Busy Day
Lively discussion with the team this morning making sure that we're both on the same track focusing on the fluid retention and kidney function while trying to resolve the issue of GVHD (Graft VS Host disease ) related diarrhea.
By the end of the day had had a urinalysis, stool studies, kidney ultrasound, flexible sigmoidoscopy with biopsy, and echocardiogram and had been seen by a nephrologist and a Gastroenterologist. All tests so far have been basically negative.
The fluid retention and kidney disfunction are felt to be due to the cyclosporin with contributing roles of multiple other drugs. Most of the other drugs are being or have been stopped or decreased. IV fluids have been reduced to one essential anti-biotic. They will be giving daily but small doses of the diuretic Lasix.
I'm told that the improvement will be slow but steady over several days.
posted by Mary Catherine @ 1:47 PM
8 comments
8 Comments:
OY OY OY OY OY
I think this is enough yucky stuff... now hear this: Hct UP! Plts UP! Edema DOWN! ( tho Buddha calm can remain , begone Belly!) V and D ( whether GVHD or otherwise related) GET THE F&*&^ outta my brother!!
sheesh..
much love, lots of positive thoughts...
Da Brat
(aka the non perfect one, just the OTHER sister...sigh)
..hows the pulmonary infiltration issue?
Dear Phil and mary Catherine,
Well, sounds like you had delightful day....
Movies....Well, Besides something like Little Miss Sunshine, Mark and I have been enjoying checking out a few series from the library. British, both of them. One is called "Extras" (the DVD has outtakes which are just so damn funny, you'll wet your pants--much better way to get rid of fluid than lasix, by the way!), and the other one is "Vicar of Dibley", which is also very funny. Another movie that would be right down your alley is "Sideways".
So, how does one get hold of you if they want to speak to you on the phone? Can that be done, or do you not have a private line? Your cell phones are just saying leave a message, probably because you're not suppposed to use them in a hospital, I guess. At any rate, can one call you up?
Well, I hope you get a break from all these tests, my God. Do you get to go outside at all? How's the weather there? (It snowed a bit up north, was 40 overnight here--wouldn't you know it, just when I put my peppers in!)
Geez, between you, Mama and Daddy, maybe we should invest in lasix, eh? (Ordinarily that would be a joke, as I don't like to make money off others' misery, but with gas going up, maybe I'll rethink that. I hear spineless is in...)
Have you heard from Jeffrey? He related something funny the other day. Corey just passed his drivers' test, and I guess Sarah was in a hurry to let people know, so she just texted the top five or six of the last people she talked to on the phone "Corey passed!". After the grapevine got back to them that people thought Corey had DIED, they had a few apologies to make to some pretty upset people...
Gotta go, I'm beat. Keep plugging in there, Phil. It's hard to think of those skinny legs as fat. Now you have just a taste of what normal human beings feel like when they look at their legs and belly...
Love to you both!
Elizabeth
mum and dad,
wooooooooooow, please don't let this experience be what I have to look forward to...does NOT sound fun.
Hope Bram is there singing and playing his guitar and taking your mind off the unpleasant sensations...sending you lots of love. Be in touch. -G
Like the children always said....are we there yet? These road blocks and orange barrels have to go! Anyway, we luv ya and think you've had enough. Slo and Steady wins--are you Slo and MC Steady? Go team!!!! Love and hugs, Tom & Barb
You have to be weary. This sounds very challenging. Thankfully, you guys are such an awesome team. I'm thinking of you daily. Can you feel the love?
Cindy
Hello Phil and Mary Catherine, It is good Phil that you have a scientific interest in all of those tests you are getting, so that you can describe them in detail to us and we can all be miserable with you. Oh even modern medical technology can be a drag at times, when you are the host of too much of it. At least thing are looking up and the results of your tests sound very positive. Hopefully you can get off if the rest of the drugs soon and get outside in the spring weather. Kind of humid and overcast here today. I am teaching waterbugs to all of the prairie school 7th graders tomorrow, so I have been running around to streams since 0700 this morning netting caddis flys, stone fly, damsel fly and many other macroinvert nymths. We ahve about 6 schools tomorrow.
For once I agree with Da Brat. Hans Lumpe Pulsifer III
Hi Phil and Mary Catherine,
If you are thinking about riding the bike, you are progressing better than Bucky did last summer. What a difference a year made! We have been off raking the leaves at our ancient cabin. It is good news that you are starting to see improvement. Hope you will get stronger everyday. Sheila
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