Lung GVHD by Any Other Name

As I’ve tweeted in the past, I’ve contracted both acute and chronic Lung Graft Versus Host Disease as a result of my April 2010, Bone Marrow Transplant. For clarity’s sake, or perhaps to confuse things even more, I think it is important to be more specific in naming my lung disease. In my lab reports and in discussions with my doctors, in addition to Lung GVHD, it is referred to by several different names: Chronic Bronchiolitis; Constrictive Bronchiolitis; Focal Follicular Bronchitis/Bronchiolitis; but the name I will refer to it as is Bronchiolitis Obliterans, or BO. According to the doctors, it is the most correct name, and, most importantly to me, it’s the most fun to say.

Say it: Bronchiolitis Obliterans.

Wasn’t that fun?

I am not going to attempt to explain the disease in detail; however, what I will briefly say about it is that it a non-reversible, degenerative lung disease that compresses and scars the bronchioles which blocks, or obliterates, the airways. Unfortunately, there currently is no cure for the disease, but it can be treated with a high-dosage, anti-inflammatory steroid regiment.

I was also diagnosed with Acute Lung GVHD. Another name for this is Lymphocytic Bronchiolitis. Not quite as much fun to say as the other one is it? I have been on a steroid regiment since the end of October 2010, and the good news is I have positively responded to the treatment. My acute symptoms lessened as soon as I began taking the drugs. What a relief it was. Those who saw me prior to me starting the treatment can testify what a pitiful state I was in. In addition to the Lung GVHD, I also had skin, mouth, and lower GI GVHD. The steroids is taking care of them as well and now I have put on close to twenty pounds and I am getting stronger and stronger through stair climbing exercises and weight training.

Of course I still have the Chronic GVHD, or Bronchiolitis Obliterans, and always will; however, because I have responded so well to the acute conditions of the GVHD, the hope is that the steroid treatment will be able to at least stabilize my chronic condition and prevent or postpone for as long as possible, any further degradation.

Yesterday during a checkup with my GVHD doctor, I learned that I will probably be on the steroid treatment for the rest of my life. Not cool because the side effects are horrible; but, like I often have said about all the crap I put up with during the leukemia fight—it’s better than the alternative. I also learned that I will probably never again be able to return to work, or to a normal, vigorous lifestyle like I used to live. I don’t yet know what to say about this–I’m still processing the news.

I do know that exercise and a healthy diet is going to more critical to me now than ever before in my life. I need to continually strengthen and condition my heart and body so that it becomes as efficient and as effective as possible with limited and possibly lessening quantities of oxygen.

Bronchiolitis Obliterans.

At least it’s still fun to say.

After the Transplant

Thinking back, the amount and potency of the chemotherapy that I received during phase one and phase two of my treatment were a pittance compared to what I received for my bone marrow transplant. During the first two phases I thought to myself, ha, this chemo stuff ain’t living up to all the hype. Sure, I lost my hair but it started growing back not too long after the end of each phase. And I never got so sick to where I had to become intimate with the toilet. Not so during the two weeks of chemo treatment before and after the transplant. The doctors really laid it on me with a vengeance then. I got pretty darn sick, especially in the mornings. It’s almost three months later and I would even say that I may still be suffering somewhat from the effects of the chemo I received prior to and after the transplant. And it doesn’t help any that I’m still getting a small dose of it shot into my spine every two weeks.

While I don’t get sick to where I have to pay homage to the toilet anymore, I do get some bad heartburn for a couple of days after the spinal taps. I also still get light-headed when I stand up and, because of my low energy levels, I can only contribute minimally to chores around the house. My counts are steadily rising to normal but they are all not there yet. My platelets are still low which makes it very easy for my skin to cut and bruise and very hard for the injuries to heal. I’m still anemic. It seems that I have a symptom of Graft Versus Host Disease (GVHD) in my mouth: it is almost completely dry all the time, which makes it hard to eat and sleep, and there are tiny bumps all over my cheeks and gums, which feel gross. I have poor circulation and swelling in my legs, especially my left leg. This is probably because the blood clots that I had at the beginning of all this were in my left calf and have left the veins and arteries a little worse for wear. The toes on my left foot are numb. My vision frequently blurs. And, I’m still mostly hairless which is really starting to annoy me; although some peach fuzz is starting to sprout about the chin.

Considering how bad I felt immediately after the transplant, all that I described above is almost irrelevant. I actually feel pretty darn good and I am very thankful for how well I am progressing and all of the support I am receiving. My days are always light and relaxing. I mostly divide my time between reading (my reading list is found at the bottom of this blog), cruising the Internet, taking naps, sitting by the pool, and watching the boob tube. I try to take long walks every other day or so. Fortunately I live out in the country so when I walk I get to experience the beauty of nature. I get to see wildflowers and woods and ponds and creeks and cows and horses and sheep and goats and all kinds of birds (if I’m lucky I’ll get to see majestic cranes either walking the creeks or flying above the tree line) and friendly folks along the way. My dog Shikibu, the best and cutest dog in the world, often joins me on my walks and she always makes them even more interesting and enjoyable. But probably the best part of my day is when, after the sun begins to set and the temperature cools down, my wife and I hop in the hot tub and spend quality time soaking, reflecting on our good fortune, and planning for our long future together.