I am getting very good care here at the Fred Hutch cancer center hospital, a carve out floor dedicated to blood transplant patients. The only real problem is that the larger entity is the University of Washington hospital and with that their food service. The good part about their food service is I can order off a menu for each meal. Then comes the trying part which is the wait to have the food delivered. Average wait time is 1-hour although it is often longer so that when I complete one meal it seems as if I need to order the next one.

On the serious side, not too much activity today. Lots of IV fluid and medication. A few additional tests, blood and nasal swabs. My ENT consult has started me on a cortisone sinus wash and Afrin nasal for 3-days. I continue to have a pretty significant hearing loss, which is very frustrating.

I am continued on high flow oxygen at a 6-liter flow to keep my O2 Sat at about 94. I will definitely need to be on a lower oxygen flow before I can be discharged.

Tomorrow I will have a bronchoscopy, placing a camera down into my bronchial tubes, to take a look and obtain some material for cultures. Hopefully in a few days we can zero in on the infectious culpirite and receive the applicable antibiotic. Presently, the antibiotics I am receiving are broad spectrum, pretty much a shotgun approach until we know.

I am about to get through night #3 here. I have a sense there will be many more nights to come before I am discharged.

Hope you are staying cool, as from what I read the country is sweltering.

Larry and Sharon

The day +44 has a nice palindrome ring to it. It also has been quite a day for testing.

When I left off last evening I was taken down for a sinus CT scan. No surprise to me that my sinuses are all full up as are my eustation tubes and middle ears.

The day today began with consultations from Pulmonary who went over the chest CT scans and showed me the area of pneumonia. No specific cause, however. They have recommended that I have a bronchoscopy exam to look down my bronchial tubes and take washes and samples for the lab to perhaps zero in on what is the bacteria that may be giving me trouble. This is scheduled for this coming Monday.

The Infectious Disease team followed and decided until we have a definitive answer they started more powerful broad spectrum antibiotics. In doing this the Augmentin I have been taking for the last 6-days is stopped.

The bone marrow transplant team also paid me a visit and is managing my ship by coordinating all these consultations. They also reiterated that I am quite vulnerable and what I am going through is nothing to take lightly

Putting all of these groups together, it has been a day of more blood testing and many cultures from my nose looking for viruses and other bacteria. So far, I am pretty clear of viruses except the Rhinovirus which as still positive.

At the end of the day, I had thought all consults were done, and in walks the ENT team. They agreed my ears are clogged as well as using a small camera to look up my nose and of course I am quite congested. They have some ideas to help me with nasal washes that includes a steroid component.

Lastly the respiratory therapy consult came in to drop off a device to help loosen whatever mucous might be hanging in my lungs.

Sharon and I were amazed at the end of the day the attention I am receiving within 24-hours of our arrival here and how the nurses and doctors are so focused and motivated to figure this out. There were times during the day when I was falling into my – oh woe is me – thinking as it is very stressful to understand how I am going to recover from all of this. And I will.

For the scorecard, my O2 Sats continue to be a challenge. I am on constant oxygen and was up to a 6-liter flow at one point to keep my numbers in an acceptable range. For the record, of course most people do not need any supplemental oxygen. For those who do a flow of 2-liters is common. 5-liters is very high flow, and in my years of medical practice I can’t recall anybody requiring a higher flow which is where I was at for much of the day. As I write this I am getting a 4-liter flow. We hope as time goes on here to be able to wean me off. I must admit with the oxygen supplement I do feel less short of breath. I suppose this is why the oxygen bars in the Las Vegas airport are so busy.

It is not ideal living in a hospital room especially given my condition I can’t leave the room. Sharon is by my side whether I am napping or dining and we are trying to make the best of it. She is definitely part of my hospital care team. More to come as all the test results roll in.

Larry and Sharon

Not a great day today and a bit of a worrisome turn of events. This morning I was back in the clinic for my infusion and I had an episode of nausea, vomiting, and my continuing saga of low O2 Sat numbers.

Long story short, I am back admitted to the hospital for observation of my oxygen levels and evaluation of possible pneumonia as seen on a chest CT scan done today. I will also have a sinus CT and hope they see a reason for my temporary hearing loss.

Tomorrow they will bring in an ID consultant and depending on my course a pulmonary consultant as well. I hope this will be a short stay so I can get back to my daily walks. More to come tomorrow.

Larry and Sharon

Kind of a mixed bag today. My scorecard is looking good. Nothing to complain about in my blood counts. As I have been reporting WBC, HCT, Platelets, and ANC counts all holding steady today.

What is not so great on the scorecard is my O2 Sat. I had two clinic appointments today, morning and afternoon. My O2 Sats were in the high 80’s to low 90’s. There is concern and today I brought home an inspirometer, the kind a person might get after a surgery to open the lungs. I will use that and in conjunction with the antibiotic I am taking hopefully this will resolve.

On the good side of the scorecard is the fact that for both the clinic visits today I walked up the hill and back down. So I got my 2-miles of walking in with a couple of hill challenges.

As I think more is talked about in the mental health arena, I will say that I am a bit frustrated and worried. I know I am not yet 1/2 way to my going home endpoint, and certainly not even close to the year I was told it would take to recover. Having said that my hearing loss is troubling me. And before we arrived here, from my CAR T therapy in 2019 I knew my lungs could be problematic. As I said the team here is overseeing every aspect of my recovery and I have a lot of faith in them. Sharon is working hard to support me and given my fatigue I cannot chip in to help her. We have cut down on our daily conversations because frankly, I just can’t hear. This is no easy road and I am in awe of all who have come before me and survived and thrived thereafter. I plan to do the same.

Larry and Sharon

Another day gone by. I was able to walk up the hill today for my appointment. That is getting more regular now. While in the clinic I had an appointment with a Palliative Care Physician. I have these once a week. They try to give suggestions on how to lessen the side effects of transplant. A few weeks ago I was talking about how often I have to get up at night to relieve my bladder. I call it old man’s pee disease. So here is too much information as the suggestion was to keep a urinal at my bedside so I don’t have to walk the hall to the potty. It actually works pretty well and gets me back to sleep.

At another visit, as I think I have mentioned, they said to beat my fatigue I ought to go out for walks. Although it seems counterintuitive, as I have been reporting I walk every day. At the visit today I reported I am walking 2-3 miles/day. The doc was amazed and said she had not other transplant patients who were that active at the stage I am at. I guess that’s just how I roll. Now if I can get my hearing back, I will be much less frustrated. Sharon and I have figured the compromise on our screen time as I have been able to enable closed captions on most of the shows we watch. It works.

Tomorrow we meet with the nutritionist and of course I receive my IV therapy. Hope your summer is going well.

Larry and Sharon