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Anyone dealing MDS and how are you doing?

Blood Cancers & Disorders | Last Active: May 9 12:29pm | Replies (23)

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@katgob

Today I am 28 days after transplant. I had a visit with the dr team, but only saw my dr down the hall getting ready to go in another room. I got the nurse. I must update that last Friday I was in my 4th day out of the hospital, and my nausea still had me. Not till I went to the Dr and heard him ask if I had a saltiness in my throat that I thought later what that meant. He mentioned at the visit that I am "killing my kidneys" and I have AKI. Not good. Am I drinking water? Because I essentially failed my 24-urine test before I went in the hospital, I know he knows I do not always drink a lot of water. So, as i thought about what he said, I realized the last time I had chemo in late 2021, I drank 1/2 my weight in water daily. A nurse had told me that this would flush out the toxins. So, I drank at least 1.5 liters of water for 4 days, only one zofran in the morning and my kidney function is back up to the minimum range.
I was a bit on the edgy side today. Not fully sure why. I feel ok now.
Todays results from the nurse are my white cells are climbing, as are my platelets. Looks like my marrow is doing what it is supposed to. All other numbers are good too. All the drugs for rejection look to be working. I did not know that they did not release me from the hospital until the graft looked to be working. Every single nurse provides a bit more into that i did not know.
Right now, the toughest thing is to not have my car to just drive myself around. I used to do that with my other cancer. I will end that every day I say outlound to myself that " I am a bone marrow transplant patient".

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Replies to "Today I am 28 days after transplant. I had a visit with the dr team, but..."

Good morning, Kat! Early on in my transplant it became apparent that it helps to have a sense of humor, a sense of adventure and to be incredibly flexible in handling whatever comes at me on a daily basis! You’re finding that too with little things such as learning the hard way about drinking water. 😉 I was encouraged to drink 80+ ounces daily. It was a struggle some days but it really made a difference in how I felt. Try drinking room temperature water. It goes down faster and is utilized better by the body.

It is frustrating not being able to drive for a while! I remember that too and how liberating it was to finally get behind the wheel again. Slowly you’ll return to some normalcy. I’m happy to hear all your blood numbers are looking good. Don’t be surprised if there are fluctuations…that happens. You’re doing great! Thanks for the update!