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It is now the beginning of May 2005. This will be the last chapter to my transplant story. I set out to write all this for two reasons. The first was for the purpose of allowing me an outlet to express the insanity of the entire situation, which I hoped would allow me to begin to heal.
The second reason was to inform people of the dangers of assuming that “it can’t happen to you.” The motto “ignorance is bliss” will not get you very far.
I discovered a great deal about myself while writing this story. I realized that life is far too short to allow friendships die away. We are who we are because of the influences of those around us. I have been blessed to know some wonderful people. I have developed relationships with people from all over the country and through this story, have been able to reconnect with friends I’d not heard from in years.
For these things, I am eternally grateful.
When I began to write this last chapter, I had just began recovering from what I hope was the last surgical procedure I’ll ever need. About a week after my transplant, I needed to have a leak repaired in one of my arteries (see chapter 5). At that time, Dr. Garcia accessed my heart from a lower spot on my chest. In doing so, he inadvertently caused a rupture of my stomach lining which led to an Incisional Hernia. This type of hernia in not uncommon and is one of the risks of having surgery. Usually, the hernia is repaired shortly after the original surgery. If left untreated, there could be serious complications. However, since my body had been through so much trauma, the doctor felt it wise to wait a full year before repairing it.
The worst part of it was that I began to look pregnant. As the year passed, the hernia became larger and larger.
In August of 2003, we moved to Chicago. The kids were all set for school, we had a place to live and we had some good friends there. Our new street was bustling with Jewish children and we lived on a block we had always liked.
But, once again, it wasn’t smooth sailing ahead.
Just about a month after we arrived, I started to notice that my breathing was forced and that walking up the stairs wasn’t as easy as before. Finally, on a Saturday night, I became a little anxious and just didn’t feel right. I called my old friend, Nachie, and asked him to drive me to the emergency room.
I had known Nachie since high school. Almost immediately, he and I became best friends. We were inseparable. After we graduated, I went back to Texas and he remained in California. However, we stayed in touch and ended up living near each other in Miami and Chicago. He was the best man at my wedding and I was the best man at his. Of course, I was more sober at his than he was at mine, but that was part of his charm. He made quite a life for himself in Chicago and has been blessed with five beautiful children.
Although my records were transferred to my new doctors, I had not met any of them. Sherman strongly recommended transplant team at the University of Chicago Hospital. According to the research I did in advance to moving, U. of C. was considered to be the best transplant hospital in the area and one of the top 5 in the country.
I was brought into a room almost immediately while they checked to see if I was suffering another heart attack. The gave me a nitroglycerin tablet and an IV. It wasn’t long before they determined that I wasn’t having another attack. However, they had no clue what was wrong. After discussing the matter with my new doctors, the ER staff decided to admit me.
The next morning, I met Dr. Allen Anderson. He informed me that he would schedule me for a biopsy and a series of blood tests in to order to determine what was wrong. Since I was also having sinus issues, we both assumed that the probable cause was a sinus infection. But, considering my medical condition, he felt it best to be sure. Furthermore, he felt that if it is just that, I should be able to go home in a couple of days.
The biopsy took place the next day and the blood results the day after that. Both came back fine, with one exception. My blood levels showed that I was severely anemic. This concerned him a great deal (and me as well). It did make a lot of sense, though. My hands and feet were always very cold, I was constantly tired and my appetite suffered. Dr. Anderson wanted to do some further tests to understand the cause of the anemia. He had a hunch of what it might be, but he wanted to be sure.
After a couple of more tests, the doctor informed me that the anemia was caused by damage to my kidneys (or was it the other way around?). He deduced that there were two possibilities for this. Either my kidneys were previously damaged or something had recently happened that would distress them. On his hunch, he ordered yet another round of tests. From these, he concluded that what was causing all the problems was that I was having a humoral rejection.
A humoral rejection is the most severe type, with the exception of an immediate acute rejection (which can kill instantly). Because of the immediate need to transfer my donors’ heart to New York, Dr. Garcia did not have the time to insure that my donors’ antibodies matched mine. It’s not infrequent in cases like this and often times, there is no cause for concern. However, in this case, our antibodies clashed. In a cellular rejection – the type I had six months prior – my body started to reject the new organ. In this case, it was his antibodies that were causing the problem. About 18% of heart recipients have this pattern of rejection and they have a one-year survival of 67% and a 5-year survival of 36%. These patients are 8 times more likely than others to lose their donor heart. However, in my case, it was discovered so early that my chances of clearing up the problem completely was excellent.
Dr. Anderson immediately ordered a procedure to correct the problem. For the next three weeks, I had to return to the hospital every other day, to receive plasmapheresis treatments. Basically what this means is that they run my blood through a machine that separates the blood cells from the plasma, where the antibodies live. Then they add a synthetic plasma back into my artery along with the blood cells. They would do this seven times each day. Each procedure took about 3 hours and was not painful at all.
After they finished, I was sent to another lab where they would inject intravenous immunoglobulin (IVIG). Although this procedure also took a few hours, they gave me 50mg of Benedryl to stop any possible reaction. By the end of each day, I was wiped out.
After the three weeks ended, Dr. Anderson did some more tests and determined that the rejection had been corrected. However, the damage done to my kidneys needed to be monitored very closely. Thankfully, I do not need dialysis, or heaven forbid, a kidney transplant. But, I do have to go back every two weeks to receive an Aranesp© injection – to increase my red blood cells. Apparently, I will continue to do this indefinitely.
When most people go through a major trauma, depression soon follows. Whether they have suffered a loss of a loved one, a serious illness or any other shock, soon after they recover the reality of what has happened hits them. Usually, it’s preceded by what can be described as a numbing feeling that permeates deep in their being.
According to many transplant recipients that I have corresponded with, the depression usually begins soon after the sufferer has reached a plateau in their recovery. The clinical name – I suppose – is post traumatic stress disorder (PTSD).
Well apparently, I’m not “most people”. Either that, or I was just so unwell that it took a long time to realize I had hit that plateau. It wasn’t until March 2004 that my outlook on life started changing. I didn’t notice it a first, but in retrospect, the signs were all there.
I guess my first clue was when I started to rediscover country music. As cliché-ish as it sounds, country music can be quite depressing. I began to assess my life from beginning to now and realized that I really didn’t like what I saw. The old joke states that when you listen to a country song backwards, you get your house back, your truck back and your girl back. Unfortunately, real life isn’t as simple.
I started to face all the letdowns – be they job losses, lost loved ones or even lost loves – in a way I never had before. I began to relive tragic memories as if the had just occurred. Some were events that had happened over 30 years ago.
All of these things were pushed way down in my soul. After all that had happened in my life, whether they were of my own fault or just a matter of pure bad luck, it was a matter of personal survival just to face each day.
So I did what a lot of people do. I went into denial.
Not completely, mind you. I just buried it very, very deep and went about life. At times, they would creep into my thoughts. They must have appeared in my actions as well, because as I reflected on my past, I recognized certain patterns that affected my relationships with my friends, wife and children.
The problem was that by not facing the reasons or even just moving on causes the same mistakes and the same consequences to occur.
Around the end of April, certain realities began to hit me in the face. Some of them too personal to share in this forum. It started with just a mild sadness that would stop me whenever I heard a song that brought me back to what I had believed to be the “good old days.” Then it started to infiltrate into my daily routine.
Around this time, I decided to write my transplant story. My feeling was that maybe, by rehashing it all, I could unlock the doors that had long ago been sealed. Another reason was to force me to come to terms with what had happened to me so I could move on in the right direction.
Boy, oh boy. I had no idea what I was getting myself into.
Writing the story was the easy part. Remembering everything was brutal.
Through this project, I discovered that I was never the husband I should have been. I was never the father I promised myself I would be and never the friend I should have been.
The toughest part of this revelation was the idea that although I realized it, I didn’t know if I could ever do anything about it. I just wanted to live that country song backwards. I had no job prospects – actually, I was convinced I wasn’t well enough. My life was stressing me out tremendously. I was deeply ashamed of how I had let Renee down. I never cheated on her or G-d forbid, physically hurt her, but I withdrew from her and the kids emotionally. I found myself resenting my wife because she was withdrawing from me. Problem was, she had a good reason. I didn’t.
All of this realizations seemed to hit me while writing my story. I couldn’t sleep. I started to lose even more weight (and hair) and I cried. Oh how I cried.
In the last 20 years, I can only remember really crying just a few times. But I never cried this hard for this long.
I felt like I had just awoken from a 20 year sleep. In my quest to remember everything that happened during my illness, I seemed to have opened my memory bank too far and flooded my mind with events and people I hadn’t thought of or about in years. The wounds I suffered in my past all became fresh and new all over again.
Even when I went through my depression during my hospital stay, I don’t think I felt as horrible. I wasn’t suicidal (this time), but I was very, very sad. Constantly sad.
In the hospital, my depression was all about what I thought I could no longer do, what my life would now be like. I was bitter and angry that I had to go through this. Yes, the thought of what this was doing to Renee depressed me further, but honestly, it paled in comparison to what it was doing to me.
This time, my depression was all about what I had done.
I can no longer count the number of times I wished I hadn’t survived. Jewish tradition teaches that death is a purifier for the sins of life. I really started to believe that if I would have been taken that night in September, the sadness and the pain would have died with me. Instead, what I was left with was not only the pain and sadness, but of the frustration of not being able to do anything about it. In my soul, I truly believed I would have been better off dead. It would have been less painful. Yet, I didn’t want to die. I wanted to make it right.
After talking it over with Renee, who was clearly at her wits end already, I decided to seek therapy.
I went through a horrible experience that I don’t wish upon anyone. Although I’ve never shied from being hyperbolic, it truly was as bad as I made it out. However, because of both my being sick and being so needy, I failed to see that I wasn’t the only one going through hell.
My wife, Renee had stuck by me through some very difficult times. She was there for me when I changed jobs. She was there for me when I had back surgery. She was there for me whenever I needed a friend. Now, she was faced with something bigger than anything before. Perhaps if this was the first ordeal that we went though together, it wouldn’t have been so overwhelming. But in a matter of moments, she went from being a wife and mother to being both parents as well as my only support system.
I hadn’t really thought of the hardship it caused her. My focus was really only on myself. But as I started to reflect on our lives together, and on our relationship, it struck me that I had always been selfish. Many of the disagreements we had over the years, many of our moves and many of our problems were mostly due to my inability to grow up.
It suddenly dawned on me that I was the one who had been hurting our marriage and I was the one who wasn’t always there for my kids. Oh, I had my excuses. My back was sore, my boss is crazy, I’m too tired, I’m busy…
All of things were often true (especially the boss part), but I used them as an excuse to hide from responsibility instead of taking it upon myself to overcome them.
As I began therapy, I saw myself as who I was. With the help of a very intuitive therapist, I began to rebuild my life in a direction that I always wanted to go, but never knew how to get to. I began to see progress almost immediately. My writing was getting more proficient, my household duties were not tiring me out as much and my attitude and treatment of my family was considerably more optimistic and pleasurable.
The beginning was rough. However, my website and blog kept me grounded. Back in April, I got the notion that perhaps I needed to find an outlet to express my feelings and opinions about things that were important to me. Although I had written a couple of songs for a Jewish music CD (of which I may have been the only buyer), I never really had any desire to write. But, for some odd reason, I woke up one Saturday morning with the desire to not only write my story, but to create a blog, which I could use to reconnect with my past. I had absolutely no idea about how to go about it, but I did what anyone would do in this situation. I called my friend, Jeff.
Back in the old days (1997 actually), Jeff was constantly criticizing me for being anchored in the 20th Century while the world was moving towards the 21st. While everyone (it seemed) was buying computers and getting internet access with AOL, I was bringing up the rear on WebTV. Jeff was always trying to drag – kicking and screaming – to the next “big” thing. Usually, he was right (although exception must be made for his teaching my daughter the lyrics to “Barbie Girl”).
Anyway, I called (or emailed or IM’ed) him and he gave me some direction. The rest, as they say, is history.
During the past year, I have found items that I had forgotten about. One of these items tells a much better story than I could ever hope. Within the first few days after my transplant, I had to begin re-learning how to once again function as a normal human being. One of the biggest challenges was learning how to write again. This one was tough because on top of having very little strength or dexterity in my hands, my anti-rejection medicine caused serious tremors.
To truly appreciate the struggle I went through, and the progress I made, I have attached part of a diary I was assigned to write by my O.T. The first image was written between November 7 and November 12, 2002. The second one is from November 13-14, 2002. Ironically, that turned out to be the day of my discharge.