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“I wasn't strong enough to see where my weakness lay - the world that you hold so tight could slip away - and from moment to moment your life can change - there's a storm over the horizon, sea no one can see…” – America (“Moment to Moment”)

As the song above describes, life can change in a minute. Sometimes for the best, sometimes for the worst. Sometimes it feels like it’s for the best, but it turns out to be for the worst. Sometimes you think it’s for the worst, and it turns out for the best.

But it changes.

I woke up from the surgery on Friday morning (the next day). Although I was technically awake, I faded in and out for a while. When I started to become aware of where I was, I noticed that I felt like I had a 100 pound weight on my chest. It made me feel like I was hot and unable to breathe well. I looked over to my left and saw Sherman (Casanova – the transplant coordinator) looking at me. He smiled and said that everything went well and I had a new heart. I felt an overwhelming sense of relief. Because I had so little time to prepare myself emotionally for the transplant, I never really considered the fact that I might not wake up. I guess I should have been more worried, considering what happened the last time I was under general anesthesia, but I just wasn’t. However, now that it was over, I felted incredibly relieved.

Then I realized something. I wasn’t breathing on my own. It occurred to me that I still had a tube in my throat. It was very, very uncomfortable. The more I became aware of it, the more restless I became. The more restless I became, the more difficult my breathing became. My thoughts turned to “why are they torturing me like this?” I wondered why they didn’t wake me until after the tube was removed. G-d, it hurt. I discovered afterwards that the reason they woke me early, was because they were afraid I would not be able to neurologically breathe on my own, like last time. However, I wasn’t thinking about that. Every 5 minutes or so, the told me to stay very still and they would start to pull it out, slowly. But I kept gagging it back and swallowing. I felt very sure that if I relaxed at all, I would not be able to breathe. The thought of dying from suffocation was very real to me. I didn’t want to die, but if I had to, I wanted it to be as painless as possible. Not this way. This was torture. I kept trying to lose consciousness, so I wouldn’t feel anything, but the doctors were relentless.

They would count down with me from five to one and then stop. After what seemed hours, but was probably considerably shorter, I began to notice that with every countdown, I was getting closer and closer to having the damn thing removed. I was becoming increasingly aware and not falling into my own thoughts. It was still very painful. I kept wanting to ask Sherman, or whoever else came around, for an idea of how much longer this would take, but they kept telling me to relax. I began to resent that. I was the one in pain, dammit! But no matter how much I pleaded with my eyes, they still kept saying for me to “relax.” Even today, when I hear myself telling my children to “relax,” I cringe a little.

I realized that this was for my own good. I decided to not fight it and wait it out. I still couldn’t understand what was taking so long, but as time went on, I sensed it wouldn’t be too much longer. Slowly, it started to feel like they were almost done. They would count down and it seemed they were oh so close, only to stop and wait a few more minutes. But it was getting closer.

Finally, they managed to pull it out. All of the sudden, I could breathe in a deep breath! It was heavenly! I didn’t want to ever feel that way again. I wanted to breathe! It was wonderful. The doctor explained that, due to my not waking from the bypass, they felt it best to make sure I was awake when they extubated me. They apparently feared the same reaction as last time. The problem as I saw it was that I had been under general anesthesia a number of times before, without a reaction and I felt that the coma was not caused by the anesthesia, but by the stroke. Of course, I just had the stroke 3 weeks earlier, so I guess they were concerned because I would be on the bypass machine again, while they replaced my heart.

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Soon after I woke up, Renee came in to see me. She tried to see me before the transplant – after receiving the call from Sherman, she quickly dressed the kids, got them to each of their schools, called her father, Mike and Debbie, and headed to the Bronx, only to find that it was in the middle of rush hour (and if you know New York, you know that there is no such thing as an alternate, faster route) – only to get there less than 10 minutes after they brought
me into the OR.

She spent the whole day and evening alone in the waiting room. I guess that since it was so sudden, no one came to be with her. I was surprised, however (when she told me later), that by the evening, still no one was able to come and to support her. I’m sure they all had good reasons, but it would have helped. She spent the hours waiting and calling family and friends, to keep them informed. However, the medical staff rarely came out to update her, she had little news to share. It must have been a very, very long day for her.

At around 8pm, Dr. Garcia came out and told her that there was about an hour left of the operation and that I was doing well. Apparently, the heart, coming from somewhere in the Midwest, had been left on ice to the absolute latest moment (it would die if kept any longer) and was somewhat stiff. They warmed it a lit longer than usual, in order to get it pumping.

Renee came in to see me while I was asleep in the ICU. She spent about 30-45 minutes with me and with talking to the doctors. Then she set out on the long trip back to Brooklyn. Though utterly exhausted, she made a few phone calls on the cell phone to let family and friends know that I was out of surgery.

She came in to see me after I woke up, and only stayed a short while, since she had to go back and pick up the children after school. That was one of the hardest issues I had to deal with, her not being able to spend more time with me. I wasn’t mad, I was just lonely. Truth was, I hardly said anything to her when we were together. It wasn’t like anything new happened on any given day, and what did go on wasn’t very exciting. At least to me.

I remained in the CICU for only two or three more days. I continued to have an aide with me. When I went back to the cardiac ward, I was given my old room back. The cardiac ward was basically a rectangle with rooms around the parameter. However, in one corner, there was a small hallway with two rooms. I was in the second one (farthest from the main corridor). The advantage was that I had more privacy and there was a couch and a table and chairs right outside my room. The disadvantage was that I was so removed from everyone. The hospital set this up this way to seclude me from others who might carry an infection. Since I had been placed on anti-rejection medication, my immune system was suppressed. Otherwise, my body would fight my new organ. Because of this, I was prescribed quite a few medications. At first, I had to take about 20-25 pills in the morning, 3 or four midday and another 10-15 at night. With my desire for food lacking, I was in a constant state of nausea.

Because of this, I started to feel like a leper. Whenever anyone came into the room, they had to wear a gown,  and although, a number of visitors did not do this, wear a mask. Whenever I left my room, I had to wear a mask over my mouth as well. It was hot and uncomfortable, but they made me do it for my own good. I didn’t fight this, but I didn’t like it either.

The day I moved out of the CICU, an elderly gentleman, by the name of Bernstein, came to pay me a visit. It was only the third time since I’d been there that someone from the Bronx Jewish community came to see me (in seven weeks). The first was the Rabbi, who served as rabbinical chaplain for Montefiore. He came to see me on a Thursday, just after I moved upstairs the first time (pre-transplant), and old me he would bring me some grape juice for Friday night. He didn’t. The second time was the young man who saw me the morning of my transplant.

Mr. Bernstein had been a patient in Montefiore a number of times. He had suffered a number of heart attacks, but was still kicking at 80. We spent about 30 minutes talking that first day and he promised he would return. From then on, he came to see me about every three days. In fact, about six months later, I went in for a biopsy and lo and behold, he was in the next bed. Apparently, he had gotten dizzy, dancing at his granddaughter’s wedding. Being a cardiac patient, they check him into the hospital for tests. I enjoyed his company. He was an inspiration. To see his so active and alive, helped me find the strength to get better.

But it wasn’t easy. Boy, it was hard.

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Around the end of the first week, post transplant, I started to come undone. I had worked very, very hard at learning how to walk again, to use a fork and (I know this isn’t what most people want to hear) go to the bathroom myself. Since I came out of the transplant, it seemed that all that work (and it WAS work), had gone for naught. I was devastated. I fell into a deep, dark depression.

I have had a number of reasons through the years to make anyone depressed. I was bullied in school. I blew off college. I severely injured my back when I was 20 (only to finally have corrective surgery 18 years later). I had suffered from peptic ulcers when I was 22 and my professional career did not turn out the way I envisioned it. However, as depressing as this sounds, I had always been an optimistic person. I always saw the silver lining in the clouds. I had gone through depressions before and always learned how to deal with them.

Nothing I ever experienced prepared me for what I was about to go through.

The transplant was on Thursday, October 17th, two days after my fortieth birthday. I was fine until the following Friday. On Friday, I woke up sad. They had decided that I did not need an aide any longer and this was causing me a great deal of anxiety.

I was woken up at around 6am, after sleeping for two or three hours and I felt lousy. After getting weighed, my daily injection (which I still have no idea why) and daily having my blood drawn, I went back to bed. About an hour later, Dr. Lejemtel, one of the members of the transplant team, came in to see me. Each day, one of the team members came in to see me, along with Sherman and two or three residents. Dr. Theirry Lejemtel, along with Dr. Robert Moskowitz, Dr. Greg Cook and Desiree Flick, the head nurse practitioner of the team, would each take turns each day and be on call. For the most part, Sherman and Desiree monitored me the most.

I remember complaining to Dr. Lejemtel about the fact I was still not sleeping much. It was beginning to wear on me. For one thing, my head was in a constant fog. For another thing, the last thing I wanted to do was be awake. I wanted to just sleep and forget what I was going through. In sleep, I wouldn’t know I couldn’t read anymore. In my dreams, I was whole again. After being afraid of falling asleep after my coma, I prayed to not wake up and face another morning. As I was talking to him, I began to cry. He told me that he would ask the team’s psychiatrist to see me, and he would prescribe Benedryl©, to help me sleep at night. This made me feel a little better. Later that morning, I woke from a very short slumber, to see a familiar face. The only problem was I was so scrambled, I thought he was someone else. When he told me he was Gregg Goldenberg, I couldn’t believe it. Gregg had been a close friend for many years, since we both lived in Texas, but I hadn’t seen him for about 12 years. It was at Renee’s and my post wedding party, in East Meadow, Long Island, that Gregg had met his future wife, Joy.

It was great to see him, but embarrassing as well. I always had this arrogance about me that made me feel more important that my friends. Part of it was the fact I was older than most of them, but mostly, I had an superior complex. I was married first, I got a real job first and I thought I had a better handle on things. I assumed that I was looked up to. Having Gregg, or anyone of my friends see me like this, was demoralizing. In hindsight, I learned that I was foolish. Aside from the fact that most of my friends have done better financially than I have, the next few weeks taught me that many of my friends were far superior people than I ever was.

That evening, Renee came to stay for the weekend. She sent the children to Long Beach, where my sister lived, and came to the hospital with real food. As excited as I was to see her, I was very really down. I hardly spoke to her. I didn’t want her to leave, though.

The problem was that I felt this overwhelming burden of guilt. All I kept thinking about was what this was doing to her, and to my family. It struck me that she didn’t deserve this. That she would be far better off, had I not survived this. I kept thinking about the fact that Renee and I went through so much since we married. We dealt with two miscarriages before our first was born, we moved around the country, time after time, and due to many reasons, I could not seem to hold on to a job for more than a few years at a time. I had physical ailments that laid me out, sometimes for months at a time and lately, my temper had been out of control. I had always been a complainer, and a bit of a baby, but she always put up with it.

The idea that Renee now had to not only raise the four children herself, but had to concern herself with a husband who couldn’t think right, couldn’t remember anything, couldn’t walk, couldn’t go to the bathroom alone, couldn’t do just about anything anymore, was diving me crazy. It really wasn’t fair. I hadn’t really understood it either, that evening. I was just sad. Renee brought some chicken and potatoes, which after 7 weeks in the hospital, was like the best meal I ever had. I had, of course, been placed on a restricted diet that was low salt and lower taste. Because I keep Kosher, I was only offered one of five main courses for lunch or dinner. I grew to tolerate certain ones and to hate others. Eventually, the hospital nutritionist came to see me and we decided on a daily menu. Unfortunately, the kitchen staff never adhered to it. The meal I despised the most was fillet of fish. Like all the other Kosher meals, this came frozen and had to be heated. Too often, the dinners were delivered under heated, or overcooked. The fish was simply tasteless. Ever since I got there, I had little or no appetite, so having to eat the fish was very difficult. But Desiree was relentless with her demands that I eat. I had already lost close to 50 pounds since getting sick, and they were concerned that I was not getting enough nourishment. Truth was, besides not being hungry, I had such a difficult time using utensils (I was still shaking quite a bit), I was just too tired to deal with it.

The evening passed without the nurse bringing me Benedryl©. Renee complained to the nurse, who said she would look into it. They tried to page Dr. Lejemtel, but since it was a weekend, and late as well, they were unsuccessful. This made me very, very anxious. Renee’s presence was very soothing, but it wasn’t enough to calm me down. Although I had been very good at burying any anger and frustration, by basically accepting things as they happened, this time I got angry. Both Renee and I made it very clear to the nurse that this was unacceptable. Perhaps it was because I had not had the ability to speak up before, or it was that my brain was healing, but I felt very lucid and concise. I spoke clearly and deliberately to the nurse and made her call the doctor as many times as needed to get him. An hour later, she came in with the Benedryl©. At the time, I didn’t recognize the importance of what I did, being able to think so clearly, but in retrospect, it was the beginning of my healing.

It took about 15 minutes to fall asleep. However, it was short lived. Renee had been given a gurney to sleep on in my room, but couldn’t get comfortable, so she slept on the couch outside my room. I woke up at around 2:30 or 3:00am. I remember being confused and anxious, wondering where I was. I called for Renee a few times, but she must have been asleep. I didn’t want to wake her. I had to use the bathroom, but I didn’t want to wait for the nurse. I was allowed to sit up and stand, but had not the strength to walk on my own. However, when you have to go, you have to go. Normally, it takes the nurse 15-20 minutes to get to me. I figured if I waited that long, I would end up with very wet sheets. So, I stood up, braced myself on the bed frame and… fell. I didn’t mean to, it was just that I tried put my hand down on the bedpost and miscalculated the distance. I felt fine afterwards, but couldn’t get back up. I called for Renee again, and this time she came in and rang for the nurse. Amazingly, until this moment, I had not remembered this. The nurse decided, since I was conscious, to give me a washing and do my blood work. I was angry because I felt that everyone was exaggerating it. Looking back, I realize now that they weren’t. I was tired enough to go back to sleep, afterwards. By the time I awoke again, it was close to 8:30am, which was the latest I slept since I came out of my coma.

They brought me breakfast, which usually consisted of pancakes, french toast or scrambled eggs. At the time, it concerned me that they were serving me so much cholesterol, but I figured they knew what they were doing. However, in retrospect, they were probably not giving me real eggs.  Regardless, they had no taste anyway. They also gave me a cup of tea and a fresh orange. I craved oranges, but I couldn’t peel it. Usually, one of the nurses did that for me.

They did not bring Renee anything. I guess that made sense, but it bothered me. I also found it odd that they brought me the New York Daily News each day. I couldn’t read and had do desire to hear the news. The only story that I noticed was about the beltway sniper, who was in the middle of his rampage. The occupational therapist gave me a small magnifying glass and was working with me on reading. I failed to mention that a week before the transplant, my brother, Mike, sent me a new pair of glasses, so I could see better. I had hoped this would correct my vision problems, but it really didn’t. The best way to describe it, would be to say that I had a hole in my sight. I could look at any object and not see it, or at least pass over it. I still suffer from this trauma today, but it has improved slightly. I’ve learned not to take what I don’t see as proof it isn’t there. If I’m looking for a particular item -for example, if I can’t find the salt in the kitchen, I stop, think about where it should be and then concentrate on each item on each shelf, until I find it. It’s very tedious and tremendously unnerving, but it’s just the way it is now.

Normally, on Shabbos, the TV is on in my room. While I do not allow this at home, we all agreed that since I was so anxious, and usually all alone, it would be better if it were left on, even though I still had little desire to watch. Today, however, since Renee was there to keep me company, I left it off. This gave me an opportunity to ask her to tell me the whole story, from the beginning. I’m sure she had told me, at lest bits and pieces, but for some reason, I wanted to hear it again. Looking back, I realize that I was starting to wake up intellectually.

I guess after she finished telling me the story, I became very withdrawn. I couldn’t take it anymore. I started to remember how I felt the night before. All I could think about was what this was doing to her. I was ashamed, embarrassed and felt so, so guilty. I started to cry. Renee tried to reassure me that we would get through this together, but I was inconsolable.  I just wanted it to end. I wanted to either wake up from this nightmare, or to simply die. I had never felt depression so deeply. Even in the worst of times in my life, I always felt it would get better. This was different. This was much deeper.

About 10:30am, Dr. Lejemtel came in for his morning rounds. Since I first met him a few weeks earlier, I was a little put-off by his bedside manner. In fact, most of the team, I thought, cared very much about my (physical) heart, but little about anything else. I know now that this was not true, that they were doing everything to help me recover, but I needed a “bad guy” to hate. Dr. Lejemtel, and later, Desiree filled this bill. They are both dedicated professional who had a “no nonsense” approach to medicine. I grew to like and respect Desiree quite a bit, although it took longer for Renee. What I appreciated most about them, was the fact that they didn’t care how I felt about them. They were consistent and they made me work hard to recover. They took no crap from me and let me know it. To an extent, Desiree treated me like a child. Looking back, I believe that’s why I got better. She refused to allow me to sit on my ass and make excuses, especially when it came to getting stronger. One of the most torturous demands she made was to have me sit upright in a chair for long periods of time. Normally, this would not be a problem, however, now it was. She would start me at 10 minutes at a time and would later require more and more. I hated that. It kept me from lying down, where my head was much clearer and my body wasn’t as weak. I fought this as much as anything else I did.

The last thing I wanted to do was to tell Dr. Lejemtel my problems. But, Renee already had. She had caught up to him, before he came in to my room to make his rounds. When he asked my what was wrong, I broke down and told him I had lost my will to live. I just couldn’t take it anymore. I just wanted out. Out of the bed, out of the hospital, out of life. I started to think about people like Christopher Reeves, who suffered total paralyzation, and how they were prisoners in their own bodies. I didn’t want to live like that. I didn’t want Renee to have to take care of me. I figured she would inherit my life insurance policy, mourn me for a short while and get over me soon after. Maybe marry a more worthy husband. One who wasn’t so sick and incapable. I just wanted to die.

Dr. Lejemtel told me he would have the team psychiatrist come in and see me. I knew in my heart that this was best. However, I simply closed my eyes and prayed to G-d to take me. I had never been so low in my life. I tried to stop my heart from beating, but obviously could not do it. I asked Renee if it was worth it. If it was worth all that she was going through and would have to go through. I asked her if it would have been better if I would have just died on the table. Deep down, I knew she would say yes, but the way she said it made me feel like I truly was blessed when I married her. At the time, she was my only comfort. The only reason to live. I cared not about the children – if you know me, you know how strongly I love and adore my kids – or anything else.

That afternoon, two social workers came in to see me. Apparently, since I mentioned that I wanted to kill myself, which I apparently said outright to Renee, their policy is immediate intervention. They started to do what many social workers do. They asked me about my feelings. They started to make me feel even worse than I was already. Now that I was so despondent about what I felt is was doing to Renee, they gave me the additional guilt of wasting my donor’s heart. Surprisingly, That did not help (gee, I wonder why).  However, because it was Saturday, the psychiatrist was not available, except for emergencies. I guess if I actually had the strength to get out of bed and jump out of the window, that might be considered an emergency. Renee’s attitude was much more severe. She was extremely upset that the team did not feel I need to be seen by the psychiatrist until now. After all I had been through, she felt, correctly so, that I should have been monitored by the mental health folks long before now. But that was a moot point now. There were a number of situations that came up over the span of my stay at Montefiore that was similar, including my sleeping problem and a problem with my feet.

While I was in the coma, they neglected the fact that my feet had become very dry. Now, four weeks later, I developed a black sore on the side of my left foot. It was painful and ugly (not that I had any shame left anyway). When I lied down, it rubbed on the bed and made it worse. When I tried to walk, it felt like I was walking on a nail. They started to treat it by having my foot rest in a donut shaped brace, so it wouldn’t touch the bed, but it was quite uncomfortable. Plus, because of my back, I couldn’t lie in the same position very long, and it was cumbersome. Eventually, they just covered it and told me it would go away in a month. It didn’t, but I’ll discuss that in later chapters.

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Over the next few days, I went from bad to worse. My depression was still deep, and I had little desire to get out of bed. The physical therapy was painful, but I was improving ever so slightly, and the occupational therapy was very difficult. She asked me to begin writing a journal, detailing what I’m doing and how I’m feeling each day. It was an arduous task. Not only could I not write legibly, due to the tremors, I seemed to have forgotten how to spell as well. Writing a sentence took almost 30 minutes. I must have crossed out half the words I wrote. It was frustrating and I hated it. What kept me going was the encouragement from the therapist, and the chance to show Renee my progress.

The psychiatrist, Dr. Gomez, came to see me on Monday and we had a long talk. She said that I would be meeting with one of her staff on a daily basis. She had a deep Spanish accent and I sometimes had a tough time understanding her. But, she was very caring and seemed quite capable. The first thing she did was to order me an aide. They had originally taken mine away because they felt I was using it as a crutch.

So they returned my aide. However, since I was considered suicidal (I still think they overreacted), the aide was to stay with me 24 hours a day. I’m not sure what good that would do, being that few, if any, of them spoke English. One thing that bothered me was that they would assign a new aide every two or three days. Even if I liked one, he/she would be assigned to someone else after a couple of days. There were two aides that stood out in my memory. One was a Mexican-American woman, who was very sweet. She was older (maybe in her fifties) and had children herself. I understood very little what she said, but she took very good care of me. She never got mad or annoyed with the menial tasks she had to do. She was exceptional. The other was a fellow from Ghana, by the name of Lovelace. Lovelace came to America, with his wife and daughter, about two years earlier. The spoke very eloquently and kept me company. We had a number of conversations about the Ivory Coast and the different cultures between the United States and West Africa.

For the most part, the other aides were not so pleasant. Truth is, it was a very difficult job, but it paid well and a few of them were studying medicine and wanted the experience. A few of them were downright incompetent. One lady started making phone calls at 1am from my room phone. She was so loud, she woke me up, which made me quite upset (considering how hard it was for me to sleep). But the worse was someone I will not name. She was twenty-something African-American girl from New York. She was loud, rude and obnoxious. What made it worse was that she was not a regular aide, but a nurse in the ward. She filled in as a substitute. She was supposed to stay with me all night, in case I needed anything (a drink, bathroom or just to talk), but most of the time, she stayed outside my room jabbering away with the other nurses. Whenever I called for her, she let me know that she was only there because they made her, and had no desire to do anything for me. One time, she berated me for asking her to close my door partially, so I could sleep without hearing her laughing with her gabbing friends. She got mad because, as she put it, “it ain’t my job to make sure you sleep.” After a few days of this, I started to complain. However, the next night, she was back. She started to be very condescending and let me know that she knew I complained. She refused to let me have anything to drink all evening, because I was on NPO. That was a lie. At about 2am, one of the nurses came in to just check on me and I happened to wake up. I asked why I was on NPO. She looked at me puzzlingly, and said I wasn’t. When I asked the aide, why she told me I was, she said, “payback’s a bitch, ain’t it?” I basically tried to ignore her and not ask anything of her (which I guess was what she wanted), and just went back to sleep. The next day, Renee got into the doctor’s face and told him that she if she must not be assigned to me again, and that she should be fired.

The other thing the psychiatrist did was to put me on Trazadone©.  I had taken Trazadone before I got sick, as a sedative, and had forgotten about it. Prior to my illness, I was prescribed 25-50mg at night, however, I usually only took about 12.5mg when needed. Her plan was to start me at 50mg and go from there. This made me feel better. After she left, I was visit by Erin McNulty, the team’s social worker. I really liked Erin, mostly because she smiled a lot and seemed to care about me and Renee. We talked for over an hour and discussed my plans for after I’m released. It was the first time I had even thought about that. I guess I just assumed it would be a very long time. When I asked Dr. Garcia the next day, he said that I might be home in a week or so. I was stunned. I wasn’t ready to go home! But, my heart raced just the same. I saw a light at the end of the tunnel. Renee wasn’t so optimistic. She didn’t say anything, but I could tell she was worried. My target date was going to be Friday, November 1st.

But again, my optimism was fleeting. Over the weekend, Renee noticed an odd noise in the bottom of my chest. It sounded like rushing water. When she mentioned it to several of the doctors, they brushed it off, saying it was nothing important. However, on Tuesday, I was fortunate to have my favorite nurse care for me. Renee happened to be in the room and asked the nurse to listen to my chest. The sound had gotten louder. I started to panic a little, so the nurse called Desiree, who was on call. Desiree came over soon after and also listened to my chest. She ordered an ultrasound, which was painful enough (since my chest was so sore). The ultrasound showed a leak in one of the arteries leading out of the heart. It wasn’t life threatening, but it needed to be repaired before it got that bad. After being under sedation after the bypass and the transplant. I had no desire for more anesthesia. However, they assured me I would not need to intubated again. The worst thing was that I felt this was a huge setback and became very sad again.

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The next night, I was visited by my sister and brother-in-law. Renee was there as well. Before they left, my friend, Geoff Dworkin, arrived also. He had visited a couple of times before, but this time, he brought his guitar. He had only been playing a short time, but was getting pretty good (although I did give him a hard time about it). Problem was that I really didn’t want to talk. I was tired, but still couldn’t sleep. He stayed anyway and played his guitar for a while. He told me he basically only knew Jewish songs, but after an hour or so, broke into “Come Sail Away” by Styx. For some reason, maybe the soft melody or the memories the song intoned, caused me to start crying. Talking to Geoff about this recently, he thought at the time that it was odd, after my family had left, that I was so emotional. I think it had more to do with the fact that my family was what I was crying about. Geoff didn’t say anything and played until I finally fell asleep. This was one of the most remarkable things anyone had ever done for me. I was, and am still, deeply moved by his actions. I will never, ever forget it.

On Thursday, October 31st, I went in for yet another operation. The doctors assured me that I wouldn’t feel anything, and would be put back in my room afterwards (as opposed to being back in the CICU). I remember, when I woke up, that my neck was extremely sore and stiff. I awoke in the recovery room and was very thirsty. However, it seemed that there weren’t any nurses or doctors around. I tried to call for one, but my throat was pretty sore. I figured it was from the tube, but I later realized it couldn’t be, since I had not been intubated. It turned out to be from the anesthesia. Furthermore, my aide was supposed to be by my side at all times, but I last saw him when they wheeled me into the OR.

About an hour or so later, the nurse called the cardiac ward and they brought me upstairs. Renee had been waiting for me, but all I could think about was how much my neck hurt. I asked for some Vicodin©, but the nurse said there wasn’t a prescription. I remembered I used to take it for pain. They had given me morphine after the transplant, but I needed something much, much stronger. The nurse brought me two Extra Strength Tylenol©. It was as strong as candy. My neck was killing me. No matter what I did, I made it worse. Lovelace put a very warm compress on my neck, which helped a little, but not enough. Finally, about 3-4 hours later, Dr. Garcia came in and prescribed Percocet©. I had taken it once before, but I didn’t like the way it made me feel. However, the hospital pharmacy didn’t carry Vicodin (which itself was strange), so I took it Percocet. Two, in fact. It took a little while, but it helped. In addition, Lovelace applied the warm compress every hour. After about three hours, my neck began to throb again. I wasn’t allowed any more Percocet for another three hours, but this time, Desiree allowed them to give me some morphine. While it helped, it was a very low dose. Renee was a bit surprised they would give me these drugs, being that I was so depressed. But they felt that I was safe and that the physical pain warranted the possibly deeper depression that might affect me.

I was visited by my friend, David Jarcaig, who I knew from Detroit. David had been close to my family for around six years and moved to Far Rockaway, with his wife, Tzipi and their two children. I told David I really didn’t want to talk. I was too depressed to have any conversation with anyone. And now I began feeling guilty that he came all this way to see me. What is remarkable about David, for all who know him, is that this mattered none at all. He simply said he was going to stay anyway. David is an incredible person and I probably respect him as much, if not more, as anyone I ever knew.

                                                                                           **********

Renee was unable to stay with me the following Friday night. The children were out of sorts and Mayer was suffering from asthma. Since my sister had a dog and a cat (as well as an iguana – who later died when left in it’s cage above the heater – way to go Hudi!), Renee did not want to send them to Long Beach. Because of this, she remained in Boro Park. I was still depressed, but I knew I’d see her Sunday. Plus, my Friend, Ethan Miner, was coming over Saturday evening. So, at least I knew I’d have company. Renee brought me some snacks and candy, something I’ve always been addicted to – and missed – but the menu was the same. I had told the nutritionist to never bring me the fillet of fish ever again. So, of course for dinner, I was given the filet of fish. Instead of eating it, the nutritionist had bought me some Meal Mart gefilte fish. That was a whole lot better than the fillet.

In the morning, I was told I had to sit up most of the day. This was agonizing. I still had a very stiff neck and a bad headache. I was dizzy and felt like I was in a fog. The last thing I wanted to do was sit in a hard chair for hours at a time. It was boring. I still little desire to watch TV and although I could now read a paragraph, I still found it difficult. But, I sat up and breakfast, and after I finished, I stayed in the chair. This lasted about 45 minutes. My back (remember, I had a lower-back fusion two years earlier) started to hurt as well. I asked the nurse to help me walk to the couch outside my room. I sat there with a Billboard magazine and a Newsweek, that my friend, Jeff Minsky, brought me earlier in the week. I tried to practice my reading, but it was hard. There was an article in Newsweek about a family with an autistic child. Having one myself, I found the article interesting and spent the next week reading it. It was hard work, but I got through it.

Ethan came over later in the day and we watched a football game. It was the first time I had any interest at all in watching what had been my favorite thing, football. It was odd, not caring about it. I watched some of the World Series, but for the most part, it was just background noise. A couple of weeks earlier, Emmitt Smith, of the Dallas Cowboys, the team I grew up with, broke the all-time record for yards running. It was a feat I had looked very forward to watching, but at the time it happened, I had no idea what a football was, much less what the record meant.

Ethan offered to come back with a beard trimmer the next day. My beard is usually kept very short. Since my hospitalization began, I had not washed my hair, nor shaved. That was seven weeks ago. When he arrived the next day, I became a little nervous. I thought it was too much to ask for and felt like I was imposing. But the truth was, I couldn’t do it myself. I only started to become aware of my beard and tried to trim it myself, a few days earlier. Ten seconds later, I realized I would need help. Ethan had purchased a trimmer and he, very delicately, began to cut. It was not an easy job. For one thing, when it gets to a certain length, it becomes very thick. He was trying very hard not to cause the trimmer to get caught and pull my hair out. He must have spent an hour getting my beard trimmed. I still needed a shave, but at least it was much shorter. Part of the problem I was now experiencing was that one of my anti-immune drugs, Gengraf©, caused both the tremors and seriously increased hair growth (even on the top of my head – which can only help in my case).

Again, Ethan’s actions, like Geoff’s, were beyond remarkable. Both of them, as well as those others who visited me regularly, Jeff (Minsky), David Jarcaig, ,Ben Meltzer (from D.C.), Neil Kleid (who brought me comic books) and Gregg Goldenberg. Two of my cousins, Joel Steinmetz and Moishe Zimberg, as well as Yair Griver, who made the trip from Seattle, and Rebecca Yudenfreund (from California), made a special trip to see me as well. Renee, of course was there all the time. Also, my sister, Debbie my father-in-law visited me a few times and they, along with my brother, Mike, began calling me on a daily basis to offer support. All of their visits and calls meant the world to me. It kept me from feeling all alone.

When Rebecca called, it was only the second time I had spoken to her in close to 20 years. She was a teenager in the youth group I sometimes advised (NCSY) in Dallas. She was, back then, a friend of both Renee and I, long before there was a “Renee and I”. She called to tell me she had heard what happened to me and was going to be in New York in a couple of days. She came up on Tuesday, November 5th and brought me a roast beef sandwich. It took a while for Renee to believe me when I told her the doctor put no restriction on my diet. I guess he figured that it was more important for me to eat, then it was to worry about my cholesterol. We visited for a couple of hours. It was so great to see her. When I saw her last, she was only 14 or 15. She looked fabulous and seemed very happy with being a music festival organizer. It was so cool seeing her again. We had hoped Renee could have been there as well, but unfortunately, she had to take care of one of the kids, who got sick.

The next day, something very odd happened. It started out as any other day, except I had to go in for a biopsy. I had dreaded doing this since they first told me about it. Although they assured me it was painless, I paid no heed. I fretted over this for days and was very unhappy when I saw the NPO notice on my door the night before. Dr. Gomez increased my Trazadone to 100mg, so I slept a little better, but I was thirsty and scared. They were supposed to bring me downstairs at 9:00am, but by 10:30, I was still in my room. As the clock ticked away, I felt like a man condemned to the electric chair, facing his last moments. Between my anxiety, my fear of the unknown and my lack of rational thought, I was a total wreck.

I was finally brought downstairs to the cath lab at around 1:15pm. Apparently, they had a slew of emergencies that took precedence. When I got down there, I was introduced to a male nurse/catheterization coordinator by the name of Ed. Ed looked like he was Dennis Miller’s twin (and probably still does). He was a very nice guy who made me feel quite a bit better, until he made one last comment. He asked me when I started to run a fever.

I had been keeping tabs on my temperature and blood pressure every day. I knew that if there was a change in either, it could signify something bad, like a rejection. So, I was completely in the dark about any fever. Did he know something I didn’t? When I told him I wasn’t aware of any fever, he said that Dr. Moskowitz listed the reason for the biopsy as vital, due to fever. I later found out that Dr. Moskowitz had ordered it this way as a ruse. Apparently, they wanted the biopsy done before the weekend because they set my target discharge date to November 14th, and wanted to make sure I was able to have another biopsy prior to my going home. So they lied to get me in sooner.. However, at the time, I freaked out and started to cry again. By the time I composed myself, it was time to go in. I was wheeled in and placed on a long narrow table. They put a small pillow underneath my head and armrests next to me. Two weeks before, I had a similar procedure, but I pretty much slept through it and didn’t remember much about it. During that procedure, Dr. Greenberg, the cath specialist, had discovered that the passageway between my ventricles was blocked. While this was an annoyance, it was not dangerous. However, it meant that instead of going through my artery in neck, they had to access the artery in my groin. As many of you know, this is not the most comfortable place to have an injection.

They covered me up, although being in the hospital for almost nine weeks takes away any modesty you may have left, and left a small area exposed (and I do mean exposed). The doctor gave me a few injections of Lidocaine©, to numb up the area. For those of you who have never had a Lidocaine injection, let me tell you, it doesn’t feel very good. Once the area was sufficiently numb, they sent Versed© through my IV. That helped, not only to ease the pain, but to alleviate my anxiety. The procedure took about 45 minutes and really wasn’t painful. Plus, I was able to sleep. That helped a lot. My neck was starting to feel better and I was somewhat comfortable from the Versed.

The odd thing that happened, which would affect me for months afterwards, was that I started to notice my taste buds had changed. The night before, Rebecca had brought me a roast beef sandwich, which was delicious. The only problem with it was she forgot the ketchup. I am a big ketchup eater, but I hardly noticed this was missing. The next night, Geoff also brought me a roast beef sandwich (it’s amazing what a simple pleasure a favorite food does for you when it’s been denied so long). This time, it had ketchup. It was awful. The meat was okay, but the ketchup bothered me a lot. I wasn’t sure if this was from this particular sandwich, or from the lack of taste the hospital food had. Over the next few days, I discovered that many of the foods, including candy, no longer had any appeal to me. That was quite annoying and it took months for it to improve.

On Thursday, the world changed yet again.

                                                                                           **********

Thursday started out the same as any other day. This time I was able to walk the length of the corridor and back without assistance. I was proud of myself, but very tired. Later that morning, Desiree took the staples out of my chest. I didn’t feel it, since my chest was still quite numb, but it meant I’d be allowed to take a shower for the first time in two months. I started to try and dial the telephone. Since I woke up from the coma, I had not been able to do it. I know it sound silly, but I got very confused with the numbers. Our number, where we were staying, started with “633”. I could get the “6” with no problem, but by the time I figured out where the “3” was, I had lost the connection. It was so extremely frustrating. It cut me off from the outside world and it made me have to ask the nurse to dial the phone for me, or rely on incoming calls only. As hard as I tried, I just couldn’t do it. Later that day, the neurophysiologist gave me a written exam. The questions were very simple…until I got to the math. When I was at my best, I could multiply 3 and 4 digit numbers in my head. The test was basic addition, subtraction, multiplication and division. I was given an hour to answer 30 problems. Before my illness, I could have done it in less than 10 minutes, but this time, my time ran out after answering 12. Of those, I may have gotten half right.

When I finished my “math test”, my occupational therapist came in. I told her I was simply too tired to do anymore and she allowed me to miss the session. Right afterwards, my mother called.

My mother was widowed in 1998. My father was her life – more than her children – and took care of every need for her. She loved us, but she was not a “hands on” parent. In my childhood, that role was filled by father and sister. In recent years, her health and her mental state had begun to decline. My brothers, sister and wife determined that it would be best if she were kept out of the loop, in regard to me. Their feeling was that although she certainly cared about me, she would channel her concern towards herself. That would lead to phone calls I neither needed, nor wanted. However, today, she called. It was odd hearing her voice. She was clearly affected by my situation, and seemed cognizant of the depths of what happened to me. She offered no encouragement, nor any real sympathy (which I really didn’t expect anyway). In fact, she spent the better part of the conversation trying to figure out what I had done to deserve such punishment. Because I was so aware of her personality disorder, it didn’t bother me too much. Still, it stung a little and caused me to wonder the same.

After I hung up, I had the nurse dial Renee. I told her about the conversation. She was very sympathetic and told me she was coming to the hospital that evening and bringing a big surprise. Because of our previous conversations, I realized that meant she was bringing the twins.

I had seen Rachel and Mayer before this. When I was in the CICU, following the transplant, and later, each one came alone with Renee at one time or another. When Rachel came with Renee, she was very withdrawn and looked very uncomfortable. She wouldn’t let her mother out of her sight. Renee went downstairs to get me a soda, and Rachel refused to stay with me. Either she was really freaked out by the wires and sounds, or she was suffering from terrible anxiety. I discovered later that both were the case.

Mayer, on the other hand, acted quite differently. As I stated previously, Mayer suffers from Asperger’s Syndrome. His behavior went from very good, right after the heart attack, to very bad a few weeks later. Then, apparently after I spoke to him for the first time in weeks, his behavior improved. This was not the same boy I saw in August. He was more alert and mature. I was very impressed. Renee left us alone for a little while, and he engaged me in a nice conversation. Normal conversations with Mayer were somewhat rare, so I was really enjoying our visit.

The twins, however, were a different story. Elisha, the oldest (by a minute) was the aggressive and curious one. He never saw a light switch that he didn’t have to turn on. I remember back when he was just starting to walk, he would climb up on a chair and for as long as we let him, he would flip the light switch off and on, over and over again. He loved the cause and effect. He also had developed a language disorder. We had him tested and discovered his performance, or non-verbal, IQ was much higher than his verbal IQ.

Mendy, the littlest, both is height and weight, was more fortunate. Although more sickly than his twin at birth (both born 8 weeks early), his development had been more typical. Both boys have wonderful qualities and are very loving. However, due to their age (three), they weren’t allowed to come up to the ward. For the most part, this didn’t bother me. I was afraid of how they would react towards me. I wondered if they would remember me and whether my close relationship would ever be the same. The idea that it wouldn’t depressed me even more. I was angry about the lack of fairness. Renee and I waited five years, through years of fertility treatments, before she was able to conceive again. Now that I was doubly blessed, I wouldn’t have the same relationship I had with them before. This time it was different. Instead of spiraling me farther into depression, I got angry. That was a very good sign and it emboldened me.

I was sitting at my little roll-away table when the family came in. First, Mayer came in and smiled and gave me a big hug, followed by Rachel, who needed encouragement to do the same. Mendy came in first and then Elisha. At first, they looked very cautious and scared. But Mendy had a little nervous smile and when I asked to come over to me, he did so vehemently. I didn’t want to let go. Then Elisha did the same. Elisha was the one I used to hold at night when they were babies. Because of my back trouble, Renee took Mendy, who was heavier. Now, the roles were switched. Elisha developed into that big one. He was a little pudgy and sort of molds into you when you hold him. I didn’t want to let go of him either. It dawned on me, right there, that they cared not about the scars, the wires or the beeping noises coming from my room. All they knew and cared about was that their daddy was coming home.

For the first time in nine weeks, I cried from joy.

That afternoon, I went down for another biopsy. They had told me that I would have to have them every week, for six weeks, then every other week for six weeks, then once a month for three months more. After that, once every six months for a year and a half, until finally, once a year, for the rest of my life.

It was overwhelming, as were my medicines. Sherman had brought me a 7-day pill dispenser with four compartments per day. He advised me that I should fill it once a week, and not try to remember it all each day. I was certain I would screw this up. My short-term memory was shot. I had a hole in my vision and felt like I was living in a fog. One of the reasons it had taken me this long to write this story, was that I wasn’t clear headed about all of this before. Even now, I struggle with many issues related to my stroke,. But these are things I will discuss in later chapters.

The biopsy was a little more uncomfortable this time. Dr. Greenberg had to maneuver the catheter through some dead tissue and needed to inject more Lidocaine into my groin. After a couple of minutes, I begged him for more Versed. That helped. As was last time (although I didn’t mention it before), because they had to go through my groin, I had to lie down afterwards, with my head raised at a short angle, for four hours, to insure that there was no bleeding. In addition, they placed a sandbag over the area. I was instructed to stay in that position for the entire four hours. The week before, it didn’t bother me so much. This time, I was more aware of my surroundings and more active. It was very difficult. The absolute worst part was that I was starving (I had been placed on NPO again), but I could barely eat, due to my position. Plus, I needed to go to the bathroom, badly.

Renee stayed with me and it helped pass the time. We watched a little TV together, although I had lost all interest in sitcoms. And we talked. We talked about our future, our hopes and our worries. It was a good conversation. She left around seven. She had arranged for all the kids to go to the Griper’s house. The twins were dropped off by bus, but Rachel and Mayer were sent by car service. The car fare and tolls were eating up our money. It wasn’t the only thing.

About a week and a half earlier, Renee had parked on the street, near an elementary school. She made sure that she was parked legally, and came to see me. When she came back out, the car was gone. She rushed back to the hospital and called me. I had no idea what to do, but I suggested she call the police. I know she probably thought of this as well, but it was all I could come up with, in my state of mind. She called the police and was told that the car had been impounded. Apparently, her back tires “touched” the crosswalk. She pleaded with them and told them what was happening. As you know, if you’ve ever been to New York, it mattered very little. Personally, I think they marked her because she had Texas plates. Otherwise, they could have just as easily given her a ticket.

Once the car was impounded, it collected the original fine of $125, plus a towing charge of $50 (or vice-versa). In addition, they charged $15 a day for storage. The pound was in Mott Haven, one of the most dangerous neighborhoods in the Bronx. There was no way she could go there alone. She called Mike and he told her not to worry, we had the other car. He advised her to call a taxi and go home. We would worry about it tomorrow.

Because a cab to Brooklyn, from the Bronx, costs about $70, Renee decided to go by train. When she told me this afterwards, I was furious. A young woman, alone, in the evening, with all that was going on in her head, should not be taking a subway in the Bronx. I was so glad she didn’t tell me before she did it. Thank G-d, she made it home safely.

I woke up Thursday morning with a lot of anxiety. I wanted this to be the last day so badly, I couldn’t stand it. We had hoped for the last couple of weeks, that there was a chance I could be moved to a residential rehabilitation facility. But due to costs and the fact that few, if any, could accommodate a transplant recipient. The thing was, mine was a very atypical recovery. Having the stroke made life far more difficult than it usually is for other recipients. Normally, you leave the hospital within two weeks and begin regular rehab. I was so far behind, that my post care had to be modified. Instead of a treatment facility, I would be on my own, which made no sense. What are these facilities for? If someone who was not behind in their recovery could benefit from them, wouldn’t I even more so?

The physical therapist took me back to the stairs. She had promised me I would be able to do 30 steps up and back down again. I had done about half, but was not optimistic. I made the first landing (6 steps) with no problem. I made the nest two landings with minimal concern. I then decided to go for it, and went up two more landings. I made it! 30 steps up! I was sore, but I now knew I could do it. The steps down were not as painful, but not so easy, either. I took a lo-o-ng break before heading back to my room, and gave my therapist a huge hug. I was thrilled!

About an hour later, things started unraveling. Renee had promised me that if the doctor said it was okay for me to go, she would not object. She didn’t want me to go home just yet, but she knew how much it meant to me. One of the things I love most about her is that she always puts my feelings and concerns ahead of mine. I try not to take that too much for granted, but I often fail. She told me Rabbi Miller, Monza’s husband, and Surkey Rabinowitz (see part 3 for both), were coming to the hospital to try to talk me out of going home. They felt I’d be better off waiting until Monday, when the apartment was finished.

I wanted no part of it. When they arrived, they told me what they came to say, and I told them how I felt. What amazed both Renee and I, was the clarity for what I spoke. I was concise, made my points logically and clear, and stood my ground. Desiree backed me up, as she felt there was nothing to be gained by my staying. I reminded Renee that she promised me she wouldn’t interfere, but she began to break down. Rabbi Miller and Surkey had been very instrumental in her life. They were a big part of her support system. She was having a very hard time with this, because she knew that staying would be best.

But I was adamant.

Surkey had a solution. A few days earlier, Renee had mentioned that there was a Kosher respite home for people recovering from assorted injuries, in Sea Gate, at the tip of Brooklyn. She had raised some money for it, since it cost upwards to $100 a night. I didn’t particularly care for this option at the time, but it was a possibility. I could spend the weekend there, Renee could be with me for Shabbos and I wouldn’t be in Renee’s way while she was getting the apartment ready. I still wasn’t happy about this arrangement, but after spending almost 3 hours discussing it, I agreed to strongly consider it. 

When that was all said and done, Erin and Desiree took care of the paperwork for my discharge. Sherman came in to help both Renee and I, in figuring my medicine schedule. He left me some pictures of each pill (and there were quite a few of them, along with dosages and times. I started to pack up my things (clothes, pictures, balloons and stuff) and Renee went downstairs to get the car.

As I was wheeled out of my room, I looked back and felt sad. I had thought I would never see the outside world again. I had been to Hell and back. Now, I had my life to live. I could have been emotional about it, but I wasn’t.

I was going home.

Go to Chapter 6