Wednesday, May 30, 2007

Second Chance - Part 2

The morning of May 1, 2000 started just like usual, or so I thought. Unbeknownst to me, in the early hours of that morning two of my doctors had flown to the east coast to retrieve the organs that would save my life. Around 10 a.m. I woke from a nap to find all of the nurses assigned to floor I was on, plus others from other parts of the hospital and some that worked other shifts, surrounding my bed. I could see that many of them were crying, and immediately I knew why. My new organs had arrived.

It sounds a bit odd, but instead of being excited or even scared, I was actually quite calm at the prospect of surgery. I was so calm that I managed to return to sleep rather quickly. A few days earlier a content, soothing, confident feeling had come upon me, and I knew that I would survive whatever happened. So this particular morning was of no real surprise for me, I had no doubt that it would happen, and no doubt that I would survive for years to come.

The surgery didn't go totally as planned. At one point I lost blood pressure for several minutes, but my surgeons kept going. I had one of the best transplant surgeons in the country heading up the team, and he was able to work past several obstacles in getting the new organs situated and working. Although he admits that it was a little disturbing for him after he had removed all of my abdominal organs, seeing the open cavity, and realizing that the space he had to work with would just barely accommodate all that had to be put back in. But, with skill and a little creativity he managed to get the job done, and by early morning of May 2, 2000 I had the liver, kidney, pancreas, and ten feet of small intestine from a six year-old little girl that had died just the day before.

I have no memories of the two weeks following the surgery, which is a good thing. They decided to keep me in a drug induced coma because of the suffering I would have encountered from the surgical pain, and the side effects of the massive doses of immunosuppresants and steroids that kept me from rejecting my organs. Although, when I did wake from coma, I still encountered the worst pain I had ever experienced in all the 10 years since the original bowel resection. Just imagine the discomfort of a bad case of stomach virus complete with cramping and nausea, then magnify that by 10 times and then you have an idea of what it was like. And on top of that, I had the shakes caused by the immunosuppresants that was so bad that the bed I was laying on would vibrate across the hospital room and had to be moved back into place every few hours. Although I was so grateful to be alive, I felt like I was living in pure hell.

We eventually began to look for things to celebrate. I had been down to the depths of hell, and now I could finally see the light at the end of the tunnel. Each little milestone was a step toward that light. The first step was the small amount of urine that my new kidney had made. I never thought that I would celebrate being able to pee again:) Then my gut started moving gas, again I never thought I'd be so happy to pass gas:) We even called my friends to share the good news:) A major milestone was the day I was able to sit up in bed unaided for one minute. Keep in mind that I'd not been able to do so much as use the tv remote for months, much less be able to sit up by myself.

So little by little I got better. I had to learn how to do things all over again. Just simple things like feeding myself, walking, writing, etc. had to be re-learned. Through it all, my Dad stayed by my side. In the seven months we were in UNMC, Dad left only twice for a total of one hour. He slept in a chair beside my bed with his hand on my bed so that all I had to do was move my hand a few inches to touch his if I needed anything. He left my bedside only for short periods of time, and only if I had a nurse or someone else he knew that would care for me and call him if anything happened. He learned how to program the IV pumps, the dialysis machine, and the ventilator. At one point, after another surgery to wash out an infection that had developed in my abdomen, I accidentally sneezed and ruptured the large wound in my belly. Then Dad had to learn how to pack the wound and change the dressing on it two times a day for the next year while it healed from the inside out. He also learned how to care for and change the ostomy bag that the surgeons had created so that they could easily check on my new gut. He took care of me and never questioned his place in it all. It was a responsibility he took totally upon himself and never asked for help from anyone. I think I have the best Dad in the world:) I am not ashamed to say I am a Daddy's girl, but how could I not be? :)

I just celebrated my seven year anniversary this past month. It is hard to believe that it has been seven years already, where did the time go? I have had a few more surgeries, including having the ostomy removed, and having both hips replaced two years ago due to osteopenia that resulted from my poor nutrition and lack of weight bearing on my hips during my illness. It has been a long and difficult journey, but I am finally at the point where I can start to live a relatively "normal" life. I still have problems with short-bowel syndrome, and I have to eat a huge amount of food in order to maintain my health. Most adults have close to 30 feet of intestine; I have only 10 feet, so I must eat a lot of food, drink at least a gallon of water each day, and take large doses of vitamins each day in order to stay "healthy".

This time last year I was contemplating the meaning of my life. I just felt like I was still alive for a reason. I had spent the last five years waiting to die, but never did. There are just a small handful of people who have endured a multiple organ transplant that included the small intestine that have lived beyond five years. (The transplanted intestine is very susceptible to sudden unexplained rejection, more so than other organs because it is so heavily involved in the body's immune regulation.) But more than anything else I felt that I needed to do something with my life that would be worthy of this wonderful gift that had been given to me. So, I made the decision to go back to school with the idea that I might try to eventually go to medical school.

Going back to school with the goal of medical school seemed like a ridiculous idea at the time, but I felt motivated to push myself to the limit and try. This past Spring semester I tested myself by enrolling full-time taking three of the most difficult courses in the pre-med curriculum; physics, statistics, and organic chemistry. In all my years in school, this was the hardest semester I have ever had, and I actually had fun and did well. So now I am convinced that becoming a doctor is what I am supposed to be doing. It just feels right. And guess where I plan to apply? UNMC of course:) ! Where else would I go? Omaha has become my second home, I really like it there. Plus, it is a good place to move forward with my life while still being close to somewhere that can care for me if I should become ill. The only drawbacks are that medical school is expensive and I don't know yet where I'll get the money, I'll be moving away from my Dad (he's nervous about the idea of me moving 600 miles away), and now after so many years of being alone, I have a special someone that I don't want to leave. But I know that things are never easy in this life, and the "big picture" is what really matters.


Aviatrix said...

Wow, thanks for your comment on my blog letting me know about your story.

That is amazing, and I hope people will follow the link and help to save more lives.

Do you know Zoe's birthday, too?

Byrd said...

Thank you for your comment Aviatrix.

No, I don't actually know Zoe's birthday. Her father sent me a letter a few years ago that mentioned she was shortly to have turned 7 had she not passed away.

I have had minimal communication with the family because of the sensitive nature of the subject on both sides. Communication between donor families and the recipients is kept anonymous until after a certain period of time (for me it was one year), and both parties have signed and had notarized a statement that they are willing to share information. I have just recently sent my paperwork off with a letter to the family to the organ donation coordinator at my hospital to allow the release of my personal information to Zoe's family. Writing the letter to the family was probably the hardest thing I've ever had to write. There are simply no words to express how thankful I am that they made the choice that saved my life, and also how incredibly sorry I am that they lost their precious child.