shaynezucker.com
October 17, 2009 -- Today is a very special day for me. On this day, 7 years ago, I received the greatest birthday gift I could have ever hoped to have - a new heart. I was told, when I awoke from my 4-week coma, that the odds were against getting a transplant for at least a year - to a year and a half (if I was fortunate enough to get one at all).
According to UNOS (United Network for Organ Sharing), as of today, there are 104,492 people waiting for new organs. That could mean hearts, lungs, kidneys and livers. Without these, all would die rather quickly. We are fortunate to live at a time where these operations are not only possible, but are hugely successful. Think about this, had my heart attack happened just 10 years earlier, the odds of my surviving 5 more years - at best - 50/50. 20 years earlier, and I would be looking at a maximum of 3-5 extra years of life (if the operation was successful - at a time when only 33% were).
Had this happened when my father was 40 (1964), I would not be here to write about it.
What many people do not understand is the loneliness associated with being "on the list." I can tell you from first hand experience that you should count on losing at least 50% of your friends. In addition, if you aren't married, forget about a social life. You may look healthy as a horse, but nobody is going to want to date someone who has a known expiration date. Your family, while trying to be supportive, really can not relate to what you're going through.
The very idea that the organ you were born with is killing you is a horrible feeling. But the idea that it is correctable through a transplant from someone else is equally troubling. When I woke up after the transplant, the guilt that I felt for having someone else's life was overwhelming. Yeah, I knew that he was now dead and I also understand that he didn't die just so I could live.
Still, he had to die. And you know what? I knew him. No, not in the physical sense. Unfortunately, his family (assuming he had one) decided against answering my letters, so therefore, I know very little about him. All I had been told was that he was 22 years old and was from the Midwest.
But I knew him. Ask any transplant recipient and they will tell you the same thing. I know that he died in a motorcycle accident and I know he was either a musician, or an artist (although, it's possible that he wasn't practicing his craft). I can't see his face, but I saw his accident. I don't know how, or when. But in my mind and heart, I saw what he saw the moment he crashed.
I can also tell you that before the impact, he was happy.
I will never have the chance to thank him for my present and that also saddens me. I don't know what his name was and I don't know where he's buried. But I knew him. He has caused my dreams to change. He has caused my desires to shift. He has given me my desire to write and create. He has made me a better father and a better man than I could have ever hoped to be.
I knew him. And I will never forget him.
It's an amazing thing, this transplant stuff. If you've ever watched the procedure (there are videos online), you can see how difficult, yet how simple the surgery is. The idea that you can take the heart from one person, put it on ice for 4 hours and then install it into another person is nothing more than magical.
While I was recovering, right after the surgery, I remember thinking about the story of Frankenstein. Was I now a monster? Was I deformed? Exactly who was I?
I recall the first little changes I experienced. The first one was I no longer liked ketchup. Of course, the doctor told me it was due to my eating only bland foods for a couple of months. But I also was uninterested in a lot of different foods I once craved. Every time I noticed something different, I recorded it on paper. It was hard at first to differentiate what the transplant caused and what was a result of all the medications.
I guess the biggest thing I noticed was my desire to write. It had never been there before - and when I say never, I mean it. In 1986, while working for the State of Israel Bonds, my boss directed me to write a weekly column for the local Jewish paper. The purpose, of course, was to advertise what we were offering in a way that made it look like a news story (often, it was about an upcoming honoree, or some big-wig who was on our director's list).
But I hated the assignment and tried valiantly to get out of it. I even purposely wrote horribly so he would realize I wasn't the one to do it. But he just took what I wrote, edited the heck out of it, yelled at me for not making his life easier and sent it in under his name (if it were going in under my name, I may have taken more interest). Still, I hated doing it.
But one Saturday, about 18 months out from my transplant, I was laying down in my room and it hit me - I want to start a blog. Of course, at the time, I had no idea how to do that. So I called my friend Jeff ("Hey, Jeff") and he directed me to Blogger.com. And away I went.
I remember, after about a week or two, my wife (at the time) commented that I was just going through a phase and I would probably grow tired of it. But I knew better (I thought). This was different. This was real. I then figured out the best way to heal was to write my transplant story. Who cares if no one read it. I needed to write it. And so I did. And it was the hardest thing I had ever done. But it allowed me to realize who I was and what I had become. I had hated myself - first, for getting sick - and then for making horrible choices that took the joy out of life.
So right there and then, I promised not myself, but the man who gave me my life back, that I would make the best of my second chance and make him proud of the gift he gave me. I'd like to believe that through my writing and through my personality, I have been accomplishing that.
It certainly hasn't been easy, that's for sure. As a matter of fact, it has been immensely difficult.
In the four years since I last wrote this story, so much has changed. So much has progressed. I’m not going to go into details about why my marriage ended, only to say that sometimes two people who should know each other, really haven’t the faintest idea. Of course, there are so many “he said, she said” moments in the end. But the final outcome was simply two people who went in opposite directions. In truth, this happened years before I got sick and perhaps, had my illness never happened, I would never have had the courage to make the changes I felt necessary.
But as I healed, I discovered parts of me that had lay dormant for many years, and now needed to come back out. I was fortunate enough to reconnect with my past in ways I’d never have expected and I met someone special. But even though I wished it would have ended well, the experience – and yes, even the heartache – again taught me more about who I was.
Still, I did not give up. I knew what was missing from my life, as well as what was missing in my marriage, and although I am still searching for “the one,” I know she is out there.
It has been 7 years. I would never have figured I’d even make it this far. As first, I felt like a ticking bomb. Of course, for a whole, I was. Six months after the transplant, I had my first organ rejection. It wasn’t too bad, but it kept me hospitalized for a while. A few months after that, I had another, more serious, one. This time, I was living in Chicago and was fortunate enough to choose the right hospital. Already, I saw that my decisions were more informed and working out better.
Dr. Anderson, at the University of Chicago, decided – on a hunch – to give me one extra blood test. As it was, he ended up saving my life. But it did come with a price. Because of the humeral rejection, I suffered serious kidney damage and would need to be under the care of a nephrologist. Over the next few years this condition worsened and eventually, I was diagnosed with “end-stage renal failure”, as my kidney function hovered around 10-15%. But for some reason, I refused to believe anything was wrong. While Dr. Reddi urged me to contact the transplant nurses, to meet with them, I kept putting it off. She listed me on the UNOS directory for a kidney transplant, but I just wouldn’t accept it. Even when I was suffering from chronic anemia – and taking weekly injections to increase my red blood cells – I still couldn’t give it any sense of urgency.
But the numbers weren’t lying. But then something changed.
After breaking up with the person I mentioned before, I decided it was time to try my luck at online dating. Boy was THAT an experience! I could tell you stories that you would not believe. After a few attempts at meeting someone, I finally connected with a woman from Cleveland who I really liked. She was pretty, my age and when we spoke on the phone, it seemed perfect. That first night, we spent about 5 hours talking, laughing and having a great time.
The next morning, she called me and we discussed the idea of meeting. Since she was in Cleveland and I was in Chicago, I thought meeting in Toledo would be a good idea. She agreed and we decided to meet the following week. We stayed on the phone for another hour, before she had to go to work.
Four hours later, it was over. I don’t know how/what/where or why, but at 2 that afternoon, I received a “dear John” email telling me that while I was a great guy and a perfect catch, she was no longer interested. At first, I thought it was because of my health. But she knew about my transplant and she had no way of knowing about my kidneys. I actually thought it was a joke at first. But it wasn’t.
The problem wasn’t her, though. It was just the latest rejection I had received out of too many. While my ex-girlfriend, a woman I clearly wasn’t yet over, was frolicking around on Facebook with her new beau, I was getting turned down left and right. I couldn’t understand the unfairness of it all. After all, I was a good guy and I was certainly a caring and doting boyfriend.
Still, I was going nowhere romantically. So I decided I had enough with online dating and I began to close my accounts. But then I noticed than one person who had contacted me first, did not respond to my response. Being somewhat angry, frustrated and curious, I wrote her again and asked her why she ignored my return email.
Well, apparently she didn’t. She never received it. I then looked in my send folder, and sure enough it wasn’t there. A week later, she and I started dating.
She was incredibly sweet, caring woman and a yoga instructor. She was recently divorced and has two children – one on whom was not very happy with the idea of her mom dating again. But most of all, she was an incredible influence in my healing. She taught me about yoga, about breathing and about healthy living. In so many ways, she was perfect for me. But I couldn’t love her because I wasn’t over my ex-girlfriend (I hate when that happens). But I tried, I really did. We lasted four months before I finally had to let her go. It wasn’t fair for me to keep her holding on when I knew in my heart I didn’t love her. To this day I still don’t understand why not (my reasons make no sense to me). She was dear, sweet, attractive, tall, thin and so good to me and for me.
I guess the truth is I don’t know if I’ll ever understand why. I just knew she wasn’t “the one.”
In the mean time, something else happened that came out of this relationship. While it may be coincidental (I doubt it), when I started the yoga and breathing exercises I also began to challenge my mind into believing I would get better. I refused to get sick and every time I felt like I was feeling under the weather, I talked myself out of it. And believe it or not, it worked!
From that point on, every blood test I took showed a marked improvement in my kidney function. Aside from just feeling better, the numbers were showing it. At first, it looked like just a slight uptick. But it has now 11 months since I started and every blood test (8 in all in that time) have shown an increase in kidney function.
Now understand, there are 5 levels of kidney function and they are listed in stages. Stage one is a healthy kidney, which is a kidney with (for layman’s purposes) that is at 90% functioning, or better.
Stage 2 is defined as a mild reduction, with the function at 60-89%.
Stage 3 is defined as a moderate reduction with the function at 30-59%.
Stage 4 is defined as a severe reduction with the function at 15-29%.
Stage 5 is defined as established kidney failure, with a function under 15%.
Before I met this woman, I was just under 15% and dropping. I was listed for transplant and was informed that dialysis was a foregone conclusion within a year. Since then, I have steadily improved to where I am not at Stage 3 and hopefully improving more. My kidney function, according to my latest results, is now 38%.
One of my doctors called it “miraculous.” I agree. I have never felt better. Yeah, my back still kills and now that winter is approaching, my arthritis is starting to act up. But yet I have never felt better. I haven’t had a cold in almost four years and I refuse to start now. I know that the key to my happiness is to stay away from the way I once lived and whenever that urge to just go to bed and hide from the world hits, to stay far, far away from it. Except during the few times my back was out, I haven’t missed a day of work and even when my back was hurting, it took an awful lot to make me stay home. And I like being home. Home is where my computer is.
As most of you know, I work as a kosher food supervisor. In Hebrew, the term is mashgiach. It isn’t my dream job, but reality has long set in for my employment dreams. I can now look back and be pleased with the fact that I once had my dream job. Even though I loved that career (youth director), my life is no longer conducive for the lifestyle of a youth director – at least not the kind I was and would ever want to be again.
I have thought about the idea of going back to it. But I’m now 47 years old. Perhaps I could relate to kids when I was 35, but not 47. I have a tough enough time with my own children. When I wrote the previous chapters, I was teaching computer science in a couple of day schools. But my patience wore very thin, and I decided I had enough. So I found a job working as a mashgiach at a large supermarket in town. It was an okay job. I loved the people I worked with. But the money wasn’t all that great and I was having a tough time with standing on my feet for 6 hours at a time.
Regardless, I did the job well and even received a strong commendation from my supervisor. However, a few weeks later, I got fired. It really wasn’t my fault, though. I had been driving my daughter to school (summer school) and was able to make it to work on time each day, except Fridays. On Fridays, my supervisor wanted me to come in at 7 am. However, since I still had to take my daughter school, I got permission from him to leave at 7:30 to take her and get back to work by 8.
This worked out well for the 8 weeks I had to do it. But a couple of weeks after summer school ended, I was called into the main office and “talked to” by loss prevention. They claimed I was “stealing” time by taking off for 30 minutes every Friday. I let them know that for one thing, because I was a part-time worker, I could not clock in more than once a day (it’s the way the system was set up) and in addition, on the days I did that, I did not take a break during the shift.
Furthermore, I informed them that I had permission from my supervisor and if it were an issue, he would have reprimanded me, or even had me fired. But he was aware of it. In addition, I had asked him about three weeks into it, if it would just be better if I came in at 8. He said no and that he was cool with me taking off to take her to school.
Still, I was told that until an investigation was performed, I was suspended. Four days later, they called and told me that my supervisor did not corroborate what I said and that I was fired.
I immediately went to the store and asked my (former) supervisor what he said, and he told me that when they asked him if I had permission he said “no.” I then asked him why he would lie and he shrugged and said he had to “take care of his family and couldn’t afford to get fired.”
I actually felt bad for him. He was so insecure about his supervisory position that he would see someone out like that. Unfortunately, it happened during the worst week of my life. During that week, that woman dumped me; I got into a huge fight with my brother (something that is between him and me and has long been resolved) and now this.
I was devastated. But I didn’t stay down for long. For one thing, I hated the idea of standing up all day. Yeah, I was embarrassed, but because I felt wholly innocent I didn’t lower my head in shame. In fact, I let everyone there know about it. If my former supervisor was embarrassed, well that’s his problem. I refused to be. I know I have a lot in my past to be ashamed of. But getting fired from Jewel was not one of them.
Besides, a few weeks later, I got a call from the owner of a Kosher-dairy restaurant in Skokie who was looking for a mashgiach. The hours are better, I can sit if I need to and I make more money here. All in all, I ended up ahead. How great is that?
So for now, life is awesome. I met someone since who is very special to me. I promised her I wouldn't say more about her, or us, so I'll leave it at that. It’s early, but possibilities abound. More importantly, I am healthier and happier than at any time in my life. My body may be 47, but my heart is 29. I feel like a kid all over again and I am loving it.
I don’t know what the next 7 years will bring, but for the first time in my life, I no longer am afraid of it. There are some who fear that a transplanted heart means “borrowed time.” I look at it differently. I think it was a gift and not something borrowed and therefore, it doesn’t have a return date.
I can’t say everything from here on out will be smooth sailing, but I know that unlike before, I actually have an opportunity to live unencumbered by the mistakes of the past. My kidneys are clearly better, but I'm not so arrogant to think I'll never have any other issues down the line. But I'm no longer expecting that perverbial "other shoe" to drop. How many of have said, “if I could just do it all over again”?
Well, I’m living proof that you can.