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

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.

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!

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.

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.

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. 🥰

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

Lori always learning from you here. David has been receiving the pentamidine treatments once a month since right before transplant, and we didn’t know what it was for. Now we do, and grateful for prevention of pneumonia!
Dorothy

Well my husband (and I!) are at day 36 post transplant. It has been a wild ride so far and we are hoping can even out a bit.
We expect to be discharged today after the second hospitalization for a blood infection. This was a very serious infection with drug resistant bacteria. David had no symptoms so we are very fortunate that routine follow up blood cultures caught it before he became very sick.
Aaand the first chimeric blood tests were “unusual” with good news and odd news. But steady as we go and hope for improvement at the 60 day tests.
His central line was suspicious for “colonization” by the bad bacteria so it was removed. After 48 hours of no growth in new blood cultures, a picc line was just placed in his arm (all these teams are marvelously efficient) so he will have an access line for needed transfusions and meds.
Neutrophils showed up on day 17 encouraged by shots of growth factor!! I was giddy. I’m still giddy, although they are slow now. He is not neutropenic.
Platelets coming on slow and steady.
RBC’s have needed transfusions here and there. We are told those long lived cells also take the longest to come in.
David feels good, working at getting enough protein and fluids (not much is appealing right now) but that will come back too.
Grateful for every day and getting back to the everyday.
Dorothy

My RBS finally got above the minimum in the last 2 weeks. 171 days past transplant. The white cells were a bit higher along with the neutrophils but hanging steady.
This is why the early days and the care you receive are vital with a transplant. Get those side effects treated before they are trouble. As i said my water and kidneys are my current problem. My DR s did not want my high number keeping him up!!! I pray David stays upbeat and ready to take on anything his body presents as he heads to the smooth days with just living to do.

Yahoo. My Nurse Practioner was so excited today. She said she prayed for me.
My 3 infusion days and all the water i am drinking brought my number to .76. I told the nurse; I am drinking a 33-liter Gatorade electrolyte water along with my 6 bottles of 20 ozs. The desire to never have that Mepron, also had me buy the big 30 pack of Toilet paper. I do not buy that big normally, but with the extra water, and my Friday colonoscopy, I will need a lot. 😊 My numbers are still on the edge of low for a few, but my 1st thought today was not eating as many of my leafy greens. Food has those extras that I need.
I also had her look over my CT scan and she said no worries. Nothing changed since March and what is there is not troubling. I asked if i get every year and she said no. She said usually every 3 months to 6 months as a cancer patient and an ex-smoker it is good to keep an eye on things. I probably smoked a pack a day for 18 years. Nov 19th, 1998- Great American Smoke-out.
My NP was on pregnancy during my 1st 130 plus days. I had one through most of those days who was a rotating nurse. I loved seeing her. Then one more for 1 month, then my current. She is wonderful!! She also loved when i said i walk 10,000 plus steps or more every day.
Lastly, she ran out as i was making my return appointment and told me i am now done with Actigall, also known as Ursodiol. The pill protecting my liver. I aid i still have pills!! She said save them, but for now you are done!!
Yippee!! 1 Magnesium per day.
All my best that those in treatment take it a day at a time and tell your caregiver you love them. I tell my nurses that too.