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

Posted by Lori, Volunteer Mentor @loribmt, Feb 14, 2021

The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori

What diagnosis brought you to a BMT?

How has it impacted your life and that of your caregiver?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

katgob | @katgob | Feb 15 10:33am

Hi all!
I had my follow-up yesterday at our brand-new building at City of Hope Duarte. Easy to read listing of floor1-8 on the wall. I did not realize the blood/VAD was just to the left of the wall info. I got on the elevator. I thought we were on the lower level. Funny though, A COH person taking someone up to a floor said there are not blood services in this building. I said really? I have an appointment in the HOPE building today in blood/infusion services. I went back to floor one and found another worker who said to go right at the wall sign.
That department now has dozens and dozens or rooms and beds for blood services and infusions. In the past we traveled to many floors to get to a bed for our infusions. Sometimes the blood donation building right by this new building.
Not a very nice attitude of my blood draw nurse today. Not personable as many are. We were done
quick and i got outside to join a zoom meeting for a while.
Next, I was up on floor 4 for Hematology. I got in and was seen within 10 minutes. But, just before going in i got my numbers. My freaking creatinine number was 120!!! I have never been that high. I immediately thought Mepron. The Dr. is going to make me take that. My vitals for my heart rate were at 129 upon arrival in my wait room. I could feel my heart beating fast. Another nurse came in to take it again and it dropped to 118. She asked me if i had heart problems, Afib or anything. I do not know her and no i said nothing like that. I said i just had a high result on a blood number and it freaked me out. This is why my body was reacting. My NP Hannah came in soon. She said i was going to get hydration on Floor 8 once our visit was done. 120 was not high enough to switch meds. From then though we laughed and laughed. She asked me if i go hatless. She loves how i look with short hair. I told her i will but for now it is too cold. But at this point all my other numbers were good and my 1 yr BMB is April 7th. Crazy. As we wrapped up the Dr. poked his head in. There was so much noise in this room he thought something was wrong. Oh no DR i said, we were having some laughs.
Yikes! I told the NP that yes, at 64, i have never been told i am a quiet person. I have learned to speak softly, but on this day, I had found out that I DID NOT DRINK ENOUGH WATER. This cannot be blamed on anyone else.

To all, no matter the length of time you have been on this journey, check how much water you are drinking. Most people do not get regular blood tests for creatinine. For today i have them every now 3 weeks. I must not just drink for the next blood test, but to help my body through my life every day.

Lori, Volunteer Mentor | @loribmt | Feb 14 9:00am

In reply to @millicentw "Colleen, I would like to be part of this group discussion. I had my BMT in..." + (show)

Hi @millicentw! You are now part of this group so welcome to Connect and to the BMT club…such as it is. We have a growing number of members who have had a bone marrow/stem cell transplant for a variety of reasons. It’s a safe haven to discuss our transplant journeys, ask questions and offer support. We can be particularly helpful to newbies who are about to undergo the process.

Congratulations on your successful transplant. You’re one year ahead of me. I had mine in June 2019 and happy to say all is well! I’d love to have you share your story with us right here in this discussion where you’ve already posted!

There’s also another discussion that’s kind of fun. I started it a few years ago with a photo that wouldn’t be possible if not for having the transplant. Pop a pic in that discussion if you’re so inclined! ☺️

Snapshots of Hope: Life on the other side of transplant:
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
What illness brought you to needing a BMT?

millicentw | @millicentw | Feb 13 6:45pm

In reply to @colleenyoung "I'd like to invite @leukskywalker @jessica0 and @taybro4 into this discussion too. @lisal64 @loribmt @edb1123, what..." + (show)

Colleen, I would like to be part of this group discussion. I had my BMT in 2018. In remission since. Thanks

Lori, Volunteer Mentor | @loribmt | Feb 10 1:36pm

In reply to @katgob "Slow posting. I need to check in and say on Monday i found my CMV levels..." + (show)

@katgob

Slow posting. I need to check in and say on Monday i found my CMV levels went back down. A sign my new immune system said to get out. I think so. My transplant was April 9th, 2024. My next BMB is in 2 months. I am hoping my feeling good will mean the results of the BMB are promising.
I thought about something on my walk today. In July of last year, I had finished my year of Lynparza and was excited for my follow-up visit with my oncologist's office. At the time, the fact my Medical Oncologist had moved to another hospital was only a could months past. and i was considered done with my BC treatments. My Nurse Practioner was my only holdover from my breast cancer journey. My breast surgeon first went to Cedars before my MO joined her in their new state of the art department at that hospital.
Well, my NP had told me in May she was pregnant and would be out for the allowed time. I was excited to see her at my appointment and hear about her baby's arrival and all. I had gotten a call from COH to change the appointment but i thought little about it. At the appointment I was now in a different wing in the women's center than i had been for 2 years. When the NP came in, she was not my regular or anyone i knew. As she talked with me. She told me my NP had decided to stay home with her baby. I felt sad right away. I left that appointment knowing the blood numbers in my blood test were worrisome to me. But, because neither the MO and NP knew my case or walked through any part with me, concern was not there. I was let down as i drove home and thought of my loss of my relationship with my NP. She was my champion that helped me through the 2 years. The MO led the way but worked with her NP. Alexandria would have looked at my blood numbers and recommended seeing a hematologist. I had pancytopenia in my BC treatment. I was a platelet donor for 25 years. I knew my blood numbers.
Today i thought what might have happened if i had not advocated for myself and got a referral to the hematology department. My blood readings slowly went down. My next appointment would have been 6 months in January for the new MO/NP. At what point would they have noted any blood number troubles and referred me?
I was reminded that if you have a spouse or are the caregiver for an MDS or other blood cancer patient, you are the support and love a patient will need through this journey. I had a group of friends who listened and encouraged me to keep speaking up. Let the medical team know what was going on. Having no real illnesses most of my life, I was uncomfortable being uncomfortable.
Today I am checking how i feel as i start my day as i have done nearly every day since my transplant. I hope all of you do too.

Jump to this post

Kat, I’ve had to limit my time on Connect this week. I meant to reply the other day so I’m sorry for the delay!
That’s fantastic news about the CMV! A testimony to the strength of your new immune system. Yay Team Kat!!
Reading through your story of losing your beloved NP…our medical teams when we go through something like your breast cancer or the bmt, they become our family members because we see them so often. A true connection with some of them for sure.
I’m so proud of you for following through with the drop in your numbers because it allowed you to get on top of things. We do have to be advocates for our own health!
Having the preemptive BMT was the best thing you could do for your long term health. I’m so happy you’re doing really well. Your posts are always such a positive validation for the decisions you made! As always, thank you for sharing. You make my day! 😍

Lori, Volunteer Mentor | @loribmt | Feb 10 1:00pm

In reply to @dwolden "You mean 💯 donor isn’t forever?? 😞" + (show)

Dorothy, while rare, it can happen! However, your husband is getting a ‘boost’ of cells with the DLI, which should help give the a nudge to start ramping up the cell production! Don’t go looking for trouble…his team is on it! ☺️

katgob | @katgob | Feb 10 12:54pm

dwolden,
For me, the 1 year will show in my BMB results if i am 100% his or my cells have snuck back in. Those tough German genes. One never knows.
Unless blood donations change, my new O blood will never be able to donate. A blood donor forty-three years ago to start, then a flip to platelets for 25. Then a recipient 6 total times for a mix of blood and/or platelets. I had tears in my eyes for every one of these donations and my donor cells. What an honor to get what i had freely given. I LOVE blood donors.

dwolden | @dwolden | Feb 10 11:06am

In reply to @katgob "It has been a while on this thread. I had my 1-month appointment follow-up Friday the..." + (show)

@katgob

It has been a while on this thread. I had my 1-month appointment follow-up
Friday the 10th. Blood pressure 110/71. My white cells went back up. Talking with my sister last month i told her i felt slightly like i had a cold so maybe that caused it. For the last month i have worn a mask most places and
I walked 5-6 miles every day. Drank my 80 plus ozs of water and kept my creatinine at .81. Yet, looks like my liver enzymes went up a bit. Oddly, the doctor asked me how many of this one pill i was taking and i said 2. he said take three. The odd thing is the pill he spoke about for the live/gallbladder i stopped months ago. It was not on my list anymore. I was talking about the pill Acyclovir- An antiviral drug-. It slows the growth and spread of the herpes virus in the body. Acyclovir will not cure herpes, but it can lessen the symptoms of the infection.
That one i take twice a day. AH ha!! This did not come to me until i left. I added it to the portal to let him know. Maybe this pill will help. I am going back this week for a blood test. I never took that pill right the months i took it. I seldom remembered the midday pill. This time I will.
The DR. was an hour late. I was bugged. When he came in, I had learned his regular nurse was out and he had a floater nurse. Plus, he had a patient before me that had just lost his home in one of the fires. I think he said it was his transplant patient 2.5 years down the road of recovery. Sometimes he is hard to hear.
He made notes in my chart. I said i am glad something was not right. He did say he would like me to have some GVHD. Well, it all just reminded me one more time that I am a transplant patient. I had my transplant April 9, 2024. To all of you. Sometimes it is hard for me to believe that i had breast cancer in 2021 and MDS in late 2023. I do not wish gvhd symptoms. I had asked the team from transplant research what if i do not have gvhd? I was told that some people do not.
Lori mentioned things just will happen. My next BMB is not for 3 months. That will let me know if i remain all donor.....
Take each day and add laughter and good times. Drink water (half your body weight in ozs) and exercise.

Jump to this post

You mean 💯 donor isn’t forever?? 😞

katgob | @katgob | Feb 7 10:24am

katgob | @katgob | Feb 2 3:42pm

Lori, I love your post. I emailed the fellow at COH as they are putting together a zoom/email system for patients and future patients going through transplants. I think I mentioned it. I talked with him over a month ago. It is a trial, so we shall see how it goes. He said it is still being worked out. As a nurse told me a while back, COH is centered on science and cures. Technology like Mayo Clinic's resources needed those younger tech genius staff members to move them forward. I am kidding in a way, but with zoom and those platforms, it is a good venture to move forward on.
I cannot BELIEVE I am day 299!!! Wow. The journey was made so much easier with you Lori and our fellow transplant patients and families. My breast cancer group could not speak to this BMT road. I took a happy detour I will always be grateful I found.

my44 | @my44 | Feb 2 11:10am

In reply to @katgob "Here we go. Day 298. My next Bone Marrow Biopsy will be schedule on my next..." + (show)

@katgob

Here we go. Day 298. My next Bone Marrow Biopsy will be schedule on my next visit February 14th. 365 days. I love the way it gets done right on time!!!!! I will make sure to ask for my favorite PA for the procedure. I was asked if i was ok coming thereon Valentines Day!! Sure. It means i am taking a valentines treat for all!! The new "Hope Plaza" is opening at City of Hope. Our bottom Floor women's center will be there, Hematology, the Pharmacy, VAD, blood draw, scan machines and so much more.

My PA is thrilled with all my numbers. My CMV result does not come till Monday or Tuesday, but she said no worries. Another pill is used. My liver number went to normal after starting the Ursodiol again. All other blood numbers very good. It was 2 weeks since my last blood test. Creatinine was .76. Whew. Plenty of water as i try for 80 plus oz. a day. This is what they love seeing. I look at my blood numbers and go right to the big C #. If it remains over 100, I have to drink the orange Mepron. YUCK!!!! I am drinking water. I do not ever want to drink that stuff again.
I did tell her there was one problem. Hannah said I look GREAT!!!
Quantitative immunoglobulins. - Love these medical names. This number was just about at the lowest desired. This number was the highest I have had. That is why she was not bugged by my lower neutrophils. She asked if I felt run down or had sniffles or anything. That is a cause for those to come down.

There is a "Library" with every disease the hospital treats. Spanish and English. That is the room the Notary meets you if you need one. It has been the VAD waiting room and more. I went through it and asked the young lady if she gets to more to the new building. No, she does not, and she says she does feel disappointed as all the people walk by with the boxes for their new offices. I told her I will stroll through as i walk from the new building through hers to my favorite cafe. I hope others do too. The floor that had way too much along with the emergency also called the ECT may be taking up much of that floor in the future. The care at City of Hope gets better all the time.
Catching up to the Mayo Clinic. The west coast best in the west.