Monday, June 10, 2013

A little more of that

Last Wednesday marked yet another three-month follow-up visit at MD Anderson. This time around I had my patient loyalty card punched in the stemcell clinic. It should have been a routine visit full of all the routine things you get to do post bone marrow transplant. Mostly, it was.

My blood counts were excellent, with nearly everything in the very normal range. 

My breathing, however, is not so good. Ever since my initial diagnosis of GvHD in the lungs, I've had a small amount of trouble breathing. High humidity makes it hard to breathe. Allergies make it hard to breath. Extremes in temperature equal breathing torture. Up until a few weeks ago, it was a small thing that I'd grown used to. Roughly three weeks ago, I noticed that climbing stairs would leave me winded. I thought it had something to do with the humidity. When the breathlessness started occurring on a regular basis after climbing the stairs at work, I realized that the GvHD in my lungs was trying to make a comeback. The very last thing I want is a little more of that.

My lungs are filled with scar tissue from the last time I had GvHD there. It gets better, but it doesn't go away. I had a routine pulmonary function test in March. It was almost normal, which is a very long way from the 50% lung capacity I was lurching around with in 2010.

Dr. K. ordered a PFT for me after I saw her Wednesday. I got the results a few hours later while I was on the road home. Diminished lung function. GvHD. I was told to resume the steroid inhaler I set aside three months ago.

If I'm lucky, the GvHD will respond and I will have shown an improvement by my next visit with Dr. K. in September. The last thing I want to do is go back on high-dose oral steroids. It's likely what will happen, though. 

I'm also displaying signs of chronic GvHD on my hands. All of my fingertips are torn and cracking. No amount of moisturizer helps. 

My next visit to MDA is scheduled for July. Go figure, it's another three-month follow-up. The Head and Neck center own my dance card that day.

7 comments:

LPC said...

So happy that at least the blood counts are good. Crossing my fingers for ease in the breathing.

Judy said...

Ann, I had no idea you are still dealing with this stuff. I guess GVHD just doesn't disappear completely. Please focus on the leukemia being gone. I hope for you that you will get relief and easier breathing. John just celebrated seven yrs. post his transplant. It never leaves your mind though and I'm sorry your body is still feeling the effects. Love, Judy

Katherine C. James said...

Excellent blood counts are wonderful news. I join Lisa in crossing my fingers for ease in your breathing.

It's been awhile since I've been on your blog because my life has preoccupied me for a variety of reasons. I'm reminded of your intelligent grace under ridiculously difficult circumstances.

You remind me of what matters.

Sending love.

John said...

Praying that the doctors can do something to stop the shortness of breath from getting worse and to help improve your lung functioning.

lisa adams said...

Thank you for the update. I am sorry that these effects will plague you in varying degrees for the rest of your life. It just plain sucks and there's no silver lining in it... what could be harder than having trouble breathing?

I send my love, as always.
lisa

Ronni Gordon said...

Great news on the blood counts. Hope the inhaler helps soon and your breathing returns to normal in no time. Maybe then you can wean yourself.

PJ said...

Ann, I had the same problem with my hands. It was in the winter so I wore those gloves without the tops. You can get silk gloves for general wear. I have an old pair I though I'd have to use but my hands cleared up using a salacytic acid cream (an rx). Definitely sounds like skin gvh. I'll call soon.