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

@loribmt
My son Alex has finally landed at the Hope Lodge where he was initially scheduled to be.
He is still experiencing nausea and vomiting, mostly in the morning, but able to keep food down for the rest of the day. My recent concern is that he relies on Lorazepam to sleep at night and I have to wonder if this could be responsible for his nausea? Any thoughts?

Hi! Alex sounds like he’s right on schedule now. What’s the old saying? It’s not a race, it’s a marathon. So there is a slow and steady pace to this process. The first month is the roughest. I think most of us in the allo-transplant world will agree with that. It seems almost insurmountable some days but we take one day at a time. Sometimes 30 seconds at a time…but we get through it, coming out on the other side feeling a bit like we have super powers.
I just read an excerpt from the small journal I kept with my transplant odyssey. There’s an entry from Day +37. It parallels Alex’s. I’d finally ditched the wheel chair needed for my 2 block ‘ride/walk’ through the Subway (lovely underground walkways between hotels, businesses in Rochester) to Mayo every day. Finally had the energy to walk longer distances! I was starting to eat again, though had daily bouts of nausea that came on like morning sickness.

Oh my gosh, the lodging issue is a problem for sure. For my 4 months in Rochester my husband and I stayed at a Marriott Residence Inn where we had full kitchen, 2 bedrooms, 2 bathrooms which made our stay a safe haven for our home away from home. BMT at Mayo is outpatient so I was only in the clinic for a couple days prior to transplant and 1 day after. I reported daily for blood draws, infusions, etc. It was a wonderful experience and awesome not being in a hospital setting for recovery. We could control my environment which needed to be kept pretty sterile.
I had to be no further than 30 miles from the Clinic for 100 days. We were less than 2 blocks away in the hotel.

A hotel room with a kitchen or kitchenette would be helpful for Alex and your husband, at least until the recovery house is available. Just make sure everything is wiped down with a disinfectant, shower curtain is new to avoid any fungal issues. Is there anything like that near the clinic where you son is being treated?

Hi! Alex sounds like he’s right on schedule now. What’s the old saying? It’s not a race, it’s a marathon. So there is a slow and steady pace to this process. The first month is the roughest. I think most of us in the allo-transplant world will agree with that. It seems almost insurmountable some days but we take one day at a time. Sometimes 30 seconds at a time…but we get through it, coming out on the other side feeling a bit like we have super powers.
I just read an excerpt from the small journal I kept with my transplant odyssey. There’s an entry from Day +37. It parallels Alex’s. I’d finally ditched the wheel chair needed for my 2 block ‘ride/walk’ through the Subway (lovely underground walkways between hotels, businesses in Rochester) to Mayo every day. Finally had the energy to walk longer distances! I was starting to eat again, though had daily bouts of nausea that came on like morning sickness.

Oh my gosh, the lodging issue is a problem for sure. For my 4 months in Rochester my husband and I stayed at a Marriott Residence Inn where we had full kitchen, 2 bedrooms, 2 bathrooms which made our stay a safe haven for our home away from home. BMT at Mayo is outpatient so I was only in the clinic for a couple days prior to transplant and 1 day after. I reported daily for blood draws, infusions, etc. It was a wonderful experience and awesome not being in a hospital setting for recovery. We could control my environment which needed to be kept pretty sterile.
I had to be no further than 30 miles from the Clinic for 100 days. We were less than 2 blocks away in the hotel.

A hotel room with a kitchen or kitchenette would be helpful for Alex and your husband, at least until the recovery house is available. Just make sure everything is wiped down with a disinfectant, shower curtain is new to avoid any fungal issues. Is there anything like that near the clinic where you son is being treated?

@loribmt ,
Good morning! I appreciate your asking about Alex's journey. Today is Day +39 and I'm extremely thankful to report that Alex has begun eating solid food again and although he is still having a suppressed appetite, he seems to be heading in the right direction. His Platelets and WBCs continue to creep upward. The infections and fevers are behind him now. This is all wonderful news and a huge relief!
Doctor says there is a 75% chance that Alex will be discharged today or tomorrow. However, we
are having issues with recovery housing. The facility where he was supposed to stay has no availability right now and so we are once again on the waiting list. When we began this whole process, we were assured by the social worker that recovery housing would be taken care of by them. That particular social worker is presently on vacation and nobody else seems to know how to proceed. This leaves me frantically searching for recovery accommodations online. I'm hoping to hear from a new social worker today. Wish us luck!

Good morning, @leilab1! I’m hoping you have some positive news about Alex. How’s he doing? Was he released from the hospital setting and at the recovery lodging with your husband now>?

@loribmt

Yes Alex is on Fluconazole as well as Posaconazole and Vancomycin. They already took him off the Ursidile.

Hi!
Thank you for your advice! I am using the dexamethasone oral solution and the ointment but so far it hasn’t really helped much. I’m glad you had success with it so I’m encouraged to keep using it. I use Triamcinolone Acetonide dental paste as well. Some of the spots on my tongue went away but the sores in my mouth are taking longer. 😊

Forgot to ask- What helped you get over the skin GVHD and how long did you have it?

Hi @jenmkr63 It’s quite amazing what our bodies can go through and overcome, isn’t it? From experience, it can take a good year or so to start feeling appreciably better…to the point where you start believing! Finally being off all the meds also makes a huge difference.

I was on my immunosuppressant for 2.5 years and with that I was also on 2 antibiotics, antifungal, antivirals and other meds until I tapered off the Tacro. That went up and down a bit and then eventually off. I did start my vaccinations before that though, which is important. Compared to what I went through, I really thought I felt great! But when I was finally off everything, wowzeeee. Game changer!

I know the irritation you feel when people keep asking, “how are you” every day. You simply don’t know! My husband did that too and I tried to not get impatient with the daily question. It’s so difficult to get across that some days are stellar and then we over-do…the next 3 days it’s all you can do to drag your bones out of bed in the morning.
It gets better!!! Your first year is the toughest so just keep doing and listen to your body. Four years later, I feel like nothing ever happened.

In regards to the tacro ointment. It wouldn’t hurt to keep up with the daily applications for awhile. I was told to use it for weeks beyond when the area healed. It works slowly but does wonders for keeping the inflammation under control.
Did you mention the sores in your mouth to your bmt team? There is a great steroid mouthrinse called Dexamethasone. (Picture below) The instructions are to take .5ml Am and Pm. Rinse for 30 seconds only, then spit it out. It’s amazing how well it worked on my mouth sores.

I also needed to use the tacro ointment off label and apply it to the areas on my tongue. It can be taken concurrently with the Dexa mouthrinse. Talk to your doctor! You don’t have to suffer!
We have been given a second chance with life. Yes, it comes with some potential side effects and risks. But we are here! We’re living our lives and for me, I’m relishing every day.
The keys are remaining flexible, keeping sense of humor and having a sense of adventure. Because no two days are alike. 😅