Back in a regular hospital room,I begin to understand what my life will be like for the next several months. After they settle me in and get me hooked up to the wireless heart monitor, the first thing the nurse does is put signs on my wall. Each sign has a medication name, its purpose and lists the potential side effects. There are 5 signs. The medications are Bactrim, Cellcept, Prograf, Prednisone and Valcyte. The potential side effects from any one or more are: tremors, high blood sugar, swelling, numbness and tingling, abnormal sensation, stomach upset/ulcer, hot flushing, increased hair growth, hair loss, sensitivity to sunlight, weight gain, blurry vision, mood swings, hallucinations, anxiety, insomnia and, of course, increased risk of infection and low blood cell counts.
Out of ICU, I finally take a good look at my incision. In the center of my chest from just below the collar bone to the top of my rib cage are neat whipstitches in and out of very red and raised skin. I immediately dub it my 'Raggedy Ann' scar. I also have the incision where they took out my pacemaker. That will be allowed to heal normally for the first time in 12 years. It hurts worse than the center one. It is painful to move, but not as painful as you might imagine. For one thing, my entire chest is numb, breasts and all. That alone is an odd feeling.
There are still two catheters in my neck, which is red, swollen, scarred, bruised and rashy-looking. There is also still a drain hanging out from below my left rib cage. It fills with what looks like a mixture of blood and water. It occurs to me that it must be similar to what poured from Jesus' side when He was on the cross. (John 19:34)
Over the next few days, a physical therapist comes in to help me with simple exercises and stretches to get me moving without ripping my incision. An occupational therapist comes into show me how to get in and out of bed safely, how to function with tremors and how to go about daily hygiene and other activities when I go home. A diabetes nurse comes to make sure I understand how to test my blood sugar, measure insulin and give myself injections. I've had to give myself injections of blood thinner before, so it doesn't seem so bad.
Even though my mind is still foggy and I feel way beyond strange, I am not drowsy. My average day goes something like this:
5:30 am Phlebotomist comes in to draw blood
6:00 am X-ray techs bring in the portable machine and take a chest x-ray
6:30 am Nurse comes in to check my vitals and weigh me
Nurse comes in to check my blood sugar before breakfast. If it's high, I either have to take a pill before I eat or give myself an insulin injection. The thinking is that this is something I will have to do at home.
Breakfast - I am on the renal/diabetic/hearthealthy diet. Meal times are not very exciting. I'm limited on carbs/sugar, potassium and sodium. The regular menu food at Cedars is not bad. I've had it many times before. But it's hard to put flavor in food when you have to leave all the good stuff out. And I LOVE good food, so this bland diet is a struggle for me. The saving grace is that I am allowed to have some dark chocolate every day. After breakfast, the nurse comes in with my meds. She tells me what each one is and what it's for. There are about 9 pills total, two of which are HUGE and green - not fun to swallow. A
couple of meds I still get via IV.
Mom usually comes in to spend the day with me. They like to keep me sitting in a chair or trying to walk around, escorted, with a mask a gloves on if I go into the hall. At some point the nurse's aide comes to help me wash up (or Mom does) and change my gown. I'm not allowed to shower in the hospital. The danger of infection is considered too high. Just before lunch they check my vitals and my blood sugar again.
12ish Lunch. Enough said.
At some point in the day - morning or afternoon - the parade of doctors begins.There are the transplant surgeons, the regular transplant doctors and transplant coordinators, the kidney specialist, the diabetes specialist and the infectious disease specialist. In between, Mom and I visit, watch TV and do crossword puzzles. With tremors, my handwriting is like chicken scratches. I try to sit in a chair as much as possible and move around. The IV tree makes it awkward, but I've done it before. I never nap. I'm never sleepy. Mom may nod off a little. Then she leaves early enough to miss the heavy evening traffice. I wait for Spud to arrive.
The mealtime routine commences. Spud strolls in - a highlight of my day. I usually have enough food left for him to eat some of my dinner - if he wants it. If not, he grabs something in the cafeteria.
7pm - ?
Spud and I go for a walk in the halls. We watch TV and catch up. He leaves around 10. I watch more TV and have a little snack around bedtime. It's usually 1 am before I start to feel tired, but not really sleepy. There's that darned insomnia side effect. Or maybe it's just all the blood pumping through my body that I'm not used to. I finally turn the lights off and the boob tube and try to sleep. Here and there I doze. When I'm allowed to walk by myself, many early mornings between 4 and 5, I walk the halls. I'm usually sitting there waiting for the phlebotomist and the x-ray guys.
I was informed prior to surgery that the only way to determine if you are in rejection with a heart transplant is through a biopsy. My first one is already scheduled for a week after my surgery - as an outpatient. However, due to the kidney failure and the fact that I have a low-grade fever and scratchy throat, I cannot yet be released. They do the biopsy - going in through a veing in my neck and snipping out a little heart tissue. The following day they tell me the results are good and talk about sending me home. It honestly makes me apprehensive. I still feel fragile. As it turns out, there is still too much fluid in my drain and I still have a low-grade fever. They will keep me for awhile longer.
AUTHOR'S NOTE: If some of that made for boring reading, it's because I wanted you to feel what it's like to be in a hospital day after day. My total stay ended up being about 3 weeks. And there are people who are there longer. If you have a friend or loved one in the hospital and you are close enough to visit at all, take an evening or afternoon out of your week and go. It will give a break to those who are there day in and day out and be a much-needed lift to the one who is ill.