**This article is written from an adults perspective of what it is like to wait for a heart while being in active heart failure. It is very well written and something that transplant recipients of all ages can relate to.
Posted: Thursday, April 18, 2013 5:00 am
Some things are easy to look forward to: a gathering with friends, a holiday celebration, and a vacation. Others are more challenging: a dental visit, filing one’s taxes, and cleaning out closets. I have spent two years of my life trying to avoid or at least dodge a big scary inevitable. I need a heart transplant. The surgery itself scares me. The hoped for outcome would mean a much improved life but there are no guarantees and numerous risks. I lay awake anxiously at night knowing that the alternative is unacceptable but the reality is terrifying.
If anyone told me two years ago I would be going to live at University of Chicago while I wait for a heart I would have thought they were nuts. As someone who regularly ran, rode my bike and played tennis, I never imagined I would be the victim of heart failure. When I first noticed that I couldn’t complete my favorite work out class as I previously could, I attributed it to increasing age. When I couldn’t walk briskly enough to keep up with my children, I realized I could no longer deny I had a problem.
I assumed my shortness of breath was from some strange respiratory ailment. When a doctor told me my heart wasn’t strong enough to pump the way it should it was like he was talking to me in a foreign language. I wasn’t old or overweight. I was not the face of heart disease.
The first doctor I saw reassured me. Not much of my heart was damaged and with medicine I would probably be able to continue to live pretty normally. Naively I believed him. I, who used to think walking was for people who didn’t want to work out, started taking serious walks around my neighborhood. It wasn’t a good workout like running but it was all I could manage at the time. I was taking it easy, experimenting with new medicine, and waiting for things to improve.
One Saturday I was taking a shower when I felt the blood rush from my head. My right hand was stuck in a claw on top of my head as I tried to shampoo my hair. I thought I was going to faint so I tried to step out of the shower. I woke up in the hospital 12 hours later the victim of a stroke. My doctor had told me the tingling I felt in my hands and feet and the loss of my peripheral vision was because my weak heart couldn’t pump blood everywhere it should. In retrospect, I was having TIA’s or mini-strokes.
Now I was really weak. The walks I had taken just a week before were too ambitious. The left side of my body had lost strength and coordination. I walked like Igor of Frankenstein fame. My left shoulder became frozen and movement was extremely painful. Putting on a shirt was daunting let alone opening the car door or carrying groceries. I started going to physical therapy. I didn’t think I was making a lot of progress. I gave up on all my regular activities. I stopped being a fixture at my daughter’s school. Just showing up for her conference was a major effort.
Cardiac rehab replaced aerobics classes. Instead of hanging out with other moms dressed in workout clothes, my compatriots had more gray in their hair and moved a little slower. I still wasn’t ready to accept this was a permanent situation. I fought with my insurance until I got to visit Mayo Clinic and have a special exploratory surgery that had been performed six times previously. After weeks of anguish it showed nothing. I had a pacemaker implanted in my chest. Surely this would turn things around since the medicine hadn’t.
I was told I was a good candidate for a heart transplant. I went through all kinds of medical examinations to ensure that other than my heart I was healthy. I was put on the list officially. I still held out hope that by some miracle the meds or the pacemaker would kick in and I would be playing tennis and riding my bike again soon. I went to cardiac rehab religiously as if I was still working out but the pace was so minimal compared to what I was used to I often got frustrated.
Things got worse. I couldn’t walk around my block or climb the stairs to my bedroom. I got another device a pump that pushes a special drug through a PICC line in my arm. It helped for a little while but not enough. I joked that I was becoming the million dollar woman when I saw how expensive it was to acquire all this hardware.
Eventually my doctors asked me why I kept flirting with death. I realized that for a big scaredy cat I had faced a lot though it still seemed as if I was watching this all happen to someone else. As you read this column I have begun living at the hospital on a special pump that will do the work my heart can no longer do until a new heart becomes available. I am not looking forward to just hanging out in the ICU but this pump doesn’t leave the building. They have advised me to take up knitting. I have put what I thought of as my life on hold for almost two years. My family has given up multiple vacations and I nap after doing almost anything. I am not really ready but I am as ready as I am going to be.
April is National Donate Life Month. According to the Organ Procurement and Transplantation Center slightly over 14,000 people are registered as donors while over 100,000 people in the United States are waiting for an organ donation. Not all of them will get that donation in time. On average 79 people are transplant recipients every day. Eighteen people die daily hoping to receive a transplant. One donor can save as many as eight people. I have to not think that for me to get a heart someone else has to die. I have to keep telling myself that someone who was going to die anyway wanted to make a gift out of their life and share their organs with someone needy like me. I pray that that person’s family will know how wonderful their gift of life is. I hope to survive and thrive and make the most out of my second heart. I hope the red ribbons circling the trees on my street for over a year will soon be replaced with green ribbons. Besides green being my favorite color, a green ribbon is the logo for Donate Life.
No one looks forward to being an organ donor. Luckily there are those 14,014 donors who have planned to make life possible for unfortunate people like me who are seriously depending on the kindness of strangers.