It turns out the recorded message to meet with the nutritionist today was only the beginning. Monday morning I got a phone call with a list of appointments to keep to get ready for transplant. X-rays and scans and a "Pulmonary Function Test" which wore me out today.
I'm really going to transplant in the next couple of weeks. I will learn dates and the final protocol this Friday. They are still deciding the chemo protocol. Walt will be my donor again and they will harvest his stem cells again after beefing him up with Neupogen shots.
I have to ramp up the eating. 90g of protein and 2100 cals a day. Minimum. Keep up the treadmill. Visit the clinic every day for Ertepenem, the antibiotic. No anti-fungal drugs right now.
The doctor talked to me today about the procedure. He said this will be higher risk than the last one. What they really would like to do is another mini transplant but they know that didn't work, so they're going to do the full banana. They have to give me anti-fungal drugs to protect the lungs, but they have to walk a fine line so that my liver is not damaged.
Higher risk of mortality he says. I know this. I said to him "You guys have done a lot of these transplants and I trust your expertise."
Then I said "and I am a tough nut." He smiled and said "we know THAT." I think that's a good positive.
Meanwhile I seem to have a little stomach bug, perhaps from Harrison on the weekend. No fever=no worry. Just feel lousy. I think it's a bug because vomiting was just losing my cookies. It was not the gut wrenching convulsions that chemo and other drugs seem to produce. Nevertheless, I am not eating much and hope to feel much better tomorrow.
When I have dates, you'll have dates. Meanwhile let's keep the positive thoughts and prayers coming for this medical team, my support team, and my body.
Cathi
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6 comments:
Ok; we're all gearing up around the country to help you through this. Keep us informed; we'll be doing what we can. I'll try sending protein thoughts - giant pieces of (organic) red meat floating through the universe.
Robbie
Wow. Exciting news - anticipated yet still surprising. I'm sending positive thoughts and lots of good karma to you & Walt.
love, gail
I will send chocolate thoughts. Blue Bell hand dipped ice cream in rich chocolately flavors, non dairy of course. We are all part of the transplant team, even if only in spirit. In spirit really counts I believe. Sara
This is so excitng! Does Walt need to up his protein intake too - I can imagine him capturing Robbie's protein thoughts and slapping them on the bbq!!!
Seriously, sending high energy thoughts to both of you.
love #2 GOT
Thanks for the thoughts on protien intake. But I have had 8 years of shoe leather steaks from new England. I'll pass. But we have been playing catch up for lost time on the steaks. The worst steaks at the store in KS are twice as good as the premium shoe leather sold in New England.
Nothing personal Robbie, I am sure you have a great butcher over on the lake.
I am scheduled to travel for the next two weeks, so I will be using lots of hand sanitizer, wearing masks on the plane, & always a rental car standing by to wisk me away from the sand dunes of Nebraska, back to KC. I tried to recruit my work mates to wearing masks, so I could blend in, they were not having it.
I will be looking for Sara Beth to attend with me again to watch the second StarWars trilogy while I donate.
All very exciting news...you are getting so much closer! Like Robbie said, we're all gearing up to help you (and the rest of the support) through all of this. We may have to have a Star Wars watching party across the country as a start!
Hope you get to feeling better and we're super glad it's just a bug and no fever!
Love-
Margaret
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