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

I loved these shares to start my morning. Day 175 and Thursday I have my 6-month BMB.
caregiverx2- I hope each day after 38 gets better and better. I know i was living at my caregivers and taking on my pills praying daily. It is all unknown. We cannot predict our body's reaction. Lori's analogy of two cats making piece is such a good example. My bully cat who is my only cat, chased my precious hazel every time she got up out of a bed or off her perches. He was there ready to pounce. 9 years. My blood cells were only mine for 63 years. Now we introduced a 26-year-old fellow. Praying my 63-year-old girls let the 26th year old dig in and take it over.
I have the funky purple bruises that are unsightly, but not dangerous at this time. My blood clot from my surgery 2 years ago is not completely gone. A day at a time recovery comes. I love what Lori said about a transplant being a 2nd chance.
I walked my sister through her finally getting the clearance to donate platelets at her cancer center in western NY. Her 2 brothers and I have all been regular doors. Me until June of 2021. Cancer derailed me then. I know she tries to live healthy with not a lot of fried food and those sorts of things. I did not get her to eat more spinach or kale, but she ate cream of wheat, broccoli and took an iron pill two days in a row. I suggested she not take too many iron pills as too much iron can be trouble. They no longer use two needles, so she got the process in one arm. I hope the testing of 3 days proves her product to be good. She can then essentially pick up where i left off.
Looking at life with a new set of glasses after a BMT!

Good morning, @caregiverx2. Thanks for checking in with the progress report on your husband’s bone marrow transplant. Those first couple weeks can sure test a person’s mettle, can’t they? Both that of the patient and the caregiver. ☺️ I’m happy to read he’s doing well with his recovery.
It’s pretty normal to be receiving mag and fluids for a while. Eventually there will be a switch over to oral Magnesium. I remember those sessions…either 2.5 hours daily or 5 hours every other day! Did a lot of binging on Netflix those days.

The tremors are most likely from the Tacrolimus. Initially and with higher doses that can happen. Even on lower doses I still had a slight tremor but they went away with no residual after I was completely off. Trying to draw a straight line with my artwork was actually a little amusing! Gave it character!
But I do remember securing small buttons and eating soup were a challenge! Most patients see improvement as the dosage gets reduced. That will come in time! Right now keeping the new immune system calmed (suppressed) while body and cells are learning to play well together is crucial. Like introducing two new cats to each other! 😅 That doesn’t happen over night. At some point there will be a gradual taper off Tacro, usually near the end of the 100 days. However, some patients remain on it longer. In my case, I was actually on low dose Tacro for 2.5 years. We joked that “The force was strong with this one”, referring to my new stem cells. I had a perfect match but it took a while for graft (cells) and host (my body) to come to an amicable agreement! LOL. They’re BFF’s now and everything’s perfect but they did butt heads for a while.
We each have a unique journey through the transplant odyssey. Tell your husband to hang in there…things get better! Getting a second chance at life doesn’t come without an effort. But the rewards for persevering are immense!
Were you affected by the hurricane?

Today is day +38. He is slowly regaining his energy and appetite. His bone marrow biopsy shows 100% donor cells. His blood counts are steadily increasing. He still has to get magnesium and fluids a few times a week. He has no signs of HVGD. The only persistent issue he has is hand tremors. This makes it difficult to eat and he is frustrated not being able to do simple things for himself because his hands shake so badly.

Kat I was thinking of you. Today’s bloodwork for the first time showed gfr and creatinine changes that aren’t great. We will talk to the practitioner tomorrow and hope for answers and strategies. You have been off of Tacrolimus awhile right? David is on Tacrolimus and two antibiotics and two antivirals and an anti fungal. Sure glad we are in good hands with this complex situation!

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.

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.

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

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

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

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. 🥰