Got accepted for Stem Cell Transplant in chicago
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March 26, 2010 at 7:11 pm
Hi everyone,
Probably many of you dont know me, even though i have been a member for many years. I read more than I write in here.
This time I have good news and a friend and member of this forum reminded me to post it here.I have been accepted and the insurance will cover for me to have a Stem Cell Transplant @ NWH in Chicago. It was the greatest day of my life since i got sick with CIDP 14 years ago. and coming out of my longest and worse relapse so far.
I have done everything and taking most the treatments available and this is it. STC is the answer to our prayers.
I agree with Alice that we should put it out there . There is hope for a cure. It doesnt matter if you ve been sick for a few months or years ,like i ve been.
Yesterday when i got the call from the insurance,after appeling their denial,it was the happiest day of my life.
If anybody have any questions, feel free to contact me. I will start posting my progress more often.
I really hope that our experiences can help others. the same way yours have help during my journey.
Thank you, Rossana
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March 26, 2010 at 8:10 pm
That is just fantastic! I too have been in contact with Northwestern, and they have invited me to apply. I have failed IVig and prednisone, and am about to embark on a course of cellcept. If I fail that, I will be in the “running” (no pun intended) for a shot at stem cell. I saw my neuro today, and he thinks I will fail the cellcept too, and suggested we do it for a month and, if no results, he will support my application. I am lucky to have been diagnosed correctly from the outset, though I probably have some axonal damage, which may mean residual weakness even if the disease is wiped out through stem cell therapy. Even so, it will be HUGE to have the CIDP GONE…thus no further progression of the disease. I can learn to live with and compensate for residual deficits. It’s harder to live with the expectation of continual decline.
I applaud you and hope you will keep us apprised of your progress. We need all the help and hope we can get from fellow sufferers.
Finally, I am curious to know the grounds on which your insurance denied you and then what you did to appeal the decision. I fully expect the same from my insurance and am sure I can benefit from your experience on that.
Thanks for posting.
Sharon
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March 26, 2010 at 8:48 pm
I am so happy for you. I know my son has been dealing with CIDP for a little over a year now and has done IVIG, Plasma Pheresis, prednisone, and now cytoxan (chemo). plus he has been in a wheelchair for a year. nothing has worked until he got put on cytoxan. he is finally walking and if he ever relpases again stem cell transplant will be the next treatment he does.
keep us posted on your journey and I will be praying that you have the same out come as Alice.
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March 26, 2010 at 9:07 pm
Congratulations !!
I hope that over time, the insurance community will see that this protocol, although expensive, may be the best course of treatment for us.
The more successful you all are, the better for us all
Good luck !!!
Dick s
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March 26, 2010 at 10:50 pm
Prayers and best wishes sent your way for a speedy recovery!
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March 26, 2010 at 11:24 pm
To every one . I cant wait to go and be off all medicines.
Like most of you i have had Pheresis,many times. at least once a year for the last 6 years. I have been on prednisone and cellcept since 1998 and IVIG since 1996 every 2 weeks. We were going to try cytoxan,but my doctor didnt want to ,so we tried the highest dose of cellcept that you can take plus all the other ones and it worked. So I’m up and running again.First my insurance said that because is still under study they wouldnt cover it. Then because they only cover transplants that are done at the Mayo clinic. So ,I went to the Mayo Clinic and they said they dont work with that protocol (which we knew NWH is the only one) I asked the doctor to write a letter or include that on her report. She did. Then sent all my records again with a letter of appeal to the insurance and to my surprise and everyone else’s they “made the exception”.
That s the short story. Lol
I hope everyone can get this done as soon as possible and not have to wait 14 years like I did.
I will create a blog where i will post regularly about my progress and i will post it here.
Thank you everyone.
Rossana
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March 27, 2010 at 6:26 am
Hi Infam and Anastasia,
Fabulous news! Please keep us posted. You are helping tremendously and giving hope to so many.
You are in my prayers and best wishes for a sucessful and speedy recovery! -
March 27, 2010 at 10:06 am
Hey you guys,gals, make sure to check out Alice’s info. She has been through the process and had great results. She would help you.
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March 27, 2010 at 10:18 am
Congratulations!! That is good news.
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March 27, 2010 at 8:33 pm
Sounds like YOU got LUCKY! Crossing my fingers and legs for your good results. Please keep us all up to date? Know that my heart is with you for success!
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March 28, 2010 at 10:42 pm
Yes!!!
more good news…;)peace and strength to ya from music city..
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March 29, 2010 at 5:59 am
I am very happy to hear you have gotten approved and will be undergoing the transplant as well. Between the two of you I feel much better about the future of very serious cases. Myself I’m not that bad, I am up and walking with assistance, I don’t need assistance to breathe, my heart rate doesn’t need assistance to maintain a steady pace and so on. I am fortunate Ig works for me and for that reason my doctor says he would not recommend the transplant for me. I applaud those NWH researchers and you and Alice for being brave enough to pioneer what may be the only hope for people for whom no other treatments work. I wish you the best of luck!
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March 29, 2010 at 9:30 pm
Thank you so much to all for the good wishes. I am very excited about this opportunity and I will keep everybody inform of the progress , the same way others have done.
We are all pioneers on this ….From Jennifer,the first person that had this treatment 5 years ago,who has been an inspiration to all of us. Alice, Jim, Kevin, Bobby…all have been through this process before me and I have learn a lot from them too.
I hope that with our experiences, this treatment can be available to all of those with CIDP in a future ,not too far. That more doctors will be interested in following in Dr. Burt s footsteps. He is the one we have to be thankful for and to whoever you believe in as a supreme being or force for guiding him.
For all the time and effort he has put into finding a cure for us. He is not only a geniuos (like my doctor said) but an inspiration to other doctors.
He and his team are the greatest.I will answer any questions you may have and help or talk to anyone that needs it. I have been through a lot in 14 years of dealing with CIDP.
Just learn a lot about your bodies, medicines and doctors. It will help you a lot on this journey.Rossana
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