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Anyone had bone marrow transplant for sickle cell disease (SCD)?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: May 2 2:20pm | Replies (11)Comment receiving replies
@loribmt 23
Yes it’s gone
It’s still there
I did meet a neurologist actually and they said everything seemed fine gave me some meds
I actually met two different ones
It all looked good from their side
So now I’m stuck with cause I had pain for years my nerves are sensitized
I tried working out and all that but that was when I was using opiods and tbh I told them to stop it’s not treating the pain
Does that mean I’ll have it for life ?
So stopped them
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@bloomthesickler It’s a relief at least to know the sickle cell disease is gone. But small comfort if you’re still in that level of pain.
I did a little sleuthing online this morning to learn more about sickle cell disease. I understand more now about the pain you’ve had to deal from the disease. It sounds horrible and I’m so sorry you’ve had to cope with that for so many years. I know you were looking for hope and relief with the bone marrow transplant.
There is, what I feel, some good news for you. There are discussions online, one in particular in Reddit, with other patients who had SCD and underwent a BMT to reverse the disease.
The transplants have been highly in successful in treating SCD. But as your doctors mentioned, because of previous damage with the chronic pain, the nerves can remain sensitized for a while. Other patients, just as you have, commented that they still suffer from the similar pains, though less frequent and shorter duration than before the BMT. The good news is that with most of the people, they say it took them about 2 years to be back to normal.
Our bodies have the amazing ability to heal. At 23 you have a long, healthy life ahead of you…free from sickle cell disease. It may take some time for your body to feel like it belongs to you again! I had my BMT almost 7 years ago at the age of 65. So I was pretty used to my old way of life and it abruptly changed. I’ve learned to roll with the new me! Ha, not easy for an old lady! LOL. It’s helpful to eat healthy foods, exercise and find something positive in each day.
What types of things do you enjoy doing? Are you able to return to work yet?