The Rest of the Story – Part II

Let me begin by posting a link to Part I for those of you who haven’t read it.

I received several questions concerning the emotional and psychological effects that transplantation can have on the recipient; therefore, I will discuss that topic first.  Please understand, I can only write about my experiences as a liver transplant recipient, others may have experience a totally different set of emotional effects and I would love to hear from other transplant patients about those.

My emotional journey started months before receiving the transplant.  To be entered on the waiting list is a long process in which every system of your body is thoroughly examined before you are evaluated by a transplant committee.  You are prodded and poked by each specialist’s team during their evaluation.  It is exhausting for someone who is already ill.  If that weren’t enough it seems that every time I was near a crowd I became sick despite my best efforts not to.  I was admitted to the hospital countless times for bacterial infections and gastrointestinal viruses.

To make matters worse I had to monitor every gram of protein I ate.  I was allowed only 40 grams of protein per day in order to keep my ammonia levels at bay and prevent dementia.  Through trial and error I found that I could consume only 25 grams with no ill effects.  To put this into perspective, a plain hamburger contains 12-14 grams.  Needless to say, I was on a very limited menu for many months.  Now that’s stressful.

Months of hospitals, CT scans, ultrasounds, doctors, lab work, endless nausea, and fevers, not to mention the fact you bleed more freely with liver failure, leaves you stressed emotionally to the breaking point.  My senses would take the punishment and build-up stress until one swift unpredictable act would cause me to simply fall apart.  I would literally turn in to a blubbering mess, shaking and crying until I purged it from my system.  Then I would start all over again.

Add to that the feelings of guilt.  The transplant team tells you that more organs donations occur around holidays and to be on alert for ‘the call.’  I found myself literally watching the news and wondering, “Was there an accident today?”  Afterwards I would feel awful, realizing that I was waiting for someone else’s tragedy to occur in order for me to live.  It made me feel like the Grim Reaper.

After months of waiting, I finally received a liver transplant.  During the recovery, the feeling of gratefulness was overwhelming, but I still felt awful that someone had died in order for me to survive.  I still feel sad for that family.  I also wonder why I lived while others died.  Why me?  Am I supposed to do some grand thing in life?  Is there a specific reason I lived?

Thirteen years later I still ponder those questions.  There are so many people who don’t survive as long as I have and it makes me feel very sad, yet I am still grateful at the same time.  It’s hard to explain the feeling to someone who hasn’t experience it.

I would like to share some data I found at the U.S. Department of Health & Human Services website listing the survival rate from the HRSA | OPTN / SRTR Annual Report dated May 4, 2009.

Survival rates chart

According to this data, I am among the 60.2% liver transplant recipients who survived to 10 years post surgery in 2009.  With the increased knowledge gathered from patients like myself and technological developments the number of transplants performed and the survival rates have increased dramatically.

As I said earlier, I feel blessed to have received a life saving transplant.  It has enabled me to see my grandchildren born, care for my Mother during her last weeks with cancer, and earn my Bachelor degree.  If you haven’t thought about being an organ donor, please do.


2 thoughts on “The Rest of the Story – Part II

    • I think you meant this question for the “No More Memories” post. Yes, Alzheimer’s causes different involuntary muscle problems and one of them is the inability of the throat muscles to ‘remember’ how to swallow.

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