A Busy Morning

After being away from the room 11-5:00 yesterday for the stress test, I guess that I expected the morning to not be so busy. Ron had his 135th extracorporeal photopheresis treatment in the room this morning. ECP. The ECP machine is large but on wheels and portable. That is his last treatment, and his central line was going to be removed. If he doesn't have to go home on IV antibiotics, it might be removed. The lab is still working on which antibiotic will be most effective, and it looks like he will go home with oxygen. Something new for us. The projected day to go back home to Bowling Green is Friday. Blue will meow for a whole day when we get back. Cale is taking care of his needs while we are away.
Ron also had a preliminary swallow test, and now a moving barium xray of his swallowing motion has been ordered. Coughing while eating and food getting into his lungs might be a contributing factor to his too frequent pneumonia. GVHD can affect the swallowing motion of the esophagus. So there are answers still waiting to be figured out, but the field is being narrowed.
Two weeks ago he was on Cedar Lake Golf Course with brother-in-law George playing "modified" golf. A week ago is when this hospital adventure started.

Some Good News! Stress Test Results

We were just told that the abnormal heart activity was/is being caused by the pneumonia, not the structure of the heart, and so nothing like a stent or bypass is needed. A heart cath is not needed. The focus will be on treatment of Ron's lungs. He will likely need an extended period of IV antibiotics after he is discharged. Not sure yet what all that means in regard to his ECP treatments he missed, but he will be keeping his central line awhile.

Stress Test - Cardiovascular Center- U of M

It was decided that Ron would not have the lung Bronch scope at this time. His sputum culture is growing bacteria to use in sensitivity testing to determine the best antibiotic regime for him. He is also growing the same yeast that is used to make beer...interesting! A bronch is still possible, but not probable because the culture is giving them info.
After much discussion and teamwork between pulmonary, cardiology, and bone marrow transplant, a cardiac stress test was ordered. It can take 3-6 hours, and that is where we are. They are about to begin. His stress test is chemical to simulate exercise. It is possible that they will find results that he needs a heart cath to take care of a blockage, probably using a stent. Ron is willing to have that done to improve quality of life, making it easier for him to do normal activities. At this time he is very limited in even being able to walk more than a few steps. Cardiac has said that they would not do a cath until his pneumonia is clearly under control. This is the 7th hospitalization for pneumonia since 2012.
Thanks for all prayers and positive vibes being sent our way. So glad that Cale set up the blog for me in 2010, so I have a means to get the same information out to all of you.
Love, Jan

Decisions

Ron has had pulmonary team visits, cardiology team visits, wound care visit, and BMT team visit. He feels a bit overwhelmed and has had a sleepy day. He has been taken off IV antibiotics except for one--cefepime. The pulmonary team is waiting to see what all the sputum culture grows before they make the decision about doing the bronch scope of his lungs. They have evidence of fungal and bacterial pneumonia. His lungs have worsened since August.
His wounds are now minor, nothing beyond what I have taken care of before.
They are certain that Ron has coronary disease. If they do a heart catherization, it will be when the pneumonia is resolved enough for discharge. The other path to take is a stress test and treat medically, but the stress test might also indicate that he needs the heart catherization. Likely there are stents that would be placed at that time. Being discharged by Wednesday is not going to happen.

Big Day Ahead of Us

Today we should become well on our way to finding some answers and determining a treatment plan. Both a pulmonary team and a cardiology team will be visiting Ron, and necessary tests will continue. That could mean a bronch scope under anesthesia, a stress test, and additional bloodwork, and ?? The Bone Marrow Transplant team coordinates everything. I will update as we have new information and time to do so. A wound doctor will also check on the healing of some skin tears and his leg injury. His leg is almost healed; that injury occurred in February. As other test results come in, his treatment plan will be adjusted. He tested negative for any respiratory virus infection, but he does have pneumonia which is bacterial.
Thanks for your concern. The cardiac problems are new this time, so that is where a lot of my questions and worry are.

Email Updates and Sunday Morning

Ron rested pretty well last night, and we had a "typical" Sunday morning with coffee, breakfast, and the Sunday newspaper. His antibiotic IVs continue, and he has also had infusions to keep his electrolyte levels where they should be. They run very close, but they told me with a heart issue, it's important to monitor them daily. (Magnesium, potassium, and phosphorus I believe) the first cardiologist came this morning, and the team will visit later today. I am glad that they are on this today.
Email Updates:
To the right of this entry there is a place to sign up to receive updates by email when I post them. It is a fairly easy process. You enter your email and follow the prompt to enter a case sensitive verification code. Then an email to finish the process is sent to you. With one more click, you are set up to receive entries by email when they are posted.

Settling in at Mott Hospital: Bone Marrow Transplant Services

University of Michigan bone marrow transplant services are located on 7th floor of Mott Hospital...connected to University Hospital. 7th floor is where Ron comes to the BMT Clinic; it's directly next to the inpatient area where Ron is now.
The condition that is new is a cardiac problem. PVC premature ventricular contractions. He has these extra heart beats occasionally at rest, but they occur frequently with any exertion-- even standing to use a urinal or taking a few steps into the bathroom. He has electronic monitoring, so his monitor beeps as his heart rate looks like it varies quite a bit. There will be a lot of data for the cardiologist, and I know enough to know that I really don't understand how to interpret the monitor. So he is on a new med for this condition, and the dreaded belly Lovenox shots have resumed so he doesn't have a blood clot problem. Not sure what to expect in the next few days. This hospital stay will probably be about 5 days, so things planned for this week will be changed.

Back Home in Mott

It's a feeling of relief to be back in familiar surroundings with nurses that we know. They swarmed in to Ron's room and made "quick" work of the admitting process. They have collected blood (And other bodily fluids) for several tests, are reviewing the info and tests on CD sent from Bowling Green. Ron will be seen by a cardiologist here. Both in the room and in the ambulance he has had periods of time when his heart rate fluctuates too much. 60s to above 100 in a matter of ten or so seconds. It is much more steady now. 70s-80s. Cardiac issues are new territory for us.
So it is a roller coaster ride; scary when the alarms went off about his heart rate; the PA and nurse were already in the room. Ron had a good late lunch and is sleeping now. I am going to try to take a nap, so we can both be sleeping during the Tigers game!
Know that we're in good hands here, and any specialists needed will be called in.

Still Playing the Waiting Game but Making Progress!

Transfer to U of M from another hospital has always been much quicker in the past because it was an ER to ER transfer. Ron was admitted to a room here after his evaluation in the ER, so his transfer to AA will be to a hospital room (not to the ER) in University Hospital or Bone Marrow Transplant Unit at Mott Hospital. I just talked to admitting at U of M, and they somewhat assured me that the transfer would be today as discharges are scheduled. Probably afternoon some time. Ron has been accepted by an admitting doctor there---a hospitalist in Internal Medicine. His prior infectious disease doctor's department was internal medicine. So that probably means University Hospital.
The admitting doctor here just came to see us, and all numbers are improving. His white blood cell count is already back in the normal range! He has talked to the cardiologist here and in AA. The heart enzyme warning could just have been related to pulmonary stress/pneumonia, not a mild heart attack. My guess is that the heart echo test assisted in coming to that conclusion.
Now the nurse has come in and told us that he will be admitted to Mott Hospital where the BMT unit is, and he has a new admitting doctor there. Yeah!! They know Ron's story, so that makes it much easier. The doctor told us that the ambulance is approved and so that shouldn't be another big wait time. Also, again they're telling us afternoon departure from here. Things are definitely looking better.

Quick Update

As soon as U of M has a bed for Ron, our BG hospital can request an ambulance to transfer him. I feel like his care has been good here, and they have been in contact with the transplant clinic, and the clinic has called me, and we have communicated through the patient portal. Ron's nurse today was a sixth grade student of mine. He has the same nurse tonight as when he was admitted. Since there is a small chance that his transfer will happen during the night, I am staying in the room again with him. I was able to run to the villa this afternoon, pick up a few things, and fix up Blue the cat for a couple days. We are ready to go to Ann Arbor as soon as a bed is available.

Change in Plans: Wood County Hospital

Ron has been a patient at Wood County Hospital in Bowling Green since Thursday mid-afternoon. For a few days he has had more fatigue than usual when walking even short distances. Other symptoms were chest pressure/pain and high heart rate. His oxygen level has been low normal when at rest. After walking it would take a few minutes to "recover".
I told him that I thought he should be checked at the ER, but first he had to agree to go. When he agreed that he should go, I knew it was serious.
Tests have been done to check for blood clots in his lungs, pneumonia, and an echo of his heart. He has also had routine bloodwork, and since he had chest pain, they are also checking his heart enzyme level. They have determined that he does have pneumonia but no blood clot in his lungs. They also think he might have had a slight heart attack. He does not have a fever.
So now we are waiting for arrangements to be made with University of Michigan Hospital for transfer. He has been started on IV antibiotics. The admitting doctor here believed that he should be admitted where all of his medical history is and where there is an infectious disease doctor. The cardiologist thought he should be treated medically for the heart issue and not do a cath at this time because of all other factors.
Ron is sleepy and cooperative so far although he is disappointed to be once again in the hospital. Because he is on an IV, he will have to be taken by ambulance, and I will drive up. There is no word on when that will happen.

Cruising Through May in our New Normal

Usually there is an area of concern to feel stressed about, but that has become my normal. Slow healing wound on his shin, fast heart rate, low oxygen saturation, skin tears, weakness, sleeps too much, dry, burning eyes, odd behavior, skin changes, but these things come and go, sometimes quickly, so I just wait them out. As a kid, my Mom would not take us to the doctor until after 3 days of symptoms. If I called the clinic about everything, I would be a nuisance. Those early months after the transplant when we still lived in Ann Arbor and had appointments every week, there were times when I couldn't believe that he wasn't admitted. So there have been many nursing skills acquired over the past 6 years, and this is the 7th spring I've seen spring arrive in AA.
This year with appointments farther apart, I have been able to enjoy spring gardening in BG and here at Gilead Lake. I am more than halfway through a big mulching project. 90+ bags! Today we went out on the lake for over an hour. The steps were quite a challenge for Ron today. I so admire him for wanting to go. He has been very sleepy the last two days, so I have been out in the yard more. We have over a week more here, then back to BG for appointments. I am learning to get more help with some things. My sister's husband continues to mow our yard, and a yard service delivered the mulch and unloaded it next to the areas to be covered. They also weed-whacked our steep hill down to the lake. More than half is groundcover and perennial flowers. Always something in bloom.
Things are still on track to discontinue ECP treatments in early June and have Ron's central line removed. If his shin is healed by then and there are no new skin tears, he will be able to take a shower without any body parts wrapped in Saranwrap. I know that hasn't been the case for at least 4 years.

Moving on...

There will be a new stage of treatment for Ron after May. He will have two more extracorporeal Photopheresis, ECP, treatments in early June, and this treatment will end. So Ron will have his central line removed. He will have had a Neostar almost 4 years of the almost 5 years since his transplant. He has had a neostar during his ECP regimen the past 3.4 years. 137 treatments after June's. Hopefully, his chronic GVHD symptoms will not return. What a mixture of excitement and nervousness I am feeling about this change.
Ron's new bone marrow is producing blood cells in or nearly in the normal range. The only significant deficiency is in his immunity products, so he will continue to have immunity infusions. He is progressing to having those infusions 2 months apart. (From monthly infusions for a looong time) There are really no improvements in his cognitive and physical changes. Ron continues to do odd things like tear napkins up into small sections, label everything, use highlighters and white out excessively, and shave off his eyebrows, etc.....all harmless. He uses a cane some if I am holding his other arm, walks slowly with his walker, and we use his wheelchair if it is a situation that requires some distance to cover. I do feel like we are in a stable routine.
The wound center here in Bowling Green is seeing Ron to help us get his leg wound healed from his fall out of bed in March. They are so thorough and professional...very impressed! Somehow he broke the brake handle off his walker when he fell out of bed during a bad dream. That is probably how he gouged his leg.
We plan to spend more time at the lake house over the warm months. So lucky to have two homes that we love and enjoy!

The Donor Revealed!

So very exciting this week to receive email and a picture of Ron's donor from Sweden!! It feels like the circle is completed with having this information. It might be my imagination, but I think there is a resemblance of him at age 50 (now) and Ron when he was 50. Amazingly, when Stefan registered in the Tobias Registry of Sweden, he was a college student over 25 years ago. Perhaps you remember that Ron had no matches in the United States, so the world registry was searched for a match. There were 3. One was considered "too old", one was not available, and Stefan immediately agreed to be Ron's donor. To harvest stem cells from the blood, a series of injections are given over a period of days to boost the number of cells. Stefan had a procedure to harvest these cells, and the infusion was flown from Sweden to Detroit, then traveled to the University of Michigan Hospital in Ann Arbor. The transplant infusion looked very much like a blood transfusion does. We are so grateful that Stefan joined the registry and then agreed to be a donor without hesitation.

Ft. Myers, Florida--6 years ago

We are near the 6th anniversary of Ron's first acute leukemia diagnosis. Although I try not to dwell on it, as with any extreme experience the events seem to be etched in vivid detail in my mind. The thing that has changed the least is how stoic he is. The biggest adjustment I have now is having less appointments to fill our schedule. I bet that sounds strange, but when the majority of your time for so long has been filled with a full medical schedule, backing off is an adjustment, too.
Ron will have his ECP light treatments for 2 more sessions. That means 2 treatments at the end of April and 2 treatments mid-June. His Neostar central line will be removed. Then he will have quarterly appointments and hopefully, his health status will remain steady. It seemed really strange to inventory medical supplies with an end date in mind. Medical supplies to care for the central line are delivered monthly.
Ron and I have enjoyed the NCAA basketball tournament...even though our favorites are already out. We have had a variety of weather here at the lake. Matt put the dock in for us this week while his family was here, and the pontoon has been delivered, and we've been out on the lake. Hope everyone has had a happy Easter and is/has enjoyed a spring break.

Wow! March has arrived!

I am calling it "the winter that wasn't". Where is the happy medium? Our daffodils are peeking out, and we have had warmer days but very windy.
Things have remained "about the same" in regard to Ron's health. That means that there have been a couple issues to deal with but not necessarily a crisis. He had a respiratory "cold" and I packed things for a hospital visit, but his regular antibiotic and antiviral medication fought it off. His oxygen saturation ran lower for a few days, but as is usual for him, he didn't develop a fever. Next on our agenda was 2 falls about a week apart. He fell backwards and hit the small of his back on our bedrail, leaving a big bruise and possibly a cracked rib. We did not go for X-ray or doc appointment. The second fall was more serious. He kicked during a dream and fell out of the bed, hitting the walker, cane, and possibly the night stand. He had marks from the top of his head to the top of a big toe. Because of quite a skin tear/ gouge on his lower leg, I could not help him get up. Our usual strategy is to get on hands and knees, bring a chair for him to raise his upper body, then help him up from his knees. I had to call 911 for paramedics. They gave him the choice of going to the ER or not…well, guess what? He didn't want to go to the ER. I will know if there is next time, to tell them at the door to not offer a choice. He probably should have had his head wounds and leg wound checked. The skin tears on both arms were what I consider routine now. The next day we returned to BG, and the home nurse did make a visit. He has a big bruised area on his left cheek, and scabs on the top of his head. The arms' skin tears are healing well; the leg wound will take awhile. Since paramedics and a home nurse have checked things out, I will keep doing what I am doing. We go back to Ann Arbor in 2 weeks for treatments and an appointment with the Bone Marrow Transplant Clinic. That will be 6 weeks between appointments which is the longest gap in 5 years. I feel confident that 6 weeks between ECP light treatments will be enough to avoid a flare of graft versus host disease.

Just adding this picture from last summer of sisters Abby and Lily (Andrew and Lisa). They just adore each other. Abby recently drew a life-size picture of herself for Lily to have so she wouldn't be lonely for her on school days.
Love, Ron & Jan

# 50 Valentine's Day as a Couple

I decided to add this collage here….the one I used on Facebook on Valentine's Day. If you did the math, Ron and I have been "a couple" since we were 17 and 19. We met when we worked as a bus boy and waitress at an Indiana Tollroad Hostess Restaurant in the summer of 1965. He entered his senior year of high school and I entered my sophomore year at Ball State University that fall. (now 18 and 19 in the fall) Both of our hometowns were near the Michigan-Indiana border. Mine in Brighton, Indiana and his in Burr Oak, Michigan. Now THAT was a loooong time ago! We married in 1970.

And what brings you to U of M today?

That opening with a new doc always takes me by surprise. (And where should I start?) We liked Ron's new Pulmonary doctor. Before the appointment with her, Ron had a pulmonary function test. I was pleasantly surprised that there has been no progression in the structural damage to Ron's lungs. That is the best case scenario; the damage can't be reversed. That being said, there is no change in his medications, and we were told that his lung infections/pneumonia will be treated in the hospital whenever he has them. Pretty much inevitable periodically, so I am to continue being vigilant about giving him his medications and get him to the ER quickly when there is a crisis. (Or call 911) His lung function is about 1/3 of what would be normal. His oxygen level is low normal at rest, and he can quickly have shortness of breath with exertion. So he doesn't have far to drop to be in crisis. He is going to have a six minute hall walk test to determine how his oxygen level changes with mild exertion. We scheduled it in March when he has his next treatments and doc appointment.
Today Ron had an immunity infusion to give him a boost. We were at the hospital 6 hours; he has a room like a hospital room and bed. That infusion took longer than usual; his blood pressure was running high, so we had to wait until it came down to 160s/80s. I am always thankful that he has his central line, so he doesn't have to have an IV. This morning I had to drive in heavy snow part of the way, so even though we allowed extra time, we were 20 minutes late. We have never skipped an appointment and only been late one other time...hundreds of appointments over the last 6 years. There were numerous slide-offs in a 30 mile stretch that really slowed things down for awhile.
The two Amish women who help clean at the lake are coming tomorrow. I am looking forward to seeing them...and having a very clean house!
Feeling peaceful at Gilead Lake.
Love, Ron & Jan

Super Bowl Sunday

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

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.