Stem Cell Transplant gave me my life back. (Long Read)

[soapy]

December 1998 I started to noticed my legs felt weak when I tried to get up from a sitting position.  It got worse and by Feb. 99, I could no longer walk without the use of a walker. I was diagnosed with a rare autoimmune disease called Chronic Inflammatory Demyelinating Polyneuropathy, the chronic form of Guillain Barre Syndrome.  Take a flu shot these days and you will sign a paper saying that you understand that the shot you are taking has not been proven to cause GBS. I had a flu shot that year and the first question I was asked by every doc I saw, "Have you taken a flu shot? "  By 2000 I had my own power wheelchair, and had to have help to get in it.  I spent the next 7 years mostly in bed unable to care for myself. I was 6'4, weighed 225, and by 2006 I was down to 145lbs.  I improved a bit on immune suppressive drugs and I started chemo every other month. By 2010 I could get out of bed, walk a few feet, and make it to the john.  Yay!!!  Still life sucked.  I could only find 2 other guys here in Mid Tn. that had it and I was the last to start the experimental chemo drug Rituxian.  6 months after I started it, one of the guys passed from pneumonia, his immune system too weak to fight it.  The other one called me, shook up about it.  He said he was going to look into the Stem Cell he had heard about. This was 2011.  It turned out that Northwestern University in Chicago was doing clinical trials on stem cell transplants and CIDP.  He became the 17 person to undergo it.  The first person was done 2005, just to show how slow it was. He urges me to go to NWU as they only were going to do 20 folks at first.  I went and was rejected.  They said I didn't meet the study requirements and they thought mine might be in remission.  I came home, and they stopped all my meds.  Boom.  Stuck in bed again.  I was pissed.  They contacted me to return, but my friend was sick all the time from his, and I decided to hold off and see how he did.  FF to Fall 2012 and he is walking from his parked car to the Titians games. Going to concerts.  My family elders were sick and I figured the first study was over by now anyways, so I didn't contact NWU.   In Feb. 2013 he went to back to NWU for his yearly eval.   The transplant doctor told him to contact me and ask me to come back.  My dad was ill and I held off.  The phone rang one morning and the transplant doc was on the line.  No nurse, the Man himself  He said he was sorry I had to go without my drugs and if I would come back to Chicago he would/could help me.  On October 15, 2013 after destroying my immune system with chemo, I received my own stem cells back. I was the 50th person to undergo this for CIDP.  2014 was rough, in the hospital 3 times with Pneumonia, lots of fever with no found cause etc.  I started getting stronger tho.  No more immune suppressive drugs since Dec. 2013.  Today, 18 months post transplant, haven't been sick in 6 months, I can walk, although I do use a cane when I'm in crowds and tired.  I'm back up to about 200 lbs.  My arms and legs are still skinny from muscle atrophy, and I get tired quick. I suffered nerve damage and I will never be normal, can't fix that.  But they stopped it.  After 15 years of hell. I'm telling you this story to pass the word  They are resetting the immune system back to normal.. They have done over 500 people with MS the last 10 years with good results.  Clinical trials are ongoing for just about every autoimmune disease that exist.     I would be happy to answer any questions anyone has.  Here is a link.  http://stemcell-immunotherapy.com/  you also find success stories and info on youtube if you search the transplant doctors name.  Dr. Richard Burt. Making history and changing the world. I never did meet the requirements for the study, my case was even more rare than others.  He did me on a compassionate basis and will write a paper on me..  Special..   ;)   Disclaimer:  I'm not making money nor am I affiliated with NWU.  I'm just a TN. born and bred disease kicking MF..   CELEBRATE LIFE!!!     Edit: I had Feb on the brain, my transplant was in October 2013, not Feb.  I been on the phone scheduling my yearly follow up  and thats what prompted my post.  I went back at 6 months and 1 year, and I go back once a year for 5 years.

Edited June 17, 2015 by soapy

[MacGyver]

Hey, that's awesome!  Thanks for sharing.

 

It's amazing how little we know about these miraculous bodies that we inhabit.  And, that in 2015 they're still making basic discoveries that are absolutely changing people's lives for the better.

[soapy]

Thanks, I just pray someone reads this and it helps someone else.  Here are some links to some of my fav success stories I only used to dream about.

 

This is what I had, CIDP

https://www.youtube.com/watch?v=18-HW1A_18g

https://www.youtube.com/watch?t=113&v=MWCzAxHbxxo

 

Devics Disease

https://www.youtube.com/watch?v=31PLV_zBpOg

 

MS

https://www.youtube.com/watch?v=8PZEzVCudhs

 

The Man himself Dr. Richard Burt.

https://www.youtube.com/watch?v=n-vo-n5awjk

 

Thank you Lord.  God Bless

Edited June 16, 2015 by soapy

[LagerHead]

Incredible. I can't imagine what you have gone through, but I'll bet you feel like a new man. The real question everyone wants to know though, is can you go to the range? That's what it's all about, isn't it? ;)

 

Seriously though, this is a truly inspirational story. Glad you made it through like you did.

[soapy]

Incredible. I can't imagine what you have gone through, but I'll bet you feel like a new man. The real question everyone wants to know though, is can you go to the range? That's what it's all about, isn't it? ;)

 

 

Yes I do and funny you asked.   Shot my new Christmas Colt M4 and that Bersa Thunder 380 I asked about on here, just a couple Fridays ago. Did it standin tall and lookin good.  ( U hero's know what I mean) 

 

 I will say I would not be here today if it wasn't for my wife.  She fed me and wiped my butt when I couldn't.   Wouldn't let me give up that woman.   She's  been my rock for the last 28 years.  They just don't make em like that anymore.

 

 N Please if you or you know anyone this might help have them call Ms. Kim Bracy @ 312-908-0059, NorthWestern University.  Speed things up a bit. Word is getting out and people all over the world are trying to get in that line.  

Edited June 16, 2015 by soapy

[soapy]

Insurance & cost. Its not government or drug company funded. Some insurance in some states are now paying. My friends insurance paid for his transplant, transportation, food and hotels.  I met a woman who went thru it when I did from Florida. She had BCBS of Illinois and they wouldn't pay.  She had to pay 165K cash and everything else. (travel, food lodging). In my case, Medicare was my primary and BCBS of Tn. was my secondary.  I had to pay the hospital 25k up front to cover any expenses not covered by insurance to get scheduled.  BCBS at first told us they would not cover any cost for the transplant itself because it was exploratory/experimental.  Because of a loophole, they then told me they would pay up to 10k for travel/lodging expenses for my wife and I for a transplant, even tho it was experimental.  (go figure).  That turned out to be 150/day max. for food and lodging, which almost covered the hotel bill, and they payed for our flights  between Nashville and Chicago which was 3 round trips in 2013. They also covered the trip in 2011 when I was denied. In the end, they HAD to pay as secondary because Medicare will pay their part for any Government/FDA approved clinical trail. I leave that fight to your imagination. I did get back a little over 22k of my 25k up front money from the hospital.  That was truly a blessing and we were floored when that check came in the mail. Here is a link to the trial on CIDP and from here you can search for studies being done for other diseases.  https://clinicaltrials.gov/ct2/show/NCT00278629  

[TGO David]

That's a very amazing and inspiring story.  God bless you.

[Monkeyman2500]

Amazing and wonderful that advances in medicine could do this for you. The fact you struggled so long and survived is incredible.

[RED333]

Thanks for sharing, got to clean the dust from my eyes.

[soapy]

Thanks David, while we have never met, I've heard many good things about you from the Po Po and other folks from Smyrna. Also your advice when I first found TGO, convinced me to gather the strength to go and get my HCP.   I've spent many hours reading here, and I've often felt guilty for not paying to support this forum.  I'm sorry for that man. My wife takes care of the money since I got sick, and she has worried herself to death with it.  I went out on a limb to buy that used Bersa a couple weeks ago, and  I'm still trying to talk her out of making me sell it.  We're not broke, but one reason why is all our clothes come from Goodwill and I'm not a bit ashamed about it.  She won't walk buy a penny laying on the sidewalk. God Bless her soul. Thank you David, and all the rest of you gun slingers for all I have read and learned here.

[soapy]

I know your wondering,  I was in the hospital in Chicago for just under one month. Isolation floor. Flew home wearing a N95 mask, and surgical gloves. Left the wife at home. I knew it would be tough haul, and I didn't want her to see me suffer thru it, and she was good with it.  I hope my story will give others hope/help, cause I think it would have been easier to write a book, that to think back on some things.

 

 I can tell you this,  I'm one  happy man nowadays. I even helped a lifeguard last week who dropped from heatstroke and cracked his head open on the sidewalk.  30 something years ago, I spent a month in Ft. Meade Md. training as a Combat Medic.  I pick up a newspaper every morning and put it next to the door for an 86 year old neighbor, who broke her ankle in the ice storm.  Point being, it feels really good to pay it forward for all the help I've had over the years. Really, Really good.   I'm typed out.  Peace and strength to you and yours.

 

Edited to say I wasn't able to help that kid much physically, but after I found out he had no family here *MTSU student,  I went to the ER and gave him comfort for over 4 hours, and then I drove him to his apartment in the Boro.  He was so grateful you would have thought I saved his life.  Shrugs.

Edited June 17, 2015 by soapy

[hipower]

God Bless you, soapy. You have had a hard road, but are proof that perseverance, strength, a good wife and family, and most importantly the faith in God who can do all things; that we can come thru devastating things in our lives.

I won't bore you with my little story, but will say I'm very familiar with Rituxian, and some other drugs; as well as the stem cell procedure. It's not pleasant having these drugs.

You seem to have had a harder journey than mine, and I'm very glad to hear tht you are still here with us.

[soapy]

I'm sorry to hear that you been down that path hipower, and I would like to hear your story if you would share it. If you already have in the past, point me to it.  That was one thing that always struck me.  No matter how bad I was, I didn't have to look far down that hospital corridor to see someone worse than I was. I've been in ICU fighting for my next breath and the person in the next room is being covered with a sheet, and most of those folks you meet in those chemo clinics, they don't make it.  If you've not told your story somewhere and its long to type, shoot me a PM and I'll send you my number.  Thanks.

[hipower]

I'm sorry to hear that you been down that path hipower, and I would like to hear your story if you would share it. If you already have in the past, point me to it.  That was one thing that always struck me.  No matter how bad I was, I didn't have to look far down that hospital corridor to see someone worse than I was. I've been in ICU fighting for my next breath and the person in the next room is being covered with a sheet, and most of those folks you meet in those chemo clinics, they don't make it.  If you've not told your story somewhere and its long to type, shoot me a PM and I'll send you my number.  Thanks.

 

Thanks, but don't feel sorry for me. As with your story, I saw many people in worse conditions than myself; and those with a more deserving life ahead of them.

 

And it made me stop moping and crying woe is me. Somewhere on here, I've told a lot in different threads at times, but usually just conversationally like this. Never really sat and wrote out the whole thing.

 

Not that I mind. My wife tells me I share too much, usually when she's around. And that just tears her up, because of all the memories she has that I seem to have forgotten. The ol' "chemo brain" syndrome at work there.

Edited June 17, 2015 by hipower

[Jonnin]

that is amazing, so glad you are doing well!

 

This treatment is going to do a lot for a lot of people.   Similar treatments have already cured aids and MS in some patients.   The reset of the immune system was considered dangerous even a couple of years ago (keeping tabs on the process) ... if you get a serious infection after your immune system is disabled, its game over...  but the process is getting better and the stories from the patients speak of an up and coming miracle / breakthrough ....  congrats on getting in on a early run of it!

[TNWNGR]

Soapy you need to take your story and put it into a magazine format because it needs to be published. You did good bud, real good!