Connect
My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
Connect
I'm relieved to say that our son Alex is now back home with us. Blood counts continue on their upward trend. He has responded well to Voriconazole!
My question now has to do with Depression ; could be a side-effect of some of the many medications he is currently taking or could be something else. Today is Day+63 and his appetite has returned for which he is grateful. Any experience with Post-BMT Depression?
Grace, that’s awful to be so close to transplant and have the rug pulled out from under you!
Was there no indication it wasn’t approved before yesterday? Had your insurance paid for pre transplant testing and then actually denied treatment? Wow!
May I ask what condition led you to your SCT? Is this using your own cells or a donor?
-
Like -
Helpful -
Hug
1 ReactionWaiting in limbo. Admission was scheduled for today but postponed. Pre-transplant testing was normal but insurance gave a denial. Waiting, with my caregivers after having moved us far from home to near Mayo. Appeal will be in about two weeks. I was blown out of the water and caught off guard by the denial.
-
Like -
Helpful -
Hug
2 ReactionsJust seeing what information gets posted before I share as I'd like to share without giving my name or email
We faced blood sugar issues post-ASCT when starting Bactrim and are likely looking at Pentamidine treatments instead. We have been working with a diabetes team at Mayo. The continuous glucose monitor they put in on Day +20 gave us immediate alarms, and allows them to analyze the data and suggest adjustments to insulin and eating habits. Still, the antibiotic therapy needed changing even after we are home from Rochester.
Recovery is a long process! We like to look back at how far we have come…
-
Like -
Helpful -
Hug
3 ReactionsWe are at home, and my wife, the patient, is doing well.
Pros: Low cost. Isolation from random infections — we successfully avoided infections and hospitalizations. Nearness to Eisenberg — we walked over (pushing my wife in a wheelchair) every day. Parking was free and available. They had a nice prayer room and Yamaha keyboard. The staff and volunteers were great. The blood draws at GOL were convenient. The public spaces in the house and the grounds provided ample room to move about and avoid cabin fever. The company of other transplant patients felt good. You can get mail and packages there.
Cons: Rules are strict and take some getting used to. A significant number of residents move through quickly. Rooms are small. Beds are small. Providing your own supplies can be difficult. Room availability isn’t guaranteed. Stays can end suddenly if anybody becomes contagious.
We spent a preliminary eval week there three weeks before the transplant, so we knew what we were getting into. It was an excellent choice for us.
-
Like -
Helpful -
Hug
2 ReactionsHi @leilab1…I’m always so cautious when tossing out ideas because I am not a doctor ‘nor do I play one on TV 😅” but there are things I can say from experience which may sometimes give a nudge to someone else…that’s all. ☺️ I’m happy if this change in meds helps your son.
I also hope I can ease your concern over the Pentamidine treatment. This is important for him to receive monthly. It’s a breathing treatment meant to protect his lungs from serious Pneumocystis pneumonia that can develop in immunocompromised people. If the treatment does increase his blood sugar his team will be on it and treat accordingly. But don’t let him skip this treatment.
You have to understand, at this point in his transplant, all the rules for what you know about ‘normal numbers’ are off the table. He’s going to have blood numbers, liver numbers, kidney numbers, etc… going up and down for the next few months. Everything in his body is in a state of flux.
If his glucose goes high during a treatment don’t worry about it. This doesn’t mean it will change his numbers for the rest of his life. And if so, then that will be dealt with at the time.
Honestly, it sounds as though Alex’s recovery is really becoming routine and he has a great team on top of everything. I think you can start relaxing about his recovery. ☺️. Though, don’t be surprised by a little excitement tossed in from time to time.
I learned the key to survival with a bone marrow transplant is to always keep flexible, have a sense of humor and a sense of adventure. Life is never boring. But there is a life…Alex will come through this on the other side and he’ll feel pretty invincible for what he’s gone through, overcome and survived! I’m 69 and feel like Wonder Woman… sigh…but lack her body. 🥴
-
Like -
Helpful -
Hug
4 Reactions@loribmt
Hi there! Hoping all is well with you and yours.
When you first told me about Voriconazole, I read the literature that you had sent. It was so compelling that I did further research. Convinced that this was the proper way to proceed, I called my son's nurse and had an extensive conversation. I begged her to relay the info to Alex's doctor and she assured me that she would do so. Later that day, the same nurse called me to report that the doctor decided against starting Voriconazole and would continue with Micafungin. I was frustrated and disappointed but held my peace.
Today when I was reviewing my son's med list, I was taken aback: Voriconazole was newly added to the list! He will stop the Micafungin this Sunday before starting Voriconazole on the 24th of this month.
Thanking you greatly for mentioning the article! And KUDOS to you for finding it for me!!!!
Honestly, I am more concerned about him starting Pentamidine on the 24th. There are some nasty side-effects among which is an increase in blood sugars ; his glucose is already out of range high and his father has been insulin-dependent for years. It will bear watching.
Just when I think that I can start to relax about recovery, something new pops up......:(
Hi Jim
What were the pros & cons of staying there at GOL house? I'm concerned when I'm not feeling good & need to eat/drink that I have to go to dining room?
Are you home now? Hope you are doing well?
Finishing stem cell transplant process, having stayed the entire time at GoL (Old house). Any questions?
-
Like -
Helpful -
Hug
2 Reactions