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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 2 days ago | Replies (549)Comment receiving replies
Quiet on this topic. I am at day 171 post-transplant. One concern has been my water intake. Lori spoke about water on this blog when i first talked about it and said drink it at room temperature. I have been doing that for months. So last week i think for sure i drank less water on the one or two days. When i went for my two-week visit, it was 10 days and not 2 weeks as my dr was going on vacation. Every one of my blood numbers was great!! But my creatinine........no...... Its number on the high side is 1.0. Mine was 1.48. My nurse said i am going to need hydration. She went out and talked to the DR. He said if my number does not go down, i am coming off Bactrim and going back on Mepron. NO I told the nurse. That fluid is gross!!! She went back out to talk to the dr. Shortly after he came in. He again said my kidneys will wake him up at night. He does not want me to have kidney issues.
He ordered 3 days of hydration. Yesterday was my third. That is 1 liter. Along with that, i had at least 120 ozs of water each day or more. Today I go in for a blood check to see my numbers. I am praying the number came down. If it does not, it is the med working in my body. I have had enough water. The Doctor will insist i go back on Mepron that he said i can mix with something, so it tastes better! Ha i said. That is like saying Liver has no taste as my father used to say.
One he left the nurse said i sure got through to the Dr. He does not usually let the patient make a choice and he changes his. I must now improve my number by me doing what is necessary.
Replies to "Quiet on this topic. I am at day 171 post-transplant. One concern has been my water..."
Kat
I learn so much from you here. My jaw dropped at 120 ozs of water.
Glad you are getting close monitoring. Hope your creatinine improves.
Dorothy
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Good morning, Kat. It has been quiet in this discussion the past few weeks, hasn’t it. There was a rush of adrenaline with the newbies (or relatives) having transplants…you @katgob, @mary612 @avaleir, @caregiverx2 @dwolden @clock456 @graycoose @marylou329 @wendymueller, all within a couple months of each other.
Understandably high levels of anxiety and anticipation surrounding our odyssey in the effort of getting a second chance with life. Especially pre-transplant when there is a such a level of uncertainty. The first few weeks after transplant also come with a level of uncertainty. Each individual has their own, unique set of circumstances which can create some unanticipated challenges and even a little anxiety for our doctors! LOL. Such as your doctor saying your kidneys will wake him up at night! 😅. Yup, I had a couple doctors mention that they had a couple sleepless nights with me on their mind too. (Both transplant and AML treatments) That elicited quite a few laughs from all of us…considering I’m like twice their ages. Le sigh…. Anyway, your kidney issues may indeed be caused by the involvement of meds you’re taking. Some of them, such as tacrolimus, interfere with the blood flow through the kidneys. I know you’re no longer taking that medication but it is an example of one of the culprits. Sometimes sloshing water down isn’t enough to clear up side effects of those meds.
Hopefully you don’t have to switch from the Bactrim to Mepron with its nasty taste. But with you being immunocompromised it’s crucial to take one or the other of those meds to prevent Pneumocystis carinii pneumonia. Another possible alternative would be the monthly Pentamidine breathing treatments administered by a pulmonary therapist.
Still can’t believe you’re already at Day +171. You’re always such a positive inspiration, Kat. 🥰