Reply To: Help-Considering Stem Cell Transplant

I went through the procedure 3 years ago.  I had a horrible progressive case of CIDP – where I went from running a marathon to complete wheel chair bound in 4 months.   I got into the Northwestern program – from initial consult to start of the program was 3 weeks – but that is because I put the money upfront so I didn’t have to wait for the insurance approval (which they eventually did pay for – thanks to Burts direct involvement).   I was the 12th case of CIDP that they did.   Mine was exceptionally aggressive – at the end – NW was giving me IV-IG once a week to keep me strong enough for the SCT.   My breathing was beginning to be impacted – had difficulty swallowing – in short a wreck.

After SCT – I rapidly improved.   Over the next 2-3 months I regained nearly all of my function.  Today I live almost a completely normal life.  The only thing that holds me back is pain in my feet – I think it is a lingering side effect of the chemo that is exasperated in those who have sensory predominant CIDP like I did.   I can walk a couple of miles – but then need to put my feet up for a while.  I also fatigue a little bit more than I used to.  Working out is doable – but it puts pressure on my feet and is thus uncomfortable.  But all of these are work around issues.  3 years ago I could not stand. Near complete immobility.   The SCT was nothing short of a miracle for me – one that I am forever thankful for.   Doc Burt saved my life.