I left the hospital after 10 days. It was great getting back home. I thought I would be more active, but it only took a moment to realize I would have many more days of healing before normal activity would return.
For one thing, I still required my chest pillow. A chest pillow is used as a brace – of sorts. When a person has any open chest surgery, the sternum is broken. Now if it were an arm or a leg, the broken bone is stabilized with a cast. Obviously, with the sternum that is not possible. Instead, patients use a chest pillow. Not all the time, but I use it if I must cough or sneeze. I pull the pillow tightly against my chest, as if I were giving it a hug, with my arms wrapped tightly around it. The pillow is my constant companion for the next three weeks. Even turning from side to side in bed is painful. In the first days home I went through lots of pain medicine. Probably 10 to 12 tablets of Hydro-Codone each day.
Aside from my chest healing, I came home from the hospital with a lymph leak adjacent to my groin. You may recall me mentioning that during the surgery, they had to use an alternate site to hook up the bypass machine. Instead of going through my chest, they needed to go through my groin. While that was a life saving alternative, the procedure badly damaged the Lymphatics in the region. Leaking at a regular rate of about 25 cc’s an hour, you can imagine the mess it caused. Denise was a trooper though. She got in there and changed the lymph fluid soaked bandages five or six times a day.
As the days and weeks went by, the leaking continued. You might imagine that with all the tape from the bandages having been put on and taken off repeatedly, the skin in the area began to tear. The entire area was bruised and torn up. After about a month of regular bandaging, the doctor decided to use an “ostomy bag” to capture the fluid. It hung from my thigh from a fresh drainage hole the doctor created. Truly it was a blessing. No mess and easy to empty. We thought though, that the leak would never stop. Finally, just a couple of weeks ago, after nearly ten weeks of leaking, it stopped. Sunday night I drained it. By Monday morning the bag was still empty. What a night mare. I am so glad that is behind us.
Now for the hard part. If you are regular readers of this blog, you will remember me discussing “de-conditioning” the months leading up to being listed. In those six months preceding the transplant I was very sick, and unable to do the slightest of exercise. By the time I was called for the transplant, I had spent a full three months almost completely sedentary. To say that I was de-conditioned would be a gross understatement. My muscles have atrophied. I cannot easily walk anymore. The solution. A program called “cardiac rehab”. The only issue I have: The program is at a very large Army hospital, SAMMC, (San An Tonio Military Medical Center). By the time I walked from the parking lot to their office I would be too tired to exercise. Consequently, Denise and I needed to adjust our plan. We arranged for a physical therapist to come by my home twice a week. Between his visits, I would do the exercises he is teaching me.
Last week I had another heart biopsy. The doctor said I have zero signs of rejection. I asked him about going to the gym and he gave me his approval. This is going to go a long way towards getting back to “normal”, whatever that means. I am being removed from the steroids, slowly, but surely. I am down from 20 mg per day to 5 mg per day. Valcyte is gone (that was a $3,000 per month drug), as well as a few other drugs. As for the anti-rejection meds…well, I will use them for the rest of my life, but for now, the blood levels are stable, so I only need blood test monthly now. Before last week, I was getting weekly tests.
The first year after a heart transplant is the scariest, but I trudged through the first three months like a champ, and my recovery is on or ahead of schedule. I am continuing to exercise regularly, and though I am still severely de-conditioned, I am improving.
As always, please say a prayer for all the donors in our world, and their families.
If you find yourself not really knowing what the heck is going on, you can catch up. Pick up a copy of “Death:Living To Talk About It” here. http://www.brianhayden.com/ My book is available in Paper back, Kindle and Nook.
Take some time to go back in the blog..one month…six months…a year or more. My life is spilled all over the last 200 + blog entries. I invite you in and check it out.
This memoir is the story of a man struggling with heart failure, and the trials he and his family endured for many years. It is the story which proves that no matter what, you do not give up. There IS hope.
The sequel to this story is “Road To Transplant”. Some of what you read in this blog is in the new book. Road To Transplant is scheduled to be released in Mid November 2012.