I received this letter from a friend, who has been following the myhearttransplant.com website for a while. Ken’s transplant recovery is not the happiest transplant experience but it says a lot about the survival instincts you may need to summon if things go wrong and especially if you encounter the dreaded aspergillius mold infection.
“I do not know if you remember but I had e-mailed you before about alternatives to transplant. Well, on Aug. 4, I received a call to come to the hospital for a probable match. Next morning on Aug. 5, I received my heart transplant.
“After I received the transplant, they could not close me up because I had too much fluid. They packed my chest and left it open for 3 days.
“Then, I went to the CCU where they took care of me and started to clean out my lungs and helped me wake up occasionally. After that, I went to the heart unit, which is for people either waiting for a heart or who have just received one. In that unit, they worked to get me to stay awake more and started physical therapy to help me walk.
“When I first started with PT, the therapist came into my room and said that if I felt up to it I should try to stand up and take a step. Well I felt fine but a little weak. I told her that I was at least going to walk out in the hallway. That didn’t work. I went to get out of bed. I tried to stand up and all of a sudden my legs gave out. I was back in bed and very disgusted. I couldn’t even stand or walk.
“After that, we did exercises in bed and then in a chair to strengthen my legs. After over a week of that I could finally walk. I had to use a walker and could only get as far as my doorway, but at least I could walk.
“During this time, I could remember how you said it is like learning to walk all over again. While there, I also encountered a few infections and blood clots so they added antibiotics to my medication list and made everything slow down. I was not getting as much therapy.
“When I could walk halfway down the hall, they let me out to go to a rehab center where I started over. After I got there, I started feeling more and more tired. The therapists were very good about this and did not push me too much. I had three daily therapies; Occupational therapy, physical therapy and cardio therapy. After PT on the second day, I went back to my room and fell asleep until 7:30 that night. My PT was at 10:30AM.
“On the third day, I did some of my therapy. I do not remember how much but I was weak and very tired. Early that night, the last thing I remember was having to go to the bathroom. Two nurses helped me get to the commode.
“While sitting there, my wife said I started going into convulsions and passed out. She called for the nurses with both call bells and was yelling for help. When the nurses arrived, they somehow picked me up, put me back on my bed, and started CPR.
“The next thing I remember was waking up in the hospital. They asked me if I knew where I was. Not knowing I was, I said JFK. A while later when I was more alert they explained to me what had happened and what they were doing.
“Fluid had built up around my heart so that it could not pump effectively. I was to stay in bed until they had everything stabilized. Another week of not being able to get up and walk passed.
“Just like you had said, it was learning how to walk all over again. They started me with therapy in the hospital and after a week of that, I started complaining that I should be able to go back to Rehab at JFK.
“When I got back to rehab, it was almost like a homecoming. Everyone came to greet me and give their support. They even gave me my same room. I was still very weak and could hardly get out of bed, but this time they gave me an ultrasound every few days to make sure I was not retaining more fluid around my heart.
“The second day I was there I knew I was in the right place. Every morning, my OT therapist Michelle would come in around 7 AM and make sure I was awake. Since I had trouble getting out of bed and since I could not walk well, she would bring me a dishpan with water and body wipes so I could clean myself and do my teeth. If I started getting too tired she would help me and get me dressed.
“As I progressed, she had me do more and more for myself. About an hour and a half later, my PT therapist Katrina would come in, get me into a wheelchair and bring me to therapy. There, she had me do all types of leg exercises and always made me walk as far as I could.
“About 20 minutes after that came cardio rehab. I met Barry, who was in charge of my progress. He decided what I should do in therapy. They started me on the NU step where you sit down and put your feet on peddles and your hands on the arms and when you push down you pull up on the handle. My first time doing this I did okay, but when it was time to get off I could not stand up. Two nurses tried to help me up, but couldn’t. Barry came over, moved my wheel chair to the side of me and to the front. He told me he was going to put his arms around me and I should hang on to him the best that I could.
“Well that worked. Somehow, he lifted me to my feet, turned a little and guided me right into my chair.
“During this time, my daughter was supposed to get married on Aug 15. Since I was in the hospital and could not go, they postponed the wedding for a month.
“Well, the month went by and I was still in Rehab. I got my hair cut for the first time since the transplant. My wife was going to bring my suit and I thought I was ready to go. Then two of my doctors came in and said that I should not go. They would not sign me out. They said I was still too weak and would have to have a nurse come with me in an ambulance. It could be dangerous.
“So, instead of going to the wedding, my now son-in-law taught me how to Skype over his iPhone. At least I got to see some of the wedding even if my father had to give away my daughter and give my speech.
“As I said with the help of my son-in-law and my wife, who was at the wedding with another phone, I could see it. Also, after the wedding, I received a great treat when my daughter and her new husband came to see me wearing her wedding dress and his tuxedo. Our other daughter also came in her matron of honor dress with her husband and their two children along with my wife.
“When they were all there, a nurse came in and took pictures of all of us. One of the reasons I wrote this part is to let people know what could happen while you are recovering.
“On Oct. 6, I was finally able to go home. I couldn’t wait. Once I got home, it took me a while to get in the house. By the time I walked up the driveway and up the steps to my house, I was a bit tired. About 20 minutes later, all my children and grandchildren came over to welcome me home and have dinner with us.
“On the following Monday, the rehab center called to schedule my outpatient PT and cardio for three times a week. I was scheduled for Monday, Wednesday and Friday, starting at 9:00 am.
“The therapy was going very good. I was improving every week. My PT ended the beginning of Dec. but I still had cardio until the second week in Jan. The last two weeks of rehab, I started getting really tired. I could not keep up with my schedule. After that, I was still trying to exercise but it was getting harder every day. All I wanted to do was sleep.
“During this time, I started developing lumps on my back. I went to my primary physician, who sent me to a general surgeon.
“When I was at the surgeon, she lanced the three lumps on my back and sent them to the lab. She prescribed an antibiotic.
“Two days later, she called and said it was a fungal infection and sent a new Rx to our pharmacy. Two days after that, we received a call from the transplant team telling us to double the dose of the new antifungal medicine.
“A few days after that I was so tired, I did not want to get out of bed. My wife called the transplant team. They told her to bring me in. When I got there they checked me out and said that since I was against going to the hospital, I should come back tomorrow morning. When I got there, they sent me down stairs for an x-ray and to try to drain fluid from my lungs. That did not go as planned. They took the x-ray but could not drain the fluid because my blood pressure was too low. They sent me back upstairs where they started an IV to try to get more fluid. It was not helping. I was lightheaded.
“Then, two nurses and the nurse practitioner came in and said that they were sorry but I had to go to the hospital. The nurses wheeled me out to the parking garage where there was transport to the hospital.
“Once in the hospital, they wheeled me to my room where they introduced me to the nurses. Most of remembered me. They gave me an update on my status.
“After that, the nurse collected all my information and hooked me up to another IV to fight the fungus. The next day the doctors came in and said I had the Aspergillius infection and that it was very hard to treat.
“The next day with all the IVs and pills, I started feeling a little better, but still had no energy. In the next couple of days, they were able to remove fluid from around my lung and I felt better.
“It almost seemed like I had a revolving door to my room. The nurses and PT people would come every 2 hours, if not more. There was always a doctor. My disease doctor and a nutritionist came by regularly because I could not digest food. I was losing a lot of weight, about 65 lbs.
“Each doctor had partners that would come in at different times. In late afternoon, a doctor and his partner would come in and explain what they did or did not confirm today. Apparently, they all talked at night or early morning, because the next day the nurse would change some of my medication and then the doctors would come in and explain their approach.
“One late afternoon, another doctor came in and said he had orders from my doctors to do a procedure. He explained that he was going to put me to sleep and insert tubes and scopes to get biopsies and drain more fluid.
“The next day my doctors came in and asked if I had met the doctor that was going to do the procedure. They also explained to me what was going to happen. After the procedure, they brought me back to my room with a tube still coming out of the side of my chest. By now, I was used to it. The doctor came in and said he had drained the area, taken the biopsies and flushed everything out.
“Through the blood tests and the procedure, they confirmed that the fungus was in my blood and in my right lung and by then my blood count was dropping. My magnesium level was extremely low so they added another IV to my regimen.
“When they received all the information, they sent me for a cat scan of my brain to make sure I had no nodes. Luckily, it was clean. During this time, I developed more lumps to be lanced. One thing I learned from this was to let the doctors know when you start to feel them. Once they get big, they get infected. Then, they cannot be numbed to lance and they have to go somewhat deep to make sure they have a good opening for the fluid to get out.
“After being in the hospital for another 2 weeks, they let me go home. I got home in February with a pick line so I could hook up my IVs every day. A visiting nurse is scheduled to come every week until the pick line is removed.
“So far, at least for now I am feeling better and walking more and even trying some light arm exercises and steps. That is it for now. I just hope I beat the infections and stay out of the hospital for a while.