tell them from reality!!! She warned not to argue with people if they tell me it was only a dream..if I make claims that they were there or did something.

So tomorrow is day 2...I have a couple of sonograms..some blood work and echo cardiogram...and a few other things....then we just wait to hear!! Although everyone today feels that there is not going to be any problems getting listed.

We will let folks know when we know and will also advise you of any fundraising as we may need your help.

Thanks for the support

Anthony

2 days and counting!!

It is Saturday and I get to meet with the first set of Docs on Monday. Today I got up not feeling all that well..a little stiff and ackey all over...I am just going to take it easy...I don't think it is anything to worry about!!


I will post after all meetings on Monday.