For me it was easy. As I stated in yesterday’s post, I have heart failure and from Christmas eve to the day after Christmas I added about eleven pounds to my already bulging girth. Between eating the wrong foods, being too active for my heart, and drinking way too many fluids I managed to blow up like the Michelin man.
For a patient with cardiomyopathy, which is a fancy way of saying lots of dead heart muscle, doing what I did is like my own little private game of Russian roulette. I’ve gotten away with it so much that I no longer show my heart the respect it not only deserves, but needs. And I just keep on playing with no regard for my life.
But when I can lose 10 pounds in a day I just don’t take it seriously. That’s right 10 pounds and actually it only took about 18 hours. There was lots of peeing involved and heavy supplementing with potassium. Half of one very small pill and the flood gates opened. The weight comes from fluid retention that happens when I don’t take care of myself the way I’ve been told to by the doctors.
It’s funny, if I follow their directions none of this stuff ever happens. There’s no need to rapidly drain my body and to guess at how much potassium to take so I don’t suffer that deadly ventricular tachycardia. Potassium is the same fun substance used in lethal injections on death row. It’s levels in your body aren’t a healthy thing to mess with.
Unfortunately I have an addictive personality. I used to deal with my fears and everything by drinking alcohol, but I had to stop that because it was killing me much quicker than I wanted to die and it was a mandatory change if I ever wanted a chance to be re listed on the heart transplant list when I start getting sicker again.
That’s right, 11 years ago I was listed for a heart transplant. The heart disease I was born with wreaked havoc on my adult heart after I turned 36. The scar tissue from open heart surgery in 1966 and again in 1974, when they tried to do it right, began causing a lot of short circuits and arrhythmias that began killing my heart muscle.
So when I was 38 years old I went to the Brigham & Woman’s hospital to go through 5 days of intensive tests to see if I was healthy enough and sick enough to be listed for a heart transplant. I passed and was put on the list. They made us have a big family meeting at the hospital and went through all the things my family and I needed to know and be aware of in order for the transplant to be succesful.
A funny thing happened on the way to the transplant. At that time I was told that within 2 years I would need a new heart, but I never got sick enough. I was excited to get a new heart and have the quality of my life improve. I also enjoyed the spotlight of being the guy that’s going to get a new heart.
I think it made me feel important and special. Those feelings stemmed from my childhood. Back when I was young and battling my heart defects things would sometimes be scary. At the age of 12 my parents and my new cardiologist at Mass. General Hospital, Dr. Friedlickson, I hope I got his name right, he was a wonderful doctor, told me they felt I needed to have open heart surgery again to fix up problems that still existed and mistakes that were made during the first surgery in 1966.
This was back when open heart surgery was more cutting edge. I was actually in the local newspaper and other spotlights where shined on me back then. When they told me I needed the surgery they said it was completely up to me if and when the surgery would be done. They explained that because there were still leaks and other problems in my heart that if I decided not to do the surgery I would be quite limited when I became an adult.
So there I was at 12 years old trying to decide if I wanted this scary surgery. While I was growing up I would sometimes be scared. During difficult times my mom was always there and she gave me comfort by letting me know how special I was. How not many children got to go through what I was going through and how brave and strong I was. She made me feel special. When we were at the beach and I was running around with my shirt off I never thought about the big scar running down my chest. She managed to get me to not be conscious of my scars. She would often call me over with a new friend, who I just met, and tell me to explain about my scar and the surgery or surgeries I’d had.
That specialness that helped me cope as a child may have been a contributing factor to my self destruction as an adult while waiting for my heart transplant. After being told that I would have a new heart within 2 years I began getting antsy. Unlike most normal people who are listed on the transplant list I got discouraged when I didn’t get sick enough to do it. Most people would be thrilled that they aren’t getting as sick as they were supposed to as soon as they are supposed to.
I didn’t think that way. I thought how was I going to be special without having a transplant. I also thought how long will I stay sick enough that I can’t do most of the things I like while not getting sick enough to get fixed. It all seemed unfair to me.
So when I got 3 years past when I was told I would get a transplant I started being bad. I don’t know if it was fear, impatience, laziness, or just allowing myself to get stressed out over the whole thing, but I fell apart. First I stopped eating right, then I started drinking as many fluids as I wanted, which was way more than I should have, and finally I went back to drinking beer. Something I hadn’t done in over 8 years.
My behavior led me to start getting sicker. I started retaining fluids, I was exhausted and stopped being active, I put on lots of weight that wasn’t fluid based, I was just basically falling apart. Amazingly my heart didn’t deteriorate through this all. After 3 years of dangerously tempting fate something clicked and I needed to change.
The first thing I did was tell my doctors what I had been doing. It was funny that I felt the need to tell them what they already knew was happening, but it was important for me to get honest to make any real changes. Then I received a letter from the Brigham & Woman’s hospital telling me that I was taken off the heart transplant list. That hurt. I had been listed 6 years and accruing time for when I got sick and now if I am ever able to get back in their good graces I will have to start over from the beginning.
Since last spring I have put together some good work and am heading in the right direction. It has taken considerable work because during this time I developed very painful neuropathy in my feet that limits me physically. My right hip developed avasculear necrosis and needed to be replaced. We looked all over Maine to find a surgeon that would do the surgery and we couldn’t find one. They all said my heart wouldn’t make it through the surgery. I said my heart won’t make it through all the pain in my hip.
Several years of looking led us right back to the Brigham & Woman’s. The transplant team found a surgeon there that was willing to try if I was. This was an important component to my recovery as between the painful foot neuropathy and a hip that was literally crumbling from the inside I wasn’t able to do much physically. So even though I was doing well with my program the lack of exercise hurt my program and I continued putting on weight.
The weight was a sticking point for the heart team in Boston. They looked at it as further proof that I was still unwilling to do the work to be a good candidate for a transplant. I kept saying I was hurting and couldn’t do the exercises. They’d say eat less and to that all I could say was I know.
The hip replacement was done June 28th, 2011. I made it through like a champ further amazing the heart doctors with what my diseased broken heart can take and do. I worked hard recovering. Rehab, walking in pools, movement restrictions for a year, starting with a walker, then crutches, then a cane, and then good to go, be careful.
By the end of July that year I was out playing disc golf with my cane. It was slow going. Throw a disc, hobble over to it, find a stump to sit and rest on and then take another shot. I played the 9 hole par 3 course and it would take me more than 2 hours to play those 9 holes.
A year later I have used disc golf and an exercise bike to stay active. I have gone from 271 pounds down to 245. It has been over 3 and a half years since I drank alcohol, and I need to lose another 20 pounds so when my heart does deteriorate I can be put back on the transplant list again. The doctor’s in Boston are once again pleased with me and pulling for me. They are so much easier to get along with when you show them you aren’t going to waste their time, experience and one of their precious hearts.
I now know the transplant is a last step and I should be in no hurry for it to take place. They are reminding me once again that my heart is the best heart I could have even if it doesn’t work real well. During my last appointment she commented that we are lucky we didn’t transplant my heart way back when they thought I would need it. Her point was the average life span of a transplanted heart is about 10 years and this year it would have been 10 years since getting a transplant…
Another day, another 10 pounds. Hopefully I will smarten up and not bring my body through these dangerous 20 pound weight swings in 2 days. I know if I do start doing it right that I am in good hands for my future. I just have to become a positive influence in my life.