2022 continued

August 19 – Howard is admitted to the hospital again, for the last time. He has some brain fog, which isn’t that unusual for his stage of liver disease.

August 21 – Howard’s condition is very bad at this point. While he is not yet approved by the two transplant boards, Kaiser & UCSF, they are trying to expedite the process. They are working to possibly transfer him to UCSF’s care. They have a lot of expertise in this area. Also he will already be there when he’s approved. While his good echocardiogram shows his heart healthy enough overall he’s in a very bad state. While I was there this morning he just slept. According to the nurse he is producing urine and pooping at good rates, which is a good sign. But the doctor I spoke with said his condition is still deteriorating. Today he was able to still respond yes & no to questions. Josh arrives from Mexico.

August 22 – Howard was transferred to the transplant unit at UCSF Parnassus in the middle of the night. He’s have a few things done and we can’t seen him yet. His nurse tells us he’s more verbally responsive today. UCSF has strict visitor rules. Only two people per day.

Louise and I met with the team of doctors caring for Howard. This stage is evaluating him for transplant. They were pretty excited that he knew where he was, even though it took a while to get it out.

He had several ultrasounds that are being evaluated. He will go for CT scans of head and ? I forget.  Tonight maybe?

His chart already show 24 tests run. His sodium is high and they’re going to address that. He’ll be getting an NG tube so they can give him liquids.

He’s had PT & OT evaluation and they got him out of bed.

He will have paracentesis soon.

We left as Howard was about to get paracentesis. They will take 4L of fluid out of his abdomen. There’s more but taking more stresses the kidneys.

The doctors really want to figure out his mental state and why it’s so hard for him to articulate. When he does he knows the date and where he is. But then he says some nonsense here and there. But also sayspertinent things also. “I’ve been trying to tell you all day” came out very clearly not long before we left. He was having cramps in his feet.

As always there are reasons to be optimistic and reasons not to be. I think the Kaiser Transplant Board will approve him tomorrow because his regular gastroenterologist is on the board as well as the hospital doctor that pushed to get him transferred.

The UCSF transplant board meets Wednesday. In two days.

He is now in a facility receiving a level of care I’ve never seen before.

It really felt hopeful at this point. UCSF hit the ground running to get as much going as fast as they can.

August 23 – The staff continues to impress. The nurses are top notch and nobody has any trouble getting a vein. No need to call in a vein whisperer.

Howard is doing a bit better today. He is able speak a lot more. But he’s not completely lucid. Sometimes he says things that don’t make sense.

They’re still running many tests. The CT scans happened this morning.

His sodium is high so they’re still putting water into his stomach via NG tube to help lower it. He is drinking water also. He isn’t allowed food yet. But clear liquids are allowed.  He did have a strawberry popsicle.

He’s currently getting a blood transfusion.

Somewhere around this time Howard’s 3 sisters and a niece arrive.

August 24 – The UCSF transplant board meets in the afternoon. Josh & Louise visit him in San Francisco at UCSF. I get a call from the UCSF doctor about his transplant. She is the epitome of kindness and empathy but has to give me the bad news. She says they had a very long discussion about his case. Longer than usual. But in the end they thought his risk of relapse was too high. She says something she said before: they would love to give everyone a liver and they would if there was enough to go around. But there isn’t. I had looked into directed donation as he and I were a blood type match. I asked her if directed donation would have made a difference in their decision. She says no. I was never sure I’d be able to go through with it, but I felt compelled to look into it. One of the co-ordinators had called to ask me a bunch of questions about Howard. I spoke with him about it too. He also was deeply empathetic and great at his job.

Louise had missed the Doctor’s call with the results of the transplant board. So, it fell to me to tell her.

August 25 – Howard will be transferred back to Kaiser Walnut Creek.

He has been informed of the board’s decision. He said “I accept that” at one point. He looked a bit shell shocked.

In the coming days a decision will need to be made  as to his path forward. He will make that decision if he’s able. Otherwise we’ll have to. He clearly wants to go home.

There are two ways he can go home: after getting well enough to fight longer or to go home and be given support to keep him comfortable and out of pain, palliative care.

The only alternative to obtain a liver would be to submit to another transplant center. They would have a similar process. There’s no time for that.

August 26 – He’s been transferred back to Kaiser Walnut Creek. I’m visiting him when the doctor comes to talk with him. The doctor lays out his options. Both are grim. First to go through the cycle of propping him up only to readmit him a few days later. There’s no way to estimate how many times he could live through the cycle. But the doctor is not optimistic. The second choice is to go home for palliative care. Howard states his desire to go home. The doctor is very blunt at this point, wanting to make sure Howard really understood. Although his brain fog is better, he’s still not clear of it. However the doctor is comfortable that Howard did really understand.

I cry in the hallway. Hard.

He is discharged to home hospice. We take him home and with some great effort get him into his bed. The hospital bed comes the next day.

to be continued…