11/15/10 Survival Mode

11/15/10-Survival Mode
I am not sure if I have written on this topic before, but even so, more thoughts came up about it when I was at a TRIO meeting last Thursday. One person there needs a transplant, but they are nervous of the surgery (which everyone is-who isn't scared of any surgery? but for anyone out there waiting for a transplant, all I can say is it was not as bad as I though it was going to be) and they don't like to take medicine (I will get to this later in the post-but I feel for them here also).
Before I got my heart transplant I steadily took more and more medication starting the January before the transplant (January 2009). From January to July I did not really feel like I HAD to take every dose. Then in July I HAD to take more medications and to function I HAD to take every dose, but I guess because of my age and my rebellious nature, every once in awhile I skipped a dose. When I skipped one of these doses I felt awful, at this point I was taking anti-arrhythmics, diuretics, K+, etc. I think though it was good to get to go through this experimental phase then because now I know how quickly I will feel sick if I miss just one dose. Before the transplant I NEVER took liquid medication, no one told me that I would have to take liquid medication after the transplant for awhile, so it was quite a surprise to me when I was given it in the hospital right after transplant. At first I almost said that I could not take it, but I decided before I made a fuss, I would at least try and take it, and I was able to take the medication. This is when I think my body was in "survival mode", I was able to do things that I would not normally be able to do, like have multiple IV's put in, and other painful things. I think at this point after surgery my body was doing anything it needed to survive and I think this mode lasted for many months after. It was a hard few months after the transplant also, the first few weeks when the tweaked my meds and I had to have a cath every week (my neck was sooooo sore) were really hard. Fore many months the all of the medications made me sick and my back was a mess. But eventually life has gotten much better and in a few days I will be 1 year out and I think I am out of this survival mode and into a more normal life mode. Now it is easy to take all of these medications. Someone was asking me yesterday how many pills I take a day, and I told them it was about 50 total (some are more than one of the same pill) and they were shocked, before transplant I would be shocked, but now I don't think my medication regimen is that bad, I am pretty used to it.
In heart news:
One of the nice things about transplant is that you have gone through all of this pain, so after you can go through nearly any painful thing. One doctor told me that an injection in my back was going to be pretty painful-I honestly did not notice it. I had to get things burned off my skin and the doctor told me to tell her when I could not handle the burning any more-it really never bothered me, I just wanted the stuff off and the procedure done so I just told the doctor to finish it so I did not have to do this again. After she said that usually people tell her to stop as soon as she starts. After getting a heart cath and a heart biopsy I feel like I could withstand just about anything.
I went off Prednisone-for the 2nd (and hopefully last) time (on Saturday Nov 13-a day to be marked in my Tx history)! I am having a biopsy on the 1st to make sure everything is ok, except for being tired (which is expected) I feel fine, no irregular heart beats, so I think all is well and I am done with Prednisone for awhile!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Transplant Week

Today, my world revolved around transplant-and it was a good day!
I did a speech for CTDN at the main office in Oakland (right before the Grant/Meserly verdict!) about my transplant experience. It was so much fun. I feel like I really do actually help when I do this-by putting a face on a transplant patient.
Before I did my speech I met Gill, who has volunteered for 10 years with CTDN, and worked for them since December. I have heard of him-but never met him. He was such an inspiration and has an amazing story:
He is friends with an oncologist, who encouraged him to enter his blood into the blood marrow database-he did and a few years later they found a perfect match for a 19 year old boy with Leukemia! This was years ago when they took the marrow from your illiac crest-so you were either intubated or had a spinal block (epidural). Gill donated and the boy was CURED (but later succumbed to pneumonia). When he said that, he immediately focused on the part that this boy died, but I was like: "Gill, you helped cure someone!-If it wasn't for bacteria he would be alive!!! Without you, that might not have happened!" How amazing is that. I truly can't wait until my year is up and I can donate blood/plasma/whatever I can. Anyways, more on Gill (he has quite a story!) His son got a transplant when he was 16 years old, but it only lasted 4 years because of "electrical problems"-what the doctors said was an anomaly. But, Gill said those 4 years were great and his son did so well! Then, his other son suddenly died in a car accident. They were not able to contact the sons family quick enough to donate his organs, but they were able to donated his corneas to two people and skin/tissue to like 20 people! Amazing!
Anyways, it was finally time to share my story. I really need to write out my whole story and just get it out on paper, because I need to memorize it. I always feel like my brain is spaghetti and I am all over the place. But Katie and my Nana were there and said it was good, made sense, and was the right am mount of time.
After I did my speech, I met a surgical technician who helped harvest my heart (the guy with me in the picture above!) It was soo cool to meet someone who helped save my life and took care of something so precious to me before I could take care of it.
The best part of the day is how I am trying to inspire these people to keep on doing their job well, and they were so thankful that I was there to show them that their work had meaning. As I was finishing my speech, a guy was leaving to go harvest a heart, and just talked about how this really hit home.
After my speech, Gill told me the things that hit him. One of them was that he was an educator for the people who first brought out dopamine as a heart drug (it is related to L-dopa for Parkinson's). Wow, what a connection. He also helped save my life, dopamine is very complicated and risky and he laid the foundation for people to use the drug that kept me going when my body could not keep on. It was just an amazing day.
Then, my father took me to the Bay Area TRIO meeting. It was at El Camino Hospital in Mountain View-It looks like a Hilton hotel or something. It had someone playing a grand piano and then a marble staircase! The meeting was pretty good. I don't know if I will make my father go back, but I definitely like it as support. It kind of stunk that my first meeting was in the summer, so a lot of people were gone, but it looks like a good place to come for information, everyone was really nice, and they are the kind of people that genuinely care about how their fellow transplantees are doing. It felt good to be there and have people agree that some of the symptoms that I have had, they also had.
Anyways, it was also fun to just hang out with my dad after. I love getting to spend quality time with him.
What a good day!
Tomorrow another talk for CTDN at UC Berkeley, and Sunday I am working the CTDN both at the Run to the Lake. And Tuesday is the summer heart transplant picnic at Santa Clara, then Friday another UC Berkeley talk.

What I would like to say to all donor families

Hi, I am Allie, I got a heart transplant on November 19/20, 2009 @ Stanford. I just (last Tuesday) gave my letter to my social worker to give to the OPO. It took me so long because of many reasons. At first I wanted to write away, like 3 days after I got out of surgery, but I felt like I HAD to wait a little while because it would be curel to say how good I am while others are suffering. Then the drugs made me very ill and I couldn't see well for awhile, so I could not write it. Then prednisone makes you very hyper and it made me write it. I am glad I did, I really hope I hear back from them. If I don't, can you be my surrogate donor family? Even if I don't hear back I will send updates, such as when I graduate, when I run a marathon, etc. I figure it is better to send the letter and let them make the decision to read it or not, it is their choice if it is too painful. Anyways, the following is my letter to my donor family, I want to use it to thank you and all donor families who have given myself and my other recipient friends LIFE!

Dear Donor Family,My name is Allie and I am the recipient of your family members heart.  I am 22 years old and I am currently a nursing student in the Bay Area in California.  I had suffered from Restrictive Cardiomyopathy since birth, but it is unknown how I developed the disease.  I was sick for quite some time before I was diagnosed when I was 15 years old and had to have a pacemaker implanted.  After I got the pacemaker I felt a little better, but I never returned to the full activity level that I had before I really got sick.  Over the past six years my health declined and I was able to do less and less physically.  In this past year it had gotten to the point where I had trouble doing normal activities such as hanging out with friends, walking to class and even sleeping.  My last months before my surgery were spent in the hospital an hour away from my friends and family.  I was fully relying on medications and my pacemaker to keep me alive.    
    On the day I got the call from the hospital, I almost wanted to say no, I realized the implications that someone had died and I mourned the loss of someone else’s life, but I knew that I was being given the gift to live again. The hours before the surgery are a blur of shock and disbelief that something so life changing was going to happen.  I woke up the next morning a couple of hours after having my transplant surgery I felt so different and so much better. This new heart was bounding and pulsing and I could feel it; I felt as if I could run a marathon.        
I have put off writing this letter for the past few months because I have been healing, learning to be a healthy person again, and coming to terms with the fact that I was given such an amazing gift from your family member. Everyday I think of how much pain you must be feeling for the loss of your loved one and I am also extremely grateful for the gift of your magnanimity.  I feel so blessed everyday to have such a strong heart beating in me.  I am so grateful for the unselfish gift that you gave me.       
I am home now with my family and slowly returning to a more normal life and continue to feel better everyday.  I have been able to do so many things that I have never had the ability to do. I plan on completing my nursing degree and working with heart transplant patients and their families. 
       Thank you so much for making such a difficult decision, by doing so you have really changed my and my family’s life and I am eternally grateful. Your family will always be in our prayers.With Love,Allie

Seeing my heart

On Tuesday we went and saw my heart at Stanford. I had 10 family members go with me, I think people don't usually do that.
I am really glad I went and saw it. I think this might be an emotional experience for some people and it was not emotional for me, but it did "seal the deal" in a way for me. I think up until that day I was not sure that I needed the transplant when I did, this made me realize that I really did need the transplant and my heart was damaged enough.
It was really cool to see a human heart, how many people get to do that? My heart had already been dissected, so I could see many different views of my heart. My heart was pretty gross. I saw where the restrictive part of the heart was (the muscle was discolored) and the ventricles we a third of the size. The heart is truly amazing, the makeup of the valves are so delicate, but yet they can hold back so much.
I was glad to learn that they will keep my heart forever, they incinerate the livers and some other organs. I don't know why I really cared what they did with my heart, but I kind of didn't want it to just be thrown away. They also kept my pacemaker, I think that is why I did not get it back even though I asked. A part of one of the wires was still in my heart, the wire was a lot thicker than I though it would be. I think a lot of doctors think because of my age I don't want to know about what they are doing. I wish I had seen the actual pacemaker they had put in because pacemakers are so different. I also wish that I would have gotten to see the heart before they transplanted it for comparison. That reminds me I still need to write my thank you letter to my donor family. It's hard to write it, not emotionally for me, but how to phrase everything and to know what to write, what the family would want to hear.