1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy
Profile picture for bloomthesickler

Anyone had bone marrow transplant for sickle cell disease (SCD)?

Posted by bloomthesickler @bloomthesickler, Apr 27 5:09pm

Hi I haven’t done this before being in support groups or even talked to anyone asides my family about my chronic illness, I just realized how much this whole life thing has traumatized me and I’m ready to go forward
I had my BMT 2024 and it’s been a rollercoaster issues after issues right now my body is dealing with some nerve issues, like shocks , pain zaps is this normal.
It’s been a year and 5 months I think
How long till I can feel like a normal person
The pain is terrible so what can I do?

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

Profile picture for Lori, Volunteer Mentor
Mentor
Lori, Volunteer Mentor | @loribmt | May 2 2:20pm
In reply to @bloomthesickler "@loribmt Hi, I’m always happy to see your replies. I never had a support group growing..." + (show)
Profile picture for bloomthesickler @bloomthesickler

@loribmt
Hi, I’m always happy to see your replies. I never had a support group growing up so it was something I dealt with alone. But seeing others who are going through the same is good.
Yes the pain is real my transplant team refused to accept that with me so I have stopped communicating with them only when it comes to my follow up tests and vaccines
I am planning to go to another country hopefully maybe it’ll be better managed and I’ll be understood properly,
I still feel fatigued and not strong sometimes it’s like an on and off thing. But the pain is the major one
I also want to start physical therapy I did that for some time even shock therapy
Hopefully I get the right people and I can move forward, just knowing the pain could still persist is something I wasn’t prepared for

Jump to this post

@bloomthesickler My heart goes out to you with what you’re going through. I know how challenging it was just to go through the transplant and recovery. So I can only imagine how discouraging it is for you, hoping you’d be free from the agony you’d gone through previously with your sickle cell.
I truly hope this gets better quickly over time and you find someone who is willing to provide you with the proper treatment for your continued pain. Like I said, reading through the articles online, your chronic pain, even after the transplant is because of the extensive nerve damage from years with SCD. If I can easily find this information so can your doctors! They need to take you seriously! Just because people can’t see it doesn’t mean the pain isn’t there!

While I don’t have any experience with Sickle cell, I’m sure here for you anytime you need someone to talk with!
You mentioned moving to another country. I wish you well with your move. Do you have family and friends where you’ll be moving?

REPLY
Please sign in or register to post a reply.