Accepted For Sct
AnonymousDecember 8, 2011 at 6:07 pm
Hello my fellow CIDP sufferers!
I have heard that I have been accepted for the stem cell transplant program/trial at Northwestern Univ in Chicago! I went for the evaluation last week (very thorough!!) and got the call Tuesday that I qualify. Now, they will contact my insurance company to see if they will pay for it! That could be a stumbling block, but God has worked this for me so far with little difficulty and if anyone can make this happen, He can! We might have a to fight a bit here but I got it in me to do just that! Just wanted to share this good news with you all.
Wendy 🙂 🙂 🙂
December 8, 2011 at 9:55 pm
AnonymousDecember 9, 2011 at 8:46 am
That is wonderful news – I will add my prayers to yours that your insurance will come through for you!!!!
I was talking to a friend recently who went through chemo for cancer – the cancer never made her feel sick, but the chemo did and so she couldn’t understand my excitement at receiving chemo – she kept saying she wasn’t sick until she was treated. She finally got it that I felt so bad and hurt so much of the time, that chemo was an attractive option since it would put my disease into remission. And truly, that the chemo was not the worse I’d gone through, so anything would be an improvement.
This is an exciting step and I am so happy for you. The ones I went through the sct with were all excited and happy and full of optimisim! Hope is a wonderful thing and remission is hope realized!!!
I will continue to pray for you that God direct every step of your journey,
AnonymousDecember 10, 2011 at 12:18 am
Thank you all for your well wishes and prayers! I am excited/scared at the same time. You can imagine.
Linda, I am not as bad as many so I hope the chemo doesn’t make me miserable! But, even if it does, I hope to recall it is for the good of my future and worth it!
AnonymousDecember 10, 2011 at 9:23 am
The chemo wasn’t really all that bad for me. NW does an outstanding job of using every trick they have to make you as comfortable as possible. I only threw up once – when I went in for the one overnight for the first chemo blast to mobilize the stem cells and start preparing for harvesting. I believe two factors contributed to my getting sick. First, recommend you DON’T eat a salad while taking chemo – it just sort of sat in my stomach and didn’t go anywhere until the next day when it landed in my trash can! Second, I got a really bad headache and didn’t do anything about it until I got sick. We ended up concluding that the headache caused the nausea. So when I went in for the approx 3 week stay, we stayed on top of the headache and I didn’t get sick again. I mostly just felt tired. I went through everything else just fine and I know you will do great also!!!!! Keep that wonderful upbeat attitude and all will be well!!!!!
I am so very excited for you and predict you will have a spectacular birthday next year!
AnonymousDecember 18, 2011 at 6:54 pm
Hey, so glad it went so well for you esp the chemo! I can only hope I have the same response (ok, without the losing the salad part, hehe). I’m just waiting to hear from the insurance company at this point. Been reading post after post on the facebook CIDP sites and it doesn’t sound favorable. I’m just hanging in there and letting the Lord work in his will thru it.
I don’t know if you knew about this, but my first husband lost his battle to leukemia while having a bone marrow transplant. I went through that with him in 1998 – it was a horrible experience and never thought I would ever consider doing anything like that in my life, and here I am wanting a stem cell transplant. I do know this process is a lot less invasive than what he went through.
AnonymousDecember 19, 2011 at 4:36 am
I am so sorry about your first husband. As you stated, the bone marrow transplant really is a much more invasive procedure – I’m just sorry that you will know, first hand, the differences.
I will keep you and your family lifted in prayer. I was one of the lucky ones and my insurance paid. Keith leaves for Chicago right after Christmas and his insurance is paying. I know Corey is disappointed and will be going into fund raising this next year, but I also know quite a few that did get theirs paid by insurance – Jim, Robert, Sharon – to mention a few. I hope your insurance comes through for you!
AnonymousDecember 21, 2011 at 2:17 am
I have to admit I have read a little on SCT – but for those that know much more about this – I am wondering at what point in the CIDP disease does SCT become an option or warranted? This seems like such a intense and risky procedure does your CIDP need to be life threaten to take this step?
Thanks for any info!
AnonymousDecember 21, 2011 at 8:51 am
The protocol for the sct program is that you must have tried steroids and 2 other treatment options (IVIG, PE, immunosuppressant, chemo) and failed. By failed, it means that despite the various treatments, the patient continues to get worse or shows no improvement. It does not have to be life threatening …
For me, my quality of life was threatened. Despite the treatments I received, I continued to get worse – needing IVIG more frequently and not responding well to steroids or immunosuppressants. The sct did not feel extreme to me as I was suffering all the time and it brought me relief.
I am now 4 months post sct. I receive no treatments and have reduced my cocktail of pain management prescriptions from 15 pills and 6 different Rx (with Norco added whenever needed) to 6 pills from 3 different Rxs and no Norco (and am continuing to reduce). Before sct, I couldn’t walk more than a very short distance before I was in screaming pain in my feet. I was using canes, crutches and ultimately a wheel chair to remain mobile. I did not have a great deal of muscle involvement, but the pain in my feet when I walked was unbearable and was the reason I used aids to walk. I now have no pain in my feet and can walk easily. Before sct, I would have bouts of horrific cramping. I now have an occasional twinge and that is getting less. I have not noticed much change in the amount of numbness in my feet, but the numbness is no longer all the way up my legs.
Before sct, my life was very medically intense consisting of weekly treatments, monthly (at a minimum) doctor appts and lots of meds. Now my life is coming back to me … my 1st appt with my neurologist post sct is in Feb – more than 7 months from my last appt. And I am starting back dancing after the 1st of the new year!
For me – this was the only option where I saw myself free of this horrible disease.
I hope you find the path that brings you to health.
AnonymousDecember 22, 2011 at 8:36 pm
I am getting ready to go to get a stem cell transplant and I am not nearly as bad off as Linda was. I was diagnosed last Dec 10th, 2010 and have been on IVIG and prednisone only. I walk with a cane (sometimes). Go to their website at Northwestern University and start learning! Also on Facebook type in the search bar “CIDP and Stem Cell Transplant”, then on the left side of the screen go under “Notes” Friend Activity” and “Links” for further info and videos and blogs of people who have had transplants. that’s how i started!
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