Please accept my most humble apology for the extended time between posts. Here’s hoping it does not happen again. I have much information and many experiences to share.
So many of the things in our lives evolve around numbers. Athletic scores, golf scores, business budgets, income, accounts payable, days on the wait list, the number of hours before loved ones know you are safe and the number of days left on your tour of duty. I believe in numbers. They help set goals and they tell their own story. In my medical experiences, I thought numbers would portray a different story than has taken place.
I thought the recovery period for my heart transplant would be one year. I believed that Columbia Presbyterian was firm about not accepting candidates after age 65 just as I believed Tampa General accepts transplant patients up to age 70. Numbers are part of the transplant process.
I know the number of milligrams of Morpheme Sulphate I took daily for more than a month to neutralize the pain from my most recent surgery. I know the number of milligrams of Vfend that I take to ward off the aspergilus mold that has been residing in my left lung for nearly a year and eventually found its way to my spine.
At first, the quantity of medications I was ingesting every day did not bother me. A year later, my medications spark some resentment, especially the heavy doses of steroids and insulin, which now seem a lifelong ordeal.
I have much to tell you, but first I ask that you realize my case is unique. When I asked my cardiologist what caused my chronic myopathy and chronic neuropathy, she politely responded, “Mr. Doolittle, we may never know.” She then added that while almost everything that has happened to me has happened to other transplant recipients, they have never all happened to one patient.
I considered halting my web log and my writing because I believe in the transplant process. I have seen how successful it can be. The heart transplant miracle is real but not without risks. I was willing to take the risk. You will come to your own conclusions.
My experience has been atypical. I have my unconfirmed opinions on how certain events evolved, but they are only based on a pretty sound knowledge of my body, how it works, what it needs for fuel and most of its limitations.
Remember, I have had heart disease for ten frustrating years. As you know, you learn to compensate and attempt to maintain an active lifestyle. If you are successful at it, many of your acquaintances and even some of your friends may come to question your need for a new heart. If you are in end-stage heart disease, what others say or think matters not. Stay the course. Live each day. Accomplish a memorable event about which you can smile, laugh or cry.
Stretch. Meditate. Pray. Love. You are not dead yet.
Recently my medical setbacks crossed paths. Some confusion about the pain from shingles, a fairly common byproduct of transplantation, and from my infected, unnoticed spine existed. Life saving surgery ensued. This surgery and the extended period of time it took for a proper diagnosis put a bitter taste in my mouth, but I now realize how complex my recovery has been.
I believe many patients never experience any of the side effects I have experienced. I have met many men and women that appear to have had a seamless, by-the-book recovery. Stay the course.
Since my last entry in March, I contracted bacterial pneumonia in my right lung. I have endured severe weight loss, severe muscle loss and undergone weeks of inpatient rehabilitation to learn how to walk again. I have lost the use of two fingers in my left hand, continue to fight chronic myopathy and neuropathy, have contracted shingles and undergone major spinal surgery between discs T6 and T7.
The aspergilus somehow worked its way to my spine and literally ate through the vertebrae between the discs and was working vertically up and down the spine. Had the condition not been discovered, I would certainly have been paralyzed and probably worse.
The surgery required that one of my ribs be removed to be used to replace the missing spine. My very talented neuro-surgeon, Dr. David Semenov of the Albany Medical Center in Albany New York, placed the rib in the gap, built a protective wire cage around the rib/spine and placed a metal plate over the cage.
Because of the proximity to the lung, there was little margin for error. I shall always be indebted to Dr. Semenov for taking my case and for doing such a brilliant job. Two doctors I interviewed were unwilling to tackle this surgery. As a friend suggested, “Who wants to perform high-risk surgery on a 65-year old heart transplant recipient?”
On Tuesday, I will have a catscan and meet with Dr. Semenoff for a progress report. On Wednesday, I meet with a terrific infectious disease physician, Dr. Anita Keihl, to assess our progress on the fight against aspergilus..
In Tampa, my cardiologist and infectious disease team believed that Vfend caused my myopathy and neuropathy so we halted my Vfend intake before it ran the full cycle. That may have been a mistake. As Dr. Hoffman said, “we may never know” what caused those debilitating conditions but one thing is certain. Aspergilus came back with a vengeance.
My one-year heart biopsy is slated for 11-02-10 in Tampa. I expect my back surgery to take almost another full year to recover and I have no idea what movement limitations will be permanent. The pain from that operation has been excruciating. I have used morphene in large quantities to combat the pain.
Suzanne has been remarkable and unflappable as we have gone through every conceivable emotion. Before returning to Albany, I was alone in Tampa dealing with shingles on the right side of my back. Even though I reported severe pain in the spine and on the left side of my back, my treatment was focused on the shingles, a disease not uncommon for transplant recipients. I should have been more forceful and insisted upon catscans and MRI’s.
When the shingles disappeared and the pain continued to intensify, we had a problem. I was readmitted to TGH for three days, but no MRI was ordered and the spinal deterioration continued to escalate.
I am now mobile but weak. I have difficulty with stairs but intend to begin a lightweight exercise program tomorrow. I am excited about that because I feel that I can help myself in the recovery process.
When I received my heart, I vowed to never regret accepting the miracle gift. As my step-daughter, Cari, reminded me, where would I be without the transplant? I dislike the pain, but it will subside. I like feeling my toes and my working fingers. I will come all the way back. So, will you!
There is so much to report. Bear with me and my writing skills will improve every day.