We have traveled to our Michigan home. Weather permitting, we will remain here for a few weeks. If Winter decides to arrive, we will head back to Bowling Green. Both of us are looking forward to watching the Super Bowl with my sister and brother-in-law, Anne and George.
We are halfway through a series of appointments for Ron at Ann Arbor. Last week he had his two extracorporeal phtopheresis treatments. ECP. He is "graduating" to 6 weeks between treatments--from 4 weeks, so the next ECP is mid-March. This upcoming week Ron will see a new pulmonary specialist at U of M Hospital. He will also have full pulmonary testing. Seeing a new doctor is quite a process. I feel like it would take a book to explain what all Ron has experienced medically since 2010. It is a real practice in summarizing! Ron's lungs are his biggest problem. He takes singulair, 3 antibiotics, an antifungal, an antiviral, and 3 different inhalers to help him avoid lung infection. The other component of his medical immune system is an immunity infusion every 5-6 weeks. He will have an IVIG Tuesday. This infusion takes about 4 hours, and the antibodies that he receives have been donated from over 1000 donors. Team Hover is immense!!
I have emailed Ron's donor who is from Sweden, and also I sent pictures. I don't know if he speaks English! If he replies, I will write a special blog entry.
Love, Ron & Jan
Sunday, February 7, 2016
Tuesday, January 26, 2016
Happy New Year 2016!
I have been remiss in writing blog entries and have a number of excuses. Something about turning the calendar to a new year was more troubling for me. It all started with thinking "I will turn 70 years old in 2016." I think I have come to grips with that thought. 50 and 60 did not affect me that way, but I remember that 40 did! In 1976 when I turned 30, I had just learned that I was pregnant with twins. What is there about entering a new decade?! Ron will turn 68 this year. Also, there is a bit of a letdown after the busyness of holiday preparations and celebrations in November and December. (Even though I am happy, too; they're over! As Andy used to say, one of those happy-sad things)
Oh, wait, this blog is about Ron's updates. So where are we, medically speaking? Things are mostly stable in many ways. Ron's medications have not changed for about a year. His medications can prevent most infections...3 different antibiotics, antiviral, and antifungal. We are transitioning to immunity infusions every 6 weeks instead of every month. He also has several meds to treat symptoms that result from lung damage and skin changes. His daily steroid, prednisone, has caused diabetes, and Ron still has his central line, a 3-lumen Neostar, which must be cared for daily. It is used when he has his treatments at U of M. In March, he will be tapered to 2 treatments at 6 week intervals, instead of monthly which has been the routine the last 6 months. In January of 2013, his treatments started with 2 treatments every week (For 3 months), then every other week for 18 months, then every third week, every month, and now progressing to every 6 weeks. Ron has now had 131 treatments total. These treatments alter the T cells in his blood, so they are not so aggressive in attacking his body.
The biggest worry is pneumonia or a fall. Ron was hospitalized with pneumonia twice during the summer. Because his regular antibiotics do not cover the more resistant bacteria, he is then treated intravenously with the big guns antibiotics. Ron was scheduled in June (but then he had pneumonia) to have oral surgery to clean up his mouth. All but one of his teeth are broken off at the gum line. He does not have pain, and all the antibiotics he takes prevent an infection. The changes in his mouth are a result of graft versus host disease, and he most likely wouldn't be able to have dentures. His mouth tissues are fragile. There is no plan at this time to reschedule that surgery. I don't know if I am up to the insurance fight that would inevitably happen. Our insurance has been amazing, but dental surgery is not covered.
Ron's physical limitations have declined very slowly this past year unless he is sick. He must use his walker, a shopping cart, or the wheelchair when we are out. Due to shortness of breath and deconditioning, he needs to sit and rest frequently. He does not yet qualify to have oxygen at home. I admire how he gets on his stationary bike once or twice a week. Ron does have limitations cognitively. He is very disorganized and cannot problem solve some everyday tasks. He no longer reads books and magazines but does check the TV schedule of sports in the morning newspaper. None of these things are new developments in the past year, so I do feel like we are in a routine in many ways. Actually, I think that was part of what I had to work through this month. In January you somewhat look ahead to the whole year, and when I did that, another year of caregiving and "the unknown" regarding Ron felt daunting. A whole year was a way too big chunk of time to think about. I had to adjust my thinking! Doing okay.
Oh, wait, this blog is about Ron's updates. So where are we, medically speaking? Things are mostly stable in many ways. Ron's medications have not changed for about a year. His medications can prevent most infections...3 different antibiotics, antiviral, and antifungal. We are transitioning to immunity infusions every 6 weeks instead of every month. He also has several meds to treat symptoms that result from lung damage and skin changes. His daily steroid, prednisone, has caused diabetes, and Ron still has his central line, a 3-lumen Neostar, which must be cared for daily. It is used when he has his treatments at U of M. In March, he will be tapered to 2 treatments at 6 week intervals, instead of monthly which has been the routine the last 6 months. In January of 2013, his treatments started with 2 treatments every week (For 3 months), then every other week for 18 months, then every third week, every month, and now progressing to every 6 weeks. Ron has now had 131 treatments total. These treatments alter the T cells in his blood, so they are not so aggressive in attacking his body.
The biggest worry is pneumonia or a fall. Ron was hospitalized with pneumonia twice during the summer. Because his regular antibiotics do not cover the more resistant bacteria, he is then treated intravenously with the big guns antibiotics. Ron was scheduled in June (but then he had pneumonia) to have oral surgery to clean up his mouth. All but one of his teeth are broken off at the gum line. He does not have pain, and all the antibiotics he takes prevent an infection. The changes in his mouth are a result of graft versus host disease, and he most likely wouldn't be able to have dentures. His mouth tissues are fragile. There is no plan at this time to reschedule that surgery. I don't know if I am up to the insurance fight that would inevitably happen. Our insurance has been amazing, but dental surgery is not covered.
Ron's physical limitations have declined very slowly this past year unless he is sick. He must use his walker, a shopping cart, or the wheelchair when we are out. Due to shortness of breath and deconditioning, he needs to sit and rest frequently. He does not yet qualify to have oxygen at home. I admire how he gets on his stationary bike once or twice a week. Ron does have limitations cognitively. He is very disorganized and cannot problem solve some everyday tasks. He no longer reads books and magazines but does check the TV schedule of sports in the morning newspaper. None of these things are new developments in the past year, so I do feel like we are in a routine in many ways. Actually, I think that was part of what I had to work through this month. In January you somewhat look ahead to the whole year, and when I did that, another year of caregiving and "the unknown" regarding Ron felt daunting. A whole year was a way too big chunk of time to think about. I had to adjust my thinking! Doing okay.
Thursday, December 24, 2015
The Gift of Stem Cells
After more than 4 years of recovery time, Ron and I decided to submit the paperwork to possibly make contact with his bone marrow donor. The required wait time was longer because the donor wasn't from the United States. Ron did not have a match in the United States registry; when the international registry was used, there were 3 matches. We knew the donor was from Europe due to the timing of the flight that brought the stem cells to Detroit, then Ann Arbor. The transplant had been delayed one day due to requiring a second harvesting of stem cells. This seems like a lifetime ago.
Why wait more than 2 years beyond the required wait time when you are so grateful? Due to the many complications, repeated hospitalizations, physical and cognitive changes, we weren't sure what the donor would want to know. In spite of everything, Ron and I are so grateful that he is "still here", and Ron is amazingly accepting of his altered quality of life. During Ron's 9 months of remission between acute myeloid leukemia diagnoses, he was able to return to officiating high school volleyball, softball, and basketball. He ran in a 5K Turkey Trot at Thanksgiving. Life was back to normal. October 2010.
Then he relapsed in May 2011. Following chemotherapy to bring him to a second remission, he had his bone marrow transplant August 26, 2011. Although he was a 10 for 10 match with his donor, his new bone marrow has waged battle on his body, much like an autoimmune disease. Chronic graft vs. host disease. cGVHD. So…where are we now? The permanent effects from the transplant and the infections that Ron has battled through ("You do know that Ron is a miracle?" one nurse said recently.) have immensely changed his quality of life. But the leukemia has not returned, and Ron does have life, and there is much that we can still enjoy, so we are so grateful to a donor halfway around the world who was willing to give Ron this lifesaving gift.
Why wait more than 2 years beyond the required wait time when you are so grateful? Due to the many complications, repeated hospitalizations, physical and cognitive changes, we weren't sure what the donor would want to know. In spite of everything, Ron and I are so grateful that he is "still here", and Ron is amazingly accepting of his altered quality of life. During Ron's 9 months of remission between acute myeloid leukemia diagnoses, he was able to return to officiating high school volleyball, softball, and basketball. He ran in a 5K Turkey Trot at Thanksgiving. Life was back to normal. October 2010.
Tuesday, December 15, 2015
My Christmas Letter 2015
I am not adding a letter to my Christmas cards this year. I plan to write a note here on the blog to catch up our news. This is my 500th entry on the Ron Hover's Update blog!! (I am still working on the cards that I mail.)
No one moved this year! (except Andrew from Iraq back home in Germany) That is newsworthy in itself. The next move will be Andrew, Lisa, Abby, and Lily from Germany to Hawaii. Niccole and Cole live in Fredericksburg, VA, and she did change high schools this year. It has been a good move for her. She continues to work on her doctorate at VCU. Matt, Kate, William, Anna, and Sarah live in Springfield, VA; Kate teaches at the same school, but Matt now works at Ft. Belvoir instead of the Pentagon. Cale, Jessica, Joey, Jack, and Allison live in Bowling Green, OH, and Cale is now teaching physics and chemistry at Eastwood High School. Best of all, no one is deployed. Andrew and his family are especially enjoying the holidays this year--starting with Halloween! He missed so much last year when he was in Iraq, including Lily's first birthday on January 1.
******Pictures of the kids, spouses, and grandchildren are below in the previous blog entry.******
Ron and I have enjoyed time at both of our homes; our Bowling Green villa is our second home instead of the Hampton Inn in Ann Arbor. I didn't count up our days in AA this year! Ron's treatments are now every third week instead of every other week, but we had several extra appointments there with hospitalizations in June and August for pneumonia. He also goes periodically to have special eyedrops made from his blood and for his immunity infusions.
I have included pictures of the youngest Troxells: Sophie and Ty. So fun to have babies at the family Christmas at my sister's home. The winter sunrises at Gilead Lake are breathtaking some mornings. This year we have our BG Christmas tree in the great room where we can see it all the time instead of by the den window where it can be seen from the outside…such a simple change but one that has been enjoyed daily!
We hope that all of you will experience the joy of the season and feel at peace. Enjoy reminiscing about holidays past and make new memories to carry you into the new year: 2016!!
Love, Ron & Jan
No one moved this year! (except Andrew from Iraq back home in Germany) That is newsworthy in itself. The next move will be Andrew, Lisa, Abby, and Lily from Germany to Hawaii. Niccole and Cole live in Fredericksburg, VA, and she did change high schools this year. It has been a good move for her. She continues to work on her doctorate at VCU. Matt, Kate, William, Anna, and Sarah live in Springfield, VA; Kate teaches at the same school, but Matt now works at Ft. Belvoir instead of the Pentagon. Cale, Jessica, Joey, Jack, and Allison live in Bowling Green, OH, and Cale is now teaching physics and chemistry at Eastwood High School. Best of all, no one is deployed. Andrew and his family are especially enjoying the holidays this year--starting with Halloween! He missed so much last year when he was in Iraq, including Lily's first birthday on January 1.
******Pictures of the kids, spouses, and grandchildren are below in the previous blog entry.******
Ron and I have enjoyed time at both of our homes; our Bowling Green villa is our second home instead of the Hampton Inn in Ann Arbor. I didn't count up our days in AA this year! Ron's treatments are now every third week instead of every other week, but we had several extra appointments there with hospitalizations in June and August for pneumonia. He also goes periodically to have special eyedrops made from his blood and for his immunity infusions.
I have included pictures of the youngest Troxells: Sophie and Ty. So fun to have babies at the family Christmas at my sister's home. The winter sunrises at Gilead Lake are breathtaking some mornings. This year we have our BG Christmas tree in the great room where we can see it all the time instead of by the den window where it can be seen from the outside…such a simple change but one that has been enjoyed daily!
We hope that all of you will experience the joy of the season and feel at peace. Enjoy reminiscing about holidays past and make new memories to carry you into the new year: 2016!!
Love, Ron & Jan
Saturday, December 5, 2015
D.C. Turkey Trot, Lake Erie, France
The two Turkey Trot pictures show the Matt & Kate Hover Family and the Hover-Taylor Team. Our (Cale and Jessica) grandchildren at Lake Erie, and our Andrew & Lisa Hover Family touring in France (home in Germany).
Tis The Season 2015
Can't believe it has been a month since I blogged; that speaks to the time of year it is! November proceeded as planned. Ron has stayed pretty much the same, so we were able to travel to Virginia for Thanksgiving. The weather cooperated, and we stayed at Matt and Kate's in Springfield. Niccole and Cole came for Wednesday and Thursday; they live about an hour away in Fredericksburg. So fun to see those 4 grandchildren have a good time together. They are full of energy and the parents and kids ran as a team in the D.C. Turkey Trot. Mike, Niccole's significant other, spent Thanksgiving with all of us, too. Truly so very much for us to be thankful for!
Our Christmas with Cale and Jess's family will be in BG. We're planning on spending the majority of the next 3 months in Ohio. So far so good; the weather has been mild. This was Ann Arbor week. We spent most of 3 days "up there" as Ron had blood work, two ECP treatments, had more eyedrops made from his blood, a transplant doctor appointment, and 6 immunizations. When you have a bone marrow transplant all of your protection from your childhood immunizations is wiped out, so Ron has had to have all childhood and adult immunizations repeated; the last round was this week. After driving to and from Virginia last week and back and forth to U of M this week, I have had my fill of driving! Ron has not been able to drive for over 3 years.
When Ron had his doctor appointment, I asked about tapering part of his treatment for what is basically the fight between the blood products made by his new bone marrow and his body. This is called graft vs host disease and can resolve early on or even years after a transplant. The GVHD is what has affected his skin and lungs the most. In March he will transition to ECP treatments every 6 weeks from monthly. He has had ECP treatments (127) for 3 years now, having started with weekly ECP appointments. He has 2 treatments on back to back days each week of treatment. Besides ECP, he takes prednisone daily. That will not be tapered. 10mg. His variety of antibiotic, antiviral, antifungal, and lung treatment is unchanged. SO, we have one more day in AA this month because Ron is due for his next immunity infusion. His new bone marrow does a pretty good job of making platelets and red blood cells, but did not recover to produce adequate antibodies to fight infection. The immunity infusion IVIG picks up the slack.
The pictures below show recent activities.
Our Christmas with Cale and Jess's family will be in BG. We're planning on spending the majority of the next 3 months in Ohio. So far so good; the weather has been mild. This was Ann Arbor week. We spent most of 3 days "up there" as Ron had blood work, two ECP treatments, had more eyedrops made from his blood, a transplant doctor appointment, and 6 immunizations. When you have a bone marrow transplant all of your protection from your childhood immunizations is wiped out, so Ron has had to have all childhood and adult immunizations repeated; the last round was this week. After driving to and from Virginia last week and back and forth to U of M this week, I have had my fill of driving! Ron has not been able to drive for over 3 years.
When Ron had his doctor appointment, I asked about tapering part of his treatment for what is basically the fight between the blood products made by his new bone marrow and his body. This is called graft vs host disease and can resolve early on or even years after a transplant. The GVHD is what has affected his skin and lungs the most. In March he will transition to ECP treatments every 6 weeks from monthly. He has had ECP treatments (127) for 3 years now, having started with weekly ECP appointments. He has 2 treatments on back to back days each week of treatment. Besides ECP, he takes prednisone daily. That will not be tapered. 10mg. His variety of antibiotic, antiviral, antifungal, and lung treatment is unchanged. SO, we have one more day in AA this month because Ron is due for his next immunity infusion. His new bone marrow does a pretty good job of making platelets and red blood cells, but did not recover to produce adequate antibodies to fight infection. The immunity infusion IVIG picks up the slack.
The pictures below show recent activities.
Thursday, November 5, 2015
Feeling thankful.
It is one of those times when I am feeling a shift in thinking. We are transitioning to spending more time in our villa in Bowling Green. Ron seems to have a preference for being here. We have no steps inside, and we are so much closer to the grocery store and other places to shop. We get out every day, so he can walk awhile. Even so, I know that it is really not enough exercise for him, and he has chosen to no longer go to out patient PT. He does occasionally use the stationary bike. It would be dangerous for him to walk with only the cane for any distance.
Next week Ron has treatments on 3 days in Ann Arbor. Hopefully that will boost him, so we can travel at Thanksgiving. He will also have another batch of serum eyedrops made from his blood.
All of the above: DONE!
Things went smoothly during appointments 3 of the last 4 days. Ron should be "tuned up" until December! His appointments are treatments to control his graft versus host disease which is an autoimmune disease and the other infusion boosts his immunity. His central line, a neostar, balked at one of his treatments, but a power flush got it working right. He has had this line since April 2014, and it is needed for his ECP treatments and makes life a lot easier for blood draws and other infusions.
Things at the lake are pretty much wrapped up for the winter. I sold the pontoon which felt like more of a relief than sadness. Bittersweet. It caused me grief on more than one occasion this summer. There is raking that needs to be done yet, but Ron always said to wait until all of the leaves are down!
I am starting to get a little excited about the first snowfall, even though it was in the 60s and 70s this week. At the same time, I am hoping that this winter won't seem so long. Planning to spend more time at the villa and planning on NOT getting snowed in at the lake this year.
Hope that you have exciting plans for a Happy Thanksgiving! We plan to spend the holiday with Matt's and Niccole's families in Virginia.
Love, Ron and Jan
Next week Ron has treatments on 3 days in Ann Arbor. Hopefully that will boost him, so we can travel at Thanksgiving. He will also have another batch of serum eyedrops made from his blood.
All of the above: DONE!
Things went smoothly during appointments 3 of the last 4 days. Ron should be "tuned up" until December! His appointments are treatments to control his graft versus host disease which is an autoimmune disease and the other infusion boosts his immunity. His central line, a neostar, balked at one of his treatments, but a power flush got it working right. He has had this line since April 2014, and it is needed for his ECP treatments and makes life a lot easier for blood draws and other infusions.
Things at the lake are pretty much wrapped up for the winter. I sold the pontoon which felt like more of a relief than sadness. Bittersweet. It caused me grief on more than one occasion this summer. There is raking that needs to be done yet, but Ron always said to wait until all of the leaves are down!
I am starting to get a little excited about the first snowfall, even though it was in the 60s and 70s this week. At the same time, I am hoping that this winter won't seem so long. Planning to spend more time at the villa and planning on NOT getting snowed in at the lake this year.
Hope that you have exciting plans for a Happy Thanksgiving! We plan to spend the holiday with Matt's and Niccole's families in Virginia.
Love, Ron and Jan
Thursday, October 22, 2015
Autumn in Michigan
We had a good trip Up North. We stayed in Traverse City and visited 3 of our favorite restaurants that we had found on previous trips. My rocking beach, Christmas Cove, was totally changed by Mother Nature. Lake Michigan is up two feet, and when the ice went out this year, it pushed an amazing amount of golden sand up to the shoreline, burying all of the rocks! Ron and I are in Sleeping Bear Dunes Park in one of these pictures.
The white barn and beautiful maple trees are about two miles from our home; I took that picture yesterday; the colors are peaking here. Gorgeous!
Ron still enjoys traveling, sightseeing, and shopping! He had to use the walker to get around on our trip; he is too shaky when just using his cane. We don't return to Ann Arbor until the first week of November, and we still hope that we can travel to Virginia for Thanksgiving.
Love to all,
Ron & Jan
Friday, October 2, 2015
I have compiled a summary of Ron's medical history, so he can have a primary care physician here in BG. This is a huge job...hardly knowing where to start and where to stop! I had been urged to do this by a new P.A. Every situation is an emergency, requiring a trip to AA, so I didn't really see the point, but I am complying. Ron will see my family doctor, so at least he will have a snapshot of who we are. Because we are returning to Michigan for awhile, he will not have this appointment until the end of the month.
Ron and I have celebrated our 45th wedding anniversary, "in sickness and in health". We spent part of the weekend with my maid of honor, our host and hostess-guest book, a groomsman, and best man. (Anne and George, Rick and Tammy, Kirk and Sue) For ourselves, we have a new recumbent bike in BG! Ron wrote me a very sweet note; he continues to thank me every day for something that I have done for him as his caregiver.
This picture was taken about a year ago; when I think back to that time, I realize how Ron has slowly declined. The two hospitalizations in June and August have affected him; he didn't quite get back to where he was before then. He has decided not to go to out patient PT any more, and he has decided to just take baby aspirin for his blood thinner. I anticipate deciding not to have the oral surgery unless there is an improvement in his overall health. With all of that being said, we are still planning to take our fall trips to the Traverse City, Michigan area and Virginia. I feel like we will be able to do that.
Again, a picture from last year. Fall is such a beautiful season, and it is a time that we will reflect on the prior months of 2015. Some of it was very beautiful and happy, and some of it was so difficult.
Love, Ron & Jan
Ron and I have celebrated our 45th wedding anniversary, "in sickness and in health". We spent part of the weekend with my maid of honor, our host and hostess-guest book, a groomsman, and best man. (Anne and George, Rick and Tammy, Kirk and Sue) For ourselves, we have a new recumbent bike in BG! Ron wrote me a very sweet note; he continues to thank me every day for something that I have done for him as his caregiver.
Love, Ron & Jan
Friday, September 25, 2015
We continue to spend time in Ann Arbor 3 of 4 weeks each month for a variety of reasons. Ron has had an ECP treatment-- his #122 I believe. He has also had an immunity infusion. Next week he will see his eye doctor and have blood drawn to have eyedrops made using his blood as a component. Those eyedrops have been like a miracle for him. GVHD caused not only dry mouth but also dry eyes, with his saliva glands and tear ducts not working right. The following week he will have 2 more ECP treatments, and then we are keeping our fingers crossed for a 2-3 week vacation from AA. We plan to go Up North to enjoy Pure Michigan's fall weather and colors.
Wednesday, September 16, 2015
Give hugs to your family members.
Ron is recovering nicely from pneumonia. We are finishing up his at-home IV antibiotics in 2 days. He has had a return visit to his Infectious Disease doctors in Ann Arbor. Progress is good, and he has tolerated this treatment well. He is already discharged from at home physical therapy, and I am trying to convince him that he should do some out patient therapy.
We did head to the lake on Ron's birthday, Friday, September 4. Have medical supplies; will travel. We were looking forward to family time with my siblings when our family experienced a terrible tragedy on Saturday, September 5. My niece Kara's husband Andy was killed in a car accident near Granger, Indiana. They were planning to leave for their Wall Lake cottage later that morning. My sister, Anne, and brother in law George live at Wall Lake- 10 minutes from our home. Two of their daughters' families have cottages next door to their year around home. Anne and George have made it manageable for us to keep our Michigan home. George takes care of the yard. They kept our kitty Blue when we lived in AA over 9 months. They water my flowers when we are gone, etc. George takes Ron golfing which is no easy task. We spend time at each other's homes. It has been an excruciating 10 days for them with a much-changed future abruptly thrust on them. The visitation and funeral were in South Bend, Indiana last week. With the help of my brother and sister in law, Gary and Vicki, and our son Matt who was able to fly in from Virginia, Ron and I were assisted in our trips to S.B. It was necessary to have a wheelchair for Ron. We loved Andy, too, and are heartbroken for my sister's family. Andy was an amazing husband, father, son in law, uncle, addition to our family, business man, and a personable guy. So much more that I could say here.
The picture below was taken about 8 years ago when Andy and Kara's younger daughter was a baby. Andy is holding her, and Kara is next to him. Their son is now 14 and daughters 11 & 8. Griffiths are pictured here with two of their daughters' (Jody's and Kara's) families--- all living in Indiana. Wendy's family lives in Iowa.
We did head to the lake on Ron's birthday, Friday, September 4. Have medical supplies; will travel. We were looking forward to family time with my siblings when our family experienced a terrible tragedy on Saturday, September 5. My niece Kara's husband Andy was killed in a car accident near Granger, Indiana. They were planning to leave for their Wall Lake cottage later that morning. My sister, Anne, and brother in law George live at Wall Lake- 10 minutes from our home. Two of their daughters' families have cottages next door to their year around home. Anne and George have made it manageable for us to keep our Michigan home. George takes care of the yard. They kept our kitty Blue when we lived in AA over 9 months. They water my flowers when we are gone, etc. George takes Ron golfing which is no easy task. We spend time at each other's homes. It has been an excruciating 10 days for them with a much-changed future abruptly thrust on them. The visitation and funeral were in South Bend, Indiana last week. With the help of my brother and sister in law, Gary and Vicki, and our son Matt who was able to fly in from Virginia, Ron and I were assisted in our trips to S.B. It was necessary to have a wheelchair for Ron. We loved Andy, too, and are heartbroken for my sister's family. Andy was an amazing husband, father, son in law, uncle, addition to our family, business man, and a personable guy. So much more that I could say here.
The picture below was taken about 8 years ago when Andy and Kara's younger daughter was a baby. Andy is holding her, and Kara is next to him. Their son is now 14 and daughters 11 & 8. Griffiths are pictured here with two of their daughters' (Jody's and Kara's) families--- all living in Indiana. Wendy's family lives in Iowa.
Friday, September 4, 2015
Thursday, September 3, 2015
Check Up Today
Today was a hospital discharge follow up appointment following Ron's week in the hospital last week. He also had his 120th ECP treatment. His care team spent a lot of time with him--almost two hours. He was feeling overwhelmed by the end and just sat with his eyes closed. I felt pretty much the same way, but I kept my eyes open. Because Dr. Mag wasn't on service for in-patients last week, there was some catching up to do even though he'd had a summary of what happened. We saw Tim briefly, Dr. Mag's nurse, and another doctor, a fellow working with Dr. Mag. He had seen Ron last week when he was observing during rounds.
We spent a lot of time talking about DVT, pulmonary embolisms, and blood thinners. Ron doesn't want to do the daily lovenox belly shots any more, and even very low dose xarelto caused too much bleeding. Other blood thinners require frequent bloodtests to monitor dosage, so Ron is taking the option of one 81 aspirin daily. baby aspirin.
Dr. Mag told me briefly about two new drugs that patients with active, early stage chronic graft versus host disease are trying now. They would not reverse the damage that Ron has to eyes, mouth, lungs, and skin, but it would be wonderful for new transplant patients to not have to go through everything Ron has.
Just to give you an example of how Ron has changed and is mellow, the new doctor when examining Ron's mouth and teeth somehow mentioned that the way Ron's mouth is restricted in how much he can open it--is called fish mouth. I said well, thanks, I would have been okay with not knowing that. But Ron thought that was pretty funny and made a fish mouth a few times to make all of us laugh.
Then we were off to ECP for 2.5 hours, and while there Ron's infectious disease doctor who is monitoring Ron's bloodwork while he is on the IV antibiotics at home, called to tell us that he is slightly dehydrated and needs to drink more fluids. But otherwise, he is doing okay on this stronger antibiotic. Next week Ron will have another ECP treatment and bloodwork. In June Ron had 9 days of IVs at home of the same antibiotic; this time he will have 18 days.
My rambling went out of control...too many details above to say that Ron is doing okay. Me,too!
We spent a lot of time talking about DVT, pulmonary embolisms, and blood thinners. Ron doesn't want to do the daily lovenox belly shots any more, and even very low dose xarelto caused too much bleeding. Other blood thinners require frequent bloodtests to monitor dosage, so Ron is taking the option of one 81 aspirin daily. baby aspirin.
Dr. Mag told me briefly about two new drugs that patients with active, early stage chronic graft versus host disease are trying now. They would not reverse the damage that Ron has to eyes, mouth, lungs, and skin, but it would be wonderful for new transplant patients to not have to go through everything Ron has.
Just to give you an example of how Ron has changed and is mellow, the new doctor when examining Ron's mouth and teeth somehow mentioned that the way Ron's mouth is restricted in how much he can open it--is called fish mouth. I said well, thanks, I would have been okay with not knowing that. But Ron thought that was pretty funny and made a fish mouth a few times to make all of us laugh.
Then we were off to ECP for 2.5 hours, and while there Ron's infectious disease doctor who is monitoring Ron's bloodwork while he is on the IV antibiotics at home, called to tell us that he is slightly dehydrated and needs to drink more fluids. But otherwise, he is doing okay on this stronger antibiotic. Next week Ron will have another ECP treatment and bloodwork. In June Ron had 9 days of IVs at home of the same antibiotic; this time he will have 18 days.
My rambling went out of control...too many details above to say that Ron is doing okay. Me,too!
Saturday, August 29, 2015
A few more details...
Today was primarily changing gears. During a crisis including calling 911 and 2 ambulance rides, the adrenalin pumps you up and seems to somewhat sustain you through the questions and answers of hospital days. Then you are hyped up because you're going home; this is followed by a bit of a crash which translates to a long nap at home. Ron and I both slept this afternoon.
Cale's family had brought a Panera breakfast, and the admitting physical therapist arrived near noon and was here about an hour. Ron will have PT at home. He has walked more around the villa today than he did all week in the hospital. So many good reasons to be back home.
Ron has return appointments at U of M the next two Thursdays. While on this antibiotic, kidney function has to be monitored. This situation is a good example of why we decided to buy the villa in Bowling Green. We have had to be in Ann Arbor more weeks than not the last 3 months. Those would be trips twice as far from the lake and would have required more nights at the Hampton.
The DVT and blood thinner issue is unresolved. Ron had tried xarelto but it caused increased bleeding and bruising, so the dose was cut to 1/3 of the original to a very low dose. It was held 5 days prior to the oral surgery that is now postponed. When they resumed it in the hospital, more bleeding after only one pill, so now we will have a discussion with Dr. Mag about this Thursday. I am preparing myself that he might need to go back on the Lovenox belly shots. So many issues are related to each other.
Enough for today! I need to start tonight's infusion of cefepime. The 10:00 and 10:00 schedule works well for us.
Cale's family had brought a Panera breakfast, and the admitting physical therapist arrived near noon and was here about an hour. Ron will have PT at home. He has walked more around the villa today than he did all week in the hospital. So many good reasons to be back home.
Ron has return appointments at U of M the next two Thursdays. While on this antibiotic, kidney function has to be monitored. This situation is a good example of why we decided to buy the villa in Bowling Green. We have had to be in Ann Arbor more weeks than not the last 3 months. Those would be trips twice as far from the lake and would have required more nights at the Hampton.
The DVT and blood thinner issue is unresolved. Ron had tried xarelto but it caused increased bleeding and bruising, so the dose was cut to 1/3 of the original to a very low dose. It was held 5 days prior to the oral surgery that is now postponed. When they resumed it in the hospital, more bleeding after only one pill, so now we will have a discussion with Dr. Mag about this Thursday. I am preparing myself that he might need to go back on the Lovenox belly shots. So many issues are related to each other.
Enough for today! I need to start tonight's infusion of cefepime. The 10:00 and 10:00 schedule works well for us.
Friday, August 28, 2015
Thursday, August 27, 2015
Home tomorrow...probably
Nothing much new today except that the sensitivity tests on the pneumonia bug in Ron's lungs indicate that he is already on the best medicine for it. Ron takes 3 antibiotics, but they do not treat this stubborn pseudomonas. That is why he will continue to require IV antibiotics at home with cefepime.
I did get a copy of Ron's chest CT scan. They compared it to June's 2 months ago. The affected area in the lower lobes has increased and now there is extensive abnormal involvement in the bronchial walls. This is a progressive issue caused by graft versus host disease in his lungs. I will request a full work up by his pulmonary doctor when he is better. It is quite possible that he will continue to not need oxygen at home. As I understand, the progression is really not predictable. It seems like the oral surgery will be delayed indefinitely.
So for now, the goal will be to get stronger, and he has some weight to gain back. He is so ready to get home, so he can sleep more. That would go for me, too. (The part about the sleep:)
They took Ron off the diabetic menu today, and he can order anything. He needs almost no insulin, he is losing weight, and I had been buying more food for him and raiding the patient refreshment room. The ECP nurses had told me a long time ago to let him eat whatever he wants to and just cover it with insulin as needed. Common sense. He stays pretty steady at about 35 lbs below his start weight but has weighed 30 lbs less than he does now. His weight now is the happy medium.
So excited that we will probably go to our BG home tomorrow afternoon.
I did get a copy of Ron's chest CT scan. They compared it to June's 2 months ago. The affected area in the lower lobes has increased and now there is extensive abnormal involvement in the bronchial walls. This is a progressive issue caused by graft versus host disease in his lungs. I will request a full work up by his pulmonary doctor when he is better. It is quite possible that he will continue to not need oxygen at home. As I understand, the progression is really not predictable. It seems like the oral surgery will be delayed indefinitely.
So for now, the goal will be to get stronger, and he has some weight to gain back. He is so ready to get home, so he can sleep more. That would go for me, too. (The part about the sleep:)
They took Ron off the diabetic menu today, and he can order anything. He needs almost no insulin, he is losing weight, and I had been buying more food for him and raiding the patient refreshment room. The ECP nurses had told me a long time ago to let him eat whatever he wants to and just cover it with insulin as needed. Common sense. He stays pretty steady at about 35 lbs below his start weight but has weighed 30 lbs less than he does now. His weight now is the happy medium.
So excited that we will probably go to our BG home tomorrow afternoon.
Wednesday, August 26, 2015
Camping in a hospital
That is sorta what it feels like. At least we have more privileges this time to move around and use all resources on 7th floor Mott Hospital- adult bone marrow transplant wing. I eat and sleep in Ron's room, and I just finished our laundry which is located in a nook in the family lounge. I can use his bathroom and shower. You never know when one of his doctors is dropping in, and I don't like to miss any information. Ron often does not give accurate information-- for example today he told them that he had been taking walks out in the hallway. He might tell them that he has been golfing a couple times a week and riding his stationary bike 3-4 times a week. These are all things that he knows he should do and would enjoy doing. I feel bad about sitting out of his sight shaking my head no to the doctor.
Today has not been too eventful. We have learned that I will need to give him IV antibiotics for 3 weeks when we get home. After he was discharged from the hospital in June, I only had to do this for 9 days. Now they are saying maybe Friday. (Cale, thanks for taking care of Blue.) Ron is only on 1 IV antibiotic now--the one that I will give him at home. The physical therapist came in shortly to catch up on what has been happening. She has helped Ron before. She will do a formal evaluation tomorrow. She will also make recommendations about having oxygen at home. I don't know what his PT plan will be when we get home. I also don't know how our calendar will jibe with all of this. I have learned to stay flexible, and Ron's medical needs will drive the train.
Here's a funny story: Abby, our 8 year old granddaughter in Germany messaged her Aunt Nicci in VA. She said I heard that Pa is sick again. What is going on? Nicci messaged back giving an age appropriate gist of things. Abby replied, thanks. My Mom wouldn't tell me. LOL
Today has not been too eventful. We have learned that I will need to give him IV antibiotics for 3 weeks when we get home. After he was discharged from the hospital in June, I only had to do this for 9 days. Now they are saying maybe Friday. (Cale, thanks for taking care of Blue.) Ron is only on 1 IV antibiotic now--the one that I will give him at home. The physical therapist came in shortly to catch up on what has been happening. She has helped Ron before. She will do a formal evaluation tomorrow. She will also make recommendations about having oxygen at home. I don't know what his PT plan will be when we get home. I also don't know how our calendar will jibe with all of this. I have learned to stay flexible, and Ron's medical needs will drive the train.
Here's a funny story: Abby, our 8 year old granddaughter in Germany messaged her Aunt Nicci in VA. She said I heard that Pa is sick again. What is going on? Nicci messaged back giving an age appropriate gist of things. Abby replied, thanks. My Mom wouldn't tell me. LOL
Tuesday, August 25, 2015
Cancellation of lung scope
We were on the way to University Hospital About 9:45 when the transporter received a message that the lung scope had been cancelled. Actually, the same thing happened in June. The sputum culture is showing pseudomonas again, the antibiotics are knocking out the pneumonia, so they do not feel any risk warrants this procedure. Now they run sensitivity tests on the pseudomonas, so they can stop any antibiotics that are unnecessary.
Ron did have an allergic reaction to the lidocaine in his last bronch, so they were going to use general anesthesia this time. Anyway, over all, this is a good thing that they do not feel it is necessary at this time to do the scope due to potential problems for Ron. So this decision brought in a parade of doctors. First the PA was here, the pharmacist, the BMT doctor on service for hospitalized transplant patients, the pulmonary doc and team, the infectious disease doc, and the respiratory therapist. The whole team will decide how to move ahead with treatment for the pseudomonas which appears to be colonized in his lungs which means that it is not going away. (But not always an active infection)
The other good news is that is the first time in over three years that he did not test positive for MRSA or another antibiotic resistant bacteria, so this time he is allowed to leave his room, and I am allowed to use the lounge, exercise room, washing machines and dryers, and the other common areas on 7th floor. Also, everyone who comes in his room no longer has to gown up.
He might get to go home Thursday but it will probably be Friday. He will also be evaluated by a physical therapist. He is definitely weaker but has only lost about 3 pounds.
Need to post this! I have been working on it for 3 hours because so many interruptions!
Ron did have an allergic reaction to the lidocaine in his last bronch, so they were going to use general anesthesia this time. Anyway, over all, this is a good thing that they do not feel it is necessary at this time to do the scope due to potential problems for Ron. So this decision brought in a parade of doctors. First the PA was here, the pharmacist, the BMT doctor on service for hospitalized transplant patients, the pulmonary doc and team, the infectious disease doc, and the respiratory therapist. The whole team will decide how to move ahead with treatment for the pseudomonas which appears to be colonized in his lungs which means that it is not going away. (But not always an active infection)
The other good news is that is the first time in over three years that he did not test positive for MRSA or another antibiotic resistant bacteria, so this time he is allowed to leave his room, and I am allowed to use the lounge, exercise room, washing machines and dryers, and the other common areas on 7th floor. Also, everyone who comes in his room no longer has to gown up.
He might get to go home Thursday but it will probably be Friday. He will also be evaluated by a physical therapist. He is definitely weaker but has only lost about 3 pounds.
Need to post this! I have been working on it for 3 hours because so many interruptions!
(Yesterday, August 24) Happy 4th Birthday!
Ron and I shared a piece of cake last evening to celebrate the 4th anniversary of his transplant. Even though his health has been so poor, we are grateful for the numerous life events that he has been able to experience since August 24, 2011. #1 on that list would be the birth of our 9th grandchild, Lily Grace Hover, on New Years Day 2014.
Ron is supposed to have his bronch at 9:30. I am glad he is sleeping because he will be hungry soon! He has had no food or drink since midnight since he will be under general anesthesia. He has greatly improved and is just on room air already, and his heart rate and oxygen level are better than they have been, maybe for months.
I am hopeful that the pulmonary team will have a lot of information for us about Ron's lungs after the scope, biopsies, and cultures of fluids. There is never a crystal ball but some idea of what we might expect would be helpful. I think. We probably will not have any results for a day or two.
Ron's appearance has changed greatly since his transplant. He continues to have the appearance of a chronically ill person. In the ER a doctor asked me if I was his daughter. You would think I could get a little pleasure out of that because many times in the past people used to ask if I was his mother. Ron asked me if he looks old, then said: or do you just really look young? i told him no on both counts!
Ron is supposed to have his bronch at 9:30. I am glad he is sleeping because he will be hungry soon! He has had no food or drink since midnight since he will be under general anesthesia. He has greatly improved and is just on room air already, and his heart rate and oxygen level are better than they have been, maybe for months.
I am hopeful that the pulmonary team will have a lot of information for us about Ron's lungs after the scope, biopsies, and cultures of fluids. There is never a crystal ball but some idea of what we might expect would be helpful. I think. We probably will not have any results for a day or two.
Ron's appearance has changed greatly since his transplant. He continues to have the appearance of a chronically ill person. In the ER a doctor asked me if I was his daughter. You would think I could get a little pleasure out of that because many times in the past people used to ask if I was his mother. Ron asked me if he looks old, then said: or do you just really look young? i told him no on both counts!
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