My experience with SCT
Firstable I want to apologize to Sharon for not responding earlier, I ve been kind of lazy this weekend and didnt even turned on my computer. LOL
Im always available to talk to people about my experience,specially if it can help someone. I have a lot to share…lol
I had my SCT last June. I had CIDP for 14 yrs. Had all the treatments available over the yrs. Prednisone,cellcept, IVIG every 2 weeks and pheresis. My cidp was progressive ,but stable in the sense that I could walk (being careful)and work. I was weak ,numb,tingling all that and I knew my limitations. I got sick at 23, so I learned to live with it and to know my body.
I had a great team of doctor,nurse, and pharmacist who helped me through my journey and helped me to get SCT . Without them, I probably wouldnt be here today sharing my story.
You need to build a good relationship with your doctor. Prepare yourself about the treatment, ask a lot of questions to us or Paula so you can explain it to them and why you think is the right treatment for you and why they need to help you. We make the decision to go through with it , but their support is essential. At least it was for me, for insurance purposes and after transplant he has been there for me. Specially this last few weeks. Because he knows the details and understands it.
As Alice and Sharon said the side effects from SCT are nothing compare to 14 yrs of treatments and frustrations. Dry skin,chipped lips,loss of hair, fatigue ,menopause,line on my nails (its almost gone…maybe another month or so) etc nothing compares to what I ve been through before.
For the last few weeks my counts had been low and had a little problem with the liver counts, so I ve been really really tired (that’s why didnt check emails over the weekend…lol) . I feel better today and counts went up a little.
The body needs to heal on its own (I ve been told…lol)after transplant, Im not taking any medicines. I did get frustrated last week and the one before because I wasnt feeling as good as I hoped. Alice,Jim,Bobby….who have gone through this before me, told me to be patience and Im trying…. LOL
On examination last week with my neurologist, he was surprised of my strenght, no numbness (except where my nerve biopsy was done) sensitivity to cold and vibration and the best part ….I had excellent reflexes ! I was surprised too! my balance is better. He said…wow cidp its gone!! no signs of it. Just the scars from it….lol It was a great feeling ! to know that even though they dont like saying it …SCT it is a cure!!!
I know that I hit bottom already, so the only way to go now is up on my healing process! And I cant wait…after giving all my 20’s and 30’s to cidp, hospitals, meds and doctors….I cant wait to start a life without cidp!!
I would recommend this to anyone. I know this is going to change my life once healing is complete.
Please dont hesitate to contact me and ask questions. I can talk at anytime, just email me or pm. It helps me too!.
I also kept a blog during my treatment. You can read it at
[url]http://rossanascidp.blogspot.com/[/url]
Thank you and best wishes for all.