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

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!

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.

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?

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!

Hi Kat! Always great to get your updates! You cracked me up with your story of the 26 year old cells taking over your 63 year old girls. My donor was a 20 year old male which took my 65 year old lady body by storm! 😂
Oh, that would have been the perfect segue to the conversation if I’d had a cytokine storm after the transplant but I didn’t! LOL. While there was a little turbulence from time to time we’ve reached a peaceful accord now and are BFFs. 😅. Better living through chemistry

It’s great your sister is picking up where you left off with Platelet donations! We sure realize more about the need for blood when we have Luekemia or a blood condition. Before my experience I had no clue the demand for blood products!

Wishing you well with your BMBX Thursday! Only good news accepted. 😉. I’m actually heading to Mayo-Rochester tomorrow for my followup appointment with my transplant doctor/team! Just routine at this point. I’ll check back in Friday-ish. We’ll be in Rochester for 3 days and then head up to Minneapolis to spend the weekend with our daughter.
Life in the fast lane!

Thank you for the update!! I hope you and free and clear in this routine follow-up. I am eating non fiber foods as I head to my first ever colonoscopy Friday. A BMB will keep me busy as i head into the rest of that day and night with no food. Chicken broth it will be.
I have always said a prayer when i got a transfusion. I had more going through breast cancer then this transplant.
I love my sister kept at it till she was cleared.
I also love our body's ability to adapt. Young men meet older gals. Who knew?

You are incredible xx
Always positive
I admire you greatly….from a distance xxxx💖

Today is Day +49. We are almost half-way home. All of his tests look great except for kidney function today. His hand tremors seem worse and makes eating difficult.

Good morning, @caregiverx2! The half-way home mark or, the half-way TO home mark! ☺️ Either way, it’s a small milestone considering the trepidation of those earlier weeks, right? It’s a slow but steady recovery to that second chance at life.

I’m so sorry to see your husband still has the tremors so badly. Has the doctor talked about reducing the tacro? What is your husband’s Tacrolimus trough? I seem to recall that if my trough rose above 7.5 my tremors would worsen considerably. Tacro levels in the body can be affected by other meds, which was usually the culprit in my fluctuating level. Tacro can also impact the kidneys so if your husband’s kidney numbers are off, that might be a consideration.

Wishing him well on the kidney function test today…only good news allowed. ☺️. Thank you for the update! Sending an air-hug!

caregiversx2- A getting better update. Regular visits with the medical team allow for quicker replies to this darn side effects. I have learned to not say that never happens to me. Tremors no, but ready how it stops your husband from using utensils to eat or drink is tough to read. And those kidneys!!!!! I am day 183 I think and my creatinine as been my red flag on nearly every visit. From 30 days after transplant that number has been watched. I can see my Dr. telling me then "You are killing your kidneys! Yikes!!!!! The medications we take as Lori said. My Tacro ended 2 or 3 months ago but I was given Bactrim to replace the awful tasting Mepron. Well, that affects my kidneys. Being blunt, no yellow pee!! As close to clear as i can get, as that is a good sign!
What this has taught me is i likely never drank enough water for my kidneys. I drink 120 oz or more of just water every day. I had 3 hydration days two weeks ago because my creatinine level was up to 146.

Thank God for all good results, those kidneys. We must save our kidneys, and our medical team will find a way to assist us find a solution that works for us.