Twelfth
Week Post Transplant:
April 24th – 30th,
2005
This week Bob and I went to Boston for my seventh biopsy and another echocardiogram. I did the echo first. Echocardiograms are a noninvasive way to see inside the heart. They’re fascinating to watch, as you can see what the ultrasound is picking up on a television monitor.
The technician said she had been doing echos for over twenty years and had seen many heart transplants. She said that the new heart is attached to the native heart at the right atrium. In the past, it looked like heart recipients had two right atria, or else a right atrium that was significantly larger than it should be. Nowadays, with improved surgical technique, the right atrium is truer to size. She said mine looked almost normal in size. (Many thanks to my wonderful surgeon, Dr. Cooper!) She also showed me the suture lines on my right atrium, where the two hearts were attached. Amazing.
The biopsy was scheduled for 9am , and I was called in right on time. I was told I had Dr. Baughman again, and I was relieved. I’ve had him twice before and I’ve come to trust him. Every doctor does a biopsy a little differently, and when you know what to expect, it eases your mind.
The biopsy room is a large room with an operating table in the center, a huge xray machine and monitors hanging from the ceiling. When I get there, I go behind a curtain to exchange my shirt for a johnny. Then I sign the routine paperwork and lay on the table. The nurse puts a large block under my legs to raise them, so the blood pools in my upper body.
The doctor comes by with an ultrasound to check the status of my right jugular. It still has a clot, but it looks smaller. They check my left side. All clear. I’m asked to turn my head to the right and keep it there. A nurse then washes the left side of my neck with cold betadine. A drape is put over the area and it covers my face. At first it was a little claustrophobic, but not anymore. They’ll uncover as much of your face as you want if you ask.
Then the doctor injects novocaine into my left jugular. Then at least two more shots. After the first shot, it’s supposed to be painless, but I feel the needle going into my muscle. So okay, maybe it isn’t that painful but it’s high on the queasy scale—in fact the entire procedure feels weird. Then they insert something into the vein. Let me stop here and say that I’m describing this from my viewpoint, from what I’m feeling and hearing. I’ve never seen the procedure.
Using the x-ray to guide them, they thread a wire through the vein into the heart and then over the wire they thread a catheter. I can feel pressure inside my chest when they do this. At some point they measure lung pressures. Mine have always been low, which is good. After that, they thread in the biopsy instrument. From what I’ve seen, it’s a long wire with pinchers on one end and a scissors-like handle on the other. When the proper end reaches the heart wall, the doctor warns me the pinch is coming. My heart skips a beat and jumps slightly as the tiny piece of heart muscle is removed. They take three or four biopsies.
At some point, they also draw blood for a series of blood tests. Then the procedure is over. They remove the apparatus from my neck and put hard pressure on my neck to stop the bleeding at the insertion point. Then I get a bandaide and I’m sent on my way.
I told the doctor that I’d been doing my best to drink a lot of water every day and increase my salt, as he suggested, hoping to add fluid to my veins. I wondered if I’d had any success from his point of view, and if my veins were easier to access. He said my heart is working so well that whatever water I put into my body is being pumped right out. He said I shouldn’t worry. When it’s easy to access the vein, the heart is usually not working so well.
During the clinic part of my visit, I asked what the scar on the right side underneath my collarbone was for as I hadn’t expected one to be there when I awoke after surgery. They looked up my surgical records on the in-office computer and found that it was for an arterial access. The scar is still tender and the skin beneath it is still numb to touch. The nerves will grow back in time.
The next day I got my results. Again, no rejection. Yay. They asked me to hold off taking the valcyte because my white blood cell count was too low, and valcyte, although it protects me from viruses, also lowers my white cell count. I’ll get my blood count retested locally next week.
I wasn’t surprised to hear my white cell count was low because I’d been feeling “under the weather” the last half of the week. I began sleeping 12 to 16 hours a day, and just not having the energy I’d had the previous three weeks. I’m going to take extra care of myself and not “over do” things, to rest when I need it and continue eating well. We’ll see how things improve.
Thirteenth
Week Post Transplant:
May 1st –
May 7th, 2005
I like to think I learn from my experiences. Last year when I was recovering from open heart surgery, I had a lot of set backs. This time, I hoped to plan my recovery more gradually, so the setbacks would be less often and of less intensity. I’m not sure if I’m experiencing a set back right now or not. I don’t think I’ve “overdone” things physically, but I’m still dragging this week. Still sleeping a ridiculous amount and feeling like I’m fighting something. My temperature fluctuates between normal and around 99.2. If it goes higher than this, I’ll call the transplant nurse. I also got a bad case of cold sores this week, further evidence my immune system is weak. Got my blood retested, but won’t get the results until next Monday.
Other than that, I don’t have any other cold symptoms except for a runny nose, which I’ve had since I got home from the hospital. So I think the best thing for me is to rest.
The most annoying symptom of the past two weeks has been the hand tremors. Sometimes it’s hard to control my fingers when I do my artwork or type. The tremors make my body feel as though it’s nervous, even though I myself don’t feel nervous. I rest assured knowing that it is due to the drugs, likely the cyclosporin, and that my dose will eventually be lowered in time and the tremors should go away.
Thursday marked my three-month anniversary after the heart transplant on February 5th. Milestones! I’m half way through what they say is the toughest part—the first six months.
Friday I went for orientation at the cardiac rehab clinic at Manchester Hospital . I will start cardiac rehab classes next Wednesday and will go Mondays, Wednesdays and Fridays. I’m looking forward to it!