Day +160
Hey all – Karen here. (Don't worry, Tony is just taking a nap and me typing this up is one less thing for him to do.) Tony's doctor was at a conference and on vacation the past 2 weeks, and we are glad we got to see her today. Over the past week, we have had a lot going on. On Tuesday, Tony had a test to measure the capability of his adrenal glands (long-term steroid use can impede their production), we saw a replacement doc for Doc. S. and we saw an ENT. On Thursday, Tony had a gastrointestinal scope – upper and lower. In the past 2 weeks we have seen 3 docs for his eye.
And today, we were anxious to see Doc. S. to get some answers. A short recap of troubles this past 5 weeks – severe lack of energy, persistent and constant diarrhea, cold-like problems that lesson and strengthen each week, and in the past 2 weeks, the sensation that there is something unwanted in his left eye. I know Tony gave you guys a detailed list last time, but I just wanted to refresh ya'.
Ok, some detailed info on each complaint. Severe lack of energy – back near Memorial Day, Tony was put on a nerve dulling medicine because of the pain and tingling in his hands and feet. We started slow and increased to 3 pills a day around Father's Day. Since then, he has been close to a zombie for energy output. At the same time, he came off of steroids (been on them in some form since September) and Doc. S. made a few other changes in meds. The Diarrhea developed the week of Father's Day. Again, not too much info, but ongoing problem. So, while Doc. S. was on vacation/conference, she ordered the scopes. The concern has been, is this the Graft vs Host rearing its head now that we have backed off on the medicines that control it? The hope has been that the GVHD was under control and the diarrhea was caused by something else. Well, today, Doc. S. had the results of the scopes and it looks like a fair amount of this summer's troubles have their root in Graft vs. Host Disease. :( Even his eye troubles might be laid at the feet of GVHD! As for the Eye, as I said, we've had 3 visits in the last 2 weeks about it and have a follow up again tomorrow. We opted to see a non-Mayo doc for a quicker appointment, and Doc. S. says keep doing that for now, but she really wants us to see a Mayo doctor too.
Now, the plan to deal with this... – you guessed it – steroids. Doc. S. wants to do a burst of steroids over the next 2 weeks. Large doses, reduce every 2 days, until we see her again Mon Aug 6th. Also, we are putting back 2 of the digestion GVHD drugs. Doc. S. is also hopeful that the steroids might aid the eye irritation. But she wants the eye doc tomorrow to do a culture on the mucus in his eye. Maybe it is an antibiotic-resistant type of infection.
Time will tell.
BTW – The deep pain in Tony's legs has faded and is mostly gone. Now the joints in his legs are vaguely uncomfortable – heat helps some. But progress should be recognized, right? :) Right!
Tony is still working 3 – 4 days a week. He drove himself to work 2 weeks ago, then the eye problem kicked in – yippee. We are really trying to get the driving back on track as I return to work next Friday and so the following Monday, Tony will need to get himself to work. If that does not work out, we'll get creative, but we are hoping we won't need to.
Since I have not posted in quite a while- a little general info on how we are holding up. We've been at this a decent amount of time now. Closing in on a year since re-diagnosis. We know we are lucky, we do. Things could be so much worse. A lady who had her transplant a week after Tony, died. She had trouble breathing, was put into an induced coma and a week later, she passed away. Gone. She was not that much older than Tony. So, we recognize that there is cause for positivity and most of the time we aim at that goal. But this summer has been hard. Each time a problem fades, another arises. We feel inundated. So, we really want the changes we start today to be effective. Fingers crossed!
Much Thanks and Love!!
Karen and Tony
