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

@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!

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
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 Rosemary
Jumped in here, I am looking at gift of life transplant house too. I'm having a stemcell transplant. Can you share with me, the pros & cons of staying there? We're you in the older home or newer transplant house?
Thank you!!
Bev

Finishing stem cell transplant process, having stayed the entire time at GoL (Old house). Any questions?

Having Alex out of the hospital is good news! I’m glad that has gone well for him. He’ll feel better having some sense of ‘normalcy’ in having a more homey living arrangement. Obviously I know there’s nothing normal about any of this but he’s getting better and stronger each day. Like I mentioned before, this recovery is long and slow so don’t be discouraged!
The vomiting and nausea is still quite normal and no, I don’t think the lorazapam is the culprit. It is one of the standard anti-nausea meds given to us during transplant. Looking back on my journal, nausea was my friend for the first 2 months thought it started subsided into mostly mornings like your son. So tell him to hang in there! And if the lorazapam allows him to sleep, that’s a good thing. There is a less drowsy anti nausea med that helped me when I no longer required the strength of the Ativan (lorazapam). I switched to sublingual Zofran. Tiny tablets that melt under the tongue in moments. They worked great when I was nauseated without that sedated feeling of the Ativan.

Alex’s body has gone through a lot of trauma. The preconditioning chemo, for lack of a better word, is brutal. So it takes time for the body to recover from that and the transition of the transplant itself. He’s right on track. ☺️

I’m happy to hear he’s eating and keeping things down! Right now calories are important…more so than the nutritional value. But if he can get down good protein and carbs he’s good!
Thank you for sharing his progress. I’d been thinking about him today! And you…how are you holding up?

@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?

@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......:(