Visit with the pulmonologist
I got in for a follow-up with the pulmonologist yesterday and started with another complete pulmonary function test. The doctor told us my lung function is much better than when he saw me in the hospital over a month ago. My wife said, "yeah, David was really sick back then." The doctor then said, "yes, he was dieing, his lung function was so bad." My wife knew how bad I was in the hospital but I was so out of it that I cannot even remember half of what the doctor had told me. Until recently, I really didn't realize just how serious this bronchial obliterans (BO) is.
So the doctor said I have improved significantly in the past month; however, my lung function is still seriously low. He said I am operating on the capacity of one lung. My air stats are remaining above 90 at rest or slow walk. So he told me I can come off the oxygen when sitting around the house and if exerting myself, such as long walks, hills, stairs, etc., then I need to be back on the oxygen, but at a lower setting than before.
He told us again how the lungs are "stupid" organs that do not respond well to treatment and don't regenerate like other organs do. He advised we contact the Fred Hutchinson where I had the hematopoietic stem cell transplant (HSCT) for a consultation with a lung transplant specialist. He believes the chances of eventually needing a transplant are good and said it is better to be plugged into a system now rather than waiting until the last minute. He told us there is usually a narrow window for a lung transplant between when the lungs are bad enough that a transplant is needed and when the patient is too ill to be able to survive such a procedure.
Seattle Cancer Care Alliance has some interesting information on their website relevant to HSCT recipients with chronic graft versus host disease who are then diagnosed with BO. They state that 30 to 60 percent of HSCT patients develop some kind of lung problems. There is another good article at nature.com that goes into detail the issues of lung problems in relationship with GVHD after HSCT. They say the mortality rate for lung transplant recipients with BO is 61%. And according to Dr. Suckling, our pulmonologist, with BO you are on the clock, with seven years typically being on the optimistic end.
So I am in remission for leukemia but this thing is still trying to beat me down. Although the steroids are making very irritable, cranky, grouchy, and a number of other adjectives my wife tends to use, I am trying my best to maintain a positive attitude and take it one day at a time.
My advice to those of you have had, or are contemplating having, a HSCT, is to make sure when you get home after the procedure, and are being seen by your local doctor, that you are getting pulmonary function tests performed every three months during the first year post-transplant, every six months during the second year, and annually thereafter. If you read the articles I mentioned above then you will find it is very difficult to detect BO until it is severe, which is what has happened to me. Even chest x-rays don't pick it up. I had four of them during the months before I was recently hospitalized and nothing looked abnormal until the chest x-ray done while in the emergency room, which the doctor said the lungs looked elongated, similar to what they might look like if I were asthmatic, which I am not.
Well take care and thanks again for the support and prayers.
David
P.S. If you have anything to share that would benefit other CML or HSCT patients, then please leave your comments via this blog. I often get great emails from people with their own share of GVHD issues, medication side affects, etc. that I think others would love to hear about. So unless your privacy is the concern, please feel free to comment via the blog. I do check them and will respond where needed or requested. Thanks.
