My close friend, Thomas K Hicks MD, wrote to me yesterday morning. He is my college and medical school roommate. He is also a good navy man. He said, “Frank, you need a renal rally!!!” He is so right—-renal reboot would be fantastic. I was hopeful yesterday but there was no renal rally!!! The doctors are still optimistic. They believe they will turn the corner at any moment. I’m more pessimistic. I’m living in this body that has been ravaged by my own auto immune system. It seems determined to knock off my kidneys.

What a strange disease this really is. Some outside force, turns on your immune system, to try to destroy you. Some sort of body invader. Something from out of space perhaps. Could it be a virus? Could it be something I ate? Or is there something else in the body? Is there something in the background, causing this disruption? It has yet to be discovered. No one knows.

In any event, yesterday consisted of me getting another round, day three of plasmapheresis. This was associated with an infusion of fibrinogen as those levels had dropped. That drop put you at risk for bleeding specifically in the lungs. Lung bleeding is associated with this disease, Goodpasture. This disease needs a new name, by the way!!

The nursing staff remains terrific. It seems that with each shift, they bring me more medications. They are trying to manipulate my potassium levels. They are also aiming to adjust my phosphorus and calcium levels. I once took two medications a day and now I’m up to 12 or 14 a day. Thank God I didn’t change my drug plan this year !!!!!

I had a nice visit from the social worker making sure that my home was safe when I return. At least she’s talking about going home and that was somewhat encouraging. She wanted to know if someone would be able to drive me home. I said I think I have a few friends that might be willing. Of course, Justine will be there to do it! It won’t be soon though.

A big change yesterday was what I could order off the menu as they have restricted my diet. Every time I ask for something, they say it has too much potassium. It has too much phosphorus, and you’re down to a very bland meal. There are plenty of delicious foods at home. I’d love to have come in. However, I have to follow the rules and limit certain elements. This is so the numbers don’t become more acute. I suspect if that happens, they would throw more medications at me and certainly I don’t need that.

Today, will be day five of treatment and one week in the hospital. The plan includes a course of plasmapheresis. It will be followed by a short course of dialysis. This is to try to reduce my body weight, as I’ve gained so much fluid. They are trying to normalize some of the values now disrupted in my blood. The evil antibodies appear to still be in there despite the cyclophosphamide and the plasmapheresis, this high intensity treatment

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The doctors don’t seem surprised. They say that they see this slow start. But then the therapy will begin to work.

Tom, hope that “ renal rally” kicks in!That’s my hope for today.

I’m keeping busy between this as I’ve set up a mini office in the room. I can’t see live patients but I’m able to communicate with the office throughout the day to keep things going. Thankful to have Justine, Julie and Nick providing me with all I need to keep at it. It’s a nice distraction for sure.

More later.