Oxygen Helping Ron

After ten days home, we have another new normal that includes oxygen for Ron. That meant making arrangements to have deliveries made in Bowling Green and Gilead Lake. The electric oxygenator made the trip. Then we use tanks when in the car or out at a store. All was going okay until we had a power outage for a few hours during a long period of thunderstorms. I called Consumers to get the approximate time for the electricity to come back on...was going to cut it fairly close With the tanks on hand, but it came back on 2 hours earlier than the estimate. Whew! Ron's oxygen requirement is pretty much what it was when he was discharged.
Ron has return appointments for a detailed CT of his lungs and an appt with a cardiologist in July. He also has an eye appt and is scheduled to have more eyedrops made from his blood. All of our kids and families will be visiting around the 4th of July. Special times and memories to make!

Check Up in Ann Arbor

Ron had bloodwork and an appointment with Dr. Mag and Tim in the Bone Marrow Transplant Clinic on Thursday morning. No red flags in his blood tests...in fact Ron never had a fever or white blood cell count out of the normal range with this pneumonia in both lungs. His oxygen level didn't drop low because his heart worked so hard to keep enough oxygen circulating. The result was chest pain/pressure and a mild heart attack. That's what took us to the ER in Bowling Green. He has a follow up with a cardiologist at U of M. We very much liked his cardiologist at Wood County Hospital, but in spite of the travel time to AA, it is so much easier and makes sense to go where all his medical history is. A cardio team at U of M monitored his heart activity and made the decision to do the stress test, not a cath when he was in the hospital. They will be in charge of his heart meds. A pulmonary team monitored his lung disease, and Ron will have a follow up detailed CT of his lungs in July. His lungs have worsened since pneumonia in August. It is possible that tapering the ECP treatments since last summer allowed the chronic GVHD to do more damage to his lungs, but we don't regret that decision. He has bacteria colonized in his lungs, so an infection is never completely cleared. Dr. Mag suggested resuming ECP, but Ron says he is done with that, so we asked about again trying a pill to treat the graft versus host disease. Ron is allergic to the two that are commonly used. (The reason for all the ECP) So for the time being, Ron keeps his central line, and he is taking a newer pill to treat GVHD. Fingers are crossed that no side effects with this one.
We have proclaimed a medical vacation for 3 weeks. The goal is to regain some strength before resuming appointments. The other new issue is that Ron now requires oxygen at home. He had his last IV antibiotic for treatment of his pneumonia this evening. His meds are 3 antibiotics in pill form, an antiviral, antifungal, prednisone, 2 heart meds, mucinex, 3 inhalers-albuteral, Advair, and Spiriva, 81mg aspirin, jakafi (the new GVHD med), and celexa. I think he has a cast iron stomach!
We are so looking forward to all 4 of the kids and families joining us at the lake during "our vacation".

Nurse Jan

I always appreciate even more what Ron's nurses do when we're back home. Also, after having several days of adrenaline-driven energy, I feel a bit of a crash. Ron's pneumonia seems to continue to affect his heart rhythm and requirement for a little oxygen. Hope those things have resolved when we go back up to AA on Thursday. Ron's new medications are Coreg and Lipitor. We never know how Ron will handle new medications, so I am mother hen keeping an eye on things. His bloodwork on Thursday will give valuable info. We did not request setting up a home nurse visit or PT this time. Ron hardly walked during the time he was in the hospital.
We hope to return to the lake on Friday. That depends on Thursday's appointment. If nothing else, we are flexible. I did get out in my BG flower beds today. I can hardly believe everything that is in bloom, and I had brought a few things to plant two weeks ago. Done! My therapy.

We are weary but HOME

When the doc made rounds this morning, he asked Ron if he would like to go home. Yes, of course! Too low oxygen level with any exertion meant we would need oxygen at home for the first time. Ron also had a swallow test moving xray this morning. Because this was his 7th pneumonia, they wanted to rule out any swallowing abnormality that might cause food to go into his lungs occasionally. All normal. That still could have happened because occasionally he chokes and coughs when eating. He has some new strategies like sit up straight and one bite one swallow. Because he has lost his teeth due to GVHD, his menu is limited.
Ron mostly had nurses that he has had previously, and the two new ones were amazing. It is so good to have caregivers who know his history. We have been through a lot together. He also had an immunity infusion and his last ECP while in-patient. I hope this tunes him up good for the coming weeks when the kids and grandchildren come to the lake. I also hope the oxygen is a temporary intervention. But if It helps him to be more active, it is more than worth it. We will go back in a week to see his regular transplant doctor. He goes back to his pulmonary doctor in 6 weeks for follow up testing.
His new meds are for his heart. His heartrate continues to have extra early contractions in the ventricles, but so much better. I know that I have become numb to a lot of the things he deals with, but the new heart issues really scared me. I didn't even know that I could still feel that fear. So I pray that this pneumonia resolves itself. They are not keeping him on the IV antibiotics as long as they did in August.
Sleeping in a bed tonight is going to feel great! In addition to caregiving, I have plenty of things to do here in the villa and flower beds to keep me busy. Thanks so much for kind words, thoughts, and prayers through this latest crisis.
Love, Ron & Jan

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.