update - appointments from April 16-17

I had my bronchoscopy on Thu. 4/16 and appts. with both my transplant doc and the infectious disease specialist, who has been following me since transplant, specifically my lungs and respiratory issues. We were surprised, but relieved to find out Friday that I have RSV, a respiratory virus, and that it probably explains a number of my current issues, to include shortness of breath, cough, congestion, and constant runny nose, all of which I've had for about 2 months now. This particular virus is actually a fairly common one, especially for babies, but also for kids & adults, though they often pass it off as a cold, as the typical symptoms are similar, and for most people, it goes away in a week or so. However, the I.D. specialist said he was not surprised I have had it this long, as the virus itself is somewhat common in all post-transplant patients, and I have the additional complication of having more immune system suppression than most due to the treatment I am on for the cGVHD. He also said he would not be surprised if it took another month for it to die off or burn out and have all the symptoms disappear. It is really nice to have some hope that so many of these symptoms are explainable, will go away, and that it won't require any other treatment (at least for now)...not even one more pill! If all I've got to do is wait another few weeks for this stuff to disappear, I can do that.

It is possible we will learn more from the bronchoscopy, and I will update again if we do, but the doc who did it said he got a good look and didn't see anything of note, but he did take a biopsy sample that could still show something after testing. For now, I am excited to have some answer to what these issues are and what could be done to get rid of them. My other major complaint is my eyes. The opthamologist continues to say they will heal with time, but were so dry and scratched it may still take another week or two yet. I have started on some new eye drops (3 different drops now - twice a day!) to help with increased tear production- this can be a chronic issue for cGVHD patients.
I also continue to struggle with peripheral neuropathy in my lower legs and feet (nerve pain & numbness). This causes them to be sore quickly and often, makes it hard to balance and walk any distance, and has caused problems with shooting nerve pain, although that has improved in the last week or so. I continue to have weekly IV immune building treatments here in Maine, and do not have to return to Dartmouth for a month - my next appointment is Fri. 5/15.

The teleconference/support group I mentioned last week was immensely helpful, educational, and encouraging, and I am looking forward to the other 3 weekly sessions on Thu. nights. I am also excited about a writing study I have volunteered to be a part of for post-transplant patients, which actually begins the 1st week of May.

You can pray with us that:
1) the virus would burn itself out and symptoms would disappear quickly.
2) we would not get any bad news from the bronchoscopy.
3) my eyes would continue to heal and moisten up, and that the dry eyes would not be or become a chronic problem.
4) my legs, balance, & walking would improve.
5) the phone group would continue to be such a positive experience.
6) the writing study would be enjoyable, helpful, and effective to the researchers.
7) I would continue to practice & develop "patient endurance" as I attempt to "hold up this rock" that God has called me to.

We continue to covet your love, prayers, & encouragement as we long for some relief during such a long, difficult journey.