We are hanging in close to home as Ron continues to recuperate from his December 17-19 hospitalization. Ron will See his BMT doc on Wednesday; they added this appointment based on this week's bloodwork and skin flare-up which has been an issue for 3+ weeks now. Medication dosage change and steroid ointment has not brought it under control. He has not been back to physical therapy yet and is not getting worse but not getting significantly better either.
Ron's last days when he felt quite good were December 15-16. We are both ready to get on the other side of this current "bump in the road".
Saturday, December 29, 2012
Tuesday, December 25, 2012
Merry Christmas!!
Hope you have special memories of this day. Today I was thinking about the many different places that we have celebrated Christmas...especially when the kids were little. Those are special memories. This year we are home at the lake and were not able to travel to BG because both of us are recuperating from sneezing and coughing colds. Actually I think that I caught it from Ron. We did travel to Jackson on Sunday to celebrate the season with Ron's mother who is almost 92 and his brother and wife. It may have been a bit ambitious since he was not really recovered from his hospitalization. He seemed pretty shaky on Sunday, so a two day trip was simply not a good idea. We have celebrated Christmas with Cale's and Jessica's family for many years, so it was sad to not be able to do that, but I could tell that Ron was almost relieved when I told him that I just didn't think we should make the trip. I don't think anyone would want to be exposed to whatever bug we have. So there is next year. We have learned to roll with the punches and do whatever is necessary to move forward with Ron's recovery.
Ron will have his weekly bloodtest tomorrow morning in Coldwater, weather permitting. I still have concerns about his skin flare-up and BK virus that affects his bladder. We go back to Ann Arbor for appointments on January 15-16.
Love to all of you during this beautiful season. Peace.
Ron & Jan
Ron will have his weekly bloodtest tomorrow morning in Coldwater, weather permitting. I still have concerns about his skin flare-up and BK virus that affects his bladder. We go back to Ann Arbor for appointments on January 15-16.
Love to all of you during this beautiful season. Peace.
Ron & Jan
Friday, December 21, 2012
Recovery at Home Continues
Once we are home, there are a hundred things to do! That is not a bad thing. I still have to finish up a few Christmas cards..just threw everything off the kitchen table and into a box before we left for the hospital on Monday. I am thankful that Ron had a fever this time because there was no discussing whether to go or not, and the infection was treated relatively early. In August he was very sick before Matt and I took him to the ER. To everything there is a learning curve.
So what was it? He definitely had a urinary tract infection, a worsening cough which was probably bronchitis, and moderate skin flare due to his chronic graft versus host disease. He felt very weak Monday morning when he got up and had a fever. If he hadn't had the infection going on, the doc said that he would have given him an infusion of steroids to help knock down the skin changes. The nasal swab for flu viruses returned all negative. The IV antibiotics worked wonders and worked quickly.
My next questions for the doc will be what preventions could be taken when his cough worsens and his urine is noticeably different. That had been going on prior to the fever, or maybe you just have to wait to see if something develops. I hope his IVIG infusion 10 days ago will help his immune system.
So we have been hanging out at home to rest up and recuperate for the activities that are planned for the weekend and next week. I hope all of you are excited about your holiday plans and a break from your routines. Last night I enjoyed a favorite tradition of reading and just enjoying all holiday cards and letters: beautiful,thoughtful cards, wonderful pictures of relatives, friends, children and grandchildren, pets, memories of 2012,and a glimpse into the lives of so many people special to us. Although we are scattered far and wide, this visit draws all of us a little closer again. I will look at them several times.
Love and Merry Christmas,
Ron & Jan
So what was it? He definitely had a urinary tract infection, a worsening cough which was probably bronchitis, and moderate skin flare due to his chronic graft versus host disease. He felt very weak Monday morning when he got up and had a fever. If he hadn't had the infection going on, the doc said that he would have given him an infusion of steroids to help knock down the skin changes. The nasal swab for flu viruses returned all negative. The IV antibiotics worked wonders and worked quickly.
My next questions for the doc will be what preventions could be taken when his cough worsens and his urine is noticeably different. That had been going on prior to the fever, or maybe you just have to wait to see if something develops. I hope his IVIG infusion 10 days ago will help his immune system.
So we have been hanging out at home to rest up and recuperate for the activities that are planned for the weekend and next week. I hope all of you are excited about your holiday plans and a break from your routines. Last night I enjoyed a favorite tradition of reading and just enjoying all holiday cards and letters: beautiful,thoughtful cards, wonderful pictures of relatives, friends, children and grandchildren, pets, memories of 2012,and a glimpse into the lives of so many people special to us. Although we are scattered far and wide, this visit draws all of us a little closer again. I will look at them several times.
Love and Merry Christmas,
Ron & Jan
Wednesday, December 19, 2012
Being discharged today!! Yeah!
Ron has not had a fever for over 24 hours and continues to feel better. Blood and urine cultures did not show bacterial growth. So we are going home this afternoon! Not much battery left and of all visits, this is the first time that I forgot the IPad charger!!
Looks like all Christmas plans can resume! Med changes are: increased daily prednisone and have added a second antibiotic for a few days at home.
Love to all,
Ron & Jan
Looks like all Christmas plans can resume! Med changes are: increased daily prednisone and have added a second antibiotic for a few days at home.
Love to all,
Ron & Jan
Tuesday, December 18, 2012
Dr. Magenau has rounded...
Ron's primary transplant doctor is on in-patient service this week. We like him so much, and of course, it is a huge help to see the doc who kmows Ron's story. Well, we are not going home today. What was I thinking?? They are culturing Ron's blood, urine, and viral nasal swab as well as swabs for two other infections that are done always for all patients on admittance and weekly. (VRE and MERSA) So now Ron is on an IV antibiotic which is a broader spectrum one- cefipine. He as an infusion every 8 hours.
The doc did up his prednisone for a week to knock down the cGVHD flare-up of skin. It is not severe but noteworthy..probably moderate would be a good descriptor, and it is most noticeable on his arms. The antibiotics and prednisone changes are the only med changes. He may go home on a more specific antibiotic after the cultures are back and if they show any specific bacteria. He has been fever-free for 24 hours now, so that is the first step. Hopeful that we will go home late Wednesday. He really feels pretty good; just a little weak and coughing. He can't walk out in the hall until his viral swab results are back.
We are doing okay. In some ways I see it beneficial for Ron to have a full work-up. His chest x-ray was negative for pneumonia. I will continue to update the long version here on the blog because I can give all of you more detailed information.
I see a nap in my near future.
Love to all,
Ron and Jan
The doc did up his prednisone for a week to knock down the cGVHD flare-up of skin. It is not severe but noteworthy..probably moderate would be a good descriptor, and it is most noticeable on his arms. The antibiotics and prednisone changes are the only med changes. He may go home on a more specific antibiotic after the cultures are back and if they show any specific bacteria. He has been fever-free for 24 hours now, so that is the first step. Hopeful that we will go home late Wednesday. He really feels pretty good; just a little weak and coughing. He can't walk out in the hall until his viral swab results are back.
We are doing okay. In some ways I see it beneficial for Ron to have a full work-up. His chest x-ray was negative for pneumonia. I will continue to update the long version here on the blog because I can give all of you more detailed information.
I see a nap in my near future.
Love to all,
Ron and Jan
Hospital Visit
Decided to write a quick update before going to sleep for the night. Ron is doing well. He no longer has a fever, and several tests are underway, primarily to rule out blood infections, pneumonia, etc. He did have an elevated WBC count, and blood and other signs of infection in his urine. His cough has changed in the last two days to being more robust, for lack of a better word. He has had a cough for a few weeks, might be bronchitis now.
Having had several hospitalizations now and this being his 178th night in the hospital, we have a routine and realistic expectations for how things will progress. We can only hope that we will be able to go home tomorrow. At about 11:00, I went back to the ER area, picked up the car, and moved it to the Mott parking lot. I had packed overnight things anticipating a stay here. I have learned a lot since Ron's first hospitalization here in 2010 when I stayed in the same clothes for 3 days ( was in a daze) and brushed my teeth with my finger.
The nurse and doctor that have seen him here in the hospital are new to us...not a problem, but there is a lot of history to sum up. we will see Dr. Mag in the morning.
There was no phone reception in ER area most of the time, so I couldn't text updates.
Having had several hospitalizations now and this being his 178th night in the hospital, we have a routine and realistic expectations for how things will progress. We can only hope that we will be able to go home tomorrow. At about 11:00, I went back to the ER area, picked up the car, and moved it to the Mott parking lot. I had packed overnight things anticipating a stay here. I have learned a lot since Ron's first hospitalization here in 2010 when I stayed in the same clothes for 3 days ( was in a daze) and brushed my teeth with my finger.
The nurse and doctor that have seen him here in the hospital are new to us...not a problem, but there is a lot of history to sum up. we will see Dr. Mag in the morning.
There was no phone reception in ER area most of the time, so I couldn't text updates.
Monday, December 17, 2012
ER Visit at U of M
Yesterday we had a Christmas celebration with Jan's side of the family. Cale, Jessica, Joey, Jack, and Allison (and the pugs) came for the weekend,too. A wonderful time.
This morning Ron woke up a couple hours later than usual...in fact, I was getting very used to him making the morning coffee before I joined him in the great room, but this morning he seemed to be sleeping in after a busy weekend. He was quite flushed when he got up, had a headache, and had a fever that was soon 100.9. The "transplant rules" are a fever of 100.2 or higher means an ER visit, so I called the clinic, and they wanted me to take him to Ann Arbor - U of M Hospital ER. We are now in a private holding room before his admittance to BMT in patient in Mott Hospital. He probably just has an urinary tract Infection. He is not as sick as he was when admitted in August for a UTI and pneumonia. He has not shown confusion this time. They have already given him a round of IV antibiotics, so although we are staying overnight, I think we will be going home tomorrow.
This morning Ron woke up a couple hours later than usual...in fact, I was getting very used to him making the morning coffee before I joined him in the great room, but this morning he seemed to be sleeping in after a busy weekend. He was quite flushed when he got up, had a headache, and had a fever that was soon 100.9. The "transplant rules" are a fever of 100.2 or higher means an ER visit, so I called the clinic, and they wanted me to take him to Ann Arbor - U of M Hospital ER. We are now in a private holding room before his admittance to BMT in patient in Mott Hospital. He probably just has an urinary tract Infection. He is not as sick as he was when admitted in August for a UTI and pneumonia. He has not shown confusion this time. They have already given him a round of IV antibiotics, so although we are staying overnight, I think we will be going home tomorrow.
Wednesday, December 12, 2012
Day # 475: infusion Day at U of M
As I looked back on my blog, I realized that it actually had been much longer since Ron had had this type of infusion. It is called IVIG and will give his immunity a boost. Because blood products have given him hives in the past, he has benadryl,Tylenol,and an infusion of hydrocortisone as pre-meds.
Overall, it was a good day. (of course, I wasn't the one who had to be poked three times to get the IV started.) The pre-meds make Ron drowsy, so he slept for quite awhile. He has the infusion in a hospital-like room because it takes nearly 6 hours for the entire process. His bloodwork is good. Although he is on blood thinner, his clotting-platelets count has improved greatly to nearly normal range. It would seem that part of the reason for his previously low platelets count was that instead of continuing to circulate, they formed the bloodclots over a long period of time. Maybe. Today they told us that Ron will continue with lovenox injections for 3-6 months. For BMT patients, this is preferred treatment over coumadin. Ron has gained 5 more pounds this month...25 pounds total since Labor Day weekend. His BP is normal 127/77 and heart rate down to high 60s.
There has been some relief from symptoms this month. Ron's mouth has basically healed finally---can't even imagine having mouth sores for a year. He also has regained some of the feeling in his feet. This will help with his balance and walking. He sees his neurologist in January; one thing he will do is re-evaluate the peripheral neuropathy.
Today's bloodtests did show elevations in liver enzymes which can mean some cGVHD going on in his liver. Also, his skin has some red splotchiness; probably some chronic graft versus host disease going on there too, but it is minimal as his body continues to adjust to this month's decrease in prednisone. Today's pre-meds should help that, and his steroids will remain at the same dosage. There were no new med changes except to use less steroid mouth rinse.
When I looked back in the blog to October 2011 when Ron had an IVIG infusion, I couldn't help but feel grateful that I didn't know what "the long haul" meant when Dr. Mag told us that. It was also upsetting to relive what Ron was experiencing during the last 3 months of the year...and we still had no idea that we would stay in Ann Arbor until the end of May because of more complications during the first months of 2012. But not to dwell on that, but to be so very thankful that we are in a good place now. I am rambling tonight...just so thankful that there was nothing new to catch us off guard today and revved with anticipation of more return to normalcy in 2013. We have paid our dues this year.
Love to all and wishes for a joyous holiday season,
Ron & Jan
Overall, it was a good day. (of course, I wasn't the one who had to be poked three times to get the IV started.) The pre-meds make Ron drowsy, so he slept for quite awhile. He has the infusion in a hospital-like room because it takes nearly 6 hours for the entire process. His bloodwork is good. Although he is on blood thinner, his clotting-platelets count has improved greatly to nearly normal range. It would seem that part of the reason for his previously low platelets count was that instead of continuing to circulate, they formed the bloodclots over a long period of time. Maybe. Today they told us that Ron will continue with lovenox injections for 3-6 months. For BMT patients, this is preferred treatment over coumadin. Ron has gained 5 more pounds this month...25 pounds total since Labor Day weekend. His BP is normal 127/77 and heart rate down to high 60s.
There has been some relief from symptoms this month. Ron's mouth has basically healed finally---can't even imagine having mouth sores for a year. He also has regained some of the feeling in his feet. This will help with his balance and walking. He sees his neurologist in January; one thing he will do is re-evaluate the peripheral neuropathy.
Today's bloodtests did show elevations in liver enzymes which can mean some cGVHD going on in his liver. Also, his skin has some red splotchiness; probably some chronic graft versus host disease going on there too, but it is minimal as his body continues to adjust to this month's decrease in prednisone. Today's pre-meds should help that, and his steroids will remain at the same dosage. There were no new med changes except to use less steroid mouth rinse.
When I looked back in the blog to October 2011 when Ron had an IVIG infusion, I couldn't help but feel grateful that I didn't know what "the long haul" meant when Dr. Mag told us that. It was also upsetting to relive what Ron was experiencing during the last 3 months of the year...and we still had no idea that we would stay in Ann Arbor until the end of May because of more complications during the first months of 2012. But not to dwell on that, but to be so very thankful that we are in a good place now. I am rambling tonight...just so thankful that there was nothing new to catch us off guard today and revved with anticipation of more return to normalcy in 2013. We have paid our dues this year.
Love to all and wishes for a joyous holiday season,
Ron & Jan
Thursday, December 6, 2012
Medical Update
Ron will be seen by his transplant doctor on December 12th. The clinic contacted us to let him know that they have scheduled an IVIG infusion for him starting at 9:30 after his bloodwork appointment. This infusion will increase his immunity; it is the one with donor antibodies (from plasma) from over 1000 donors. It is given slowly; the infusion is scheduled for six hours and will be his third one this year. The Bone Marrow Transplant Clinic has its own infusion area, and Ron will have a room --like a hospital room. Dr. Mag and PA Tim will see him while he is in the infusion area.
Overall, I think we are continuing to move forward. Ron has weekly bloodtests at our local hospital to check for side effects from his Lovenox daily injections which he takes for the bloodclots in his lower left leg. I finally asked for a timeframe for the injections since I give them in his abdomen and hoped that it wouldn't be too much longer...at least six months was the answer, and actually I was glad that I hadn't asked sooner.
Ron's U of M appointments are a month apart now. He continues to have physical therapy twice a week. His PT center has a maintainence program for when he no longer has a prescription for PT. He can use their facility as needed for only $24 a month. It will be especially important to continue during our cold, snowy winter months. Also, it is a branch of the local hospital, and everything is sanitized more frequently than a fitness center.
We are enjoying decorating for the holidays. We only had a few of our things in AA last year. We both laughed when I opened some of the holiday storage tubs and said, "This is like Christmas!!". I also realized that I have too much stuff, and "less is more" came to mind. So as things change, it can still be good, very good in fact.
Happy Holidays!
Love, Ron & Jan
Overall, I think we are continuing to move forward. Ron has weekly bloodtests at our local hospital to check for side effects from his Lovenox daily injections which he takes for the bloodclots in his lower left leg. I finally asked for a timeframe for the injections since I give them in his abdomen and hoped that it wouldn't be too much longer...at least six months was the answer, and actually I was glad that I hadn't asked sooner.
Ron's U of M appointments are a month apart now. He continues to have physical therapy twice a week. His PT center has a maintainence program for when he no longer has a prescription for PT. He can use their facility as needed for only $24 a month. It will be especially important to continue during our cold, snowy winter months. Also, it is a branch of the local hospital, and everything is sanitized more frequently than a fitness center.
We are enjoying decorating for the holidays. We only had a few of our things in AA last year. We both laughed when I opened some of the holiday storage tubs and said, "This is like Christmas!!". I also realized that I have too much stuff, and "less is more" came to mind. So as things change, it can still be good, very good in fact.
Happy Holidays!
Love, Ron & Jan
Monday, December 3, 2012
Linda and Nancy: cancer warriors
We have known two courageous women whose battle with cancer has ended in the last two weeks. I hadn't fully realized the camaraderie you feel with others who are members of "this club". And although their deaths are not about us, they are in part because part of our team of supporters is now gone, so a sense of loss is felt on more than one level. So we thank both families for the gift of positive energy and inspiration that both their loved ones and their caregivers gave to us. It is an honorable legacy.
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