Assessment.

My assessment in Halifax for a stem cell transplant (SCT) took place this week. I meet with Dr. Christina Fraga and her team for an in depth discussion of the process, and was given the choice whether to go ahead or decline. Briefly, here's the information I was given:

I am not quite "sick enough" to receive an SCT at this point. This is a balancing act because it was suggested that I should be blood transplant dependent first, but if I had a heart attack, stroke (for which having an MPN puts its carriers at risk) or other significant health event in the meantime, I'd be ineligible for a future SCT.  

Secondly, as only one potential donor match was found, and it was not a "perfect match", the chances of success were hindered significantly.

Also, during this appointment, the gravity of undergoing an SCT was driven home to me. HARD. As MF is especially difficult to treat via this method, there are a number of points at which an SCT can fail. This can leave the recipient with a greatly reduced quality of life, but it can also kill the recipient. Additionally, there's the potential that the transplant might not take, or that MF could recur. 

With these factors in mind, I declined to proceed at this point. I only want to do so with the best chance of success in place. That's not to say, however, that I left without a plan of action. My goal at this point is to get as many folks as are eligible to sign up for the stem cell donor registry. You can do so here. My hope is that when I'm ready, the number of donors will have increased to the point that a perfect match will be waiting for me. My parents are both deceased and I don't have siblings, so it's down to a donation, and let's face it, how many people think about donating stem cells unless they love someone who needs them? 

I was very impressed with Dr. Fraga and her team. I have the utmost confidence in them, and it was clear that they supported my decision as the right one to have made. I have no idea what would have happened if I'd wanted to proceed, but I can't image that they'd have done so willingly. So too do I have complete confidence in my medical support here at home. Both my GP and Hematologist/Oncologist are informed, approachable, and are on my side. 

As for spreading the word about the stem cell donor registry, stay tuned. I've been in touch with Matt Rainnie at CBC Radio here in PEI about helping to share the gospel. 

A WARNING: It turns out that Dr. Fraga's office had been sending snail mail to my home to let me know that my referral had been received, that they were conducting a donor search, and with information about my appointment. Unfortunately, we'd moved about two years ago, and the change of address information we'd given at numerous medical venues on PEI had not been forwarded to Halifax, and so we'd missed all of Dr. Fraga's correspondence. My take away, and warning to you: It's not a good idea to assume that one health department talks another. Don't wait to be contacted; keep on top of appointments, results, etc. It could make all the difference in your health care, or in that of someone you love.