This is one of my heartfelt blog posts, so if you are not up for heartfelt you should stop reading now.
• Oh, you’re still here. Good. I am about to tell you a story of the daughter we raised and how she became a hero. First some statistics. More than 123,000 people in the U.S. are waiting for an organ transplant as of 2015. A new person joins the lists every twelve minutes.
• More than 21 people a day die from the lack of a donated organ.
• 110,000 people are waiting for a kidney transplant.
• My husband is the recipient of a transplanted kidney.
Until 2008, these statistics were nebulous to me. Yes, I was aware that my husband had had kidney disease as a toddler, probably the result of a bad bout of measles. Yes, I knew that his life was saved by the introduction of a “wonder drug” that came into regular use in the late forties. Yes, I knew that his kidneys functioned at a damaged level, but they did function and we were not alarmed about his prognosis. Further kidney function problems might occur in the future, but why borrow trouble? Anyway, he had other more pressing health problems that had to be dealt with immediately: a heart condition, a rare tumor that grew on his adrenal gland and had to be removed, a bout of kidney stones. One pediatrician told me that the next time I got married I should demand health documents. Because of his issues and other genetic concerns, we have only one child, but she is a pip. She is smart talented and beautiful. We used to tell nosy people that we stopped with one because we got it right the first time.
In 2003, I lost my long-term job with the state of Colorado and we decided to prepare for retirement by moving to Central Florida. We moved into a model 55+ community that is touted as the “Friendliest Home Town on Earth”. At that time, there was a hospital on site, but it functioned mainly as a triage center. Good medical care lay to the north of us in Gainesville, to the west in Tampa, or to the south in Orlando. We, in fact, found a nephrologist close by whose satellite office did not even have a computer.
We should have paid attention.
In 2007, my husband began to develop symptoms of Restless Leg. His nighttime movements were so violent that, on several occasions, he threw himself out of bed. He refused to have bedrails but did go to the fine teaching hospital to the north to consult with an acclaimed neurologist.
My husband got one of those drugs that has the long disclaimer after its television commercial: do not take if you have impaired kidneys. The acclaimed doctor looked at his history and said that, since his kidney function had been stable for many years, there was no problem in taking the drug. So, we left the acclaimed hospital with a prescription and no mandate to follow up with the doctor for frequent checks.
Within about two months, my husband’s kidneys went kaput. He was facing dialysis or transplant and we had a warning from the local nephrologist that we should leave the model community as soon as possible if we wanted him to survive. Within weeks, he was up north and I was left, virtually alone, to put the house on the market and dispose of almost all of our possessions so that we could move into a small apartment closer to the famous transplant center we were able to get into. It was right at the beginning of the real estate bust and we barely broke even on the house, which will explain to you why we are still living in an apartment.
Because of my husband’s attendant health issues, he was not a great candidate for dialysis and his place on the transplant list was low. So, without my knowledge (I was still in Florida giving away our stuff to an unscrupulous consigner who robbed us. Yes, I know I should write a book, but you will have to settle for this blog) my 28 year old only child volunteered to be tested to become my husband’s donor.
When I learned that she had taken this action, I cried. No, I wailed. I had to be taken off the library desk where I was working and hidden in the back where my whole life turned dark in front of my eyes. It was terrible.
I will not tell my daughter’s story. That is here to tell, and she did in a long blog post to help other potential donors understand the process. You should read it. Here’s the link: https://kidneto.wordpress.com/.
Long story short, she was a near perfect match and despite my misgivings, she signed on to donate. The surgery was scheduled for early in September 2008. Except that my husband had a small heart attack in August and needed to have a stent put in. He then needed time to recover from that procedure. Finally, on December 8, 2008, he received my daughter’s kidney.
You never want to be in the position of having your two closest loved ones in an operating room together while one gives the other life. My husband’s sisters stood by me the whole time.
As soon as my daughter’s kidney took up residence in my husband’s body, it started filtering. In fact, he had the best kidney function he had had since age two. Fun fact: he now has three kidneys because the bad ones are not removed. The new kidney is placed in the abdomen below the existing organs. He was taken to a kidney ICU, while my daughter went to a regular room with a very kindly roommate and a staff who called her a hero, which she was. Within a few days, she was home in her fourth floor walk-up apartment (a crew of burley young men who were her urban tribe carried her upstairs). Within two weeks, she was back to normal complaining only of the scars that had been made and some phantom pain in the area of the donated kidney.
My husband’s journey has been less successful. I want to say here that most people, post-transplant, do wonderfully and have a renewed lease on life. This has not been our outcome. There are anti-rejection drugs that a transplant patient must take for the rest of his or her life, and these drugs are rough. In addition, when we left the hospital with roughly thirty pills to take at intervals throughout the day, I was charged with being a para-pharmacist. It was not a good move. My high school chemistry teacher once told me he would give me a passing grade only if I agreed to never go near a chemical again. I should have listened. Within the week, I had screwed up my husband’s dosages and landed him back in the hospital over Christmas, the worst time to be in a hospital.
Here is a disclaimer: most transplant patients do wonderfully, post-surgery. In fact, I have heard stories of people who find a new lease on life because of the gift of life that they have been given. That has not been our case. Although my husband’s kidney function is fine and his heart is working very well, the medicines are hard on him and drain his energy. He has also lost about thirty pounds since the surgery, which he did not have to lose. He is retired now.
There is also the issue of insurance companies. I retired last May and we went on Medicare and an AARP health supplement. Medicare only covers the transplant meds for thirty-six months. After that, the supplement is supposed to take over as a part of Medicare Plan B. We have been in a three-month fight to get these drugs covered. As of last month, we started to pay out of pocket for these not inexpensive, life-giving medications.
Here is the happy aftermath. My daughter met a wonderful young man, a bit later, and we figured out that this might be the one. They were married in 2012 under a canopy of trees in upstate New York. The bride cried a lot. Her friends performed readings from “The Princess Bride.” Her mom (Me!) made a speech of love and gratitude. We all cried a lot. Her wonderful young man didn’t care about her scars and had had his own experience with altruism. When his dad was dying of ALS, he took a year off to help his mother care for her husband. If ever there were two young people made for each other, it is my daughter and her husband. Anyway, my daughter who had said that she wasn’t ready to lose her father had him available to walk her down the aisle. It was a wonderful joining of kindred spirits. Whenever you lose hope about the younger generation, think of these two wonderful people, freezing in a field on their wedding day.
We moved again when I retired. We are back in Florida, but closer to an urban center with a good hospital available. When I got my new driver’s license, I checked the box marked “Organ Donor”. I had many reasons before not to want to give up organs, but I now have a role model of saint-like behavior. All of my religious and scaredy-cat reasons for not offering my organs to another person went out the window. How can I possibly be less brave than my daughter was?
That’s our story. I hope it moves you to check off the “organ donor” box on your license. Perhaps you are braver than I was and have made this promise long ago. I promise you that the organs you give to others will be not just appreciated, but be a living remembrance of your generosity and love for others.
In our religion, you leave a stone on the gravestone of the deceased to let their soul know you have visited. You light a candle, each year, to remind yourself of the person you have lost. However, there is one more religious mandate I decided took precedent over everything: To save one life, it is as if you have saved the world. When my time comes, I hope to help between five and eight people live on with my organs. I think that is my best memorial.
In addition, how many people can say that they have a Jewish saint as a daughter?
BTW, I’m including a little musical accompaniment for you. The singing bride is rocking out with just one kidney. https://www.youtube.com/watch?v=nepMmJ9YFX8