Thursday, January 29, 2009

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!!!

Monday, January 26, 2009

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!!!!

Wednesday, January 14, 2009

All Packed and ready to go!!

Count down is on till we leave for Disney.....and not a minute to 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!!!

Tuesday, January 13, 2009

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 now it is quasi offical!!


Monday, January 12, 2009

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.

Sunday, January 11, 2009


Countdown to the transplant meeting


countdown to Jersey Boys and Disney


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

Friday, January 9, 2009

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!!

Thursday, January 8, 2009

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 no the original one!!!! The better one!!!

Anyway..I feel like young 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!

Wednesday, January 7, 2009

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 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 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 !!!

Tuesday, January 6, 2009

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 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 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!!

Monday, January 5, 2009

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 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


Saturday, January 3, 2009

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.

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