My Transplant Journey: Getting on the Transplant List

I DID IT TWICE

I am fairly familiar with the process for getting on the transplant list. I did it twice. Once at Tufts Medical Center and then 3 years later at Beth Israel Deaconess Medical Center. Both located in Boston. There is a long story behind why I changed hospitals. The short version is that my cardiologist at Tufts had a specialty important to me (cardiac sarcoidosis). She left the area for career advancement. I sought out and found a new cardiologist who had that specialty at Beth Israel Deaconess. It turned out they are friends and colleagues.

THE PROCESS

The main goal of a medical center’s admission process to the transplant list is to show a high probability of long-term success. To find out this, the patient will take part in some tests. The patient will also meet with a variety of medical professionals. After the meetings and medical tests, a committee reviews the patient’s case. They make a decision on admission to the list.

The reason for the rigorous evaluation is the limited supply of donor hearts. There are not enough for all the people who need them. The team ensures that each heart is donated to a patient who can follow the post-transplant directives. Every effort is made to select the right recipient. The medical team also wants to identify any underlying health issues. These could pose a risk to the success for the patient and the donor heart.

Here are some of the medical professionals my wife Lauren and I met with:

• The Social Worker – Review the family background and history. This is mainly to understand if there is support (caregiver) for the patient post-transplant.
  
• The Pharmacist – A review of all the medications currently being taken pre-transplant. It also includes a review of the most likely medications to be taken post-transplant. Almost all of them are different. Many of them are lifetime.
  
• The Psychologist – A basic understanding of mental health history and a short cognitive ability test. I was required to attend this meeting alone. My wife was not allowed to be present.
  
• Financial Assistance – A review of the patient’s medical insurance and expected estimated expenses. This includes the on-going expense of medication post-transplant.
  
• The Transplant Surgeon – Provides the patient, caregiver and surgeon an opportunity to meet, ask basic questions about the transplant surgery procedure and the recovery.
  
• Infectious Disease – A review of any pertinent patient history is essential. Additionally, patients need an explanation of life after transplant to avoid infection. Managing and preventing organ rejection entails living with a suppressed immune system, also lifetime. As such, patients are more susceptible to infection.
  
• Dietitian – A discussion to make sure the patient understands the dietary changes required and any current unique dietary requirements. Again, the suppressed immune system rules out certain foods. It’s the only time a doctor will recommend ordering a cheeseburger at a restaurant instead of a salad. I will explain later.
  
• Blood work and any other testing or imaging based on a patient’s specific circumstance.

The bottom-line question: Can the patient survive the surgery and successfully manage life after transplant long term.

PERSONAL INSIGHTS

To a person, each of these meetings were handled with sensitivity, understanding and kindness by the medical staff. This is true of both Tufts and Beth Israel. They had a keen awareness that I was well into advanced heart failure. I could not climb a flight of stairs without resting. I had been shocked 6 times by the defibrillator in my implanted cardiac device.

My suggestion to anyone going through these would be to treat it like the educational opportunity that it is. My wife Lauren attended these meetings and it was invaluable to have her there. Bring a notebook. Have a list of questions prepared. You are being interviewed to be a candidate. You are also interviewing them to understand as much as you can for any decisions you need to make. As a patient treat this like a college course. There is much to learn.

INFECTIOUS DISEASE

One of the interesting interactions we had was with a doctor in the Infectious Disease department. That doctor asked me a series of routine questions about my medical history. She inquired about my personal habits. Then she asked a question that I did not expect. She asked if I had ever walked on the sand in Florida. I thought for a moment. I told her that I had. She said I need to be tested. A specific parasite is known to exist in the Florida sand.

This parasite, called Strongyloides Stercoralis, can lie harmlessly dormant in the body. Once immunosuppressive medications are introduced into the body, this dormant organism can come to life. It can rapidly multiply and pose a potentially fatal situation. It was explained that if I test for this parasite now and it’s positive, no problem. I take 2 pills, the sleeping parasite is eradicated, and the threat is removed. Oh, and for the rest of my life after a heart transplant, I should avoid walking barefoot in the Florida sand. This also applies to other places in the tropics.

I thought about that little story about the parasite in the sand in Florida. The first thing I wondered was how many heart transplant recipients died from this parasite before they figured that out. Pulling on that thread, every piece of guidance and each pill taken as instructed likely came the hard way. Each mandate post-transplant probably emerged from trial and error. People experienced shortened lives after a transplant. It behooves us to pay attention and strive to comply.

PHARMACIST

Another noteworthy meeting we had was with the pharmacist. He was very nice as he reviewed all of the medications I was taking to treat my heart failure. Lauren was managing this area for me, so naturally she answered most of his questions. He wanted to know the following:

• The name of the medication.
• What dose was I taking
• What time of day did I take each
• Did I know what it was for? What did it treat?
• Did I know how long I would be taking it?

I was taking 8 or 10 different pills every day.

Once completed he then explained in detail all medications I would likely take were I to get a heart transplant. The meeting adjourned. I thought it went fine.

I went into the portal a day or two later and read his notes. It was all well and good until I saw this noted on the form in his notes. It read:

“The patient understands all the medications being. taken, their purpose dose and time of day – Yes / No” – He indicated “NO”.

That was a wake up call for me. He was stating, correctly, that I didn’t have a firm grasp on my medications. It was true. I was leaning to much on Lauren. I should know all of that information. It was interesting that he put this in his notes but did not mention it to me. For awhile I was worried that his observation would remove me from candidacy.

I endeavored to be better. I still struggle with it. I will have separate post dedicated to managing medications. After my transplant I thanked him for his constructive criticism.

OTHER TESTING

One thing I clearly remember is the blood draw that was ordered as part of this process. The lab drew 28 vials of blood which by itself gives a clear picture of how thorough the testing is. That took some time because while in my heart failure those vials are very slow to fill.

Heart failure is hard on kidneys. I was also suffering from kidney disease a by-product of lack of blood flow. I was scheduled to see and meet with a Nephrologist.

Sarcoidosis is most common in the lungs. Because I was diagnosed with cardiac sarcoidosis I needed to see a Pulmonologist and have a pulmonary function test. One of my least favorite tests. For anyone who has done this you understand. I did not have sarcoid in my lungs.

I had already done numerous echo cardiograms, MRIs, CTs, ECGs, heart catheterizations, and stress tests and had an implanted cardiac device prior to this.

ADVISED TO GET ON THE LIST

I was not all that shocked when my cardiologist, at Tufts, who thought very highly of, told my wife Lauren and I that I should get on the transplant list. She said it so routinely. We were sitting in an exam room, the doctor sitting on the low round swivel chair looking at data on a flat screen. “Ya know what?” She said with her hand resting on her chin in her British accent. “You should get on the heart transplant list.”

When the doctor said that I was looking at Lauren. Her reaction was almost the same as the expression she had many years ago while in labor when she had her first contraction. Shock & surprise, for sure. But the overriding countenance was that of bewilderment. What that meant for me. What that meant for her. Hearing it out loud. We both knew I was in bad shape, but a heart transplant? Wow!

It did make sense. The damage to my heart from a rare disease called Sarcoidosis was significant. It was irreparable and extensive. I was never going to get any better. By making that suggestion that doctor saved my life.

We were told that getting on the list now would be beneficial. Once on the list, the patient earns credit for time waiting. If a heart becomes available and all other variables are equal, the heart will be offered will to the person who has waited longer.

I waited for my heart for over 3 years. The predominant reason I waited so long was I was designated as a Level 6 on the priority scale. That is the lowest priority. In the next post, I will explain the priority list. I will also share what I know about how the rare and precious hearts are allocated.