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

Posted by jstpeachey @jstpeachey, Jul 3, 2023

I’m so afraid I’m not prepared, I really don’t know what to expect, I’ve just discovered this group. I’m going in on 7/10 for my “chemo blast” which really freaks me out, and my outpatient Autologous transplant is on the 12th. I’ve heard horror stories and I’ve heard great things. So far I have sailed thru everything with only a few hiccups along the way. My BM collection I aced, I’m just not sure how to prepare my living quarters. We’re staying in a condo near the Phoenix Mayo, can anyone please tell me what I can expect, I know everyone is different. My husband & care giver I really don’t think he understands what he has to look forward to either.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

@tyson1221

I hear u I’m dominant up to soon to havin it done are using a donor or your own blood

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Using my own, have already done my collections, transplant is scheduled for Wednesday the 12th

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Ok ya my daughter is my donor good luck will see u on other side u got this an so do i

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@tyson1221

Ok ya my daughter is my donor good luck will see u on other side u got this an so do i

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It’s a long road with a few bumps, but soon we’ll be looking thru the rear view mirror. God speed sweetie & your right, we got this and God has us both. Hard to keep a hood women down 💪

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I wish I had seen this earlier. I’m praying for you now.

I’d say have the shower stool ready just in case.

My husband had an auto BMT 2/23 and we had the benefit of talking with someone who was two months ahead of us. It’s scary and not fun, but the info Mayo shared was accurate for us. You feel awful for several days, and then when your blood counts start to increase things get better daily. It’s slow, but it happens. We are willing to talk with anyone who would like to hear our experience.

This is an NPR article We were interviewed for. https://www.npr.org/sections/health-shots/2023/04/29/1167392633/hospital-at-home-remote-care

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@papad

I wish I had seen this earlier. I’m praying for you now.

I’d say have the shower stool ready just in case.

My husband had an auto BMT 2/23 and we had the benefit of talking with someone who was two months ahead of us. It’s scary and not fun, but the info Mayo shared was accurate for us. You feel awful for several days, and then when your blood counts start to increase things get better daily. It’s slow, but it happens. We are willing to talk with anyone who would like to hear our experience.

This is an NPR article We were interviewed for. https://www.npr.org/sections/health-shots/2023/04/29/1167392633/hospital-at-home-remote-care

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Hi @papad, I'm so glad you and your husband were able to take advantage of Mayo Clinic's Advanced Care at Home program. Thanks for sharing the NPR article.

As you experienced first hand, it is so helpful to hear from others who have walked the path before, especially with an experience like cancer and BMT. You'll notice that I removed your phone number from you post since Connect is a public forum. It's better to use the secure private message function to share personal contact info. However, I would like to point out that by sharing on the forum here, your messages benefit many and we can all learn from each other.

At what stage of the BMT process did your husband's care transition to Advanced Care at Home rather than in the hospital? How is he doing now?

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@colleenyoung

Hi @papad, I'm so glad you and your husband were able to take advantage of Mayo Clinic's Advanced Care at Home program. Thanks for sharing the NPR article.

As you experienced first hand, it is so helpful to hear from others who have walked the path before, especially with an experience like cancer and BMT. You'll notice that I removed your phone number from you post since Connect is a public forum. It's better to use the secure private message function to share personal contact info. However, I would like to point out that by sharing on the forum here, your messages benefit many and we can all learn from each other.

At what stage of the BMT process did your husband's care transition to Advanced Care at Home rather than in the hospital? How is he doing now?

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He was admitted on 2/21 and had chemo that day. Two days later on 2/23 he had the transplant in the morning, then that afternoon they told us about the hospital at home program. We agreed to do it and we were home by 6 pm—the same day as the transplant.

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@jstpeachey

Using my own, have already done my collections, transplant is scheduled for Wednesday the 12th

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You can do this! You are stronger than you think.
I had my sct Jan 2016

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@jstpeachey

Ok, that makes me feel better too. I think I am ready, I’m ready for all of this to be behind me and just a memory. Maybe I can help others the same way you’ve been able to help me. Thank you again❤️

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Good morning @jstpeachey. I’ve been thinking about you! You’re 8 days post transplant from my reckoning… How are you feeling aside from the expected fatigue?

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@loribmt

Good morning @jstpeachey. I’ve been thinking about you! You’re 8 days post transplant from my reckoning… How are you feeling aside from the expected fatigue?

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How sweet of you to ask, I’m actually doing really well, staff is amazed at my progress. I can’t lie, I did have a rough bout with diarrhea, my bumm is still trying to recover, lol. But all in all I’m doing good. My first fluids I was given was on day +5 for sodium and calcium, yesterday just sodium. Still got my hair, I know it’s still early, but I’m hopeful. Showers seem to wipe me out, but I get’er done.

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@jstpeachey

How sweet of you to ask, I’m actually doing really well, staff is amazed at my progress. I can’t lie, I did have a rough bout with diarrhea, my bumm is still trying to recover, lol. But all in all I’m doing good. My first fluids I was given was on day +5 for sodium and calcium, yesterday just sodium. Still got my hair, I know it’s still early, but I’m hopeful. Showers seem to wipe me out, but I get’er done.

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I’m excited for you that you’re doing so well! Hopefully you’ve gotten through the worst of the side effects now, aside for the little reminder in the nether regions. (A & D ointment…just a suggestion 😅)
Maybe you won’t lose your hair! You may get lucky with the scaled back pre-conditioning chemo. That’d be great! Finger’s crossed…but if your locks do make an exit, they shall return.
That exhaustion is a joy, huh? I remember those showers too…like is it even worth the effort?! Short answer, probably. LOL. It’s those little familiar routines that can help the disposition to keep us moving forward. Keep up the good work.

So, I have to ask, since you were very concerned pre-transplant that you weren’t ready…what, if anything, did you not need or wish you had available?

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