Well, half way through my stay here after transplant which is supposed to be 100 days. I do hope the next 50-days are a bit smoother than the last 10.

I am anticipating being discharged from the hospital tomorrow. Many moving parts, not the least of it is getting me home oxygen. That has been a bit of a circus today. Apria home health is the provider. The initial calls with them seemed hopeful. A large scale oxygen tank was delivered to my room to get me home, only to be discovered by my very astute nurse that the tank was empty. So off the delivery guy went to get a new tank.

At our apartment Sharon waited for a delivery that turned out to be a oxygen generator for me to use. All good except Sharon said it sounds like a freight train when it is in use. They also included 2 small “bottles” that I could walk around with as they are carried in a sling. These walk around bottles may give me 3-hours of oxygen and take 4-hours each to charge up. I continue to be amazed at how healthcare works and what is offered as treatment options.

Bottom line is that I need to recover and lose my need for oxygen supplements. I will work on that.

Otherwise the day was pretty uneventful. I take my meds, I took a walk around the halls today. Sharon prepared another delicious dinner. Tomorrow is our granddaughter Lila’s second birthday. I hope to be home so we can video with her and sing our happy birthday song. Next year it will be in person.

Larry and Sharon

Hi. Still posting from my hospital room. A couple of decent size events today.

First off, all the teams got together as there is still nothing growing from the bronchoscopy washes i had this past Tuesday. Many viruses have been checked and are all negative. Tomorrow will be the last dose of my antibiotic unless some bacteria of note comes up growing from the cultures taken. The decision was to start me on a course of Prednisone thinking that the aspiration pneumonia is more inflammatory than infective. 40mg started today and will continue for several days before a taper. The upside is this helps cool things down and maybe even my ear canals may open up. The downside is that if the theory is wrong any real infections could get worse. Again, as is becoming my mantra, time will tell.

The other event is that I have been freed. Meaning the viral droplet quarantine I have been under has been lifted. So you can guess what I did. I walked out of my room. Along with an Oxygen tank Sharon and I did 4-laps around the floor today. Felt great to be out. Tomorrow I think they are going to walk me around, with Oxygen and an O2 Sat meter to see how much Oxygen I may need when I am discharged. Between the Prednisone, which always produces a bit if a high, and breaking out of the confines of my room, I am a bit more optimistic today. Still a rough road to go down.

I am kind of fed up with hospital food. Sharon has been great with bringing me tuna and dinners from home. Not sure what state I would be without her. Hope you are staying cool.

Larry and Sharon

As days go, this one was pretty unremarkable. I am resting comfortably in my hospital room, continuing on oxygen although they are trying to reduce the flow to less than 2L if I can stay stable on that.

So far the samples that were taken at bronchoscopy have not shown anything, which is good. We are waiting on the final cultures, hopefully in a day or two.

In the next couple of days I will have a recheck of my lungs via CT scan and an evaluation from the physical therapy team as to whether I can live with or without oxygen. I am told they will do this by walking me around a bit and climbing some stairs. They will measure my O2 Sat during the process and if need be order oxygen for me at our home base apartment here.

The remainder of my scorecard is stable although my Hb/HCT have again fallen slightly as has my ANC.

If the plan holds I may be discharged this weekend. That would be so great. Just a change of scenery would do me well.

In what might be the biggest news today is that I figured out how to turn my Apple Airpods into hearing aids. My hearing is still trashed and at least with this I can hear Sharon and others without their having to yell at me. I do hope that this is temporary. We have a long way to go yet.

Larry and Sharon

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