Tag Archive | Immunosuppressants

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.