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

I forget to say that I was in a trial for GVHD at COH. We were the 3rd trial, so others went before us. My group was 20 or 30 of us that took the extra pill for 80 days. Another 20 or 30 did more days. Suffice it to say that not having GVHD even till today was a result of that trial or my excellent body with its new cells. I will never know. I do now that products like emend to stop the brain from thinking nausea and protonix that stops heartburn lead me to believe that GVHD was halted by the research protocols.
The trial tests at 1 year as they want the BMB items, extra for them, sent to test. Another 6 months and 2 years. Now that I thought of this, I figured it was time to review the forms I signed. It was 16 months ago, but something I need to remember.

Hi everyone,

I'm Bonnie and I have MDS/MPN with Myelofibrosis 3.

I live in Southern Oregon and am headed to Portland (other end of state) for a Bone Marrow Transplant. I will be gone 4 months. I live alone with an elderly dog and getting ready for this procedure has nearly knocked me out. I have to find house/dog sitters as well as 24/7 caregivers (I've got 8 who have committed so far). On top of that I'm leaving my 93 year old mother behind and she is constantly in tears about me leaving.

Between having to troubleshoot issues in advance for my 125 year old house and thinking about everything all at once I'm worn out and stressed.

I'm making a list of things to bring to the hospital. I will be there for approximately 25 days according to Dr. Can people chime in with what to bring, pack for the hospital? I know about the extra long chargers for sure and have ordered them. Just looking for advice from those who have been through this.

Thank you so much!

Hi Bonnie! Looks like you’re about ready for a new adventure, huh? The logistics of being gone for 4 months is really challenging. Moreso in your case with being absent from your dog and your 93 year old mom. Oh gosh, that’s really difficult. Does your mom do FaceTime? That might be helpful in this case. She’s going to need some reassurance so I’m hoping she’ll understand that this transplant is so important for you. Is she in assisted living? If she is, can you speak to one of the coordinators there?

I wish you well with getting everything else lined up. It does sounds like you’re doing a great job so far. It is stressful, I know. But it is also doable and important for your continued health to be able to get this transplant out of the way.
I have several links for you to read through that might help you in fine tuning your list of items to bring. Both for hosptial and off-site stay if you need to recoup as outpatient after your 25 days.
This reply is one I posted a while ago with all my favorite tips. Lots of links imbedded in it:
https://connect.mayoclinic.org/comment/1059221/
Another member recently posted this discussion where others have joined in as well with their tips for what to bring to Mayo…but it can apply to any hospital setting:
https://connect.mayoclinic.org/discussion/what-to-bring/
Don’t hesitate to ask us anything here. There are a lot of us who have been through a BMT and we love to help others along their journey!
Do you have a target date for transplant?

Bonnie, I am here too to answer any questions, odd or not that come up. Lori is all over the lists of what is needed and how those first 25 days will unfold. Once you review her links more will make sense. I heard from her how preconditioning goes and Day 0 and so much more. I was in California, but it felt like Lori and others who chimed in were sitting right with me. As the transplant team review with me, i was comforted knowing Lori gave me those tips before. So many hospitals follow the nearly same successful routine of the first 100 days.
Caregiving is so expensive, I finally got a very good friend to let me stay at her house for about 74 days to complete my 100-day request. To me it was the hardest part.
Your dear Mom. I do hope she is in a community. That she has someone to check on her. You will be able to call her. The questions you have will be answered.

Thank you so much!

My team up in Portland at OHSU is great and have informed me pretty well. I attended an 1 1/2 hour Zoom seminar on the process and what is expected of caregivers. I'm staying at an Air BNB near the hospital which works with the OHSU and is very forgiving about refunds, delays in moving in, etc.

I have Myelofibrosis 3, which is worrying to my doctors. My bone marrow is filled with material that will slow the engraftment of the donor's stem cells. This means my blood counts could be slower to come up and I'd need to stay in the hospital longer.

A wonderful friend of mine has organized a calendar with all the important dates for the Transplant and specific dates coming and going for 8 different caregivers. They are flying in from all over the country. I'm so lucky to have such great friends.

I still have a lot to do to get my home organized for my house sitters and I have a quick trip to Portland June 23 and 24 for two days of pre transplant testing.

I'm getting really exhausted - I've scheduled painters, sprinkler system repair, plumbers to get the house ready and it's been 100 degrees for the last 3 days.

I just have to get as much done each day as I can.

Thanks again!

Bonnie,

You will be amazed at how it will all come together with planning. Having such a great group of friends is wonderful too! As i was told over and over at City of Hope, challenges and diagnosis that are different get these doctors/scientists working to find solutions. Your Myelofibrosis you have in your body is likely the talk at their roundtables. We learn more about our blood and how it works and does not work. Those medical teams use their minds to find solutions.

Thank you so much for the links Lori!

I will go through your links this weekend. Tomorrow is my dental evaluation and then Dermatologist for a new skin cancer that decided to pop up!

Hi @loribmt !
Well, we made it to Day 365 yesterday! I remember putting that in my calendar many, many months ago as a gesture of hope when we were in the thick of it in those early days post stem cell transplant.
As I’m sure you experienced the first year, we’ve done a lot of remembering what we were doing and how we felt a year ago. I’ve had so many “pinch me” moments not believing that we’ve come so far since then.
Dane’s chimerism remains strong, his BM biopsy a couple weeks shows no evidence of disease and he continues to receive his childhood vaccinations. We talk about how we hope to meet his generous donor next year (if he agrees to being revealed to us) in Germany where he lives. It’s one of the next great milestones to look forward to. We are starting to think a little beyond the biopsies every 3 months for at least the next year. He continues on the monthly maintenance therapy (which isn’t fun for him but continues to be recommended despite solid data to support it). His odds of relapse go way down in another 365 days. So for now, we are enjoying the sweetness of this positive moment in our journey.
In the meantime, we also celebrated our wedding anniversary yesterday. I have to admit it was a bit overshadowed by Dane’s 1 year re-birthday.
I’m full of gratitude for God’s grace, his 35 year old donor, the angels who appear to us as doctors and nurses, his original complete remission, surviving the thriving through the transplant, and the maintenance medicines available to him. Without these things, we’d be in a very different place today with his original diagnosis of high risk AML, secondary to previous chemo for a different cancer. Lord, he has really been through a lot these past 6 years, emotionally and physically, with a total of three cancer diagnoses. Life is so precious. We celebrate his original birthday (66 this year!) at the end of the month as well.
It feels surreal to have this second chance at each new day.
He is going fishing on the ocean later this afternoon and he couldn’t be more excited. It’s his passion. He has more clothing, sunscreen, gloves, and even a nose shield to keep him covered, than I’ve ever seen on a fisherman! He is well aware of how important of how important it is to protect his skin. He even waded up to his waist in the ocean a couple of days ago for a brief time and loved it.

Lori, I hope you are doing well and looking forward to your re-birthday later this month. You are a special inspiration for us of what’s possible in our future!

Mary

Mary and Dane… So, truth be told, I’m sitting here trying to type blinking through tears of joy. Heartfelt congratulations to both of you for enduring the trials and tribulations of this past year!
You’re right, it is a time of reflection. I think you’ll find it happens every year around the anniversary of the transplant. It has for me (us). My re-birth day is coming up on June 28th. It will be year 6 and I’m already reflecting on what I was doing six years ago at this time. This was an enormously emotional/arduous time in our lives so it deserves the reverence of reflection and celebration…every single year! The celebration never gets old, because we are alive to see another year which wouldn’t have been possible without our donors and our tenacious fight to stay ‘vertical and ventilated’. 😂

I remember our first conversations very well and the trepidation in both of your hearts and minds for what to anticipate, how to prepare for the logistics of long term stay away from home and even choosing the right center for the BMT. You went into this fully prepared. I’m so happy to have been a part of that journey, along with our other members who so valiantly jumped to the rescue to calm your jitters, listened to concerns, offered suggestions and extended the lifeline of hope!
Congratulations also on another wedding anniversary. Though it may take back seat to the BMT story, the love story continues because of it. It’s all part of your life journey together. For my husband and myself, my journey through AML/BMT brought us closer together. We’ve always been solid but it’s easy to take things for granted. Facing death and getting that second chance really drives home the point that we are not immortal and things can change in the blink of an eye. So we’ve both learned to take more time to appreciate the small things in life, or as I like to say, “Live life like they left the gate open!”

We actually saw that situation unfold one day and it will forever be a moment etched in my memory. We’re on the road a lot. One day we were driving past a farm we’d seen many times with milk cows in a fence-in area near the barn. But that day was different. There was a breach in the gate! And my gosh, the cows were running pell mell out of the pen into the field…a couple were tentatively hanging back though. But one of them, whom we affectionately dubbed, Bessie, was running full speed, utter flailing in the wind…she was on the lam!!
Rick and I were both yelling in the car while giggling, “Run, Bessie, Run gurl!!” Hehe. Well, it was short lived as the trip home past the same farm saw the cows back in the pen resigned to a life behind bars…with farmer fixing the fence. Le Sigh.
But for one brief moment, that feeling of freedom, the elation of liberation had that old girl having the time of her life! That’s what we all need to be doing, every moment of the day! Never wasting a moment of our freedom to live.
Hah, how’s that for a morning sermon without caffeine! 😁

Thank you, Mary and Dane, for celebrating with your Connect family! This deserves a happy dance 💃💃 and cake! (I love cake! LOL) A huge group hug for the both of you!
Wish Dane the best of luck on his fishing expedition! Even if he doesn’t catch anything, the warmth of the sun, the cooling breezes on the sea and the salt water have such healing qualities…enjoy the moment. Love to you both! Lori

Mary and DANE!!! Wow!! What a wonderful piece to read this joyous Saturday!!! 365 days. 1 year!!! I like you are grateful for every single day i can get back t5o life as i know it. I am going to Vancouver for an event over 4th of July. My first plane trip since Christmas 2023. My hope is you get to meet your match. Three cancers put you into a different grouping Dane. I was told at a year there are choices. Not sure, but if we do not try, it will not happen. That is like our recovery. I have done every test and taken nearly every pill unless i forgot for the last 4 years for my 2 cancers. Treatment plans have a better chance if we follow the steps laid out for us. My sister found out the hard way with her cancer not going away. She came back to start over on her treatment. She is even considering the follow-up treatments.
As a fisherman, what a site of a joyous fisherman dressed in garb unlike others but there to keep him safer. That is a life to live. Joyous and free to be you.