January 31, 2010
2/15/2010 11:25 PM
Bottom line came today. Coumadin forever, oxygen for at least 6 months, no physical exertion lest we release a clot, a plan to decrease the prednisone to 0 very very slowly and a lung check-up back at Mayo in June. To tell you the truth we would come every month if they wanted me to.
It has been a long haul but now there is an explanation for the 30% utilization of my lungs. The blood clots in both legs traveled to my lungs which were already pretty full of clots on their own. Add the new ones and the oxygen which has been trying to get into my bloodstream had absolutely no place to go so pretty much no lung/breathing capacity. The oxygen 24/7 is an aid but not a fix.
The fix is heparin and coumadin in combination until we get an INR of 2-3. Mine since we found the problem and have been measuring is 1. They think it will take the better part of another week for this to happen.
Patience is a virtue they tell me. Walter and I were almost running out but then they came up with the solution and we are energized again.
Meanwhile we are on a plan to decrease my prednisone to 0 over a course of 12 weeks. i took a course to learn how to adjust my insulin to the decrease. A little tricky but not impossible to do.
I was looking forward to exercising as part of the diabetes weight loss program but not to be because of the risk of releasing a clot. I will be allowed however to spend 15 minutes a day in the pool doing mild water aerobics. Better than nothing.
We are making tentative arrangements (car, oxygen) to leave for home sometime in the next week or so. we will be driving. just easier than the hassle with the airlines over oxygen and the hassle of having the oxygen people meet the plane in Naples so we can get home safely.
As always we are so very grateful for all the good wishes, prayers and mishaberachs. It makes making the effort to make it one more day worth it when we hear from all you loves. can't wait to get back home and see everyone.
Other than loving the MN weather we will be eternally grateful we came. As we have said before the treatment , care, concern and tenaciousness at Mayo we don't think can be matched anywhere else. They told us no discharge until we have found and treated the problem and they meant it.
The only thing the doctors here are a little unhappy about is that they can't find a reason for the clots to have started in the first place. i should have some weird numbers on some tests i took and they are just not there. we are perfectly OK with that. and we told them we love them anyway. As we do all of you.
Good night and we'll let you know when we start for home.
love, Judy and Walter
Posted by jaselin at January 31, 2010 07:59 AM