My wife – MDS

[Mike Snetsinger]

My wife was diagnosed with chromosome 7 MDS just over two months ago (she had aplastic anemia 10 years ago). There is a long que for bone marrow transplants in Canada at this time. The province that we live in has been offering up transplants in the States but funding is long in coming and I believe she can’t wait. The options as I see them are:

1. Wait and risk conversion to leukaemia even before trying a transplant in Canada
2. Wait for funding and go to the States
3. Go directly to the States, mortgage the house, lean on family, friends and pay out of pocket
4. Medical Tourism. India / Poland / Singapore / etc.

I’m totally out of my depth here. Does anyone have any experience with option #4?
Please and thank you,
Mike S

[Mike Snetsinger]

I’ll add a bit more… My wife is 53 and an RN so she understands the language – not me. She’s smart capable loving – all the good stuff – but she’s overwhelmed and scared stiff. So am I for that matter as is our two kids. Friends and family are offering up help in any way they can (Twitter/ media / email / etc. to bring awareness about the backlog and hopefully to get her in quickly) but I’m worried that she’s getting sicker. She’s exhausted and in bed at this moment. I’ll try to get her on this forum. I think she needs to talk to someone who’s paddling the same canoe.

[Mike Snetsinger]

Bit more… Transfusion dependant – two unit of RBC holds her for two weeks (might be becoming more frequent), Hg was 65 before last transfusion, plys about 16.

[LeAnn Duke]

Hi Mike, My name is LeAnn and I am 58 with MDS Refractory Anemia with ringed sideroblasts. My MDS just affects my red blood cells at this time and I have too much iron attached to my RBCs. I am low risk at this point but transfusion dependent at one per month. I am sorry that you all are going through this and the problems with the slow possibility of a transplant in your area! I’m sorry that I don’t have anything to offer as far as help but I just wanted to let you know that there is someone out there who read your post and will be praying for your wife and you and that she can find a donor and move up the line for quicker treatment of this disease.

I don’t kow much about the other types of MDS and their instability but know in general from my own Dr that it is an unpredictable and unstable disease. I truly wish you all the best of luck in your search for the right answer and the best treatment for her. God bless you both!!!!

[Mike Snetsinger]

Hi LeAnn,
Thank you for the kind words. The funding from the province fortunately came in yesterday afternoon and we are heading State side in the next few days to begin the transplant process. Our friends and family were quite vocal first thing in the morning so the politicians and bureaucrats exactly knew who we were. I don’t know whether our swarm of bees sped up the funding but the powers-that-be are now acutely aware of the waiting list. Hopefully the spotlight and noise will bring about some much needed positive change. With regards to my wonderful wife – I realize she’s not out of the woods yet but I believe she is going in the right direction. It’s such a relief to have made it this far.
Take good care,
Mike

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