My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

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.

All my best. The first two weeks are the toughest. Just rest them out. Ask for anything you need and know your care is what the medical team cares. I asked the transplant team often and they said they work on the floor because they love it.

Hi Marylou, Congratulations! I’m happy to hear everything went smoothly. You’ve had enough drama with this adventure, right? ☺️
Sorry to hear you ended up back in the hospital but that’s not uncommon. I returned too, not for a fever but another issue. It’s comforting to know we can be readmitted very easily. Sounds like you’re in good hands.

LOL I named my ‘machine’ Christopher…as in Christopher Walken. (We were always walkin’ around the floor together so I felt it was apt). My nurses even printed out a picture of C. Walken and put it on the IV pole! And the unfortunate, though ironic thing, was about 5 months later, when my hair was growing in I bore a strong resemblance to Mr Walken. 😂
Wishing you continued smooth sailing. Generally the first 2 weeks are the most challenging with how crumby you might start feeling as your blood numbers drop over the next few days. But better days lie ahead once your new stem cells engraft and they start producing new blood cells, especially those all important neutrophils!
Sending an airhug!

Hi Lori,
Yes, it's D+4. Stem Cell day Sept. 13 went smoothly. However, on Saturday when we checked my temperature it was 102 even though I was feeling fine. So I was sent to the ER. After numerous testing they could not find an infection and my team and I decided to stay in the hospital through my Cytoxin Infusion. I will be going back to out patient transplant on Thursday. It's been a very confining few days tying to the machine who I call Harry.

Good morning, @marylou329 Well? How are you doing with your new stem cells? I know there’d been some changes to your schedule and a few logistics to juggle, but if all went as planned then you’re at Day +4…the other side of transplant.
When you’re feeling up to it, I’d love to get an update on your progress. Were you able to make arrangements for your daughter to be ok in your absence?

Hi @caregiverx2, As I mentioned before, the first couple weeks post transplant are usually the most challenging days. But hope is on the horizon as your husband nears engraftment. He’s at Day +9 and engraftment can happen as early as day 10 but usually around 14-ish and beyond. When that happens and you see increases in his neutrophil count, the march to recovery is on the move! By the time there are detectable amounts in the blood, the cells have already been busy inside his bones sending out protection. It’s really fascinating! Anyway, I digress. 😅
I’m happy to hear your husband is doing well and keeping his spirits up. It’s really special when you find others going through the same situation so I’m happy he’s making friends with other patients! I still communicate quite often with a friend I made during my transplant (and hers). She and her husband were in the same hotel where we stayed for 4 months so we became fast pals! Unfortunately they live 1,000 miles away so we seldom see each other. Twice the planets aligned and we had our Mayo-Rochester followups at the same time. That was fun…we got together for a couple dinners.
Thank you for the update! Both of you hang in there~this gets better. ☺️ Think Engraftment! 🧬

Caregiverx- The BMT is not for the timid, meek or shy. The drugs of chemo we get release all sort of things from our bodies we have no control over. I had to use the toilet" cap " for a couple weeks. I finally asked my PCA if i was able to stop using in. Staying in the hospital they test all these body products daily. That is not a job for the meek, shy or timid. I think the joking and connections created between other patients humanizes the process. Every day is a new day. Aday at a time.

@loribmt
He is doing better. He developed Cytokine release syndrome on day +1 and had chills and fever for a few days until they gave him Chemo on days 3 and 4. The fever went away by day +5, but then the diarrhea came. He is on day +9 and I think everything is "back to normal". His white blood count is down to basically nothing now and he gets a bag or two of platelets every day. His hemoglobin is slowing dropping, so his fatigue is increasing. But other than a few rough days at the very beginning he is doing well and is in good spirits. He jokes with the nursing staff and has made friends with some of the other transplant patients. He will be inpatient for another 10 days at least. It depends on when he starts grafting.

Thank you dwolden for the update. Lori just reminded me about the quiet of the hospital. The routine. I was in the hospital the who time from the6th to the28th. The med team including the CMA and the RN began to know me. I see that they hopped into assist David with those dreaded symptoms. The attitude as Lori mentioned was vital to my good feelings each day. I was greeted with smiles, and they always asked, "How are you" and listened. I had a transfusion during those days too. The best part about this is the medical team knows and make it happen. Your success each day is their success as engraftment happens. Our hospital was soon to get digital boards for the patient rooms. We still had the ones to write on. The RNS loved reporting daily as my blood numbers rose. I hope you two rejoice too!!!
Oh my, this time will seem to have flown by in hindsight. I am day 142~~~~ oh my!! My red cell numbers have finally risen just about the minimum!!!! The other components have dipped but all remain great. Today I was told i look great!!! Antibiotic for the filling i will have re-done at the dentist net week. Back again in 2 weeks.
I just need to say to myself that i am a bone marrow transplant patient. I go places. I went to the beach, but no crowds. Outside for nearly anything i do.

I want you to know how much we appreciate your help Lori. Blessings on you.