What Questions do I ask the BMT Dr.

[JodyW]

My son has SVAA and began treatment 3/11 on ATG and Cyclosporin. His cellularity at time of dx was 4% and his ANC was .01. all other numbers on the floor as well. After ATG he started on 350 mg of cyclosporin 2x/day and in May they dropped the dose to 350 1x/day. Not sure why the significant drop but he seems to be doing better. He was recieving transfusion for the first 3 months but stopped them a few weeks ago. Trevor is in prison so he has been told if he needed a BMT he would not get one because of the community enviroment. That being said, he was told he is seeing the BMT doctor this week vs. the Hemotologist he sees at the clinic. We don't know why he would be seeing him but wanted to give Trev questions to ask him so he gets a clear picture of his situation. The only info Trev has ever recieved was his CBC counts. They are checking his peek and trough levels in 2 weeks.


Since they already said they won't give him a BMT why would BMT dr. be seeing him? Good quesitons to ask would be apprieciated.

[Neil Cuadra]

Jody,

This is very good news. It's only a consultation, but it now sounds like a transplant hasn't been ruled out.

What you were told (that he couldn't get a transplant) doesn't seem right to me since I've always assumed that prisons are required by law to give all necessary medical care. Maybe what they actually said was that he couldn't get a transplant in the prison, meaning that he would have to be transferred elsewhere.

You can probably find information about medical services at the prison's website. For example, the Bureau of Medical Services of the Ohio Department of Rehabilitation and Correction uses a three-level approach: the onsite infirmary for routine care, separate nursing facilities for serious illnesses, and access to the Ohio State University Medical Center for inpatient care. Researching his rights as a patient might be just as important as researching the treatment of very severe aplastic anemia. Maybe you can contact the medical department and get some answers about available care.


I think the most important questions Trevor could ask at the transplant consultation are:

1. Have you seen my test results and treatment history and agree with my diagnosis?

2. Am I eligible for a transplant? Is a donor available?

3. Is that the best treatment choice for me? Why or why not?

4. If it's worth trying more drug treatments before going to a transplant, how long should I try which drugs and how would we know when I should go to transplant?

5. How does my being in prison affect all this, compared with VSAA patients in the community?


If he gets the time to ask more questions, here are others:

6. What would a transplant entail? Where would it be, how long would it take, what kind of chemo or radiation would I get, how long would my recovery take, and how would I feel during and after the transplant?

7. What are the possible outcomes and their chances if I have a transplant? What are the possible outcomes and their chances if I stay on drug treatments instead? (Doctors can't answer with certainty but they can tell you what the statistics say about it.)

8. If I get a transplant, where and how would I get followup care?

9. What are the long-term effects of a transplant? Could the VSAA return? If the transplant fails, what would they do?

10. Would a transplant be covered by insurance?

[JodyW]

Neal,

Thank you again for your great reply. The questions are all thought out and I will give them to Trevor.

In regards to the transplant. The BMT Dr's at The James have decided as a team that they will not do a BMT on Trevor because he is a prisoner. They said they will do the autologous type of transplant on prisoners but not an allogenaic that he would need. The prison will not deny it, but the Dr. wont agree to do one. By law he cant be denied by the state, I dont think it can force the Dr. to do it if they believe it to be to risky. I had Trevor's medical records subpoenad and found in the Dr.'s progress notes "he will not be considered for a BMT because he is a prisoner, if he were at home, he may be considered." Based on that I filed a request for early release with the parole board. It is now up to them. In the mean time, I pray the ATG/cyclosporin is enough and the infections he gets at the prison stay away.

Still curious to see why the BMT Dr.
Thanks agian.

[Greg H]

Hey Jody!

There's pretty good evidence out there that the ability of folks to do well after a BMT depends on having a good supportive care network while they are recovering. Folks who have had a transplant, even after they are released from inpatient care at the hospital, have a lot of challenges and need a lot of care.

It could be this is what makes the transplant doc skeptical about a transplant while Trevor is is prison. He may be afraid that there's no way he could get the level of day-to-day support he will need in that environment.

I hope his appointment goes well.

Take care!

Greg

[Neil Cuadra]

It occurs to me that it could also be that a university hospital simply isn't set up to provide suitable security for a patient from a prison in their transplant ward.

[JodyW]

I agree with both of you. I am sure the Dr. would if they thought they could be successful. When Trev was in The James for the ATG treatment they were nothing but focused on making him better. This is just something that we will have to deal with. Appreciate the response.