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

I got my 2 week check today. I am 129 days from transplant. Besides flea bites, I am still doing very well. The RN nurse came back from pregnancy leave so I just met her. Very nice. I gave her the brief history; she knew about my cat and flea problem and said we are now connected! My red cell numbers are slowly coming up. All others are stable and platelets up to 270.
Think positive, and for every day wake up and say Good Morning. How do I feel today!!

I hope all has been resolved and your husbands care plan is back on track. I am feeling very much in synch with you.
My husbands allogenic transplant here at Mayo Rochester is scheduled for August 22. Our home is four hours away so we moved here, temporarily, a month ago. Most of his pretransplant testing went fine but there were some issues. It has been a real roller coaster of scheduling changes and medication adjustments. I have struggled with not knowing who is coordinating all this: I am told it is his transplant specialist but of course it is difficult to get messages back and forth with a very busy MD.
We are on track now and managing the changes as they come. His first day of conditioning chemo was yesterday. We’ve had a lot of good patient education and support from peer mentors ( looking at you Lori) and the nurse managers at the transplant center are very good: I would prefer to have just one contact person but the “team model” apparently means several people. The reception folks at the transplant center always seem to know what to do with my questions and we are now with the stem cell transplant team at the hospital so in good hands. And we need them: we’ve been through a lot in life but this takes the cake.
Just want you to know you are not alone, keep advocating, you are his champion and that commitment will help your care team do the best for him.

dwolden,
Thank you for the update. From COH in Duarte California I found the transplant team different. My Hematologist DR was not my contact once the transplant team setup all the testing. I was surprised, except Lori and others mentioned this fun fact. I got calls from the social worker and others on the official transplant team. As i entered the precondition week I talked with the RN's who gave me my chemo infusions. They updated me on each of the 5 days on what to expect in the transplant unit. Only 1of the five was too self- involved with the nurse she was training. My last day in the day infusion department my chemo took 2 hours to just get going!!!! I was being admitted to the hospital the next day!!! I never spoke to my Doctor this week. Once I was admitted into the hospital day 5 of conditioning, the transplant team fully stepped into action!! I found out about the 8-9 am rotating doctor and his team who checked in.
At Mayo, I have read sometimes you are at your offsite home. I see the reason to be nice and close. What I know is my assigned RN team was there. They have a number of patients, but i did find my overnight staff choose this time. A number of them had the spot for years. The calm in the nights allowed for extra time to help patients as needed.
Caregiverx2 and you both take care of you. Quiet moments of gratitude to start the day and throughout the day. The transplant team wants this process to go well. They facilitate together to make it work.

Good morning Kat! Those pesky fleas! Yikes…if it wasn’t for those, you’d be breezing right through this SCT business! I hope those little bugger’s days are numbered. I do know the eggs can be in rugs/furniture and will pop open with friction or even the beater bar on the vacuum. So treatment with the food grade diatomaceous earth needs to be repeated. That will dry and crack the eggs and also any living fleas. Good luck to you on that business!

And ya to the blood numbers making their march towards normal! I’m glad your RN is back too!
Your positivity has been an important key to your continued success, m’dear! Sending an air hug!! 🤗

Now that your husband’s in Station 94, he’s in the most excellent hands! His care team there will be consistent though, you may see some different on floor doctors daily. However, they are all briefed each day as a team so they are fully aware of each patient on that floor. Hopefully all your pre-transplant jitters and scheduling ‘mis-haps’ or whatever they were are all in the past and it’s smooth sailing from here on out!

I smiled with your line “ we’ve been through a lot in life but this takes the cake.”. Ain’t that the truth!! My husband and I too…we’d been married 45 years at the time I received my transplant after the previous months of chemo. Wow, talk about a life adventure. Now we feel like we can manage anything after that!

I’ll be thinking of you both as you go through this week! The first couple of days most likely won’t change much for your husband with the pre-transplant chemo. But by day -3 or -2 he may start feeling a little more loagy…fatigued and feeling ‘off’…that’s the best way I could describe it.

Anyway, we all react differently. So as long has he’s feeling like eating and drinking, have him work on keeping up his nutrition. I think the kitchen closes at 6PM so it’s ok to order extra foods. I had meds to take in the middle of the night so I’d frequently order extra banana bread so that I had something to nibble on at midnight. Also, my husband would bring lunch or dinner that he made for me. There’s a refrigerator in the Family room off 9-4 where people can put foods if they need to. We didn’t really keep anything there because we lived less than 2 blocks from the clinic so Rick would just bring a lunch bag for me.
There’s also the snack room for transplant patients. You can make toast, there are premade sandwiches, protein powders, pudding, popsicles, etc., available 24/7.

Dorothy, are you spending most of your day in the hospital or getting out and walking around…keeping busy?

@dwolden
My husband's first day of conditioning chemo was yesterday (8/16) as well. Things seem to be back on track with the team. We are just taking things one day at a time now. I feel fortunate that we are close enough to home that I can run back and forth as necessary. It is probably a good thing that they won't let him come home immediately after the transplant. I think the temptation of doing things around the yard would be too much for him to resist.

Trust me, he’s not going to feel like working in the yard for a couple months! Fatigue will most likely be his buddy for the near future. That’s not a bad thing…it’s nature’s way of telling him to slow down and recover slowly. A bone marrow transplant journey is a marathon, not a sprint. ☺️ However, I also know that it’s frustrating as heck if he’s a very active person and now has to be sidelined for a while. I learned the hard way that we SCT patients have really great days where we over do, and then pay for that thrill the next 3 days. So, again, slow and steady wins this race.

Also, he’ll be very susceptible to infections so exposure to molds and fungus in soil will be important for him to avoid for a while…no gardening, no pulling weeds or raking until he’s off the immunosuppressants and his doctor clears him for that type of work. I’m 5 years post transplant and still wear a mask when I’m working in the soil or raking leaves. It’s that important…lung infections can happen easily!
When I was able to return home after my 100 days, my doctor even advised wearing a mask in the car (this was pre-covid) in case there were any mold or fungal spores in the A/C vents.

It’s pretty cool that your husband and @avaleir are in the clinic at the same time for transplants. Wonder if you’ll ‘bump’ into each other at some point! Give your husband an air-hug or maybe a high five from me. 🤗

I love updates. I am using the diatomaceous earth. I bought my 2nd bag. Tomorrow, I vacuum it up and lay out a 2nd batch. Cover with a box or newspaper. My cat is staying away. I checked with my vet and cleaning bedding, stuffed animals, cat toys, couches. All need treating. My cat has the med that works 3 months. Fleas must bite him to die. Today I flea comb him and vacuum.
I attended something that was not heavily crowded and i wore an N95 all day. I wear a mask everywhere.
The fun thing is 1 month home after my 100 days, so 130 days tomorrow after transplant and i have a very soft layer of hair across the top of my scalp. The sides not that long. I had a thought that my donor could have a natural mohawk and now i got that!!!! I guess time will tell. You would think i might remember how fast my hair grew the last time i lost my hair in late 2021. Nope. Almost 3 years later, i am not bogged down with continuing chemo, so i can feel how i feel.
Once you walk through the conditioning day and get to the magic Day O, Lori will remind you that a new road of life will begin. Air hugs to all.

He is on day -4 and doing well. The only issues so far have been plumbing issues which caused us to have to change rooms and leave our room with the great view of the lake. The toilet was backed up the first day. Maintenance came and declared it resolved. Ditto for the morning of day two. Evening of day two water started gushing everywhere when flushed. Maintenace called for the third time. Then on Sunday, the nurse got sprayed after she dumped a urinal in the toilet and flushed it. She was coming out of the bathroom. It soaked her from head to toe. I was standing in front of her at the foot of the bed and I got splashed as well. She headed for the showers, and we moved to a new room. I hope they get it fixed for the next person. At least it made the time interesting. I know the hematology oncology unit will be glad when construction is complete, and they can move to their new floor.

Caregiverx2
I like to look at these funky experiences, as something to take my mind off other things. I am sure the RN has had worse in her time, but the fun seemed to be spread. Hopefully you both did not have lots to move. The view will be missed i am sure. I only saw mine when i looked sideways into a cubby that had an odd size chair for the space. I was hooked to my rolling sister with the tubes. Mostly on my bed so i got views when i get out and walked like they wanted. At Day -4, you are one day closer to 0. I hope you both get some sleep.........
Our hematology at COH is moving too. I guess both hospital staffs have something to look forward to