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effdee

Joined
Oct 4, 2010
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Link to my blog: http://mypsct.blogspot.com/

I'm scheduled to be evaluated next week (3/7-3/9) for the transplant. I've tried and (eventually) failed Pentasa, Entocort, Sulfazine, Prednisone, Azathioprine, Remicade, Humira, Cimzia, LDN, some more of the milder 'maintenance' drugs I know I'm forgetting, and the SCD.

I'm currently on Cimzia, LDN (it's helping slightly, but not much), Amitriptyline, Aciphex (reflux), smoking (vaporizing) marijuana on and off, and sticking pretty closely to the SCD (still drinking milk). My symptoms have been up and down over the last few weeks, but I have no fewer than 8-10 bm's and up to 14 or so, usually with diarrhea and bleeding, lots of burping whenever I eat/drink or go to the bathroom, and moderate stomach pains.

I should find out whether or not I'm eligible by the 9th after I see Dr. Burt. I'll be sure to update this and, if I do the transplant, I'll make a blog (in some fashion) about it.
 
Good luck with everything! I hope you are able to get in and it works wonders for you. I'm not even diagnosed yet myself, so stem cell therapy is a long way off from being an option for me, but it's really interesting and exciting for me to read about others' experiences with it.

If you get accepted, I'm looking forward to reading your blog! Best of luck and let us know how it goes! :)
 
Good luck - I hope you get accepted and that there will be another success story for stem cell therapy.

Looking forward to your updates.
 
I am curious as to what would make you ineligible?

You have clear 'refractory' disease.

*I ask, because I have pretty much failed everything on your list except LDN (which I try next), and may have to look at this path too (stem cell).

Have they expressed what would make you ineligible, like some other preexisting condition? Or, do you have to be Really, Really ill (severe symptoms etc..)?

I hope it works out for you, and will be sending you my thoughts and wishes.
 
JJOM: I believe Mr. Ziggy outlined the eligibility requirements in his thread about stem cell treatment. If I'm remembering right, the main requirements are that you have to have been diagnosed for at least 5 years, and you have to have tried and failed all the usual mainstream treatments (steroids, biologics, immune suppressors, etc). Since I'm undiagnosed, and since Entocort is working well for me, I wouldn't qualify.
 
Best of luck to you!

I'm curious how the travel is paid. Is it paid thru your insurance, out of pocket, combination, etc? Also, do they also pay for a family member while you are there?

Cimzia is failing me as well so I'm always very interested in anything I can read about this treatment.
 
JJOM said:
I am curious as to what would make you ineligible?

You have clear 'refractory' disease.

*I ask, because I have pretty much failed everything on your list except LDN (which I try next), and may have to look at this path too (stem cell).

Have they expressed what would make you ineligible, like some other preexisting condition? Or, do you have to be Really, Really ill (severe symptoms etc..)?

I hope it works out for you, and will be sending you my thoughts and wishes.
Click to expand...

In my case, the only things that would make me ineligible would be that my Crohn's isn't severe enough at the evaluation (turns out I've been my sickest in a while at the perfect time - my colonoscopy this morning showed very active inflammation, so I think I'm good there) or that I would not be healthy enough to handle the chemo required for the transplant. They do a lot of pre-testing right before you would start the mobilization chemo to check for every and anything that might be an issue. I'm in pretty good health aside from Crohn's, so I don't forsee any issues there. If there were, though, it would depend on what it was. It could be something they could treat/fix and then proceed with the transplant after you've recovered.

In general, yes, you have to be pretty ill with Crohn's, though. I'm not exactly sure what that means to the transplant docs but I will ask when I see them and let you know what I find out. That's been one of my biggest questions.

Thank you!
 
ThanksP said:
Best of luck to you!

I'm curious how the travel is paid. Is it paid thru your insurance, out of pocket, combination, etc? Also, do they also pay for a family member while you are there?

Cimzia is failing me as well so I'm always very interested in anything I can read about this treatment.
Click to expand...
Thanks!

The travel/hotel for the evaluation has been out of pocket for my family so far. Paula (one of the transplant nurses) said not to mention "stem cell transplant" to my insurance company or else they'd get all riled up! I'm going to look into possible reimbursement once I get home. As for the travel/hotel for the transplant itself, I know some have gotten a sort of travel allowence for it. I'll try to find out more about that later.

My mother, luckily, has a bunch of paid sick days/ill family member days saved up so she's covered for the evaluation. I think she'd have enough for majority of the transplant process, as well. That's all through her employer, though. My insurance wouldn't have a hand in that.


If anyone has questions feel free to ask. I'd love to get some answers for you.
 
any update effdee? i have also contacted Dr. Burt regarding my condition. I haven't heard back from them yet. Btw, what insurance company do you use?
 
I just got back home a few minutes ago. I've been accepted for an allogeneic stem cell transplant using umbilical cord stem cells. The next piece to work on is getting insurance approval. I have CareFirst BlueCross/BlueShield PPO which Dr. Burt said is a huge pain to fight with, but they have paid a majority of the time.

It still hasn't sunk in that I could very realistically live without Crohn's soon. I'll keep you all updated. Time for bed.
 
So the trip went very well. No real problems/issues with anything. The evaluation took place at Northwestern Memorial Hospital and I have to say it is a fantastic place. Everyone was very pleasant and helpful. Only really had to wait more than a couple minutes for the CT enterography. The colonoscopy and CT enterography showed very active Crohn's in my colon.

I saw Dr. Craig and we went over symptoms, medications, and the usual questions. He examined me, then we did a brief history and he thought I would be eligible for the transplant, and sent a message to Dr. Burt saying so. My blood work results hadn't come in yet but he said he would go over them once he got them.

My visit with Dr. Burt was similar. A bit more in depth history, current symptoms/medications. No medical issues aside from Crohn's. Dr. Burt was interested in doing an allogeneic transplant rather than autologous because, if stem cells from a non-Crohn's patient were used (meaning not my own or my brother's since he has Crohn's, too), it would decrease my chances of relapse. He said at 3 years out, 80% of patients had relapsed but were in remission with medication and thought using stem cells from umbilical cord blood would do even better (he has only done it with one other Crohn's patient so far). From what little I currently understand about that part of it, getting the allogeneic transplant will add the risk of graft vs host disease. Dr. Burt said that the way they do it, it "shouldn't" happen, but that's what I don't completely understand yet.

My blood work results were ready shortly before my appointment was over but I forgot to ask about it (head spinning from everything else), so I'll get in touch with the nurse tomorrow to ask about it.

My insurance company is one of the biggest pains in the ass (literally) about paying for this, apparently, so it could be a matter of months before they approve it, if they do. Dr. Burt said it was $125,000 (less than I thought) and kept insisting we'd be able to fight enough to get it paid for, but it's at least within a realm of possibility for my family to afford it if it comes to that. The financial team at Northwestern is supposed to write a letter to my insurance company and work with them to get it taken care of. It's possible that my mom (my insurance is through her) can ask her employer to get involved and pressure the insurance company to pay and help things along.


Feel free to ask any questions in case there's something you'd like to know that I left out. I'm still exhausted so I probably could have gone over everything a bit better but, oh well!
 
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thanks for the update, effdee, glad it went well.
it seems like the relapse rate is a little high. If I had the transplant, I wouldn't want any medication afterward.
 
Yeah the relapse rate is not what I was expecting at all... From what Ziggy said it sounded like it was either a cure or something to keep you Crohn's free for years and years...
 
Since the jury is still out on the real trigger for Crohn's, it makes sense (to me) that it's almost inevitable to relapse. If you have Crohn's, you've already had the genes mutate once that cause Crohn's. There isn't really anything being done to that, just the immune system. The next big piece would be to find out what can be done to reduce the chances of that happening.

I wouldn't be hung up on having to take medication in the future. Honestly, I'd do the transplant if it only just made everything that's stopped working for me work again. Being on medication is completely acceptable, for me, as long as the disease is under control and I could function, get through school, and so on.
 
point taken, effdee.

I don't know if you've read Dr.Burt's paper regarding long-term follow-up (5 years) of his stem cell transplant trail study. Out of 24 patients that had stem cell transplants, 9 patients have not relapsed to date, and of 15 patients who restarted therapy 8 patients subsequently became medication-free for the second time. Percentage of patients who remained in remission independent of therapy was between 70% and 80%.

As long as your condition is in remission and you don't have to take steroids, I think the transplant is well worth it. Let us know how things go.
 
gt91,

Do you know where we can read the paper you are referencing? I would appreciate it.

Thanks,

JJOM

I would also like to 'publicly' thank effdee with his help with a few questions I had in a recient PM.

'Effdee's journey' has already been a great help to me. :dog:
 
Still no word from my insurance company. They lost some of my paperwork, which Northwestern had mistakenly shredded so they couldn't send it again, but I still had copies of what they needed and faxed it to them.

I've been feeling a bit better over the last week and a half or so. I had a Cimzia dose around then, so it seems like I'm getting some benefit out of it for a couple days, at least.
 
I hope everythink works out for you! I too am waiting on insurance! My GI and I contacted Northwestern and they approved me for a visit, and they are now working on getting some old medical records, just picked up my most recent records copied today and mailing those soon. Basically just waiting on insurance to approve a "second opinion" ... Which could be a struggle because I live in Dayton, Ohio so the insurance will want a second opinion somehwere closer than Chicago, but I can still hope for the best! My doc said the insurance could take a few months so now I just patiently wait...
 
I think the stem cell transplant Ziggy had done was exactly what he said it was - it gave him his life back. You must remember that these patients are extremely ill - and the stem cell transplant completely cured 9 out of 24 patients - and of the remaining 15 that did have to take a course of treatment for a patchy area of inflammation or whatever, eventually 9 went back to no meds whatsoever. So, for 17 out of 24 people to go from being the sickest of the sick, to living a life without crohns or meds is truly amazing. I look forward to Effdee story - and hope and pray that his insurance company does not take long to do the right thing. By the way, you do not have to be diagnosed for 5 years in order to be eligible for the transplant. Basically, Dr. Burt (the immunologist and head of the transplant team, Dr. Craig (the gastroenterlogist), and sometimes Dr. Halverson (the colorectal surgeon) will discuss each case, and make an independent decision of whether they feel the patient should proceed with the transplant. Dr. Burt makes the final decision. I just pray that all these brave people who proceed with these transplants lead to a 100% cure oneday - where no-one has to live with Crohns ever again.
 
I was hoping my next post here would be saying when I'd be starting the transplant, but I still don't have my schedule yet. Still good news, though!

My insurance company has approved the transplant! Due to a few delays for various reasons, it will be another 4 weeks or so until I get scheduled. My blood arrived at the lab today for HLA testing (to find matching cord blood stem cells). It will take 2 weeks to get the results, 2 weeks to look through the registry for a match and obtain it, and then I will be scheduled. It looks like I'll be starting sometime in July.

No significant changes in my health. Still the same old up and down. Cimzia helps a little bit for about a week and a half after each dose. My weight has been stable around 132lb. I'd really like to have a set date to look forward to, but it's relieving to know that it's going to happen before long.
 
Would the process of approval have been easier if it would have been your own cord blood? Do you happen to know?

Not that it matters to me. Banking cord blood wasn't an option when I or my daughter were born. Just wondering ....
 
Great to hear effdee. I have been hoping to hear good news about this (temped to email you a couple of times, but I figured it will play out as needed).

LOSTnut's question is interesting. My first child was born a couple of weeks ago, and we did 'bank' the cord blood. I guess for a disease like ours, that probably has a genetic component, a patient may not want to use their 'own' stem cells. Hopefully those cells will never be needed, but with the way medical technology is headed we figured it was a great 'insurance' policy.

Hey, Maybe some day I could 'borrow' some of my kids stem cells for my crohn's. :)

Question for effdee: Have they told you to do anything to prepare for the chemo/treatment?
 
LOSTnut said:
Would the process of approval have been easier if it would have been your own cord blood? Do you happen to know?

Not that it matters to me. Banking cord blood wasn't an option when I or my daughter were born. Just wondering ....
Click to expand...

Great question. I'm not entirely sure, but it's possible that would have made things easier. From what I understand, part of the attractiveness of cord blood stem cells is their naivety, meaning they're 'potent' stem cells without many major biological influences at that stage. I would think having stem cells from my own cord blood would nearly eliminate any risk, as far as graft rejection and graft vs host is concerned, and still be good candidates for use as they weren't as 'involved' with my immune system compared to stem cells obtained via the autologous route.

As far as the approval processes for being accepted for the study and insurance coverage, I can't say. I will ask Dr. Burt about this and make a post about it when I can talk to him. For the insurance side, I have no idea what they base their decisions on and what could influence it. It would make sense that they're more inclined to pay for something with a lower risk, but who knows.

JJOM said:
Great to hear effdee. I have been hoping to hear good news about this (temped to email you a couple of times, but I figured it will play out as needed).

LOSTnut's question is interesting. My first child was born a couple of weeks ago, and we did 'bank' the cord blood. I guess for a disease like ours, that probably has a genetic component, a patient may not want to use their 'own' stem cells. Hopefully those cells will never be needed, but with the way medical technology is headed we figured it was a great 'insurance' policy.

Hey, Maybe some day I could 'borrow' some of my kids stem cells for my crohn's. :)

Question for effdee: Have they told you to do anything to prepare for the chemo/treatment?
Click to expand...
Go ahead and shoot me an email when you have some time. I'd love to hear how you're doing with things.

Congrats, JJOM! Banking your child's cord blood definitely sounds like a great idea. There's more and more being done with stem cells each day.

Nothing too specific about preparing for chemo. I'm doing my best to keep my weight up, and avoiding other illnesses is always a good thing, since you want to be as healthy as possible in general going into chemo.
 
If I would have had my daughter after becoming sick and banking being available I would have jumped on it.

But, as I said, back then it wasn't an option and I know the initial banking is a bit pricey. Still, if available and healthy I probably would have, at least, donated the blood and tissue.

Personally, I think it is great, especially when you think what good it can do and that it is basically treated like biohazard and discarded of.
 
Well Northwestern put my name in for the patient-first room at the Worcester House at the beginning of last week, and the room opened up on Thursday so I flew to Chicago on Friday. My pre-testing was originally scheduled for the week of July 25th, but they were able to reschedule most of it since I got here early so testing will now start tomorrow (the 11th). I'm scheduled to be admitted to the hospital for the transplant on August 16th.

I'm going to try to setup a blog for everything today and I'll post the link when I do.
 
The ball is really rolling now, Awesome. Looking forward to the blog to learn about the testing, etc. :dog:

Nice that they provide access to a room. Are there any other patients Worcester House (sounds like a dorm)?

Quick question: Is the team at Northwestern mainly looking to do donated stem cells now? Or is the decision on what transplant to do case-by-case?

J
 
Effdee, I'm looking forward to hearing how it goes and to reading your blog when it is up! Please keep us all posted, and best of luck with everything!
 
LOSTnut said:
Would the process of approval have been easier if it would have been your own cord blood? Do you happen to know?
Click to expand...
I asked Dr. Burt yesterday and he said it was a good question. It didn't seem like something he considered since banking cords is so recent the only patients who would have the option would be too young for the transplant anyway.

Using your own banked cord would eliminate the body recognizing the infused stem cells as foreign, but you would run into the problems that 1 cord doesn't always yield enough stem cells for the transplant, and the stem cells would be coming from your own immune system, the predecessor of a Crohn's developing immune system. Although the stem cells would be much younger and better than an autologous transplant, it still might not be ideal in that the relapse rate might not be any better than an autologous transplant since it would still be from your immune system. It seems to be somewhat of a risk:reward situation in that donor stem cells that come from a healthy immune system would give you the best chance at the new immune system being healthier and less prone to relapse than before, but carry the small risk of graft rejection and GvHD. The impression I get from Dr. Burt is that the risks of either of those occurring, and them being severe, are really, really low, so the potential benefits with donor stem cells far outweigh the potential disadvantages.

I'm not sure how well I explained that so let me know if it I should clarify anything.
 
Thanks for the post heads-up Patrick! Please keep doing that! Continued good luck!!
 
Do the docs think the aggravation of the scope along with the inflammation caused all that? Phew, hope you're still improving Patrick!
 
Yeah, that's the assumption. Things would have gotten worse before they got better if something actually was perforated. The fever went away overnight so I'll have solids for lunch and be discharged this evening if that goes well.
 
I guess I understand what the doctor is trying to say. However, why do they then treat certain chronic diseases and cancers with stem cells and cord blood successfully??
According to this explanation the cord blood and stem cells would potentially develop into the same "sick" cells and nothing is gained??
Just wondering ....
 
It's exactly what you said, a treatment, and not a cure, unfortunately. Stem cells are the best/most potent at repairing and healing things that have been damaged, to an extent, but once the effects of the stem cells wear off it's entirely possible to get sicker again. I'm not sure but I wouldn't think infused stem cells alone would change the makeup of the immune system. Good question.

I just got word that I'll be discharged today! I'll work on another blog post tonight or tomorrow to fill in the other details.
 
Hey Patrick, I know Dr. Burt can't talk about particular patients but do you know how many have completed sct under his trial and what his up to date success rate is?

I hope this setback is mild and temporary for you Patrick!!
 
Good question. I asked my transplant nurse and here's what she was able to tell me.

Just one patient so far with cord blood, in 2009, who has been in remission since. No symptoms. One of their doctors wrote a paper on the case which is awaiting publication, so they can't share more about it yet.

They've done 27 autologous on study, and 5 off study. I believe off study means the protocol was altered for one reason or another so it wouldn't count as the same procedure. I'll ask for clarification and let you know.

Here's the latest for the autologous transplants:

Eighteen of 24 patients are 5 or more years after transplantation. All patients went into remission with a CDAI less than 150. The percentage of clinical relapse-free survival defined as the percent free of restarting CD medical therapy after transplantation is 91% at 1 year, 63% at 2 years, 57% at 3 years, 39% at 4 years, and 19% at 5 years. The percentage of patients in remission (CDAI < 150), steroid-free, or medication-free at any posttransplantation evaluation interval more than 5 years after transplantation has remained at or greater than 70%, 80%, and 60%, respectively.
Click to expand...

The 5 most recent patients were off study. Not sure what they're allowed to say about them, but I'll inquire about that, as well.

For now, Dr. Burt and company believe cord blood transplants will provide the most enduring remission and that the mixed chimerism (the newly formed immune system that gets its makeup combined from your own immune system and the infused stem cells) of the cord blood will fend off any inherited Crohn's autoantibodies that could possibly surface after the transplant.

Although some patients on the autologous protocol have relapsed, it appears that they have a much better response and increased sensitivity to TNF-inhibitor medications after the transplant, whereas they were not effective or minimally effective prior to the transplant. That being said, they are working towards doing exclusively cord blood transplants for the Crohn's patients.


Things are still going better for me. I think this is the best I've felt in quite a while, despite the colonoscopy complications, thanks to the Cipro and Flagyl. Go figure!
 
Thanks Patrick! I'm assuming you will be having cord blood tp. It's very interesting and very hopeful. Please keep posting and blogging!!
 
Will do!

I heard back about what "off study" means. It means that the patients did not qualify to be on study, or Dr. Burt did not believe the benefit would be very significant in their cases, however the patients wanted to proceed with the treatment.

So it sounds like they have the option of still doing the transplant on patients who don't quite meet all of the eligibility criteria, as long as it wouldn't be too much of a risk. I vaguely remember hearing that they rarely do the transplants out of compassion, so that must be what they mean.
 
Awesome Patrick! It feels a bit like you guys are pioneers blazing a trail for the future!! Hope you enjoy that last meal...out!!
 
Hope the delay doesn't cause a problem with the Cimzia effectiveness. It's getting close now though Patrick!! I know you're very excited to get on with it!!!
 
That's the only thing I'm concerned with. I'd love to get things started, but 2 more days of vacation here isn't bad at all. The more time I spend in Chicago the more I'm liking it.
 
I have an over-active imagination and that wire traveling up your vein gives me phantom pains:). Thanks for keeping us up to date Patrick. Enjoy that last meal on the outside!!
 
I didn't feel anything aside from pressure once he gave the shot to numb my arm. The catheter going in feels exactly like you would think. I just kept my mind on other things and barely noticed it after a minute. Not bad at all. Always happy to see your posts!
 
I've been following your blog. Sounds like you've been having fun in Chicago! Have you decided on where to go for your last meal? My husband lived in Chicago when he was in art school, so although I've spent a lot of time in the city, it was during a time when we were both poor college students and couldn't afford to go anywhere nice to eat! But, if you're looking for recommendations, I haven't been to either one of these but I will say that I've heard good things about Shaw's Crab House and also about Hot Doug's. Shaw's is obviously seafood and Hot Doug's does gourmet hog dogs and fries. I believe this is only done on the weekends, but they fry their fries in duck fat. That sounds amazing, I both drool and hurt just thinking about it! Anyway, have a great time no matter where you decide to go, and best of luck with the stem cell treatment!
 
Thank you for keeping us up to date! Good luck with the hair cut and enjoy your last meal!
 
Cat-a-Tonic said:
I've been following your blog. Sounds like you've been having fun in Chicago! Have you decided on where to go for your last meal? My husband lived in Chicago when he was in art school, so although I've spent a lot of time in the city, it was during a time when we were both poor college students and couldn't afford to go anywhere nice to eat! But, if you're looking for recommendations, I haven't been to either one of these but I will say that I've heard good things about Shaw's Crab House and also about Hot Doug's. Shaw's is obviously seafood and Hot Doug's does gourmet hog dogs and fries. I believe this is only done on the weekends, but they fry their fries in duck fat. That sounds amazing, I both drool and hurt just thinking about it! Anyway, have a great time no matter where you decide to go, and best of luck with the stem cell treatment!
Click to expand...

Thanks, Cat! One of my first thoughts about all the great food here was that I'm lucky to be able to afford it (I'll pass on those $50+ steaks, though). I've heard Hot Doug's is great, but haven't gone. There were almost too many recommendations for places to eat. We mostly picked by location and it was a little overwhelming, so we didn't get everywhere.

xJillx said:
Thank you for keeping us up to date! Good luck with the hair cut and enjoy your last meal!
Click to expand...

Thank you, Jill!
 
Glad you are enjoying my hometown. The thing I miss the most about Chicago is THE FOOD, sorry I missed your blog about it. OK, I miss the Cubs too but they'll never change LOL.

Best of luck to you, you are an inspiration and give such hope. My thoughts are with you!
 
You got a nice round head Patrick:) It's a good look for you! Hope you continue to feel well and as always keep posting!!
 
Thank you both. My mom and someone at the salon made the exact same comments, Mark. I'm liking it so far compared to dealing with all of that shaggy hair.
 
I hope you're not bored but I hope your day is uneventful! Will you be allowed to mingle with Burt's other patients? How many are currently undergoing SCT with Burt?

Sorry for so many questions Patrick, but I just thought of another:). Does Burt still personally oversee these early stages? I suppose I'm hoping these things are being viewed as more routine!
 
I'm sure we'd be allowed to chat but, as you can imagine, they don't encourage immunocompromised people hanging out with each other too much. I think the nurse mentioned that Dr. Burt has 7 patients on the floor at the moment. Dr. Burt is involved the whole way, and visits the patients every morning. It's definitely reassuring to see him, and it gives you the chance to ask him questions directly. As long as everything is going as expected, I don't think he changes anything. The protocol is laid out and essentially routine, but he still oversees everything.

I'm happy to answer questions. I'm not sure of all the things people are interested in hearing about so feel free to ask. I always have the right not to answer!
 
Holy cow Patrick! My heart rate would get elevated just from hearing that list of meds they were going to put in me!! Glad you seem to be handling them all w/o ill effects!!

Do you have any family who visits? or can they?
 
I've adopted the mindset that I'm giving them my body to do what they need and my brain is along for the ride to experience it.

My mom has been with me most of the time. She goes back to her room to keep a good sleep schedule. She'll stay around if I ask her to, or leave me if I want to be alone.
 
I'm glad you still go your sense of humor after all that fun Patrick!! Hope today goes better for you!!

I really appreciate your posting despite feeling so bad. Don't know how you do it!!
 
If I didn't have a sense of humor through all of this, I'd be in tears all the time. :p

You're quite welcome. I'm enjoying the blog myself. It really is so much easier to just post on that than to personally tell friends and family.
 
Sounds like you're keeping everybody on their toes Patrick! I hope they get the antibiotic right today! But I guess I'd take hives over nausea too:), though I'm not sure about the swollen tongue and throat!!
 
I was too drugged up to really noticed how concerned everyone was. Once Dr. Burt was there and they gave me the Benadryl, Hydrocortisone, and Pepcid, I knew nothing worse would happen. The slow onset of the reaction was interesting, to say the least.

Today went much better, but not without a little extra attention. :)

http://mypsct.blogspot.com/2011/08/day-2.html
 
Well, comparatively speaking, I'd say it sounds like you had the day off yesterday:). I hope it continues to go smoothly!!
 
Wow, this seems to be moving much faster than Ziggy's!! I'm sure it can't go fast enough for you!
 
I want to be one of the first here to wish you on your new birthday.
You did it Patrick! I can't tell you how excited I feel for you. You'll
be starting the beginning of your new life soon...without crohns! Just stay strong(and clean lol) through the next couple weeks while your new immune system grows. I don't think i mentioned it on the phone, but I wanted to thank you for posting this blog during your transplant for everyone else to see.

Definitely a lot shorter and less complicated than the old
protocal Dexy ;)

Well done.

Below I've attached a link to something that should make you smile.
It is a study that started in 1982. It followed 4 patients who underwent an
allogeinic donor transplant for their leukemia. They all coincidently had crohn's disease too. Then there was one of the 5 patients who underwent a mixed autogulous+allogienic transplant, using both their cells and a donors. All were followed for 15 years. All 4 that did the allogeinic transplant stayed well for the remainder of the study - 15 years! Thats 100%. http://www.ncbi.nlm.nih.gov/pubmed/9496932
 
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You're doing so great, Patrick! You should be really proud of yourself.

I hope you are having a good day today.
 
Thank you, everyone! The earliest I'd be released is probably September 9th, which would be 2 weeks from day 0. I'll get a better sense of that when the time gets closer.

Thank you, Mr. Ziggy. Again, I wouldn't have learned about this were it not for your blog. I still remember seeing it for the first time and thinking I hope I never have to do it. It's scary to think of where I'd be without it now. The least I can do is share my experience. If one person benefits from it like I did then it was well worth it. Thank you for the link to the old trial. Needless to say, I'm really excited to see how the allo transplants end up.

Day +1 went really well. :)

http://mypsct.blogspot.com/2011/08/day-1_27.html
 

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