Day 43
It's been a busy few days, which fortunately have been pretty good ones for John. He was able to walk with her for about a mile, including climbing the Queen Anne hill which is no molehill. John has been working on his web comics again and seems to have more energy, though it is probably due to the steroids as much as anything.
We started the Prednisone "taper" or phasing out process over the past few days. Although John has a list of minor ailments, he doesn't seem to show any return to rejection issues at this point. They have started him on magnesium pills, as in "Milk of Magnesia", which have caused some digestive problems. Still, he is eating well. He still receives 1.5 liters of fluid by IV each night and our refrigerator has a shelf reserved for all the bags we have delivered. We both count out the dozens of ever-changing pills he takes each day. They say his numbers are fairly small because he doesn't have things like heart or other preexisting problems to treat.
My Dad and stepmom are visiting for several days. It is nice to be able to spend time with them. Debbie and I drove with them on Saturday to Paradise at Mount Ranier for the day, which is an old lodge on the tree line in the shadow of the mountain. It is built among the fragile high meadows that take over in places above 5000 feet, and, yes, they did actually pave a part of Paradise to put up a parking lot.
Because Courtney stayed with John, we were able to be gone for pretty much the entire day, which is a first for me in a long time. We were out of cell phone range for part of the time, and it took some adjustment on my part not to worry too much. As it ws, John did fine without me, which shouold be no surprise to anyone but me.
Debbie is back in Atlanta for a week or so. When she returns, I will go back to Atlanta for a week to spend some time back in the office - the first time since early April. I am able to put in some long days working here by phone and email, starting about 5 A.M. and quitting about 6 P.M. with time out for doctors and such during the day. Although I've tried hard to make up the difference that 3000 miles makes, I know it's not the same and am thankful for the tolerance everyone at the office has shown.
Today, we meet John's new doctor for the next month, which we are looking forward to. John's confidence has been affected, and perhaps his physical recovery, by the behavior of the one he was assigned since his release from the hospital. It is a shame that a doctor as inattentive as this one could be a part of a place that is deemed as good as this one.
That reminds me. We learned Friday that John's bone marrow biopsy came back with excellent results - good engraftment and no signs of relapse. I'm reminded because we asked the doctor about the results Friday and he hadn't bothered to read them himself. I'm disappointed that my efforts to bring all this to the attention of the center have met with so little response. Patients are least able to fend for themselves in a medical beaurocracy and it is a shame that a caregiver also has to be an advocate with the organization meant to be dedicated to his care. With one exception, every medical person here has been truly excellent. I have yet to find, however, a medical organization that practices the basic management tools of monitoring and managing "customer" care. Receiving a survey after release is no substitute for such things, because too many who have been failed are not able to respond.
That's enough of that. There is more to do today than time to accomplish it.
We started the Prednisone "taper" or phasing out process over the past few days. Although John has a list of minor ailments, he doesn't seem to show any return to rejection issues at this point. They have started him on magnesium pills, as in "Milk of Magnesia", which have caused some digestive problems. Still, he is eating well. He still receives 1.5 liters of fluid by IV each night and our refrigerator has a shelf reserved for all the bags we have delivered. We both count out the dozens of ever-changing pills he takes each day. They say his numbers are fairly small because he doesn't have things like heart or other preexisting problems to treat.
My Dad and stepmom are visiting for several days. It is nice to be able to spend time with them. Debbie and I drove with them on Saturday to Paradise at Mount Ranier for the day, which is an old lodge on the tree line in the shadow of the mountain. It is built among the fragile high meadows that take over in places above 5000 feet, and, yes, they did actually pave a part of Paradise to put up a parking lot.
Because Courtney stayed with John, we were able to be gone for pretty much the entire day, which is a first for me in a long time. We were out of cell phone range for part of the time, and it took some adjustment on my part not to worry too much. As it ws, John did fine without me, which shouold be no surprise to anyone but me.
Debbie is back in Atlanta for a week or so. When she returns, I will go back to Atlanta for a week to spend some time back in the office - the first time since early April. I am able to put in some long days working here by phone and email, starting about 5 A.M. and quitting about 6 P.M. with time out for doctors and such during the day. Although I've tried hard to make up the difference that 3000 miles makes, I know it's not the same and am thankful for the tolerance everyone at the office has shown.
Today, we meet John's new doctor for the next month, which we are looking forward to. John's confidence has been affected, and perhaps his physical recovery, by the behavior of the one he was assigned since his release from the hospital. It is a shame that a doctor as inattentive as this one could be a part of a place that is deemed as good as this one.
That reminds me. We learned Friday that John's bone marrow biopsy came back with excellent results - good engraftment and no signs of relapse. I'm reminded because we asked the doctor about the results Friday and he hadn't bothered to read them himself. I'm disappointed that my efforts to bring all this to the attention of the center have met with so little response. Patients are least able to fend for themselves in a medical beaurocracy and it is a shame that a caregiver also has to be an advocate with the organization meant to be dedicated to his care. With one exception, every medical person here has been truly excellent. I have yet to find, however, a medical organization that practices the basic management tools of monitoring and managing "customer" care. Receiving a survey after release is no substitute for such things, because too many who have been failed are not able to respond.
That's enough of that. There is more to do today than time to accomplish it.
