1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Preparing for Bone Marrow Transplant: My mind is racing

Posted by avaleir @avaleir, Jun 22 8:50pm

I have a Bone Marrow work up coming up soon. They will start the pre-transfusion testing July 9-10. I haven't slept I feel nervous, and my mind is racing like crazy. Anyone else had this happen. Like right after I got the good news.
Ava

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

Mentor
Lori, Volunteer Mentor | @loribmt | Jul 4 12:41pm
In reply to @tkidd51 "Yes, I had my BMT at Mayo-Jacksonville. Wonder doctors and nurses. My transplant doctor was Dr.Murphy..." + (show)
@tkidd51

Yes, I had my BMT at Mayo-Jacksonville. Wonder doctors and nurses. My transplant doctor was Dr.Murphy and one of my favorite nurses was Dom, The care I received was fabulous and I can’t thank them enough during the most difficult time in my life.
I went through Corporate Suite Shoppe to locate an apartment to stay in after BMT. The apartment complex was super close about 10-15 minutes. Google for the phone number and tell them I (Tammy) sent you and that you are a Mayo Clinic patient. If you have any questions, please let me know. If you can’t find the phone number I can look through my files to find it and the exact apartment I stayed in. The apartment was fully furnished, and my caregivers made it feel like home with personal items. I wish you all the best and keep the faith. You are in the best hands to help you through.

Jump to this post

Thank you so much for this information, @tkidd51! I’m going to tag @clock456 to make sure she sees your post https://connect.mayoclinic.org/comment/1099191/
I can’t say enough about my Mayo team either! I was in Rochester and wow, they spoil us for care anywhere else, don’t they? I’m glad you’re doing so well. And please, don’t hesitate to pop into conversations on our rapidly growing BMT/SCT support group!
It is so important for anyone facing a transplant to feel hope and have support.
How often are you having followup appts?

REPLY
2 replies
tkidd51 | @tkidd51 | Jul 4 12:59pm

I’m going to Jacksonville once a month now and I have virtual appointments as well. My lab work this past week was normal. I haven’t received my vaccinations yet due to my count is 192 and it has to be above 200. Still taking breathing treatments once a month. I’m off all immunosuppressant drugs… finally. I’m feeling good but I still get really tired and struggling with mouth plus some mental issues. I’m glad to answer any questions. Yes, Mayo has spoiled me!!

REPLY
1 reply
avaleir | @avaleir | Jul 6 2:46am
In reply to @loribmt "Hi Ava, oh my gosh, gurl! What a way to start out a new life together..." + (show)
@loribmt

Hi Ava, oh my gosh, gurl! What a way to start out a new life together as a married couple. MDS is not the wedding gift you were hoping for…but it is a gift that keeps on giving, that’s for sure. Well, remember in your vows where you promised for better or for worse, sickness and in health…
You’re covering those two right from the get-go and after that it should be clear sailing. I hope you can bet back to the Bahamas for a 2nd honeymoon when this next adventure is over.
I had MDS’s ugly step sister, AML, which is something your high risk MDS could phase into so that’s why you’re having the stem cell transplant. It’s much better to do it now! I also know what it’s like to go into this knowing nothing, that’s why I’ve made it a mission to help anyone else having to go down this road.

We have very active discussions in the forum with those of us who have had transplants. This would be a good place to start where you’ll meet @alive @edb1123 @kt2013. @jenmkr63 @timt347 @jrwilli1 @tkidd51 @katgob and many others.
My bone marrow transplant story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
@mary612 started this discussion with her husband’s journey. He had his transplant almost 2 weeks ago.
Husband facing a stem cell transplant https://connect.mayoclinic.org/discussion/husband-facing-a-stem-cell-transplant/

I know what a hectic time this is for you with planning for a long stay, what to expect from the transplant and all those goodies. If you’re interested I can give you links to what to pack, useful items to take with you, post transplant guidelines, etc.. My transplant was in Mayo-Rochester so I don’t know much about lodging in Jacksonville. But I do know you’ll be in excellent hands with your Mayo bmt team.

Is there anything in particular I can help you with?

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Hey, that would be great if you could share what to pack. I have no idea what to do!! Thank you so very much!!

Ava

REPLY
1 reply
avaleir | @avaleir | Jul 6 2:55am
In reply to @loribmt "Hi @clock456, I just realized that @tkidd51 had their BMT at Mayo-Jacksonville. They may be able..." + (show)
@loribmt

Hi @clock456, I just realized that @tkidd51 had their BMT at Mayo-Jacksonville. They may be able to give you a little more insight regarding lodging ideas and daily life around Jacksonville while your husband has his BMT.

While you’re preparing for next month do you have any questions or concerns?

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Hello, I will be having my BMT in about 3 weeks in Mayo Clinic Jacksonville, FL. We have our lodging in place. I just feel a little overwhelmed with everything happening so fast. But I'm ready to get on with it!

REPLY
avaleir | @avaleir | Jul 6 2:58am
In reply to @loribmt "Thank you so much for this information, @tkidd51! I’m going to tag @clock456 to make sure..." + (show)
@loribmt

Thank you so much for this information, @tkidd51! I’m going to tag @clock456 to make sure she sees your post https://connect.mayoclinic.org/comment/1099191/
I can’t say enough about my Mayo team either! I was in Rochester and wow, they spoil us for care anywhere else, don’t they? I’m glad you’re doing so well. And please, don’t hesitate to pop into conversations on our rapidly growing BMT/SCT support group!
It is so important for anyone facing a transplant to feel hope and have support.
How often are you having followup appts?

Jump to this post

After the BMT it will be once a month for the first year, then I think every three months.

REPLY
avaleir | @avaleir | Jul 6 3:03am
In reply to @clock456 "@avaleir My husband is preparing to go through a Bone Marrow Transplant in Jacksonville as well...." + (show)
@clock456

@avaleir
My husband is preparing to go through a Bone Marrow Transplant in Jacksonville as well. He has high risk B-ALL. We don't have an exact date yet but they are thinking around mid August. His son is his donor and has already donated his cells. We live just outside of Jacksonville but not close enough to be within their criteria for the first 100 days. Do you know where you will be staying yet? We don't have exact dates yet so we can't set any housing up yet. I wish you the best. We have a great team here in Jacksonville.

Jump to this post

Hello,
I am set for BMT around the end of this month and staying in Jacksonville for the 100 days. I hope all works well with your BMT.

REPLY
avaleir | @avaleir | Jul 6 3:04am
In reply to @clock456 "@avaleir My husband is preparing to go through a Bone Marrow Transplant in Jacksonville as well...." + (show)
@clock456

@avaleir
My husband is preparing to go through a Bone Marrow Transplant in Jacksonville as well. He has high risk B-ALL. We don't have an exact date yet but they are thinking around mid August. His son is his donor and has already donated his cells. We live just outside of Jacksonville but not close enough to be within their criteria for the first 100 days. Do you know where you will be staying yet? We don't have exact dates yet so we can't set any housing up yet. I wish you the best. We have a great team here in Jacksonville.

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The ACS has recourses for housing/Transportation.

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Jul 6 11:49am
In reply to @avaleir "Hey, that would be great if you could share what to pack. I have no idea..." + (show)
@avaleir

Hey, that would be great if you could share what to pack. I have no idea what to do!! Thank you so very much!!

Ava

Jump to this post

I have a comprehensive caregiver guide from Mayo for you to follow that I received before my transplant This is a good place for you to start getting ideas of what is expected.
I know!! It’s going to look overwhelming. Just take it bit by bit.

First, look for Allogenic Stem Cell Transplant (using donor cells). That will be the guide to follow for you and your husband. There are several items on the menu. I encourage you to look through all of the subjects:
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation
Another good source for After Care for ALLO SCT from Memorial Sloan Kettering
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant
Link to discussion on Packing for long term stay: https://connect.mayoclinic.org/comment/703859/

Consider the essential items you use on a frequent basis at home Your lodging will be your home away from home but sparsely furnished. It’s nice to have some of your favorites with you.

>Mail~USPS will hold mail up to 30 days. Consider having mail forwarded to your lodging. If your mail is held, sign up for free USPS service of previewing the mail. You can see what’s being delivered/held that day to see if you’re missing anything important. Amazon can find you too!

Bring:
>Laptop/tablet/smartphone (+ chargers)
Your phone or device will be your connection with the Mayo patient portal and communication with your team. It allows you to review your lab results, appointments and information. It’s also your window to the world while your mobility is limited.

>Small electrical extension cord for charging your phone/tablet while in the hospital room.

>All medications, spare eye-glasses if needed, personal items for grooming, etc.

>Stamps, envelopes, address book. Post it notes came in handy, along with tape, a tiny stapler, pens, scissors. etc.
>Small sewing kit
>Inexpensive collapsable (fabric) hanging organizers for closets~good for t-shirts, pants & supplies.
>A flat storage bin for under the bed work for extra supplies.
>Quarters for laundry machines (detergent, dryer sheets, color catcher sheets for small loads)

Clothing:
>Slippers or shoes you can wear in the hospital
>Depending on your length of stay, you might cross seasons. So bring clothes you can layer.

That’s at least a start.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 8 8:17pm
In reply to @clock456 "@avaleir My husband is preparing to go through a Bone Marrow Transplant in Jacksonville as well...." + (show)
@clock456

@avaleir
My husband is preparing to go through a Bone Marrow Transplant in Jacksonville as well. He has high risk B-ALL. We don't have an exact date yet but they are thinking around mid August. His son is his donor and has already donated his cells. We live just outside of Jacksonville but not close enough to be within their criteria for the first 100 days. Do you know where you will be staying yet? We don't have exact dates yet so we can't set any housing up yet. I wish you the best. We have a great team here in Jacksonville.

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@clock456, how are you, your husband and son doing as the date approaches?

REPLY
caregiverx2 | @caregiverx2 | Jul 21 6:56am
In reply to @tkidd51 "Yes, I had my BMT at Mayo-Jacksonville. Wonder doctors and nurses. My transplant doctor was Dr.Murphy..." + (show)
@tkidd51

Yes, I had my BMT at Mayo-Jacksonville. Wonder doctors and nurses. My transplant doctor was Dr.Murphy and one of my favorite nurses was Dom, The care I received was fabulous and I can’t thank them enough during the most difficult time in my life.
I went through Corporate Suite Shoppe to locate an apartment to stay in after BMT. The apartment complex was super close about 10-15 minutes. Google for the phone number and tell them I (Tammy) sent you and that you are a Mayo Clinic patient. If you have any questions, please let me know. If you can’t find the phone number I can look through my files to find it and the exact apartment I stayed in. The apartment was fully furnished, and my caregivers made it feel like home with personal items. I wish you all the best and keep the faith. You are in the best hands to help you through.

Jump to this post

@tkidd51

Thank you for the referral to Corporate Suite. I have the number and I have sent them a request. Most of the places I have called only do 7 months lease and are unfurnished. This is very helpful.

REPLY
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