And so the adventure begins…

Again, it’s been too long since I’ve posted something new. But get ready, because this is.going.to be. worth it!

During the winter of this year, my doctors and I decided that it was time for the big guns. A decade of treatment was preventing a rapid decline, but not the slow progression of my CIDP.

There had been discussions of an autologous haematopoietic stem-cell transplant (aHSCT) as a possible intervention for years, but up until this Spring it had always been an ‘in the more distant future’ discussion.

When I saw my neurologist in January, the hubs, the doctor and I discussed our ideas about starting a family, and the hubs and I agreed that given my current declining health, our own biological babies were not an option.  I may decide to discuss this more at a later date with you wonderful readers, but suffice to say for now that we came to the decision, and are both at peace with it.

As a result of this discussion early in the new year, I was referred back to my hematologist here in Ottawa to begin anew the discussion of the transplant. He agreed that now was the time.  While my level of disability wasn’t changing dramatically, I had most recently lost the ability to write by hand, and had been forced to stop working due to crippling fatigue.  I was managing – but barely.  We all agreed that putting off the transplant any longer didn’t really make sense. I was officially referred to the bone marrow transplant (BMT) team here at the Ottawa Hospital.

January turned to May, May to June, and I was able to finally meet with the BMT team. They were confident that I was a good candidate for the transplant and sent me away with the next steps being some pre blood testing and the promise of a planning appointment for phase 1: the stem cell collection process.

June turned to July.  The wait was difficult – knowing the fight ahead of me made me and my peeps impatient. We knew what we wanted. It was going to be tough, but we all thought let’s do this already!

Coincidentally at this time, the results of a ten year study of autologous stem cell transplants in patients with Multiple Sclerosis was published in the Lancet, and one of my physicians, Dr. Harold Atkins was one of the lead researchers on the study. The timing was indeed interesting.  The study received a lot of press, and allowed me to point to easy to understand stories in the media about the procedure. This came in handy when trying to explain to my friends, family, and co-workers what I was about to go through.

On July 28th, I met the BMT team for my planning meeting. I left with lots to read, a schedule, and a start date of August 6th, 2016.

Planning appointment Collection

The hubs and me at my stem-cell collection planning meeting on July 28, 2016. The part of photographer was played by mom.

We had arrived.  It was almost go time!

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2 responses to “And so the adventure begins…

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