I wanted to squeeze in one more update in July. U of M Hospitals continue to impress me. Tuesday's visit was with an oral surgeon in the main hospital. Actually two oral surgeons---very thorough, caring, and professional--spent almost two hours with us. Ron is now a patient in U of M Hospital Denistry. A group decision was made that it is too aggressive at this point to extract all teeth, so we return in two weeks to decide a course of action-- which teeth now, partial dentures, etc. Ron needs to make some lifestyle changes regarding candy bars and gummy bears. I also must make continual reminders regarding brushing. I learned a lot about dentures in a short time.
Regarding Ron's behavioral changes, he is less agitated and frustrated after being off one of his meds for 6 days. That is an encouraging sign that there could be more improvement. During the next two weeks I will log issues to see if time of day is a factor, and he is not allowed to resume driving. When we see Dr. Mag in two weeks, this discussion will continue. The next test would be an MRI. Chronic graft versus host disease is a challenging result of his transplant which has kept him leukemia-free. GVHD affects his lungs, skin, eyes and liver, and treatment for it has compromised his immunity. Overall, his bloodwork continues to be very good in the BMT world. By no means easy, but coping.
Wednesday, July 31, 2013
Friday, July 26, 2013
Bump in the Road
I have been thinking about this blog entry for a few days now. We are in a rough spot again. Ron has shown an increasing pattern of confusion over the last several weeks. I think I was in denial for awhile...just thinking he was "off" for some unknown reason [which is still unknown] and that his physical progress had stalled, but now it is evident that Ron has lost ground mentally and physically. He has fallen twice in July, and he has had personality changes as well as cognitive issues. He had a CT scan on Wednesday, and it did not show evidence that would be related to these new problems.
At this point, the doc has stopped one of his medications to see if it is the culprit, and he will probably be scheduled for a full neurological evaluation. We travel to Ann Arbor this week, and we will have the opportunity to discuss these new issues with his doc. I don't know if this will impact his oral surgery. I don't know what to expect in the weeks to come. His confusion causes frustration and anger, but a lot of the time he doesn't seem to be any different than he had been. Bump in the road.
At this point, the doc has stopped one of his medications to see if it is the culprit, and he will probably be scheduled for a full neurological evaluation. We travel to Ann Arbor this week, and we will have the opportunity to discuss these new issues with his doc. I don't know if this will impact his oral surgery. I don't know what to expect in the weeks to come. His confusion causes frustration and anger, but a lot of the time he doesn't seem to be any different than he had been. Bump in the road.
Wednesday, July 17, 2013
A Boost in Immunity & the Donor's Country Revealed!
Ron had his infusion of antibodies yesterday to help boost his immunity. (IVIG). We were at the BMT Infusion area in the adult BMT Clinic from 11:00-5:00. It is worth it to have some insurance against infection. We are in Ann Arbor for his ECP light therapy treatments too. His immunity level is measured by a blood test that is frequently ordered at the same time his bi-weekly blood tests are drawn. The infusion of antibodies is now following a pattern of "too low IGG" every two months. This could recover somewhat as his other products of his new bone marrow have. I keep an eye on the trends of various blood tests through a U of M patient portal online. Ron's appointment schedule and messages between the doc and me are two other ways we use the portal.
Ron will see an oral surgeon here at U of M on July 30. He will be evaluated, and decisions will be made regarding the extraction of his teeth and dentures. All of the chemo and other drugs have ruined his teeth. His regular dentist said it would be a pointless drain of time and money to continue to repair his teeth. There is always the concern regarding any type of infection.
We have found out that Ron's donor is from Sweden!! We have the paperwork to submit for exchange of information if the donor is interested. Contact can be made if both parties agree and on varying degrees of release of information to each other. We were so sure that we had it figured out that the donor was from Germany. I think our first step might be to give him the blog address. In spite of all of Ron's complications, he has never said that he wishes he hadn't had the transplant...just the opposite, we both remain so grateful to the donor. He was only one of 3 matches in the world wide registry. There were no matches in the United States. After googling Bone Marrow Transplant and Sweden, I have been reading about Stockholm Care and the Tobias Registry. Their registry was initiated in 1992. When I returned to Ron's infusion room to tell him about Sweden, he had candy out for a snack. I thought it was red Swedish fish at first glance!! Upon looking more closely, it was red gummy dinosaurs; now that would have been just too weird!
Ron will see an oral surgeon here at U of M on July 30. He will be evaluated, and decisions will be made regarding the extraction of his teeth and dentures. All of the chemo and other drugs have ruined his teeth. His regular dentist said it would be a pointless drain of time and money to continue to repair his teeth. There is always the concern regarding any type of infection.
We have found out that Ron's donor is from Sweden!! We have the paperwork to submit for exchange of information if the donor is interested. Contact can be made if both parties agree and on varying degrees of release of information to each other. We were so sure that we had it figured out that the donor was from Germany. I think our first step might be to give him the blog address. In spite of all of Ron's complications, he has never said that he wishes he hadn't had the transplant...just the opposite, we both remain so grateful to the donor. He was only one of 3 matches in the world wide registry. There were no matches in the United States. After googling Bone Marrow Transplant and Sweden, I have been reading about Stockholm Care and the Tobias Registry. Their registry was initiated in 1992. When I returned to Ron's infusion room to tell him about Sweden, he had candy out for a snack. I thought it was red Swedish fish at first glance!! Upon looking more closely, it was red gummy dinosaurs; now that would have been just too weird!
Wednesday, July 3, 2013
Two Scheduled Days in AA
Ron's appointments in Ann Arbor continue to go well. We will see his transplant doctor before leaving today, so we have spent time on 7th floor, 8th floor, and are now waiting on 7th floor again. The doc is over scheduled after being home for two weeks with a new baby! I have a new toy. We bought a MacBook and have also updated our IPad, so we move ahead technology-wise too.
We have also downloaded an app called Viber on my phone which allows me to text and call Andy and Lisa at no charge. They are now living in Germany and have found out that they will be moving into on-post housing in August. Great news for them!! With our updated 4G hotspot and new MacBook, I hope we will be able to Skype successfully. Our feed in the past was inadequate for holding a reception on the old computer.
We spend the 4th at Wall Lake at my sister's for a family gathering. Her 3 daughters and families will all be there. Kate, the kids, Niccole and Cole will be with us, too. My brother and his extended family will be there too, so it will be good food, good times, and the weather should cooperate as well. We travel to BG for a "4th of July" gathering on the 6th with Cale, Jess, grandkids, and Jess's family. We should be pooped by Sunday. Ha!
Matt continues to work on an investigation which has taken him to Ft. Bragg, Quantico, California,and Afghanistan. He is back in the States but has not been able to come to Michigan yet.
...still waiting on the doc
Love,
Ron & Jan
We have also downloaded an app called Viber on my phone which allows me to text and call Andy and Lisa at no charge. They are now living in Germany and have found out that they will be moving into on-post housing in August. Great news for them!! With our updated 4G hotspot and new MacBook, I hope we will be able to Skype successfully. Our feed in the past was inadequate for holding a reception on the old computer.
We spend the 4th at Wall Lake at my sister's for a family gathering. Her 3 daughters and families will all be there. Kate, the kids, Niccole and Cole will be with us, too. My brother and his extended family will be there too, so it will be good food, good times, and the weather should cooperate as well. We travel to BG for a "4th of July" gathering on the 6th with Cale, Jess, grandkids, and Jess's family. We should be pooped by Sunday. Ha!
Matt continues to work on an investigation which has taken him to Ft. Bragg, Quantico, California,and Afghanistan. He is back in the States but has not been able to come to Michigan yet.
...still waiting on the doc
Love,
Ron & Jan
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