Stem Cell Transplant (STC) for CIDP

Fantastic! Be sure to keep us updated.:D

That’s fantastic Yeuhan!

I hope the improvements keep coming!

Kelly

Congratulations! I am so happy for you and your family!!!!!!

Great news yuehan. Please keep us posted on your progress. Is there an age limit for entry into the program? The more I hear about the procedure the more I wonder if I might be a candidate.

[FONT=”Microsoft Sans Serif”]Jim,

The age limit is listed as 65 but I know a gentleman that just got in without any debate that was 68. In other words, I think there is flexibility. Contact them, see what they have to say–

Congrats Yuehan! And best of luck.

Alice[/FONT]

I am wishing you good things Yuehan. Keep us posted please.
Laurel

congratulations Yuehan 🙂 am sending healing thoughts your way—–please keep us posted. So many have gone but only a mere few have posted results. Best wishes Lori

Yeuhan,
Are you at Northwestern?? Many questions but when you have time please let all of us know how you are.
I wish you the best. 🙂
Limekat

I’m so happy to hear about you’re recovery!! I hate to be a wet blanket and talk money, but I’ve been really I interested in the stem cell transplants, but of course, I assume the cost is way out of reach:confused: Even my Dr said that he would be willing to talk about it in the near future.
Again, I am SO HAPPY to hear that there is HOPE!! Thanks for your story!

Are you actually in the hospital right now? I am so excited for you. My doctors won’t refer me. They say because I am still improving. But it is so slow and it has been 2 1/2 years now. Just can’t wait to hear all about it.

Guskno,

If the insurance doesn’t cover the sct, it is expensive. I went through it this past summer and the cost to those without insurance was around $125k (not including out patient hotel/travel – this is only the medical). Even with insurance (mine paid 100%), some of the time is spent as an outpatient and so I did spend around $6,000 while in Chicago (including my airfare).

However, there is free housing and it was offerred to me, so if I hadn’t been able to afford the hotel while being an outpatient, I would have accepted the free housing. I stayed there for my evaluation in May and while it is not nearly as nice as staying where I did, it is clean, has a kitchen and is free! And there is a group that pays for 2 nights at a good hotel when going for initial evaluation … so my evaluations (had to go twice) didn’t cost me much outside my plane tickets. I know I am one of the fortunate ones whose insurance paid without any hassle but, who knows? You also might be covered by your insurance?

There were nine that received their sct the same week I did. The 3 with CIDP all had insurance pay … the 4 with MS had 2 that insurance paid and 2 that were self pay. Both of the patients with Lupus and Crohn’s had their sct paid by insurance. We became close and still keep up with each other’s progress … (we became so close, we actually have T-shirts for our little “Roof Topper” group – courtesy of a CIDP patient that received her sct this month for CIDP!!!).

One young couple I met – the wife has MS. She was in a wheelchair and her quality of life was declining fast. He is a Tony award winner for the spoken word/poetry, so you would think they might be able to afford this. However, they ended up selling their house and other belongings and moved in with her parents (have two young children) to pay for the sct. He also wasn’t working since he was taking care of her (the children were being taken care of by her parents) – he was by her side through the sct and then also when she went into an extensive rebah program a few buildings over from the hospital. He told me he can always make more money and buy another house, but that her health was worth everything to him.

But you don’t know what it will cost until you try … based on what other’s had written/said, I was prepared for an expensive time/fight with my insurance company! I was pleasantly surprised. I took a medical leave from my office for 3 months and was also pleasantly surprised by the leave donations I received … didn’t miss a paycheck. Bottom line for me is I could have done this (with the free housing) for about $1,000 cost to me.

So I would recommend anyone interested apply! You never know what will happen until you try!!!! 🙂

[FONT=”Microsoft Sans Serif”]Nice post. Touching.[/FONT]

Jim C,
Hope this gets to you. I don’t know anything about computer blogs and posting and would definitely fail “twitter”. I am curious. Were you really in the USAF and a teacher? Me too. When were you in? I have contacted Tricare to see if they will cover sct. Do you know? “PattyCake”

[FONT=”Microsoft Sans Serif”]I found this link: [url]http://www.tricare.mil/mybenefit/jsp/Medical/IsItCovered.do?kw=Stem+Cell+Transplants[/url]

Notice that they say, “will not cover SCT for unproven conditions…”

I would still try as I have seen many get it covered even with that statement. Perhaps at this juncture, and considering the cost of IVIG, etc.– they will consider what’s been done as proof enough.

Best of luck and do let us know–

Incidentally, NW doesn’t recommend you contact your insurer and tell them all right up front. They kind of guide you through the wording and when to say what. You may want to hold back, apply 1st and then let them walk you through the process.

My dad is retired military and i understand Tricare to be one of the best insurers around. I’d be very interested in knowing how they handle this one with its ambiguity…

Best of luck.
A.[/FONT]

So exciting to hear about stem cell transplants! I am just curious about something (I don’t know a lot about all of this yet), but if you have a child who you banked their cord blood .. can they possibly use this for treatment of some sort for CIPD or other issues with their mother? just curious in case it ever came down to that… Thanks, and congrats!!!

Osler – there is a young man that has a disability retirement from the AF and was just accepted into the sct program. He has tricare and they are paying. But he also sat back and waited for Northwestern to do the insurance thing … he starts his journey end of Dec. He is posting at “CIDP and Stem Cell Transplant” on facebook if you want to contact/follow his story.

Bny806 – while I was going through the sct program, there was a very young man with an extreme and advanced case of Crohn’s. He was so sick, they could not get the stem cells from him. He was treated with stem cells from cord blood. I never asked who donated, but he received the cord blood/stem cells from two different donors.

all the best in the world Yuehan and your family

And how are you doing? Please provide an update!!!!

Thanks!

been waiting for your sct update!!! hope everything is going well 🙂