Ron continues to improve. He is on a low level of oxygen support and still having breathing treatments every 4 hours. He will not need breathing treatments when we go home, but there is a possibility that he will have oxygen at home if needed. Preliminary tests continue to "only" show staph infection in his lungs, but all symptoms have greatly improved. He has not had a fever since the first day.
Because he will go home prior to the full course of IV antibiotics and because he will have ECP light therapy for several weeks which requires two lines, he is going to have a central line (port -- neostar)again. It is a surgical procedure and will be done late today or tomorrow. He had his first port for over 9 months. With all of the pokes he has had in the last 5 days, it will be good for him to have a port again.
Ron is still lobbying to be home in his own chair for the Super Bowl, but I would rather stay until Monday and not have to come back next week for ECP or a check up. Don't know if he should go a week+ without a check up. We will see how the making of arrangements goes-- especially in regard to the placement of the Neostar and ECP treatments.
Thursday, January 31, 2013
Wednesday, January 30, 2013
Home for the Super Bowl???
Probably not; although that was the goal Ron told the doc. His course of treatment requires hospital administered IV antibiotics with a course of treatment over several days, so we don't know an exact date yet. Also, they would like to resume his ECP light therapy before we leave, and he needs to be well enough that he doesn't require oxygen. He is getting close to not needing oxygen.
He will walk with the PT this afternoon,so overall, everything is improving!! I want to get to a point of recovery where I am in a comfort zone of being an adequate caregiver. He may have a central line put in again which would make ECP and other procedures poke-free. He had a central line for 9 months, and I had learned how to use it and take care of it at our apartment when we lived here in Ann Arbor. So extremely relieved at how much better he is day to day!
He will walk with the PT this afternoon,so overall, everything is improving!! I want to get to a point of recovery where I am in a comfort zone of being an adequate caregiver. He may have a central line put in again which would make ECP and other procedures poke-free. He had a central line for 9 months, and I had learned how to use it and take care of it at our apartment when we lived here in Ann Arbor. So extremely relieved at how much better he is day to day!
Tuesday, January 29, 2013
Out of ICU. Into Mott BMT Unit
Ron moved to a regular hospital room at 2:00 this afternoon. He walked in the hall of the ICU, had been in a chair for longer periods of time, and his need for oxygen has decreased dramatically. The main criteria for needing the ICU was his need for a high level of oxygen. He was being treated for an unknown organism with a broad variety of antibiotics, anti fungal, and anti viral medicines. At this point the only culture that has grown an organism is from his lungs-- a staph infection. Although he had been on two antibiotics --one for the last six months and the other one month, it was not specific enough for the staph to prevent the infection. Because he has improved well since Sunday, the IV antibiotics are working well.
Ron's doctor was in Lansing today but came to see us after returning to Ann Arbor. He basically said: we've got this covered. Bone marrow transplant patients are immunosuppressed and can become sick more easily and more severely, especially when they are on steroids for a long time like Ron has been. ---but the steroids keep his GVHD under control most of the time. This is more reason to have ECP treatment for the graft versus host disease; he will be able to take less steroids, so won't be so susceptible to infection.
His blood draw cultures have not grown anything. (the staph could have spread to his blood causing sepsis or blood poisoning.) His flu swab was negative, so he is off tamiflu now, and not RSV or urinary tract infection either. The staph is enough to deal with! He will be able to go home by the weekend at the earliest.
So this has been a busy day! Cale and Joey came to the hospital, too. There are flu restrictions, so Joey entertained me while Cale spent time with Ron.
Although Ron had great care in the ICU, it is so reassuring to be back on the BMT floor with so many medical fiends. Once again they will be able to fix things, and they fill us with hope.
Ron's doctor was in Lansing today but came to see us after returning to Ann Arbor. He basically said: we've got this covered. Bone marrow transplant patients are immunosuppressed and can become sick more easily and more severely, especially when they are on steroids for a long time like Ron has been. ---but the steroids keep his GVHD under control most of the time. This is more reason to have ECP treatment for the graft versus host disease; he will be able to take less steroids, so won't be so susceptible to infection.
His blood draw cultures have not grown anything. (the staph could have spread to his blood causing sepsis or blood poisoning.) His flu swab was negative, so he is off tamiflu now, and not RSV or urinary tract infection either. The staph is enough to deal with! He will be able to go home by the weekend at the earliest.
So this has been a busy day! Cale and Joey came to the hospital, too. There are flu restrictions, so Joey entertained me while Cale spent time with Ron.
Although Ron had great care in the ICU, it is so reassuring to be back on the BMT floor with so many medical fiends. Once again they will be able to fix things, and they fill us with hope.
Still in ICU
Waiting for the doc and team here in ICU to make rounds this morning. Ron is eating a huge breakfast, and he ate a huge dinner last night after almost two days of not being allowed to eat. The first day he didn't care, but he was hungry all day yesterday. He is on 36% oxygen now, down from 100% when he first came to ICU. That is well within the criteria for being able to move to the regular floor in Mott. The move to Mott should happen this afternoon.
The PT is coming shortly to have him try walking. He has only been bed to chair. I started this blog entry much earlier this morning. Since breakfast he has had his "bath" and had the arterial line removed and monitoring leads disconnected. He continues to have 3 IVs but only using 2 of them now. Nice not to have so many tubes and wires going on.
I have no idea how long he will be hospitalized on the bone marrow transplant unit. They did tell us if a patient comes in not needing to use oxygen that that is how they like him to go home. If he needs to have oxygen at home, I will have more to learn.
All tests have been negative so far! He does not have the flu and not a urinary tract infection. Blood cultures and bronchial tests not back yet. As you probably know, xrays and CT scans of his lungs showed pneumonia. They also did biopsies of his lungs yesterday-- that could confirm GVHD of his lungs and/or help determine what organism is causing the problems. At least that is how I understand what the doc told me. The tests for the two viruses, CMV and BK which have made him sick in the past, are not back yet. His WBC is normal. As I tell Ron, you are never a dull moment!
I stayed at the Hampton last night, but I will move into Ron's room in Mott with him. It has a pull out bed for me.
The PT is coming shortly to have him try walking. He has only been bed to chair. I started this blog entry much earlier this morning. Since breakfast he has had his "bath" and had the arterial line removed and monitoring leads disconnected. He continues to have 3 IVs but only using 2 of them now. Nice not to have so many tubes and wires going on.
I have no idea how long he will be hospitalized on the bone marrow transplant unit. They did tell us if a patient comes in not needing to use oxygen that that is how they like him to go home. If he needs to have oxygen at home, I will have more to learn.
All tests have been negative so far! He does not have the flu and not a urinary tract infection. Blood cultures and bronchial tests not back yet. As you probably know, xrays and CT scans of his lungs showed pneumonia. They also did biopsies of his lungs yesterday-- that could confirm GVHD of his lungs and/or help determine what organism is causing the problems. At least that is how I understand what the doc told me. The tests for the two viruses, CMV and BK which have made him sick in the past, are not back yet. His WBC is normal. As I tell Ron, you are never a dull moment!
I stayed at the Hampton last night, but I will move into Ron's room in Mott with him. It has a pull out bed for me.
Monday, January 28, 2013
Another test of lungs
I am in a waiting room in the procedures unit;Ron is having a procedure to flush his lungs to be able to culture what is in there causing his pneumonia. They will also take a sample to biopsy. He had the same procedure in August. It is done under anesthesia, and he did not have any difficulty or even remember it in August. SO after all the excitement of ordering a huge breakfast and then waiting an hour for its delivery (they have room service), it arrived right when they were telling us that he could not eat until after this procedure that started at 3:00. I have food for him now!
He may stay in the ICU overnight, or they may move him to Mott during the night. I have a room close by at the Hampton Inn North, so will go there whenever it works tonight. I went to check in while Ron was having the procedure, took some things up, and most importantly, washed my hair!! I feel somewhat human again. I changed clothes in the car this morning. You do what you have to do. I had thrown things in before we left for the ER Sunday morning.
He may stay in the ICU overnight, or they may move him to Mott during the night. I have a room close by at the Hampton Inn North, so will go there whenever it works tonight. I went to check in while Ron was having the procedure, took some things up, and most importantly, washed my hair!! I feel somewhat human again. I changed clothes in the car this morning. You do what you have to do. I had thrown things in before we left for the ER Sunday morning.
Night in the ICU
Ron is doing much better this morning. He now has oxygen through a nose piece instead of a face mask, and the level of oxygen is much lower. He is sleeping soundly now. The doc has been in, and the group making rounds will be here soon. They are leaning toward a diagnosis of fungal pneumonia. CT scan verified pneumonia but did not have the appearance of a bacterial pneumonia. When he wakes up, I know he will be happy that he is allowed to eat this morning. He was hungry last evening. It was a scary day for both of us.
Thanks for your prayers, caring, and positive thoughts.
Love, Ron & Jan
Thanks for your prayers, caring, and positive thoughts.
Love, Ron & Jan
Sunday, January 27, 2013
University Hospital
I am going to blog because I can get information out to many this way. Ron was having difficulty breathing this morning. It had been getting worse for a day or two, but this morning he was distressed, so after throwing a few things in the car, we headed for the hospital. He felt bad enough that he wanted to go to the nearest hospital. He was seen immediately, put on oxygen, and bloodtests started. They contacted Dr. Mag at U of M, and there was no question but to take him by ambulance to Ann Arbor. He was in the ER at University Hospital where they ran many tests again. The initial chest xray in Coldwater showed pneumonia. He had had a CT scan of his lungs on Monday (when Ron was here for light therapy) which indicated problems, so he was scheduled to see a pulmonary doctor this week.
At this point he is being given an assortment of IV antibiotics and is on oxygen. He is in ICU because of the level of oxygen that is needed because his lungs aren't working well. We really won't know much more in test results until tomorrow.
We are getting freezing rain and snow here. I will spend the night in the hospital.
I know this infection is serious, but I trust them to fix things again. They put in an arterial line and 3 IV lines for his meds, so hopefully, a lot less pokes ahead. They can draw blood and blood gases from the arterial line.
At this point he is being given an assortment of IV antibiotics and is on oxygen. He is in ICU because of the level of oxygen that is needed because his lungs aren't working well. We really won't know much more in test results until tomorrow.
We are getting freezing rain and snow here. I will spend the night in the hospital.
I know this infection is serious, but I trust them to fix things again. They put in an arterial line and 3 IV lines for his meds, so hopefully, a lot less pokes ahead. They can draw blood and blood gases from the arterial line.
Tuesday, January 22, 2013
Light Therapy Begins Again: ECP
This pattern of two days in Ann Arbor a week is going to repeat itself several times. ECP will be two days a week for a few weeks, with a quick trip to Florida to break it up. We don't want to miss Matt's promotion.
The good news and the bad news is that it is winter...so less to do at home, but I am so hopeful that there won't be any more drives like yesterday's!! It was barely snowing at home and very windy, but we drove into a snowstorm, there were several accidents, and at one point traffic was re-routed.
A two hour drive took about 3 1/2 hours. We did arrive safely, but it is COLD!! The wind chill was -17 this morning when we came to the clinic. The high will be near 10 today.
Ron had been in a study for embrel/ECP light therapy August 2011- February 2012. It was to see if this treatment could serve as a preventative measure for graft versus host disease. However, Ron had acute GVHD almost immediately, and it has persisted so now it is called chronic GVHD. The flare-ups have come between periods of time where his symptoms were minimal.
Ron also had a CT scan of his lungs last evening to get a better idea of how GVHD is affecting his lungs. Ron's doctor appointment next week in addition to ECP will give us more information about this bump in the road. He was in good spirits this morning and said that he really felt good.
Prior to coming for his treatments, I rub a numbing cream into the crooks of his arms, really slather more on, and then wrap his arm with Saran wrap. He has IVs in both arms for this treatment, and they do new IVs on the second day too.
So we are hanging in there, and both of us are on board for whatever we need to do.
Love, Ron & Jan
The good news and the bad news is that it is winter...so less to do at home, but I am so hopeful that there won't be any more drives like yesterday's!! It was barely snowing at home and very windy, but we drove into a snowstorm, there were several accidents, and at one point traffic was re-routed.
A two hour drive took about 3 1/2 hours. We did arrive safely, but it is COLD!! The wind chill was -17 this morning when we came to the clinic. The high will be near 10 today.
Ron had been in a study for embrel/ECP light therapy August 2011- February 2012. It was to see if this treatment could serve as a preventative measure for graft versus host disease. However, Ron had acute GVHD almost immediately, and it has persisted so now it is called chronic GVHD. The flare-ups have come between periods of time where his symptoms were minimal.
Ron also had a CT scan of his lungs last evening to get a better idea of how GVHD is affecting his lungs. Ron's doctor appointment next week in addition to ECP will give us more information about this bump in the road. He was in good spirits this morning and said that he really felt good.
Prior to coming for his treatments, I rub a numbing cream into the crooks of his arms, really slather more on, and then wrap his arm with Saran wrap. He has IVs in both arms for this treatment, and they do new IVs on the second day too.
So we are hanging in there, and both of us are on board for whatever we need to do.
Love, Ron & Jan
Thursday, January 17, 2013
Check-ups at University of Michigan
We traveled to Ann Arbor Tuesday and Wednesday. On Tuesday Ron's appointment was with his neurologist--6months since last evaluation. At that time he told us that Ron could continue to improve for 2-3 years. His body took a beating from 7 rounds of chemo, the transplant, and all of the medications required for his complications. He has made good progress in 6 months. His tremors are gone; almost all of the numbness in lower legs and feet is gone. He can write well again and walks with a cane. He continues to have minimal balance issues. His persona has returned, and he can do complex mental tasks again.
Looking back there was a period of time in the spring when he could not write, could barely walk with a walker and needed to have someone with him helping support with a belt. He could not use a remote control for the TV because of the mental processing required and did not have finger strength to push the keys. He could not text, make phone calls, carry on a conversation, or even change position in bed. He also lost about 40% of his hearing and the vision in his left eye. Those were the days that I felt like I was in a dark place. Because it was.
So that puts things in perspective! When Ron met with his transplant doc on Wednesday, it was decided that Ron needs additional treatment for his chronic graft versus host disease which affects his skin and lungs. He will start Photopheresis light therapy (ECP)on Monday and Tuesday. This is the same treatment he had for six weeks after his transplant as part of a study he agreed to be a part of. This treatment will be given at Mott Hospital on the floor directly above the BMT Clinic. He is connected to a machine by two IVs. It draws blood, spins it in a centrifuge, separating the white blood cells which are treated with a drug and ultra violet light, and returned to Ron. This inhibits the new bone marrow from attacking his skin and lungs. Because it is not an immunosuppressive method, the goal is for Ron to not have as many infections, and his skin and lungs should improve function.
He will have more frequent treatments, weekly, to begin, tapering to monthly treatments after a few months. Ron's new marrow is working hard but is over-aggressive. Patients who have GVHD have less occurrence of relapse. The GVHD is believed to also attack any remaining leukemia cells: graft vs leukemia effect. The transplant achieved the goal of keeping him in remission from what the doc calls "a nasty leukemia". It is a balance. In Ron's case the GVHD has caused red blotchy skin especially on his arms and also affects his bronchial tubes. Because his lungs aren't as effective, he is susceptible to lung infection and has a chronic cough. Hopefully, light therapy will ease these symptoms.
Looking back there was a period of time in the spring when he could not write, could barely walk with a walker and needed to have someone with him helping support with a belt. He could not use a remote control for the TV because of the mental processing required and did not have finger strength to push the keys. He could not text, make phone calls, carry on a conversation, or even change position in bed. He also lost about 40% of his hearing and the vision in his left eye. Those were the days that I felt like I was in a dark place. Because it was.
So that puts things in perspective! When Ron met with his transplant doc on Wednesday, it was decided that Ron needs additional treatment for his chronic graft versus host disease which affects his skin and lungs. He will start Photopheresis light therapy (ECP)on Monday and Tuesday. This is the same treatment he had for six weeks after his transplant as part of a study he agreed to be a part of. This treatment will be given at Mott Hospital on the floor directly above the BMT Clinic. He is connected to a machine by two IVs. It draws blood, spins it in a centrifuge, separating the white blood cells which are treated with a drug and ultra violet light, and returned to Ron. This inhibits the new bone marrow from attacking his skin and lungs. Because it is not an immunosuppressive method, the goal is for Ron to not have as many infections, and his skin and lungs should improve function.
He will have more frequent treatments, weekly, to begin, tapering to monthly treatments after a few months. Ron's new marrow is working hard but is over-aggressive. Patients who have GVHD have less occurrence of relapse. The GVHD is believed to also attack any remaining leukemia cells: graft vs leukemia effect. The transplant achieved the goal of keeping him in remission from what the doc calls "a nasty leukemia". It is a balance. In Ron's case the GVHD has caused red blotchy skin especially on his arms and also affects his bronchial tubes. Because his lungs aren't as effective, he is susceptible to lung infection and has a chronic cough. Hopefully, light therapy will ease these symptoms.
Sunday, January 13, 2013
Winter returns...
Looking ahead to this week---Ron will have appointments 4 of the 5 days. He has physical therapy Monday and Friday, and we will be in Ann Arbor Tuesday and Wednesday. On Tuesday he sees his neurologist, and Wednesday he sees his transplant doctor and has a transfusion of zometa to strengthen his bones.
The symptoms of his last flare up are resolving, but he continues to have a cough which could last for awhile yet, and his arms continue to be blotchy where his skin is affected by cGVHD. Other than his arms, his skin outbreak is healing well. Best of all, his strength is returning. He continues to use a cane to walk safely; it not only helps him with balance, but he also uses it to test surface height especially on curbs, stairs, and doorways. Ron continues to learn how to compensate for his vision loss. Now that the new golf season has started, he realizes that he cannot track the path of the golf ball on TV. Again he adjusts. It is good to see that he continues to take notes on things, makes detailed lists, and puts all activities on a calendar. He is also re-reading one of his favorite books.
Winter has returned after a few warm days. We watched the ice go out on the lake, but it should return again this week.
Be safe on your winter travels.
Love, Ron & Jan
The symptoms of his last flare up are resolving, but he continues to have a cough which could last for awhile yet, and his arms continue to be blotchy where his skin is affected by cGVHD. Other than his arms, his skin outbreak is healing well. Best of all, his strength is returning. He continues to use a cane to walk safely; it not only helps him with balance, but he also uses it to test surface height especially on curbs, stairs, and doorways. Ron continues to learn how to compensate for his vision loss. Now that the new golf season has started, he realizes that he cannot track the path of the golf ball on TV. Again he adjusts. It is good to see that he continues to take notes on things, makes detailed lists, and puts all activities on a calendar. He is also re-reading one of his favorite books.
Winter has returned after a few warm days. We watched the ice go out on the lake, but it should return again this week.
Be safe on your winter travels.
Love, Ron & Jan
Tuesday, January 8, 2013
Sad Duck with Migrating Geese
Hundreds of migrating Canada Geese settle at Gilead Lake each day. They roost on the ice and swim where there is open water. Sad Duck enjoys all of the company but will be sad again when the lake is totally frozen over, and the geese have gone.
Ron's bloodwork in Coldwater today showed that he continues to improve. He also had a physical therapy session. It tires him, but he enjoys getting back at the physical activity, and it gives me a chance to run quick errands while we are in town. I checked (Ron's: My U of M Health Report online) the results of last week's bloodwork at U of M. The IGG test was very near normal which shows his immunity is very much improved since its 303 level prior to the IVIG infusion. Cautiously optimistic that this train is turned around.
Love,
Ron & Jan
Sunday, January 6, 2013
Grinding...16 & 1/2 months since transplant
Hope all of you are enjoying being on the other side of the holidays. Even I feel like we are returning to our schedule. Ron has a dental appointment and two physical therapy sessions this week. He will also have a weekly bloodtest on Tuesday and phone call with his doc to check progress. It seems like he will have a good progress report. His skin is healing, and he continues to cough, but it is not as rough as it was. He does not run a fever.
The current goal is to be well enough to travel to Florida in February to Matt's promotion to Lieutenant Colonel. Ron cannot drive, so it will take us longer to travel. We are driving to avoid being locked into dates and restrictions in packing. I always pack one bag with his medications and medical information. Obviously,we have to stay flexible. We are fortunate to not have other commitments that restrict our decisions.
I did not make any resolutions although we do have some projects in mind, and the seed catalogs have started to arrive in the mail. It is important for both of us to continue to set goals.
Love and wishes to you for a happy, healthy new year,
Ron & Jan
The current goal is to be well enough to travel to Florida in February to Matt's promotion to Lieutenant Colonel. Ron cannot drive, so it will take us longer to travel. We are driving to avoid being locked into dates and restrictions in packing. I always pack one bag with his medications and medical information. Obviously,we have to stay flexible. We are fortunate to not have other commitments that restrict our decisions.
I did not make any resolutions although we do have some projects in mind, and the seed catalogs have started to arrive in the mail. It is important for both of us to continue to set goals.
Love and wishes to you for a happy, healthy new year,
Ron & Jan
Thursday, January 3, 2013
Two Days in Ann Arbor
Ron's doctor had added yesterday's appointment when Ron's skin outbreak continued to progress even with a higher dose of his med for inflammation. Doc Mag said that we're not going to dink around any longer with a small increase in meds. Also, his white blood count had returned to above normal since our return home from his hospitalization December 17-19. After bloodwork here in AA yesterday and his examination, Doctor Mag ordered two infusions "to turn this train around.". His white blood count had continued to rise, and the bloodtest for the BK virus had increased (measured in "copies"--48,000 for you medical background readers). The two infusions are medrol for skin inflammation and cidofovir for the virus. He had a chest xray which did not show pneumonia. Ron is also on a second antibiotic for two weeks for bronchitis-like symptoms. His prednisone was increased from 10 mg daily to 40mg for a week.
They also suspected he was slightly dehydrated which contributed to a 12 pound weight loss since 12 December. He drank A LOT yesterday afternoon and evening and weighed +2 pounds when weighed today. So as a favorite nurse, Kathy, told me when Ron was in the hospital last month: this is the life of a bone marrow transplant survivor. Flare -ups, infections, and bumps in the road are to be expected but will continue to be more spread out, and improvement will continue.
They also suspected he was slightly dehydrated which contributed to a 12 pound weight loss since 12 December. He drank A LOT yesterday afternoon and evening and weighed +2 pounds when weighed today. So as a favorite nurse, Kathy, told me when Ron was in the hospital last month: this is the life of a bone marrow transplant survivor. Flare -ups, infections, and bumps in the road are to be expected but will continue to be more spread out, and improvement will continue.
Saturday, December 29, 2012
Grinding here at the end of 2012...
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".
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".
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.
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