A bit of a turnaround of events today as when I woke up this morning I was told not to eat or drink anything – except water for my meds – because a bronchoscopy was scheduled for me. As I wrote yesterday there is a lot of discussion amongst my consultants. My transplant attending on rounds this morning said he sat down with the radiologist and the CT scan from this past Friday definitely was consistent with an aspiration pnemonia.

So off to the surgical suite I went and the bronchoscopy resulted in a fair amount of mucous material obtained. Now we wait for the analysis and cultures which could take many days. I was told I could be hospitalized for another week depending on how this goes. My head is a bit frustrated by this although I am seeming to improve.

My constant oxygen needs were lowered to 2L of flow. That is a nice normal level for those who need some oxygen support and from this my O2 Sat is in the low 90s.

I have not been reporting on my scorecard although as an inpatient I am having labs drawn every day. On that note, my platelets are good, as is my WBC and ANC counts. My Hb and HCT are down a bit to 10 and 30 respectively. When I arrived here my HCT was 36 so I am down some red cells. Hard to say exactly why. It could be due to all the blood that is taken for testing, or the fact that I am sick or various stages of hydration that I am in.

The best part of my day today was that Sharon brought me a tuna sandwich. Delicious and just the way I like it. We are formulating some plans to bring in food for me as the dining options here are not very appealing to my taste buds, which by the way have changed so that many foods I eat now taste overly salty. That anomaly goes along with my hearing which is still very problematic and my sense of smell which left me some years ago after all the chemo I had leading up to my CAR T therapy in 2019.

We are taking this day by day as the adventure continues.

Larry and Sharon

Interesting day today of competing thoughts of what is ailing me. No matter the thoughts, it seems I am doing a bit better. The oxygen I am receiving is at a lower 3 Liter flow and that is keeping my O2 Sat levels in the low 90’s.

My bronchoscopy was cancelled today as the Pulmonary team thought they had cultured a bacteria out of my sputum called Neisseria. This can actually be a pretty nasty bacteria that in one strain causes meningitis and in another causes gonorrhea. I of course have neither and the reported strain as of this evening has yet to be exactly determined. The Pulmonary team decided best not to put me through the bronch procedure.

My transplant team saw this and came in and said that sounds like a plan. To continue the IV antibiotics and give this a bit more time. They also said I am stable from a transplant perspective and the Rhinovirus I have is being beaten down a little.

Midday I was taken to x-ray to have a barium swallow test to make sure than everything I consumed was going down the correct pipe. The test came out fine after I drank some barium, and swallowed an applesauce and barium mixture as well as crackers dipped in barium. Sounds delicious, doesn’t it.

Then later in the afternoon the Infectious Disease Team came in and said, not so fast regarding the Neisseria. They thought if that was really causing my pneumonia then as bad as that one is, why have I never run a fever. Furthermore they wondered if I even had true pneumonia. Perhaps it was over diagnosed on the CT chest scan and maybe I have an irritation of the lining of my lungs called pneumonitis. Finally with all the lung problems I have had since 2019 it is very likely I am colonized with weird bacteria anyway.

I wonder what ChatGPT would say about all of this. So the ID team is winning and my IV antibiotics have been stopped for the moment and I am back on oral Augmentin. Now time will tell over the next couple of days depending on how I react/respond. Everything is still on the table.

My hearing is still limited and there is now a sign posted on my hospital door announcing that to those who enter the room. Sharon and I wanted to have a conversation so I suggested she call me – we were in the same room – as I can hear when the speaker is activated on my iPhone. But we had too much feedback.

To be honest, I lost my head a little tonight. I have a bit of a short fuse and I am tired and frustrated. Then I remembered many have it much worse than I do. We shall see what tomorrow brings.

Larry and Sharon

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