Please remember that my heart transplantation recovery is not typical. I am not a physician but I have strong survival skills. I can only explain my recovery in my own language with the help of credible research.
If I have not exhausted you with my personal reports of my recovery, this one might put you over the top. At my last posting, it is pretty easy to see the sorry state of my battle with skin cancer. As you may recall, the Fluoroucil Cream USP 5% was used to treat my facial, ear, neck and arm skin cancer. The therapy worked wonders until it was applied once a day to my lips and nose. Then, my face exploded in swelling, bloody outbreaks and pretty severe pain.
After I stopped applying the cream, the swelling subsided and the bleeding stopped. My dermatologist and surgeon ascertained that all was well. However, I was unable to eat solids and my weight fell back to very low levels.
Shortly afterwards, my left side back broke out in an inexplicable rash. Fearing a repeat of the shingles, I headed to Dr. Anita Kiehl, a terrific infectious disease physician located in Albany. She reviewed my latest battles. When I showed her the photo of my face, she did not miss a beat. Her fear was that my CMV had become active again.
She suggested that several of my symptoms, like lack of appetite, the rash and the breakout on my face could well be caused by a recurrence of cytomegalovirus (CMV). I had an outbreak of the shingles in August 2010. Dr. Kiehl felt the lips were a combination of deep skin cancer but also could be connected to the herpes virus.
When I told her that my eyesight had diminished since my January purchase of new contact lenses, she immediately sent me to a retina specialist with experience in CMV retinitis.
According to the Mayo Clinic, CMV retinitis is caused by a member of a group of herpes-type viruses. As you may recall, my organ was not a perfect CMV match. I never had chickenpox and was CMV negative. My blessed donor was CMV positive, like more than 90 percent of the population. The protocol for this situation required that I spend six – seven hours once a week in the hospital being fed intravenously with a medication unfamiliar to me. After eight weeks, the sessions were decreased to every other week. Then, the feed was reduced to once a month. During this time, I was taking heavy doses of Vasotec to quell the CMV outbreak.
The most common causes of CMV are:
- Bone marrow transplant
- Drugs that suppress the immune system
- Organ transplant
Welcome to the world of transplant recovery, were the smallest things lead to bigger things. Nothing goes away easily.
Symptoms of CMV retinitis are:
- Blurred vision
- Blind spots
Retinitis usually starts in one eye and moves to the other eye. Without treatment, retinitis can cause total blindness in 4-6 months. Even with proper care and medications, CMV Retinitis can continue to worsen vision. Another serious possibility is that CMV retinitis creates the possibility of retinal detachment. Retinal detachment permanently damages the nerves of the eye, causing blindness.
With my new contact lenses, I was seeing very well. Now, seven months later, I am having great difficulty. I cannot read a book and I am suffering double vision.
Needless to say, the retina specialist was able to see me immediately. I am legally blind in my left eye and the right eye is not good. However, I do not have CMV retinitis. Instead, I have what was diagnosed as steroid induced cataracts. The specialist was happy about that.
My next port of call was Dr. Robinson, an eye surgeon. After administering his own tests, Dr. Robinson agreed with the evaluation. We scheduled the left eye for August 21st and the right eye two weeks later.
I have to admit that while I am happy about never having to wear glasses, I was more than a little down. Thanks to a weekend visit from Cari and her 3-year old Matthew and a pep talk from my old St. George’s buddy, “the Moon” (Guess his expertise), I was motivated to get back in the saddle.
I am now using the Meranol to make me hungry and I have returned to the fitness center to try to gain some muscle back. It is exhausting but I’m pretty sure I will get back my strength. And, best of all, I will see clearly for the first time in a long time.
You know, the person I miss the most from Tampa General is Dr. Kransnoble, the transplant psychologist. She knew my battles and more. I did see a psychiatrist in Albany and she was helpful. In one meditation period, a familiar refrain kept coming back to me.
This message keeps coming back to me. “The primary reason for heart transplantation is to prolong life.” While the statistics with heart transplantation continue to improve, there are no guarantees. Without this transplant, I would not have met three great grandchildren. You know, I am one lucky guy. I will be tossing balls with all eight grandchildren for a long time to come. Anything else is gravy. All the best, Hiland