One-week pre Autogolous BMT: I'm afraid I'm not prepared

Welcome to Connect @jstpeachey! I know I shouldn’t but I just have to use your @name and tell you that this will all be Just Peachy”! You’ve come to the right place because there are a number of us who have been through the BMT process and are more than willing to help out where we can.

How long do you need to stay near the clinic? My husband and I relocated to Rochester for 4 months during my allo transplant. So needless to say I packed everything but the kitchen sink. 😅. Not really and I was surprisingly organized! (That’s not my strong suit!). We stayed in a 2 bedroom, 2 bath hotel suite so we were limited in space. With a condo, that will feel more like home. Here is a link to a reply I previously posted on what to pack for transplant:
https://connect.mayoclinic.org/comment/703859/

And another discussion for patients with solid organ. But no matter, the needs are the same when we live away from home:
~Packing question: What did you have ready for "the call"?
https://connect.mayoclinic.org/discussion/packing-question/

We have a number of members in the forum who have had Auto transplants who have shared their stories and experiences to help others along the same journey. I’d like you to meet @auntieoakley. @ckeys @callie28 @countrygirlusa @capthondo and others who have gone through this journey or are caregivers. Their experiences are posted below in the links provide.

This reply is from 30+ days after @capthondo had his transplant! It remains such an encouraging, positive comment!
https://connect.mayoclinic.org/comment/746563/

@capthondo shares his auto transplant story here:
https://connect.mayoclinic.org/comment/747475/
It’s from this discussion group for Multiple Myeloma:
https://connect.mayoclinic.org/comment/716285/

@countrygirlusa had an auto transplant for AL Amyloidosis which is a ‘cousin’ of multiple myeloma.
https://connect.mayoclinic.org/comment/716285/
The full discussion link is here:
~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

A big suggestion is to avoid the negative comments. We all go through this journey on our own terms and we’re all different. It isn’t an easy journey but I also think you’ve gone through a lot already to get to this point! Right? So this is nothing more except a new step into unknown territory. But it is a means to a healthier life ahead. May I ask what bought you to needing a transplant?

Hello @jstpeachey the honest truth is we were terrified when my husband had his first at Mayo Rochester. I really did pack everything including the sink. Mayo tries to prepare you for everything but nothing really can. You are already in the process if you have rented a condo, and done your collection. Each step you go through will be new but you will be ok through it. There were some pretty hard days for my husband at about post transplant day 10, but this doesn’t last and you have all the support being treated at Mayo can give. These people are the best of the best.
My husband did this twice and collected for a third just in case he would need it. Our favorite saying is “it wasn’t always easy, but it is always worth it”.
The things that brought us the most comfort being 1300 miles from home.
Our own down comforter, britta water pitcher so the strange water didn’t taste funny, our own tea cups from home.
Comfortable loungewear, and something to keep hands and mind busy during the long days of “just being there” are important for the caregiver. Thank God for knitting. Lol
My husband gained 13 years and counting with Multiple Myeloma, he just told me he would do it all again.
Do you have specific concerns about the chemo, or the transplant?

Thank you so much for the quick response, I am just peachey, lol, and I use that a lot, so yes you may too. I was diagnosed in February, just shortly after seeing a spine specialist in January who discovered the lesion on my L1 vertebrae. I went to see a specialist because I had started have excruciating sciatic issues, people kept telling me to go to a chiropractor, I’m so glad I listened to my gut. Had a chiropractor adjusted me, it probably would have fractured my spine. So that’s why I’m in the here and now, my oncologist didn’t waste any time getting me going on my treatment and now my transplant. We caught it really early so hopefully we have nipped it in the bud and why I’ve had such a good outcome so far. Thanks again, I will go and look at all the links you’ve suggested.

So good to hear about your husband and thank God for Mayo. My main concern is how to prepare after chemo, since your not to be left alone, you can only stock up on so much. Were you able to leave him after a certain amount of time to replenish? Did you depend on delivery services?? One thing I’m embarrassed to ask but really need to know, did he need adult diapers?? I have to go to Mayo daily after the transplant, I’m so afraid of accidents. Another is pre cleaning, how extensive did you have to get? Any suggestions will be helpful

I could leave for a short time after a while. So let’s gets into what happened for us, it could be different but maybe our experience can help you.😘
He got the chemo over two days and he felt pretty good for a couple days after, then his digestive track started giving him grief. Yes, I would have adult diapers and wipes on hand at all times after about day 2 or 3. This will only be temporary but it gives you peace of mind.
You will feel weaker after a while as your body has less oxygen rich red cells traveling around your body. Let yourself rest, your body will be going through a lot.
My job was to make sure he was taking his meds, eating and drinking and did not fall. Taking temperature etc. and keeping him comfortable.
He was in the clinic everyday, usually for a few hours of fluids, potassium, etc. during that time, he was in good hands and I could go do any errands that we needed.
Pre cleaning, first transplant we stayed at a long term kind of hotel, no cleaning service. It was pretty clean but I went over everything with Clorox wipes when we got there. Then I kept everything easily.
The second time we had booked guest house, got in late and had to stay the night, so I cloroxed everything I could and told him not to touch the rest, we checked out the next morning. We went to Home Place Suites and it was spotless and we stayed and felt safe. I still cloroxed the kitchen counters, microwave and bathroom, but they have a daily cleaning service . I say you will know if it feels clean and safe.
You will be very sensitive to smells, so clean smelling is good, heavy scented things, not so much. This too will pass. I drank instant coffee because he couldn’t stand the smell of coffee cooking.
It sounds really hard but remember it really is only a few weeks before you are feeling a lot better and hopefully gaining years.
Are you packed and ready to travel? Will you have a vehicle or rely on community transport?

We’re already at the condo and have been here for 2 weeks now. Since there were so many test, injections…etc. prior to and had to be at the clinic ever day most days at 7 am., we found it much easier. The condo was pretty clean, not my quality of clean but doable. I lysoled everything as best I could and wiped down with Clorox wipes after first arriving and have tried to keep on top of it when I’ve felt like it. The furniture concerns me but I lysoled the heck out of it too. I guess since we’ve been here this long already, should be all good. Just some last minute bed changes and towel washings. I also use loofahs, washing them in hot water along with towels. Never thought about loofahs being an issue, but thinking no worse than wash clothes?? I DONT KNOW!!! LOL!! I’ve always been one to over think things, why I waited til the last minute?? Ones guess is as good as the other

You mentioned pre-cleaning your post transplant environment. I found another article I wrote a while back about that subject. You might find some good info here. Also, towards the bottom there is a link for safety guidelines after a transplant.

You should also personally avoid cleaning the toilet for several months. That was on my list of no no’s. When we stayed in the hotel after transplant I had my husband pick up a toilet brush and Chlorox cleaner when grocery shopping so he could scrub the toilet often. We didn’t want housekeeping to come daily because ‘exposure’ to outside people when I needed to be basically isolated.

As for ‘accidents’, mine were not “bottom” related, but I was prepared with Depends, just in case. Some patients experience diarrhea so it doesn’t hurt have a package along with your supplies. I was more bothered with nausea to the point I carried a gallon ziplock baggie with me everywhere. It contained a paper towel at the bottom. I could tuck it in my little backpack or tote that I carried with my ‘stuff’…water bottle, ipad, snacks. That way I was never caught unprepared for any surprise attack. Remember morning sickness? It’s familiar (but not everyone experiences nausea)

And seriously, you’re at Mayo in the transplant area. There isn’t one thing new these amazing people haven’t seen! No reason ever to be embarrassed. Your transplant team will be your new family and you learn to trust them implicitly to cover your every need.

@auntieoakley covered a lot of the other questions you asked but don’t hesitate to ask more. We’ve got your back. ☺️

Thanks again, I’ll keep reading. Really wish I would have found y’all earlier❤️

I may be repeating advice you read or hear elsewhere - but I just had an ACST in May, and was extremely nervous about getting sores in my mouth and throughout my digestive system: Stay hydrated throughout each day - and night!-with twelve cups of water/non acidic fluids. Don't eat foods with acid in them even if they're normally healthy: pineapple, lemon, etc.. Avoid chewing gum , if you use it, that has acid in it( always look at ingredients). Do a saltwater after each time you've eaten something. Get toothpaste without extrachemicals in it( whiteners etc) and don't use normal mouthwashes. Keep your foods non sugary as much as possible, and soothing. Get a super soft toothbrush and don't floss for several weeks, but especially not during the stem cell process: treat your mouth gently. And get non-allergenic baby wipes and Desitin cream for your bottom, for whenever you've used the toilet, for a couple of weeks. Treat yourself as you would a baby, in that regard!: Stay clean and dry, other than soothing cream.
Best of luck. Oh and No apple juice, or cranberry juice, etc. They are superacidic.-( I don't know why hospitals serve stuff that stirs up problems, so often!- at least, my NY hospital did). Study antiinflammatory diet lists online, as a guide. Worked for me, anyway.

Thanks for this, didn’t really think about the non acid type foods but makes huge sense. I haven’t had my visit yet with the dietitian and really need to go to the store to stick up on stuff, been holding off til then. I visit with her on Friday and my doc so that gives me Saturday to get it done.