Reply To: Stem Cell Transplant

Fred –

I was in horrible shape – with one of the worst most aggressive cases of CIDP they had seen/ (sorry the “period” button on my laptop is broken so I will end each sentence with a “/”) Alice and Linda can attest to this/ Dr Burt called it “malignant” CIDP/ In the space of 4 months I went from fully healthy to crippled/ I was a mess/ I did not qualify under the strict criterion for the SCT – but Dr Burt took me on anyway/ Today I have recovered 99% of my function back/ I have some pain which I think was caused by the chemo and that limits how much walking I can do – but from a function standpoint – I have everything I had before except I can’t spread my toes as much as I used to/ That’s it / If I weren’t reminded every time I walk too far – it would be as though CIDP never happened/ I am convinced that had I not had the SCT – I would not be alive today/ Nothing I tried had any impact/ Towards the end I was getting IV-IG twice a week just to hang on until SCT/ SCT was like a miracle/ If it were not for Alice and Sophie – “Exhibit A” I used to call her – I would not have known about and certainly not pursued SCT / and it all would have been over for me/ I would not get too hung up on what your doctor is telling you/ I saw doctors at Stanford UCSF and even Mayo – and not one had any real knowledge of SCT and all advised against it out of doctor conservatism born from lack of knowledge (they thought it was a full on bone marrow transplant) This was the only program that offered anything other than palliative care – Iam back to my regular active life – its been 2 and half years – and I am cured! / Thank God for Doctor Burt / Northwestern and the love and support of Alice and Sophie !