Tag Archive | Organ donation

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.

https://0ddsandendz.wordpress.com/2011/10/30/the-rest-of-the-story-%e2%80%93-part-i/

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.

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The Rest of the Story – Part I

I’m sure you have seen the numerous ad campaigns for organ donation.  Donating ones organs is a truly selfless act that has the potential to save multiple lives.  Even though no one wants to think about their own mortality donating your organs is an option.  The Organ Donor Program helps save 1,000s of lives every day.

Please don’t misunderstand what I am about to tell you.  I believe the Organ Donor Program is fantasitic.  There is just so much more to organ donation and the organ recipient’s journey than what you hear in the public service announcements that I would like to share with you. I want to tell you what it’s like for the organ recipient after the transplant is performed.

You’re probably asking yourself, why should I listen to what she has to say?  What could she possibly tell me that I haven’t already heard?

I experienced it first-hand when I received a liver transplant in 1998 from a cadaver donor.

According to UNOS (United Network for Organ Sharing) there were 112,706 people waiting for an organ transplant as of Oct. 28, 2011 at 8:07 pm.  Compare that to the 16,416 actual transplants performed between January and July of 2011.  That means less than 20% of the people on the list will actually receive a transplant and that is exactly what my doctor told me when I was given the news that I needed a liver.

There isn’t always a ‘happy ever after’ when you receive a transplant.

If you are one of the lucky <20% (like I was) it doesn’t mean your crisis is over.  Of the people who receive organ transplants another 20% of those organs will be rejected by the recipient’s bodies.  This can happen for various reasons, but the end results are the same, you will slowly die unless another donor organ can be found in time, something that very rarely happens.

A transplant is not an instant cure that leaves the patient with no more problems.

I was lucky, my liver was not rejected.  After the surgery, I was given huge doses of steroids to lower my immune system and reduce the possibility of rejection.  The steroids cause a lot of side effects such as swelling and reduced muscle function of the legs.  I literally swelled so much that I didn’t recognize myself in the mirror.  My thigh muscles were so severely weakened that I couldn’t step-up more than one inch.  I had to do therapy for 2 ½ months to get my muscle tone and endurance back.

Although the immunosuppressant medications are necessary for the rest of my life to prevent rejection of the liver, these medications come with side effect causing me to take more medications to combat them.  I currently take 27 pills per day most of which are for problems caused by the transplant meds.

°         Increased blood pressure

°         Increased cholesterol levels

°         Increased risk of skin cancer

°         Sleep disturbance

°         Depression/Anxiety

°         Increase bleeding and bruising

°         Numbness and trembling of the hands

°         Nausea/Loss of appetite

°         Increased hair growth

°         High potassium levels

°         Low magnesium levels

Aside from the side effects the medication, the med levels must be monitored with frequent lab work. Doctor’s must adjust the medication levels often to prevent such problems as kidney damage.  I have had my transplant for 13 years and still require lab work every 4 weeks for monitoring.  That is why many patients have a portacath.  The repeated needle sticks causes blood vessels to scar so heavily they cannot be used.  My port was surgically inserted in 1997, while I was still on the transplant list.

I don’t mean to sound ungrateful or depressing.  I am very thankful to the person who donated their liver so that I could live.  I think about them almost every day, especially the trauma the family experienced loosing their loved one.

There are still more complications that can occur after a transplant that I will explain in a later post. I would love to hear from other transplant patients about their personal experiences. Also, send your questions and comments.