In the waiting room we chatted with a woman whose daughter is on steroids and immunosuppressants following four – count them, four! - liver transplants. Her first transplant was with a liver that was not a great match but it saved her life. I don’t remember the reasons for the subsequent three transplants.
We were taken back to an exam room where a nurse screened Jeff briefly. Then Dr. Winnott entered the room and remarked that she had met Jeff last year around this time in preparation for his transplant. She said she was puzzled, though, because she is usually really good with faces and although she read through the visit notes and remembered his case, she didn’t remember him. We told her that could easily be explained. She saw him after he was treated for leukemia and he had no hair and was much thinner than he is now. Also, he now has that steroid-puffy face.
Dr. Winnott examined Jeff’s skin all over. I asked her about the spot on his back which erupted with a grayish ooze sometime during his first 100 days and then turned into a crusty blackhead and stayed that way, never healing completely during the ensuing months. She said, “That’s exactly what it is, a crusty blackhead!” She said it is probably the start of a cyst but it is nothing to be concerned about. She didn’t see anything else notable.
I told Dr. Winnott that Jeff had recently confessed that he stopped using the lotion with sunscreen that was prescribed following his transplant. He needs to use sunscreen all the time because he is on more than one medication that makes him particularly susceptible to sunburn. Dr. Winnott reinforced this by repeating the warning several times, telling him it warranted repeating several times. She said that while taking the anti-fungal medication, Voriconazole, even walking to the mailbox once unprotected could result in a burn. Besides Voriconazole, he also takes an antibiotic that can cause sensitivity to the sun. So, sunscreen is a must!
Dr. Winnott examined his finger- and toenails and Jeff removed his Bandaid so she could see his bloody fingernail. Yesterday he whacked a finger with a hammer-stapler at Kerry and Theresa’s house and his thin nail split horizontally about ¼” long. She recommended a vinegar-water bath twice a day to prevent infection. It will take a long, long time to heal. She told Jeff that, “We only have to protect you from yourself and the sun.” He will not need to see her again for a year unless his fingernail gets infected or some other change occurs.
When we got home, there was a voicemail from Joann at Dr. Porter’s office. Joann is the donor-recipient coordinator and is the only one on Dr. Porter’s staff who is permitted to know the identity of the bone marrow donors. Her message said that she had a letter from Jeff’s donor and was sorry that she missed us when we were there this morning. We were to call her and let her know whether we wanted the letter faxed or mailed. Jeff and I discussed the quickest way we could get our hands on the letter. I called Joann back but she was gone for the day. I left a voicemail that said, “Jeff would like the letter scanned and emailed so we can have it fast but since that wasn’t one of the options you offered, please fax it to my work and maybe mail it, too, and… Oh, we’re just so excited to get it, we want it in any way, every way.”
As we get closer to Jeff’s 1st birthday, we have been thinking about the donor often. We wondered what we could write to encourage her to complete the paperwork approving contact after the one-year anniversary of the transplant. Now she has written Jeff for the first time! We can hardly wait to see what she has to say! Jeff had heard that the bone marrow registry was originally built with military personnel and prisoners. He joked, “They must be letting the prisoners write now.”
Jeff did something to his back, maybe stepping off the sidewalk onto the driveway at Kerry and Theresa’s but he isn’t sure. He lists a little to his left when he walks; it looks like he has pain with every step. Also, he has noticed that he sweats profusely which is unusual for him. That is due to the water retention caused by the steroids. Between the sweating and his sore back, he looks pretty ragged whenever he exerts a little. The additional meds are causing him to feel fatigued and yet not able to sleep well at night. Through it all, he is a trooper! He remains pretty cheerful and is easy to be around.
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