08/07/2011 Complexities

I have had so many events/accomplishments going on in my life that I have wanted to write about, but it just seems like I have not had the words to put them into my computer. There is one thing that keeps going over and over in my head, I like to keep this heart related, and this is MAJORLY heart related so I will go with this. In about April/May I had heart failure, that I think I had actually had for a few months, I just did not realize the symptoms I was having (dry cough, weight gain, swollen toes, and inability to eat or hold food down) were because I was having heart failure. In fact I did not even think anything of those symptoms really.
This all started off with feeling like I had a bacteria or virus, I thought it was my turn to get CMV. I got labs and cultures drawn, but the cultures were taking way too long to grow (or in this case not grow) and I requested a biopsy. Thankfully my wonderful and brilliant cardiologist also checked the pressures in my heart and saw that I had fluid on me (on my lungs and heart) and my pressures were low.
When I heard the results I was out of my mind floored. We did more testing and found out that my heart was going “stiff” again meaning I was developing Restrictive Cardiomyopathy, again. I could not believe that less than two years after transplant I had developed the disease I got transplanted for-and so soon. I was shocked, speechless, and in disbelief. I always knew I would need another transplant, but now it became a matter of from now to whenever, I always thought I had at least ten years before I had to even start thinking about another transplant.
As the group of transplantees that I am close with gets further out from transplant, we are starting to have more complications of all kinds. Another patient that I look up to, I just read also developed Restrictive Cardiomyopathy, again (that was also their diagnosis before transplant) and they were diagnosed at the same month I was rediagnosed. When I heard about this I almost started crying because it just hit close to home. It just seems like of all us have so many different complications, that there is always someone to be concerned about and then be concerned that you do not have that problem.

Hannah Jones-What would you do if you had been sick all of you life

So, a lot of the time I write when I am somewhere that I do not have Internet connection (I know-today where in the world could that be?) with the intention of uploading it the next day. I have (sort of) followed this little girls story and saw a special update on her, so I wanted to write a little bit about her and how I feel about her situations-which I wrote a week ago.

09/14/10 Hannah Jones
(If you are in the transplant world) unless you are living under a rock you have heard about the 13 year old girl from the UK who refused the heart transplant, but later when she became ill decided to take it. It outraged many people that this girl "refused" the transplant and then days before dying changed he minded and decided to be listed-potentially taking the heart from another person who had always wanted to live.
Tonight there was a special on Hannah and her family, 1 year after hear transplant. Hannah had AML (Accute Myloid Leukemia right after she was born, the Chemo ruined her heart and she developed Cardiomyopathy). What Hannah really said when she was first offered to be listed that she did not want to be listed then-how she said it on TV did not make it sound like she was ruling ever getting the transplant.
So, why would anyone care about this? I think Hannah was really smart to wait until she was ready to have the transplant. When I was 15 years old, at Lucille Packard, the transplant doctors tried to push me to get the transplant and I am so glad I did not get it. A transplant is truly a life changing event that you must commit your life to, and if you are a teenager you must have the maturity and the will that you want to survive. Waiting for the transplant to see how sick you could get without it makes you realize how much you needed it, how you really must take you medications, and how it was the right time. You hear so many stories of people who get Tx's who lose them because they do not follow their doctors orders (mostly do not take their medications). It is really sad because usually these people are depressed because they have just been through so much, the surgery in itself is a huge life changing event, then the medication makes you sick, and then the change in work, family dynamics, etc. But if the doctors had knowingly had given Hannah the heart earlier, she might not have taken the medication, this could have resulted in a wasted heart, that could have gone to another sick child, that would have been really sad.
I somewhat feel that I can relate to Hannah. Although I did not have cancer as a child, I have been sick since I was an infant and my parents has drug me to all sorts of doctors to figure out what is wrong with me. When I was about 17 years old I just got to the point that I did not care anymore if I got the Tx or not, I did not want to ever see a rude doctor, needle, or hospital ever again. In a way I was a lucky sick child because I was never treated like a sick child because we did not know I was seriously ill until I was almost 16 years old. I am happy for my heart transplant buddy Hannah, we are both about a year out and doing well!

Article About Me!!!

So I am just kind of feeling blah today and I didn't really have any ideas on what I should write about, so I thought I would share this article about me! It was written in my the company my father work's for newsletter.

A Quick Response with a Life on the Line
Submitted by Randy Young, Temperature Control Specialist

At Peterson Power, we’re known for our ability to respond quickly to emergencies in the extremely downtime-sensitive industries we serve. A data center, pharmaceuticals plant, and—most importantly—a hospital simply cannot afford to lose power, even for a moment. But when we’ve heard this message a thousand times, it has a tendency to lose its impact… Until we’re faced with a real-life example of how terrifically important these places can be for the people we love. Gary Weese, Rental Project Coordinator for Power’s Temperature Control Division in Benecia, knows firsthand about the power of a quick response from a hospital—it recently saved his daughter’s life.

For much of her life, Gary’s daughter, Allie, has experienced a gradual hardening of muscle tissue in her heart, an ailment that rendered the organ less and less efficient. Weeks before Thanksgiving 2009, Allie was in grave danger from the disorder, and her name was added to the list of potential heart donor recipients. Since donated tissue must be carefully matched to an individual recipient’s physiology, there’s no reliable way to estimate when an organ that meets a particular person’s needs will become available—one must simply wait, and when the time comes, act as quickly as possible. On November 20th, Gary received the all-important call from Stanford Medical Center indicating that a heart for Allie had arrived. He rushed to the hospital.

That very night, at about midnight, surgeons began Allie’s heart transplant, and roughly five hours later, her new heart was pumping strong. “It was an incredible relief when we found out that a heart was available,” Gary said. “But a lot can happen after the operation, too. Allie needed continued treatment to fully recover.”

Indeed, for twelve days after the operation, Allie stayed at Stanford Medical Center while doctors monitored her heart’s performance. When her condition was determined to be suitably stable, they transferred her to a hotel next to the Kaiser Permanente facility in Santa Clara, where she continued to recuperate. According to Gary, Allie recovered well: “Kaiser had a party on Christmas, and Allie was able to attend—despite having been operated on only weeks before.” Five weeks after arriving at the hotel, Allie’s doctors had more good news for her and her family: her condition was stable enough for her to get back to her normal life, attending a nursing program in college and staying right in the middle of things.

“Stories like Allie’s drive home the point that this can happen to anyone,” Gary said. “The best way to help is to register as an organ and tissue donor with your state. People you know and love can benefit directly—lives can be saved.” Gary added that interested Peterson people can quickly and easily sign up to become organ donors by visiting www.donatelifecalifornia.org (in California) and www.donatelifenw.org (in Oregon and Washington). “It’s that easy,” Gary said. “You can also register at the DMV or by filling out a short form. Donor registration will not change the medical care you are provided if you’re in an accident—they won’t ‘let you die’—nor will it affect your funeral planning or cost your family money. It’s a gift you give so that others might live.”

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.