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mamakayzMember
Dennis..
Although the transplant eventually did not take, it took them 3 months to find Nadine’s match.
They told us that they found 5 possibles, with 2 real close ones (both from Germany).Good Luck
JonmamakayzMemberThanks everybody for the thoughts.
This morning was really bad…Nadine (at Washington County, Md. Hospital, by the way) was totally unresponsive to me, her kidneys were failing and they determined she had pneumonia (on both lungs).
After they put in the breathing tube, things picked up a little…and they started on clearing out the pneumonia. Her main doctor showed up and told me to not “count her out” yet…there still is hope once they get the lungs cleared out and the kidneys up and running again. They’re taking the problems “one at a time”. The next 48-72 hours will tell the tale, they say.
SO, it’s been a roller coaster ride and I guess it’s not over yet!….but thanks for all your prayers, we do feel the love.Jon
mamakayzMemberIt’s called ulcer-ease and it works wonders.
Jon
mamakayzMemberButchL,
Agreed that GVHD does have the itching side effect, and it very well could be Paula’s friend’s problem, however in our case, the BMT didn’t work and there was no GVHD possible, so it all came down to the platelet issue.
Jon
mamakayzMemberI think you’re right on track with your thoughts about the itching being platelet-related.
My wife has been in extremely low platelet deficiency for weeks now (1k to 13k), and the doctors told her that is what is causing her itchy-skin rashes and edema in her legs (massive swelling). As for 8 bags of platelets?…even when her platelets were rock bottom, they never gave her more than a couple bags.mamakayzMemberDoreen.
My wife also had this problem.
Pretty sure it’s related to the chemotherapy after-effects, and they did give her some amazing mouth rinse that took care of the problem quickly. Can’t remember what it’s called, but I tried it for a mouth ulcer and it worked great.Good luck
JonmamakayzMemberPatti
Not sure this is related to your problem, butmy wife Nadine had tremendous stomach pains while she was in the hospital recovering from her BMT several weeks ago, and we finally determined what was causing it. The platelets in the transfusions they were giving her were being “soaked up” by her spleen (also enlarging it eventually) thus causing blood to “seep” into areas it shouldn’t seep into, one of which was her intestinal track, causing tiny lacerations in the lining, thus causing the horrible pain, as well as blood in the stool and some bloody vomit. Unfortunately being so low on platelets (1k to 10k) they could do nothing evasive. Eventually the lacerations healed and the pain and bleeding went away.
So this is just one of several scenarios to consider.
Jon
mamakayzMemberI too, know how you feel!…
My wife Nadine is at day 40 since her chemo, and her counts are finally starting to climb upward. I thought it would never happen, but the Dr.s now say she is only days away from getting out. They also say that blood samples taken just minutes apart can vary “greatly” in counts; it’s just a momentary snapshot…so don’t put too much stock into the exact numbers, just be patient and wait for it to happen, which it will.mamakayzMemberJohn.
Glad you were able to determine what the problem was without waiting too long.Good luck and may God be with you.
mamakayzMemberKate,
On behalf of my wife Nadine and myself, please accept our condolences in this time of sorrow.
Our thoughts are with you.God Bless,
Jonathan and Nadine Kay
mamakayzMemberHello to all my new friends out their,I’m in the media room at the cancer center at Johns Hopkins and I can’t sleep because later today I get to see my family for the first time in days. That has been the worst so far. The busulfan hasn’t been bad. Sunday I’ll start with the cytoxin and that’s the drug that scares me. Then the fun begins. The hickman cath isn’t painful but the bruising is a bit more than I want my 7 year old to see. Wednesday is the bmt day so I’ll let you guys know how that goes when I can. But my better half papakayz pokes his nose in for me every now and then too. Hugs and prayers to all out there evertwhere!
NadinemamakayzMemberHello.
My wife “mamakayz” is the one who got the unrelated donor match through Johns Hopkins…they actually found 2 matches, and after only 5 months of searching!…So there is always hope. Keep the faith, Hopkins is great.
And being young is a plus also.
By the way, my wife was admitted yesterday to start her 5 days of pre-BMT chemotherapy and her BMT is scheduled for next Tuesday. So far, the worst part seems to be the boredom, but we’ll gladly take that over the alternative.Take care and good luck.
PapakayzmamakayzMemberI had a local for 2 bmbs. The technique of the doctor and level of bedside manner made all the difference to me. The first was by my local oncologist (she is an angel) with a little discomfort, the second was a cold, clinical, young uncommunicative doctor and it hurt like heck for 2 days. May passionate caregivers be with us all!!!
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