After heart transplantation, little disruptions are going to happen. That’s just the way it is. In these times, the worst thing to do is to attempt self care. I was recently scolded by a physician’s assistant for atempting to self-treat or manage my own care. She likenend this to an attorney defending himslef or herself in a trial. It just does not work. Although transplant recipients know a great deal about their medications, their recovery and their bodies, very few of us are experienced with recovery.
I doubt any heart transplant surgeon or heart transplant cardiologist would ever say there is a perfect outcome. Success is measured by the oversall picture. The first being that the recipient is alive. The single purpose of heart transplantation is to prolong life. I am breating so I am a desired outcome. My recovery was recently described by Dr. Hoffman as “uncommon.” I am alive and that is where cardiologists re-enter our livsd. It is their expertise that will keep us going. Transplant cardiologists exist to keep us alive. What we do woth our prolonged life is up to us.
Every now and then, I am reminded of that. I have really worked at being upbeat. My life has been saved more than once by exercise, diet and meditation more than once. Talk about a lifestyle change, this is it.
I have not written lately because I have been up against it three more times. In January, I was hospitalized in Albany for what was described as an upper respiratory virus. Literally, I could not stand alone. After three days of 24/7 antibiotics, the virus was turned aside and I was soon released.
My reaction to this visit was one of extreme disappointment, accompanied by a good amount of anger and a larger amount of helpless frustration. My cardiologist in Albany reminded me that: a –I was alive. B – I had not been hospitalized for seven months.
He was right. The disappointment stemmed from a really high peak during the holidays. I was in the best shape since the transplant. I had plenty of energy. I felt stable in the lower body. My fitness training showed great results and was paying dividends in mind, body and soul. I do not remember ever being so psyched.
As for the virus, it reminded me that indoor parties are risky. If a hint of something is in the air, it will find me. Of course, we had lots of grandchild interaction. It was meaningful. But, the simple fact is that children are carriers. To that, my cardiologist reminded me that had it not been for the transplant, I would never have met two of those grandchildren. Dr. Philbin, my lead cardiologist in Albany, has a really positive way of reacting to my self-pity.
After being released from Albany Med, we headed to Tampa. I love it there. Davis Island is one sweet spot. If you ever get the chance, try it.
Dr. Hoffman called to make an appointment. She has a special place in my new heart.
However, as soon as we arrived in Tampa, I had the worst case of constipation. It was unimaginable. I called the cardio hotline where I was reminded that it was 2:00 a.m. The ER would not treat me for constipation a Saturday night. I reminded the nurse that it was Sunday morning, a regrettable comment.
Suzanne had to get to the pharmacy in the middle of the night. We tried everything. All I can say is that I have a new respect for constipation. This was worse than the constipation that happens when a patient comes off narcotic painkillers. About noon the next day, the symptoms eased. The event was disgusting, painful and humiliating beyond words.
After my system cleared I was exhausted. Suzanne helped me to the bathtub where I soaked for a good amount of time. I finally fell asleep there. I was exhausted.
While I was exiting the bathtub, I slipped. I hit the edge of the tub so hard that I almost blacked out. I had broken a rib on my good side, the right side. Surprisingly, that pain did not equal the pain on the other side where the two ribs were removed.
Before the transplant, my defribilator went off three times in one afternoon. Don’t even ask! I vowed it would never happen again. I will never go through that constipation thing again. Never! My fiber intake is through the ceiling.
During my appointment with Dr. Hoffman, she said there was little that could be done for the broken rib. Sure enough the pain eventually went away. As we were talking about a number of things, I reported that my right foot and ankle often swelled. Once before, she had told me that the swelling was a common side effect of a blood pressure medicine called Norvasc, which I was taking twice a day.
Because the swelling was so regular, I self-treated. I would stop any Norvasc intake for a day or two while the swelling eased. Dr. Hoffman thought that was a poor application. I was not to be without blood pressure medication for more than 12 hours. She recommended an alternative that was to be taken twice a day, but double the dosage.
Within three days, I began to feel disoriented. I was unsteady afoot. Every time I stood up, the room would spin and I felt I was going down. My blood pressure was 75 – 45. When I called the clinic they moved pretty quickly to go to a third medicine. It took a few days but the blood pressure did stabilize.
I mention these things because they highlght the need to be prepared for the little things that can turn out to be big things. Honestly, I had dropped my guard. I was softening my mental resistance and after the hosital trip in January, I was struggling with the mental battle. The simple routine of having an IV inserted, waiting for a room answering the same questions to students, physicians and nurses has become exhausting.
All in all, I could not wait to get back to Albany and home base. Okay, so now you are all caught up. I have lots of news about heart transplantation, including a ranking of the nation’s heart transplant centers.
Sorry for being delinquent with this post. Stay tuned.