With Health Issues We Must Advocate For Ourselves
Heart Transplant Recipient and Long Island TRIO Volunteer Bobby Seeback helps with Donate Life Registry enrollments, speaking at high schools with the LI TRIO Speakers and other significant volunteer activities.
Bobby loves and cherishes his twin boys and is a caring and wonderful father.
On September 17th I was riding my motorcycle through Astoria Queens at five o’clock in the morning when suddenly I saw headlights flashing in my face. Before I could react I was struck by a large sanitation truck. Shortly after being taken to an emergency room it was determined that nothing was broken but the doctors discovered a tumor in my neck on a cat scan. Several days later, it was diagnosed as Hodgkins disease a form of cancer. More tests were taken and my spleen was removed to see if it had spread anywhere else in my body. It had not and it was then determined that they would treat me with 30 days worth of radiation.
After the 30 days I was told that I was in remission. They told me to come back periodically for checkups but I never went because I was afraid that they would find something. Two years later I began losing my voice while singing with a band. My regular doctor told me that it was caused by stress and that it would go away on its own but I didn’t believe him. I felt something more was wrong.
I returned to the oncology clinic at Long Island Jewish hospital and was given several different tests and another cat scan. My worst fears were confirmed the cancer had returned and this time it was much worse. An exploratory surgery was done where they removed several lymph nodes and my appendix. Afterward I was treated with 13 courses of chemotherapy. The chemo made me sick every month but I had to keep on fighting. Eventually I was told that I was in remission again but I should again return for periodic check ups. This time I listened. It was a smart move because four months later in April of 94, a dark spot was found at the bottom of my right lung. They tried to get a piece of it with a long needle but that didn’t work so again I had to be cut open. This time they removed the lower lobe of my right lung. The spot was Hodgkin’s and I was now staged at stage 4 the most advanced stage since cancer was now found in a major organ.
Now my doctors had to get more aggressive in treatment. They told me that I needed a bone marrow transplant. The doctors at Schneiders Children’s Hospital decided to use a new technique called a stem cell transplant. These are new cells that are not yet programmed. The idea is to put the patient in a completely germ free environment and treat them with very toxic chemotherapies. Since the chemo kills good and bad cells, a special room is required so that no bacteria or viruses can fester. This room is cleaned with alcohol every day to kill bacteria. Then the patient is given the chemo. After several days the chemo begins to take effect killing off good and bad cells.
Afterward the stem cells are administered and they rebuild the immunity cells that were destroyed. For me this entire process took 30 days and I was able to leave the hospital but had to wear a mask and gloves to avoid infection. Lucky for me it was Halloween. Upon leaving I was told that I was once again in remission and that this time it was for good. However, about 6 months later I began find myself short of breath.
I thought it was asthma so I kept taking doses from my inhaler. But, it did not work and I got worse. Finally while trying to perform a jazz gig in Pennsylvania with some older fellows, I could not breathe at all. The next day when I re- turned home I went to see my cardiologist and he ran several tests. He then brought me into his office to deliver a diagnosis that hit me like a hammer. He told me that I was experiencing congestive heart failure and that I had only two months to live. I left his office in shock not knowing what I was going to do. Just like that my life would be over. Then, I spoke to a nurse practitioner who asked me if a heart transplant could be done. She explained how they took a donor heart from a deceased donor and put it in a live person to replace their failing heart.
I asked my cardiologist about it but he said that because I had had cancer I was a poor candidate to recommend for a heart transplant. He said that he would men- tion me to the transplant team at Columbia Presbyterian but to not get my hopes up. After a week had gone by and there was still no answer I called my doctor and asked him what had happened. He said that he still had not sent the recom- mendation in but would get to it.
At that time I began drafting a letter myself. I got the name of a Dr. Drusin through a friend who said Drusin was on the board that made decisions with respect to transplant recipients. Dr. Drusin read my letter and wrote back saying that Hodgkin’s is usually fairly curable and once it is under control it rarely comes back. He said that if I was in remission for one year that they could put me on the list. He closed by asking that I make an appointment to come in for a check up.
I did not realize at that time that the check up was to make sure nothing else was wrong so that there would be no surprises if a transplantable organ came in. While there they gave me an IV with a medication called Dobutamine. This was to give my enlarged heart more power each time it beat. This would keep me alive long enough to get transplanted.
I lasted a year and a month with the Dobutamine but then had to be admitted into the hospital. While I was there, there were eleven other people waiting for heart transplants on the same floor. Everyone was wondering if they would survive long enough to make it to the operating table. It made me think about whether or not I deserved to live. I swore I would do good things if I did.
Then, 4 months later when I was just about to give up, one of the nurses came into my room and told me that I had to get ready because a donor heart had come in that might be a match for me. It was and on March 17, 1996 I received my heart. I remember waking up and feeling that my feet were warm. For years they were always cold.