Today, I had my first experience with pentamidine, a drug to prevent a particularly nasty form of pneumonia very common with Graft vs Host Disease. This powerful drug must be administered via nebulizer. It was harsh and metallic tasting, and I had to breath it in from a machine that suspended the drug in tiny particles to disburse it throughout my lung. My breathing became labored and I felt constrictive chest pain. Then, I coughed once, twice, and lapsed into a full asthma attack. I managed to get through with the help of an albuterol inhaler, but had to go on oxygen afterwards. I have to do this every month.
My numbers have stabilized and are increasing slowly. They have reduced and even eliminated some of the drugs I was taking, but new and more interesting compounds are waiting in the wings to counter GVHD. Already there are indications of elevated creatinine levels in my blood. This could mean dysfunction in my kidneys and may be a direct result of high cyclosporin levels. They have once again reduced my cyclosporin prescription in hopes of finding a balance. It also appears my liver is getting quite a workout as well. This stuff is serious as screen door on a submarine, and leaves me wrung out like a washrag.
We are cautiously optimistic that the doctors will find the right balance. Meanwhile, the nutritionist and I have a strained relationship. She wants me to eat, and I am not hungry. When they said the point would arrive that eating would become a chore, something you forced yourself to do, I think I did not quite believe them. I am now a believer. Eating can be hard work. So far, however, I’ve managed to stay far enough ahead that they don’t have to feed me intravenously. I just noted that intravenous contains the word ravenous -- interesting that...
Several folks have asked if there is any pain. Yes, there is pain from some organs that are irritated by the havoc in and around my intestinal tract. This morning, there was incredible muscular, joint, and bone pain. As the engraftment progresses I can expect additional bone pain and soreness. Rashes, sores, and inflamed areas get painful from time to time. Perhaps the worst so far is the muscle pain from forcing myself to walk, even when a wheelchair is available and would be so welcome. The doctors tell me that I cannot damage myself by using my muscles, in fact it is beneficial and can help the healing process. I thought about getting an orange triangle for my backpack -- beware slowcoach ahead!
I have been offered oxycodone and other painkillers, but have only allowed a low dose fentanyl patch on the back of my neck, because the sore in my throat interferes with my ability to swallow. I cannot take Tylenol or NSAIDs for fear they will mask a fever. So I rely on relaxation and massage to deal with localized pain and just learn to live with it. After all, it is supposed to be temporary. Marian has been great about massaging some sore muscles.
Well, there is little else to tell tonight. Marian and I battle on and rely on the skills of the medical personnel at Mayo Clinic, and on the power of prayer and good thoughts from you all. I hope you all have a wonderful evening and do enjoy each other’s company -- I can tell you that the time passes swiftly and suddenly it can be difficult to be together.
More tomorrow from the Gift of Life Transplant House (South).
God bless,
Mick