A Small Update
Posted by wendiwendy
Nearly every day, at some point, Dave will turn to me and say, “I really wish I hadn’t done the Hep C treatment.” It has nothing to do with what he put up with during the treatment, the side effects and such. It has nothing to do with the fact that he went through all of that for months, ended up being pulled off the treatment, and still has the Hepatitis C virus. What he means is that he feels it messed with his immune system in a way that nobody predicted, and the aftereffects are lasting longer than he ever imagined.
Back when they first talked about him doing the Hep C treatment, I was very nervous about it because Interferon directly affects the immune system. All of his doctors were in communication, though, and felt that he should have no trouble with it even though he’d had a bone marrow transplant in the past. We did try to search for stories of people who’d had bone marrow transplants and later went through treatment for Hepatitis C, and there just wasn’t anything out there. (That’s part of the reason I’m writing about it here.) In fact, after Dave was off treatment for a couple weeks he did a Google search on that very subject, clicked a link that looked like it was a perfect match to what he wanted to know, started reading and then started to laugh. He’d clicked on one of my blog entries!
Basically, because his bone marrow transplant was so long ago (20 years ago, in fact, on August 13, 1993) the consensus was that he shouldn’t have issues like graft-versus-host disease (GVH or GVHD). Nowadays, people who get the same kind of leukemia Dave had, chronic myeloid leukemia or CML, aren’t generally treated with a bone marrow transplant; there’s a pill they can take instead. So treatment has come a long way. However, so many people just didn’t make it through the treatment back in the early 90s; Dave is a bit of a rarity. That also means that he doesn’t have a large pool of people to draw information from, other patients who’ve gone through the same treatment he did and have survived as long as he did. He’s kind of a lone wolf.
When we first met, it wasn’t even five years past his transplant, and he still dealt with GVH fairly often. As the years have gone by, it pops up less and less. Basically, his body will get symptoms that mimic some other type of disease or condition, but not quite. The doctors will test to make sure, and that can tell them whether he actually has the condition he has symptoms of. That’s when he knows it’s GVH rearing its ugly head. For instance, at one point he had all the symptoms of rheumatoid arthritis, but he didn’t have rheumatoid arthritis. Eventually the symptoms go away or he finds a way to deal with them (cayenne pepper capsules worked, in that case). In the early days, he would take steroids to deal with the GVH.
As I said, his doctors all dismiss him if he feels he has GVH; they say that the transplant was so long ago, he wouldn’t be dealing with that any more. But we’ve found studies that show there definitely is chronic, long-term GVH in bone marrow transplant patients, and it affects their quality of life. And Dave definitely feels that the Hepatitis C treatment, especially the interferon, set off a host (no pun intended) of GVH issues in his body.
His skin is affected – he has itching, random rashes, and a nasty-looking spot on his back that he’s having checked by dermatology in a month. He has neuropathy in his legs, with random twinges and tingling. He has mood swings, issues with anger; he can just generally tell that his mood/emotional health isn’t right. I can’t tell you how many times he’s turned to me and apologized after an especially moody day, with a frustrated, “They really messed me up!”
So that’s where he’s at right now. He’s trying some homeopathic things for his skin (including a fantastic-smelling basil wash) and mood (Rhodiola seems to help). He’ll mention the skin issues at his dermatology appointment, and we’ll see if they dismiss him or not. I think he’s also planning to talk to his GP in October about what he’s been dealing with. I would say that he probably won’t do another Hep C treatment unless it doesn’t involve Interferon, and they can guarantee it won’t mess with his immune system like this.
In other news, Paige has come back to roost so my nest is no longer empty! University life really, really didn’t agree with her; she spent the summer at her dad’s, reasoning that it would be easier to find a job out there, and she did get her very first job in July (at McDonald’s). However, she and her dad have always had a fragile, unsteady relationship and things went south for her out there. She moved back here the day after her birthday, and is looking (and looking and looking) for a job, since she had to quit McDonald’s – it was located in her dad’s town, over an hour north of here.
Her goal is to save money and eventually get her own place, and then do community college – I think that’s wise and much less expensive in the long run! If anyone has employment suggestions for a teen with not much job experience, we’d love to hear them. Ideally we’d like to get her into something like an office job, hopefully full time, which I imagine would be better as far as pay and hours compared to retail or the food industry.
So our house is bustling again, and I like it that way. Yes, we have our challenges, but life would be boring without them!
About wendiwendyThis was my original info in 2008: I'm a newly-deafened adult. I'm still getting used to the sudden silence, and I want to talk in the only manner where I can still hear my voice...in print. Now: I'm a bionic woman and I can hear myself roar!!
Posted on August 25, 2013, in Family, Not Related to Hearing Loss and tagged bone marrow transplant, CML leukemia, graft versus host disease, GVH, health, Hepatitis C treatment, Hepatitis C treatment after bone marrow transplant, interferon effects on immune system, job hunting for teens, medicine. Bookmark the permalink. 2 Comments.