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.
Tuesday, April 21, 2009
Monday, April 6, 2009
update - appointments from April 2-3
I was back down at Dartmouth for more checkups and some tests this past Thu. & Fri. April 2-3, and thought I'd give an update. It was a busy week, and I ended up being at a hospital or doctor every day last week - Monday was blood work here in Maine, Tue. night was another ER visit for my eye, followed Wed. by my weekly IV treatment and an eye dr. appt. here in Brunswick, then left right from there to get down to NH, where Thu. & Fri. were at Dartmouth. No wonder I was so beat this weekend!
Thu. was the eye doc at Dartmouth, and he said I may have developed a reaction tot he antibiotic eye drops while I was finishing the course with them, but in any case, my eye had gotten all dry and gritty, and both eyes were scratched and damaged - The right one is just slightly scratched and the vision out of it is not affected too much, but the left one was severely scratched and I could barely see out of it. I have stopped the eye medication, and was told to use lubricating drops and gel as often as neccesary for comfort. He said it could take a couple of weeks for the vision to return to normal, and until then I can't drive, and have had difficulty watching TV, being on the computer, or even reading, though it has improved somewhat yesterday and today. It is possible that this new dryness in the eye is a symptom of the chronic GVHD, but only time will tell. If it goes away, it as likely a reaction to the medication, but if not, it is likely another symptom of the cGVHD.
Fri. began with both a chest CT and a CT of my sinuses, to attempt to find the cause of my recent increase in breathing difficulty, and my persistent cough and consant runny nose. Both tests were clear, and a lung function test later on Fri. showed similar lung capacity to previous tests, but a 15-20% decrease in how much I can put out. I also had a swallowing study done on Fri., where you stand against an X-ray table, drink a bunch of barium of different thicknesses while they take pictures and watch the liquid flow down inside you. It was pretty cool to watch while it was being done, but having to do it on an empty stomach was not fun, as the barium tastes awful, I had to drink over a quart of it total, and it really rips up your stomach later on! They ended the swallowing study by watching me swallow a pill, which got stuck and was good they were able to see. The end result was that there really is no constriction in the throat that they can see, and the muscle movement in the esophagus is good. So, I don't know a whole lot more than I did before, though they have ruled some major things out. My feet have gotten really sore, sensitive, and have begun to hurt walking even short distances, most likely from increased neuropathy caused by the high doses of immune suppresants I am now taking for the cGVHD. They have started me on another pill that usually helps with this type of nerve pain, and said it will take a few weeks to notice a real difference, but that it most often helps things at least somewhat.
The next step will be to return to Dartmouth the end of next week, either Thu. April 16 or Fri. April 17 for a bronchoscopy, where they will put a scope down my throat to actually look into both my esophagus and my lungs to see if there are any problems there that might not be evident on the X-ray from the swallowing study. IN the meantime, it seems my mouth sores are waxing and waning, going away and then coming back in different places. Either the pain from them has subsided, or I have gotten used to it, as they don't bother me as much as before, as I am able to eat more than I was used to.
At my appointment with my transplant doc, we had a good discussion about the seriousness of GVHD and the importance of being vigilant in watching & managing the symptoms. He told me that in cases like mine, there is a 5 year mortality rate of 15-20% just from GVHD, even if cancer is no longer a part of the picture. This was new information to me, and was bit unsettling, but it's just another thing I will have to adjust to and trust God to lead the way through it. In order to learn more and be able to manage life better, I hope to be a part of a 4 week teleconference I have found for newly diagnosed GVHD patients, which starts next Thu. night April 16 and runs for 4 weeks.
For now, you best pray for the following:
1) eyes - relief from pain & itching, restoration of my vision.
2) breathing - return to normal breathing or some meaningful result from next week's scope procedure.
3) feet & legs - relief from nerve pain and return of my normal ability to walk.
4) general endurance & patience with this new diagnosis and situation I find myself in. It really is a new chapter in my "unexpected journey".
5) the teleconference I mentioned above will be beneficial and will help me recognize and mange things better.
We continue to covet your prayers, love, & support through this journey, and appreciate the notes, emails, and practical expressions of help that continue to come our way.
Thu. was the eye doc at Dartmouth, and he said I may have developed a reaction tot he antibiotic eye drops while I was finishing the course with them, but in any case, my eye had gotten all dry and gritty, and both eyes were scratched and damaged - The right one is just slightly scratched and the vision out of it is not affected too much, but the left one was severely scratched and I could barely see out of it. I have stopped the eye medication, and was told to use lubricating drops and gel as often as neccesary for comfort. He said it could take a couple of weeks for the vision to return to normal, and until then I can't drive, and have had difficulty watching TV, being on the computer, or even reading, though it has improved somewhat yesterday and today. It is possible that this new dryness in the eye is a symptom of the chronic GVHD, but only time will tell. If it goes away, it as likely a reaction to the medication, but if not, it is likely another symptom of the cGVHD.
Fri. began with both a chest CT and a CT of my sinuses, to attempt to find the cause of my recent increase in breathing difficulty, and my persistent cough and consant runny nose. Both tests were clear, and a lung function test later on Fri. showed similar lung capacity to previous tests, but a 15-20% decrease in how much I can put out. I also had a swallowing study done on Fri., where you stand against an X-ray table, drink a bunch of barium of different thicknesses while they take pictures and watch the liquid flow down inside you. It was pretty cool to watch while it was being done, but having to do it on an empty stomach was not fun, as the barium tastes awful, I had to drink over a quart of it total, and it really rips up your stomach later on! They ended the swallowing study by watching me swallow a pill, which got stuck and was good they were able to see. The end result was that there really is no constriction in the throat that they can see, and the muscle movement in the esophagus is good. So, I don't know a whole lot more than I did before, though they have ruled some major things out. My feet have gotten really sore, sensitive, and have begun to hurt walking even short distances, most likely from increased neuropathy caused by the high doses of immune suppresants I am now taking for the cGVHD. They have started me on another pill that usually helps with this type of nerve pain, and said it will take a few weeks to notice a real difference, but that it most often helps things at least somewhat.
The next step will be to return to Dartmouth the end of next week, either Thu. April 16 or Fri. April 17 for a bronchoscopy, where they will put a scope down my throat to actually look into both my esophagus and my lungs to see if there are any problems there that might not be evident on the X-ray from the swallowing study. IN the meantime, it seems my mouth sores are waxing and waning, going away and then coming back in different places. Either the pain from them has subsided, or I have gotten used to it, as they don't bother me as much as before, as I am able to eat more than I was used to.
At my appointment with my transplant doc, we had a good discussion about the seriousness of GVHD and the importance of being vigilant in watching & managing the symptoms. He told me that in cases like mine, there is a 5 year mortality rate of 15-20% just from GVHD, even if cancer is no longer a part of the picture. This was new information to me, and was bit unsettling, but it's just another thing I will have to adjust to and trust God to lead the way through it. In order to learn more and be able to manage life better, I hope to be a part of a 4 week teleconference I have found for newly diagnosed GVHD patients, which starts next Thu. night April 16 and runs for 4 weeks.
For now, you best pray for the following:
1) eyes - relief from pain & itching, restoration of my vision.
2) breathing - return to normal breathing or some meaningful result from next week's scope procedure.
3) feet & legs - relief from nerve pain and return of my normal ability to walk.
4) general endurance & patience with this new diagnosis and situation I find myself in. It really is a new chapter in my "unexpected journey".
5) the teleconference I mentioned above will be beneficial and will help me recognize and mange things better.
We continue to covet your prayers, love, & support through this journey, and appreciate the notes, emails, and practical expressions of help that continue to come our way.
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