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

Kat, you’re a poster child for how SCT is supposed to go! I enjoy seeing your positive updates. Honestly, attitude can make a huge difference in any journey, right? Looking for the doom and gloom sends a preconceived message that ‘nothing is going to go well…woe is me.’ That’s not productive.
Attitude and effort are two things over which we have control and both can help change the outcome on multiple levels in our life. You are a shining example! Consider where you were in this journey a few months ago with worrying about making the decision to go ahead with the transplant, finding a caregiver and making the logistics of this all work out. Your ‘can do’ attitude and perseverance for a healthy future without cancer propelled you forward until you found a way to make it work! You are a force!

It’s so cool you’ve become friends with another woman who had her transplant the same time! My friend and I are still in contact 5 years later after meeting post transplant. She lives a 1,000 miles from me so we seldom see each other. But occasionally the planets align and our follow up appts coincide at the same time in Rochester. Other than that, we email frequently. It’s really special to have someone to chat with who shared your similar experiences, same doctors/nurses, clinic, etc..

You’re a BMT team’s dream with your following all of their directives. Even though we may not always like them, protocols and guidance are in place for a reason, because they work. So kudos to you for upping that water intake and popping those meds on time. It’s not forever but it sure will help to ensure the positive out of your SCT. Interesting, but since my transplant, I never stopped my daily intake of 64+ oz of water. It became a habit and I feel so much better for it.
Keep up the great work and thanks for brightening my day with your positive message! Sending an air hug!

My story continues. I had my usual Monday visit, and my 30-day bone marrow biopsy came back. The Doctor said I am doing a great job, as all my blood numbers continue to rise nicely, and my marrow shows a 99.9 to 100 grafting of my donor in my bone marrow test. The Dr said keep doing what I am doing. My water intake is working, and he wishes all his patients would follow the suggestions they have outlined. Actually, the protocols for recovery from a transplant. I told him after my " you're killing your kidneys scare" 10 days ago, I want to do all I am asked so the Dr. knows I am doing my part for myself. I have read a few posts on my other site for breast cancer, and one person just diagnosed went down the google rabbit who and only sees doom and gloom. She had a dozen women in different stages of breast cancer give such wonderful messages. Every negative she put out, brought a dozen more women who shared. For me, this is why i also love the May clinic site. With Lori as a mentor and the other patients sharing their stories, I could visualize the road ahead. As best as possible, doing it one day at a time. One test at a time. All I am asked to do is take my meds on time, drink my water, exercise and eat as healthy as possible. I am now 42 days past transplant!
I also an into a lady that was on floor 6 with me in the hospital. I remembered her husband who was with her often. She had a 6 out of 10 match for her transplant. She had her transplant a day after me. What a joy to meet another who is on the same journey at the same time.
I am grateful for MDS and not advancing to leukemia. For the research study i am on that is helping prevent GVHD. A day I got to thank my dr and his staff.
I taught my dr. today about the 1/2 empty cup. The way some people look at life. Rather than to focus on the 1/2 full. He is from Iran.

Lori,

I am on Tacrolimus. Tonight, I asked my RN who actually gave me Hydration in the VAD area, about the kidneys and hydration. He suggestion drinking the water slower all day to allow adsorption and not quick elimination. Funny but sad that the only place for my 4pm hydration is the VAD area where i get my blood done. Kind group dawn there.
I am on an anti-fungal infusion daily. Thank you so much for the update!!! I will have another blood test on Friday, so my kidneys will tell their story. I will drink my water tomorrow. You are the best!

Hi Kat, good news seeing those blood numbers creeping up! Your new marrow is busy doing what it’s supposed to do!

Yes’m, some of those meds can be pretty rough on the kidneys, especially the Tacrolimus if you’re on that. I guess I never asked. Is that the name of your anti-rejection med? Tacrolimus can change the blood flow to the kidneys, restricting its ability to perform at normal capacity. It usually corrects over time as you taper from the drug.

The combination of some meds can change the processing time of other medications, especially the Tacro. For instance, I was on infusions of anti-fungal daily for about 1.5 months. When I was switched over to oral Posaconazole, as predicted by my doctor, the amount of tacro in my body was elevated because of that drug. I went into acute kidney failure which was quickly reversed with a reduction of tacro dosages and fluids. It can take some tweaking to get percentages of meds at just the right proportions. You may experience some fluctuations during the next few months…all part of the process.
I’d say you’re doing really well with all of this and making great progress! I love all your little updates! Thank you for checking in. Your minions are hard at work…😅

Morning all! I am 36 days past transplant. My blood numbers are going up. Red a bit low but white and platelets good. I am though having kidney issues. AKT? I forgot the numbers. Yesterday and today, I am receiving hydration. 2 hours yesterday and 4 hours today!! My kidneys likely are not loving the drugs!!!!

Hi Shannon360 Welcome to Connect. You just gained a new family here in the forum. Many of us have had leukemia or some other medical condition that has required us to have a bone marrow transplant. We have tons of information for you and have your back when it comes to support, encouragement and hope!

Could you tell me a little more about what you’re going through?
What type of leukemia do you have? Are you in treatment now? How soon will you require a stem cell transplant?

Bone cancer will need Stem cell replacement

clareq- I hope todays visit eases your mind on your BMT. More what will be planned just for you is helpful.

I am day 34 after transplant. I had my 1st bone marrow biopsy Friday after transplant. My 3rd overall. I found out here that the next test is at 100 days. That is good. At this one they take the marrow and bit of bone and check what residual of my original "factory installed cells" remain. Wow. Tuesday is my next blood test. The marrow results may not be in yet.
I have a condo with a patio. Two rose bushes, geraniums and a whole lot of succulents. My brother has been taking care.

Thank you Lori—
As much as it pains me I have read that gardening will be out of the question for some time and need to be cautious the rest of my life. That is a tough blow because aside from my family— gardening is the joy of my life. Even being on Hydrea and Jakafi, I experienced fungal infections so I can understand why it’s basically prohibited.

I will be having my first meeting with the transplant team this Monday, May 13th. They had sent an initial packet of forms but as I am already a patient at UofM it wasn’t too much. I’m certain there will be more.

I’m sure many of my questions/doubts will be addressed at this meeting. As I said, this is all happening quickly. I’ve wanted a transplant since my early ET diagnosis 12 years ago but now that I’ve progressed to warrant the transplant it’s a bit daunting. I want to be brave for my husband and family so they won’t fret too much.

soonerfan.
Thank you for posting. I'm at City of Hope in California. Who knew i would come across Lori in this Mayo Connects site and find the extra support i needed to walk through my transplant. I found out with a Bone Marrow Biopsy I had MDS in October of 2023, went in the "Be a Match" registry and by December the Dr said they had matches. In January, they had one donor picked and in March I found out that with a caregiver found, April 2nd was the start of my conditioning, April 9th is Day 0, my new Birthday.
I have some neuropathy on the bottom of my feet, I do know the transplant teams want to help with side effects.