Waiting For Your Heart Transplant

| December 7, 2010 | 2 Comments

According to the OPTN – UNOS website, as of 12-07-10:

* There are 3,206 persons waiting for a heart transplant tonight.

* As of 12-07-10, 1,569 heart transplants have been performed.

* In Florida, there are 132 persons awaiting heart transplantation.

* In New York State, there are 320 persons waiting for a heart transplant.

* At Tampa General, 30 people are registered for heart transplantation.

* Of the 30, 2 are status 1A, 9 are status 1B, 4 are status 2 and 15 are status 7, or temporarily inactive.

All this information is available on the OPTN site and collated by state, region and center. To visit the data center, use this link:  http://optn.transplant.hrsa.gov/latestData/viewDataReports.asp 

Waiting for your heart transplant often seems an incomprehensible test of will and discipline that few can understand. Waiting for the blessing is filled with irony, the least of which is that for you to get better, an unfortunate soul needs to die.

That will trigger sadness on one end and hope on your end. Waiting is sad, even tragic, because the organ that will save your life will come at the tragic expense of a generous donor.

Even now, I feel pangs of guilt about my 25-year old donor and his tragic Sunday ride on his motorcycle. How was he to know that would be his last ride? How was he to know that he would never see his family again? I constantly wonder if he had children.

Yes, waiting for a heart is emotionally and physically challenging. It will test your grit and the grit of those close to you. Much of the time, you might feel bewildered by the experience.

The first thing every wait list patient must do is decide to be compliant. There are no excuses and a zero tolerance level for non-compliant patients. That means take care of yourself. That means eat responsibly, consume liquids as prescribed and take medicines exactly as instructed.

You will be caught between a need to be as healthy as possible and the harsh reality that you will only receive an offer for transplant if you are just sick enough, another irony of the wait list dilemma.

Patients waiting for heart transplants are classified as status 1A, status 1B, status 2 or status 7. These days very few status 2’s receive organs. If you are status 2, you have been admitted to a heart transplant program. You are in the care of a cardiologist. You will have regular appointments with that physician and are self-sufficient in that you are not hospitalized and are not connected to any life-assisting devices or intravenous medications.

Once you are connected to an intravenous medicine such a Primacor, you are considered a status 1B. Status 1B’s are considered excellent candidates for heart transplantation. Status 1B patients can either be hospitalized or at home but they are all on some sort of intravenous feed.

Statues 1A patients are usually on an LVAD or some other form of life support machine. All status 1A patients are in the hospital. Unfortunately it is a fine line between being just sick enough to receive the new heart and being too sick.

Status 7 patients are temporarily inactive. This status can be achieved by an number of means. Status 7’s accrue time but are unavailable for transplantation.

Your heart transplant center is obligated to update your status with UNOS as soon as your status changes. As happened to me on several occasions, I was hospitalized after the results of a cauterization were determined.

In those cases, I entered the hospital for the test as a status 2. When I was admitted and placed on an intravenous feed with Primacor, I became a status 1B. I felt that was the ideal status to receive the organ because I was sick enough to qualify but well enough not to have needed an LVAD, a pretty invasive surgical procedure in its own right.

During my two year wait as a status 2, I underwent a complete diet change, went through periods of incredibly low energy, constantly struggled to breathe and lost several emotional battles. The weight of the wait was felt by every member of my family.

Additionally, the more active I tried to be, it seemed the more cynical some friends became. I must say that the education programs at Columbia Presbyterian were beneficial in many ways. I believe they have had to stop the classes for financial reasons. At one class, the speaker warned of what people around you might not understand about end stage heart disease.

To be honest, I was confused about my illness so why wouldn’t friends be confused. I never thought I was about to die. I simply could not do things that once came so easily. However, when the sight of a flight of stairs turned my stomach or when simple things like putting on my shoes seemed exhausting, I knew I was in trouble.

When I began to feel very sick, Dr. Hoffman talked to me. She said that I must not get caught up in thinking about how little energy I had or about the waiting process. Instead, I was to grab each day. I was to push to do things I enjoyed.

I remember thinking, “Is she crazy? No wonder I am not receiving a heart!” But, she was right because every time I pushed just a little harder, worked to get in better shape, I was able to enjoy life and interactions with family and friends that much more.

I do not mean to imply that it was easy or even that everyone can act that way. I understand that many status 2’s and status 1B’s just cannot push any harder. I get it, but boy is it hard on the loved ones around you when they see you failing and unable to get better.

For me, I chose to relocate to Florida because I believed I had a better chance to receive an organ there. I was fortunate to have a son and daughter-in-law-to-be living in Fort Myers. I realize now what an imposition it was. I was no bargain.

When I moved closer to Tampa General, I felt I was taking charge of my life and my destiny. It was now up to me to cook and eat responsibly, to set a structure that included some sort of exercise program and to take every medicine every day. I began to write and read to keep my brain busy.

My wife visited whenever she was able. The responsibilities of life and family keep right on going.

Suzanne is a health and fitness wonder. It was difficult for her to see what was happening to me. It was difficult for her to understand that there was little I could do to stay productive, to laugh or enjoy some of the interests we shared.

Each week I would check the UNOS – OPTN wait list site to see how many transplants had been performed in a week. I knew how many patients in my blood type were waiting and I knew that I had accrued a lot of time.   Sometimes, the numbers confused me. In fact, knowing this information did nothing to increase my chances of obtaining an organ. In large part, there is nothing a patient can do to move up on the list.

Remember that if you are non-compliant, you will not receive an organ. In hindsight, Dr. Hoffman had it right. Get the most you can from each day and do things that are healthy.

That is the best formula for success because you have no control over when and even if the call will come. Keep your chin up. Never forget the goal line but enjoy life. That way, when the call does come, you will be ready for the recovery of your life.

Filed in: OPTN-UNOS, Waiting
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2 Comments on "Waiting For Your Heart Transplant"

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  1. Samantha says:

    Thank you for this post. My husband was listed for a heart transplant on Dec. 3rd. Everyone we’ve met through Facebook that have had heart transplants have been talking to him about how much better he’ll feel after he has the transplant, and all the things he will be able to do, but everyone fails to mention the wait until that time comes.

  2. lyn stokes says:

    my son has been on the transplant list for 3weeks, he has been sick for 7years, they said he was not on the list before as he got very depprested for a couple of years, and the affect of the drugs you have to take can cause deppresion ,so the said they could not be concided for a transplant as he could hurt himself and waste a organ,i think that was wrong as they give others a chance at life who have drug or other types of problems,i hope now they have left enough time for him to be able to recieve this gift of life.

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