Year One

Heart transplant patients have things a little harder than other transplant patients. If we start to reject we can die fast, especially right after a transplant. I had a biopsy before I was ever dismissed from CICU, and I would have one every week for the next 6 weeks. My parents had moved in by this time and took me for all my appointments. Dad walked with me as I began to work my way up the block and back at a very slow pace. Each time I went for a biopsy they had to go into my left arteries because the right subclaven had lodged itself under my collar bone and was not coming out. This was learned the hard way on the trial run. Going on the left presented a whole new set of problems....possible valve damage as they had to go through 2 valves to get to the left ventricle for the biopsy. At six weeks out I started cardiac rehab and was allowed to drive, which meant the folks could finally go home and rest. I would wear my mask and get out in public. I had to wash all my fruits and veggies to keep from getting something from them. (Trust me, you NEVER want to eat anything grown in the ground in Mexico. If you knew what I know you'd feel the same way!) I even ran up to school during lunch one day just to say "hi" to my coworkers. Even though I had to wear a mask out in public the feeling of independence was outstanding!

I was taking 46 pills a day at this point. Anti-rejection drugs, predisone, mineral supplements, blood pressure meds, stuff to help me sleep (restless leg syndrome is a by-product of some of these meds), stuff to help my stomach endure the meds I was taking...it was crazy. The predisone made me cry like a baby at commercials...something that is typically NOT me. Luckily enough, they were tapering me off of it and the hope was that perhaps I would not have to take it at all. My rehab consisted of walking on a treadmill at various levels. I started out small but eventually got up to about 2 miles at a Level 2.5 at a pretty brisk pace. I then added a recumbrant bike and between the two I'd get almost 4 miles of work in three times a week. The biopsies changed to every two weeks then once a month. My neck was ever so grateful!

I returned to work the 22nd of July with hand sanitizer outside my office, and on the 23rd my parents threw a BBQ birthday party for me with family and friends coming. Dawn's 3 year old daughter, Audrey, provided the laugh of the day when she decided to strip down to her underwear and jump in the pool. I asked her if she had her mother's permission.....she lied!  But a couple of days later I just didn't feel that great. I started getting nauseous and had a pain in my lower back. I continued at work but a couple of days later I called the clinic and they suggested that I come in and get some blood work done. Turned out that I caught CMV, which is a virus that transplant patients can get. In really serious forms it can cause rejection so I had to go on even more pills to battle that. Bad news was that I also had shingles....and I gave them to my dad when he came over to go to the doctor with me. I couldn't keep food in and really had to fight the CMV. I even had to stay home for a couple of days. Clinic eventually sent me to Dr. Lewis, a disease specialist, who sent my bloodwork to the Mayo clinic for evaluation.

This meant that I had to go back to weekly blood draws (yuck, more needles!) and have biopsies every two weeks to make sure I wasn't rejecting. Luckily, I wasn't. I kept battling this up till Veteran's Day when all of the sudden my white cell count dropped to .8 and everyone at the clinic got all excited...in a bad way. Once again, I was confined to quarters and had to go for daily blood draws. In fact, I had to be given Neulesta to get my white blood cells to start forming. Two shots at $250 each since my insurance wouldn't pay for them. We had to watch and make sure the CMV didn't turn into a resistant CMV and start causing major problems. I finally went back to work right before Thanksgiving but had to wear a mask in the building with the kids.

My brother was diagnosed with non-Hodgkin's lymphoma right before Christmas. Seemed we just couldn't get a break in my family. The holidays were special for the fact that I was there to enjoy them, but we didn't know how Robert's situation was going to work out. He underwent a biopsy where he had some lymph nodes and glands removed around his lower neck and started chemo. We had to watch being around each other because both of us were so imnio-suppressed.

At the anniversary of my transplant I wrote the donor family to thank them for my new year of life. I expressed my appreciation for what they had given me at a time of personal loss and wanted them to know what I had been doing for the past year, but I never got a reply. I just accepted that perhaps it was too painful for them to deal with, and I could understand why. I was also dealing with some issues at school. I had a new principal who seemed to feel that my having to take off to go to doctor appointments was keeping me from doing my job successfully. As the anniversary of my transplant came up I decided to go ahead and put in for a transfer to another job within the district. I couldn't see anything improving where I was at but I sure hated to leave my great support group at school. But, as I had learned, God had a plan and if I was smart enough not to try to stop it, the plan usually worked out!