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My Stem Cell Transplant Blog

How exciting!! I just stumbled on your blog today, and read it start to finish as quickly as I could! I'm so excited for you and selfishly so intrigued for myself... how did you get started in all of this? Did your home GI refer you or did you find the trial on your own?
Thank you so much for blogging your journey!
 

Tesscorm

Moderator
Staff member
Congratulations Patrick! :congratualtions: Just read your blog and all your posts! How very amazing for you and how amazing you are for sharing all your experiences. No doubt you have already made a difference to many, many people and will continue to do so!!:highfive:

I'm being silly but am feeling so emotional for you right now!! :ylol2: I hope all continues to go extremely well for you.

I am looking forward to many more happy posts from you! :dance::dance:
 
I am cheering for you! I know I am a little late, but I am going to start following your story! You are an inspiration and it is nice of you to jornal it all for us to follow. I will be thinking about you!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I keep your blog on my Top Sites, Patrick. The last two days may have been routine but that's just what we like:) I hope there is no more drama but don't stop your daily updates. Please!!
 
Wow Patrick you really are an inspiration, for the first time ever I'm excited about a treatment, nearly tore carpet off floor running up 3 flights of stairs to tell my hubby your story. Will be glued to your updates. Not sure Ireland has it to offer and if it is i'd say it's expensive but I will be asking at next out patients visit.

Good luck and take care
Love Gwen
 
How exciting!! I just stumbled on your blog today, and read it start to finish as quickly as I could! I'm so excited for you and selfishly so intrigued for myself... how did you get started in all of this? Did your home GI refer you or did you find the trial on your own?
Thank you so much for blogging your journey!
Unfortunately, my GI at the time knew very little about it. He was convinced that my Crohn's was actually fine and it was all in my head, so he wrote it off very quickly. I switched doctors since so I still have a GI at home if I need. The only reason I found the trial is because of Mr. Ziggy's blog about his transplant. I found more online about it after that, but it isn't easy to find if you don't know it's out there. I wish there was some sort of advertisement for it.


Thank you all for your kind words and encouragement! I'll be posting daily at least until I'm discharged and then we'll see after that.
 
Blows my mind to think Patrick is more than likely 100% crohns free right now. That chemo bringing his immune system down to 0.1 white blood count, means they killed off any immune disease too. He would now have some inflammation left from the crohns. This will go down, and the stem cells he now has will repair all damaged tissue, and grow a new immune system at the same time. This new immune system will have no crohns because he was not given back his own stem cells - he got a Donors. These stem cells will continue to heal colon and tissue for up to 1 year. However, it is more likely to be all healed long before they stop working. New mucosal linning will start to grow in 4 weeks from now roughly. That is about when I started to feel like a whole new me.

Hope Patrick doesnt mind me commenting. I can't help but want to comment. It's brining back so recent memories. lol


Praying for ya bud. Seems like you're handling it better than I did! :)
 

Ian

Location
London, UK
Glad it all continues to go well for your Patrick, crossing my fingers you're cured!

I feel like pointing to this and saying 'I want one!' like a kid would at a toy in a shop window.
 
Accepting new patients?

Sorry you originally had to deal with a doctor that didn't take you seriously. I dealt with a similar situation, and it's just not right. But, I'm glad you've found a good at home doc now, and have been taken on by Dr. Burt who appears to be the leading doctor in stem cell work! I've been reading up on him through what i can find on google...Also, congrats on a fairly uneventful day :) Although I'm sure the blurred vision was a little unsettling, glad it all cleared up :)
Do you know if the trial you are on is accepting new patients? It is a trial right? Short of calling the Gastro. department at Northwestern, and asking them ' are you accepting new patients for the stem cell transplants' I don't really know how else to go about getting the ball rolling... but then maybe that is an okay starting place? I couldn't find anything helpful online as far as becoming a patient...
Chicago is about a 4 hour drive from my home, but from what I understand from your blog it is quite a drive from your home as well? And if accepted you just stay there for a couple of months? Are you allowed to have family stay with you or visit?

Thanks so much for all your help, and I understand if you don't have the time/energy right now to answer my millions of questions, but I can't help but ask, just incase you do have the opportunity to write back.... REst up and keep kickin' butt!!!

-Raechel
 
Thank you! Comment as much as you want, Mr. Ziggy (and everyone else)! I'm always happy to hear from you via any means. I still find it too good to be true to think that this is a real cure.

Raechel: Dr. Burt is always interested in evaluating new patients. It's still a trial, yes. Calling the Division of Immunotherapy at Northwestern really is the best way to get started. That way you get all the info you need straight from them and can ask any questions. I'd be happy to give you their phone number so please PM me if you want. They're all extremely nice and helpful.

It was too far of a drive for me, so I flew out. The logistics vary for each person depending on how the evaluation goes, insurance approval, scheduling, and whatever else. They originally had me set to be here for 2 weeks for pre-testing, then go home for 2 weeks, then back out for about 4 to start the transplant. I had the chance so I stayed at the Worcester House because it saved so much money. Family is welcome to visit and even stay the night. You can ask for sheets for the pull out couch.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Patrick, are your transplant mates going as well as you? I hope so!! It sounds like the process has improved so much in such a short time, it's amazing!!
 
I'm actually not on the same schedule as the other patients, and I'm the only Crohn's patient. Getting pushed back 2 days threw things off a bit. I chatted with some of the other patients about the time they had their stem cell infusions, and they all said they didn't feel too bad and it was still so worth it. Everyone has been neutropenic for at least a few days now so there's been less interaction, as you can imagine.

The process definitely has gotten ironed out over time, but I still feel very fortunate to have handled the chemo as well as I did. Yeah, I had an anaphylactic reaction to Campath, but I didn't feel rotten for days with nausea, vomiting, and fatigue. I expect to be more tired after engraftment and my body goes to work, but that's not bad at all.
 
Ahh yes. I remember the group having to get a couple red blood cell infusions. Also had a platlet infusion. So don't be worried if you gotta get one or two Patrick. It's normal for them to see. Keep sailing bud!

The neupogen shots Effdee is taking will stimulate his body to make more stem cells now. These are the shots he talks about taking in the morning now for this week. Sometimes the patient might feel some bone pain. It shouldn't be too bad, and is an indication the stem cells have be multiplying. Some people dont get pain. Effdee is probably feeling really really tired as he says. Not to mention the benadryl they give him every day to pre medicate. Lots of ZZZzzzz... i bet! lol
 
Thanks for clarifying that, Mr. Ziggy. The chemo will still be killing off cells until the stem cells engraft and my body starts production. It would be strange to not need transfusions. I'd expect to need more sometime next week. I'll note that in the next blog post.

Surprisingly, Benadryl doesn't knock me out anymore. I don't feel drowsy at all from it, and it used to put me to sleep within an hour. I've been taking plenty of naps regardless, though.
 
I hope the blood transfusions are helping you feel better. It is great to know that your bone marrow is working! I hope you won't be afraid to take pain meds if you need them, and here is hoping your pain is mild.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hey Patrick, besides naps, how do you spend your time in there? You must be about to go stir crazy by now!

Glad everything is still on schedule:)
 
I think I have a bit more energy since the red blood cells transfusion. The pain isn't nearly bad enough to take anything for it.

I actually have most of the comforts from home I'm used to. I've got a laptop, wifi, my Xbox and Kindle. I'm a sports fan and they get ESPN here, I exercise when I feel up to it, and I have a friend in the area who visits occasionally. I'm pretty patient after all these years and waiting for this is so much easier than the hurry up and wait for other treatments that may or may not work. I know I'll be home by the end of next week and can get started on my new life.
 
When I read your posts, and they say things like ' home next week starting my new life' , it makes me so excited for you! Then, my mind wanders to, will that be me one day in the near future? Back to a normal life again? How amazing!! Keep up the posts, you are making me more optimistic daily! :-D
 
Just wanted to let you know I found your blog last week (thanks to Mr. Ziggy's thread alerting us) and have been keeping up with your progress and praying for your full recovery. It is AMAZING what they are doing with you, and also with Mr. Ziggy's transplant success (I read his whole blog too), and with the others.

(I wasn't able to tell you about it until today because I lost my Crohnsforum password & just found it! :redface:)
 
Must be pretty boring for you hanging about in hospital, but good that nothing 'exciting' is happening!

Take care.
 

xJillx

Your Story Forum Monitor
I am glad your throat is feeling a bit better, Patrick. I was concerned you were coming down with something. Take good care of yourself, buddy!
 
Thank you! Dr. Burt wasn't concerned in the slightest about a cold or anything. Things like that seem to be somewhat normal and they're completely on top of everything if it changed. My job is to tell them anything different I notice, and they check it out to see if it requires further attention or if it's nothing to worry about.

Day +12. Should be home within a week. :)

http://mypsct.blogspot.com/2011/09/day-12.html
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I wish I could think of better words to describe the hope your posts give but I just keep coming up with awesome!! Where's my thesaurus?
 

xJillx

Your Story Forum Monitor
Thank you! Dr. Burt wasn't concerned in the slightest about a cold or anything. Things like that seem to be somewhat normal and they're completely on top of everything if it changed. My job is to tell them anything different I notice, and they check it out to see if it requires further attention or if it's nothing to worry about.

Day +12. Should be home within a week. :)

http://mypsct.blogspot.com/2011/09/day-12.html
Dr. Burt and his staff sounds so amazing. You are obviously in great hands.

Hooray for being able to go home soon!!!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
That's the awesomest of all!! I hope you'll continue to update Patrick, even if it's just to say "I feel great". Especially just to say "I feel great"!! Well done my friend!
 
I urge anyone that is calling Dr. Burts office, to keep calling on a daily basis if they don't contact you. Please keep calling, I know Dr. Burt surley would agree, and wants to help as many people as he can. If no one calls you back, please contact me and I will see to it that you are called back. I dunno if their just backed up with work, but it shouldnt take a week to call you back.
 
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Ziggy,
Things still going great for you? Still crohn's free? Still no meds?
I am feeling good. I did however get my own stem cells. The new direction is donor stem cells. I believe in the donor option. If my crohns came back I would do the donor stem cell transplant in a heart beat if i could. I have realistic expectations of the autogulous sct - im sure you've read the statistics. This trial Effdee is on with donor stem cells have kept 4 people in remission for 15 years. Its where all the hope lies. Burt also said i would automatically be accepted if I relapsed.

Hows your son? Pm me if you like - i feel like im hyjacking effdees thread. lol
 
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Ziggy, Yes, I agree...I have a bad habit of hyjacking...like its all one big conversation!! :)

Effdee, I am so glad you are getting to go home!! Please keep us all posted. All of us with young children are closely watching all this stem cell stuff. Our kiddos can't participate, but they will benefit someday from all your bravery!!! You're in my prayers.
 
I'd like to echo what Mr. Ziggy said. To anyone calling their office, follow up within a few days if you don't hear back. I'm not sure if it's a matter of being busy or losing track, but they ARE interested in more patients! Once I started the process with them, it rarely took more than a day to hear back from a question or what have you. If it did, though, another call would take care of it. Don't get discouraged about it. You're probably used to the run around from doctors already, right?! This one is well worth it!

I believe Duke has a pediatric trial either starting or recently underway, and Dr. Burt will be doing pediatric trials when Northwestern's Children's hospital is complete (wish I knew a time estimate for that).


Day +14. I'll go over more soon. Enjoying being home for now!

http://mypsct.blogspot.com/2011/09/day-14.html
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Please keep us all posted. All of us with young children are closely watching all this stem cell stuff. Our kiddos can't participate, but they will benefit someday from all your bravery!!! You're in my prayers.
Amen, Kathy!!

Wow Patrick, two months!! Enjoy home!! I assume they'll still monitor things closely for a while. Please keep posting:)
 

Tesscorm

Moderator
Staff member
I'm so happy for you that all is going so well ! Wishing with all my heart that all continues to go well for you! :D Thank you so much for sharing your experience with everyone, you have given so much hope and inspiration! :Karl:
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Patrick, if nothing else, just post a smiley face every now and again. I'd just very much like to know how you are getting on!!
 
I am so thankful for your and Ziggy's blogs. Ton of info and hope for so many affected with this stinky disease. Good luck with your journey!
 
Patrick,
So glad to hear that you're doing well. Its so fantastic!
I had a question for you about Dr Burt, (this has probably been mentioned somewhere), but does this stem cell transplant only help crohn's patients or is it being done for Ulcerative Colitis too? My son's aunt has UC and her GI is proposing a removal of her large intestine.
 
Patrick,
So glad to hear that you're doing well. Its so fantastic!
I had a question for you about Dr Burt, (this has probably been mentioned somewhere), but does this stem cell transplant only help crohn's patients or is it being done for Ulcerative Colitis too? My son's aunt has UC and her GI is proposing a removal of her large intestine.
It is just for crohn's at the moment. Colitis can be cured with the removal of the colon. For this reason the FDA has approved the trial for someone diagnosed with crohns disease. I hope they start doing colitis down the road sometime. Sorry for the news... :(
 
Thanks for the update! Good to hear that you are feeling ok considering what happened last week! Would you mind sharing what the "chimerism" blood test is? How often do they check your white blood count? Thanks.
Ashley
 
Thanks for the update! Good to hear that you are feeling ok considering what happened last week! Would you mind sharing what the "chimerism" blood test is? How often do they check your white blood count? Thanks.
Ashley
The chimerism testing will show what percentage of my immune system I got from the cord blood graft that took by comparing it to chimerism testing they did pre-transplant. They do the same thorough set of labs each time so weekly for a bit, then every other week, then monthly.
 

David

Co-Founder
Location
Naples, Florida
This is such a wonderful thread, thank you for keeping us updated and here's to continued success!
No restrictions. It's mostly a common sense and comfort thing. I'll be choosing to avoid salad bars and cooking beef to medium, a bit more than I used to.
What's the reasoning behind no rare beef?

The chimerism testing will show what percentage of my immune system I got from the cord blood graft that took by comparing it to chimerism testing they did pre-transplant. They do the same thorough set of labs each time so weekly for a bit, then every other week, then monthly.
It didn't dawn on me until you mentioned this that they're creating a chimera immune system. AMAZING!

I heard an NPR report the other day about a woman who didn't test genetically positive as being the mother of her children. It wasn't until they did extensive testing that they realized she was a chimera. Part of her twin sister was her. Instead of normal twins or siamese twins, they were one body, two people. The kids were her sister's. Crazy stuff.
 
David that is so interesting - I never thought of that either - so I did some research myself:

People who have received bone marrow transplants are actually chimeras, too. Bone marrow transplants are used to treat certain blood diseases and cancers. In these transplants, the doctor destroys the patient's bone marrow with special drugs or radiation. Then the doctor puts in new bone marrow from a donor.

These new bone marrow cells have DNA that's different from the patient's own DNA. And because bone marrow stem cells make blood, the patient's blood cells will have different DNA than the cells in the rest of his or her body.

All these examples show just how flexible embryos are at very early stages. They also show why ES cells are one of the holy grails of medicine. If we can control the flexibility of ES cells, we may be able to cure people of diabetes, Parkinson's, and many other diseases. Thank you, chimeras, for helping point the way!

That is just some of what I read. My only question is - why do they implant 2 different (cord blood) immune systems in Efdee's transplant. Why not only use one? Wouldnt the one reject the other - why do they implant 2 different immune systems back into you?

Ashley
 
Day +42. Still doing pretty well.

http://mypsct.blogspot.com/2011/10/day-42.html


What's the reasoning behind no rare beef?
For steak, I guess it isn't necessary to cook too much as the bacteria should only be on the outside, but I'd rather be safe than sorry. Ground beef needs to be cooked until there's no pink since you can't be sure what has picked up bacteria.

That is just some of what I read. My only question is - why do they implant 2 different (cord blood) immune systems in Efdee's transplant. Why not only use one? Wouldnt the one reject the other - why do they implant 2 different immune systems back into you?

Ashley
The benefit of using two cords is the increased volume of stem cells. Harvesting umbilical cord blood only yields around 75ml. One of the cords will be partially inherited, "winning out" over the other, and the other will just provide additional stem cells. The transplants can be done with one cord, which is done if multiple matches cannot be found, but having two is ideal.


Thanks for the comments and questions, everyone.

I ran across some interesting videos I meant to post earlier. They're parts of a public lecture by Dr. Burt about stem cell transplants and how he got started with them. Part 2 and 3 are on the sidebar.

http://www.youtube.com/watch?v=s3TgPFy1Ozo
 
Effdee,

Thank you for explaining why they try to use 2 different cord bloods in the transplant. Got it:) Also, wanted to say that I have seen the video you posted on Dr. Burt before, and I just watched it again. It is just such a pity that most members are going to miss this, unless they log into your thread specifically - it is so interesting! Next time you post, would you mind sharing how you are feeling? Have you noticed improvement in your symptoms yet or is it too early to tell? THank you for your time.
 
Hi Effdee,


I've only just found this thread but just wanted to say I'm glad everything going ok for you and thanks for posting about it, it's been an interesting read!

Rachel x
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Thanks Patrick! When was the last time (pre-transplant) your blood numbers looked good? May it continue for life!
 
That would depend on your definition of "good." It's been about a year since I was first anemic from that flare up, and my HGB was going down in the months before. Probably late '09 early 2010 for completely normal/good counts.
 
Thats great about the labs looking good. Hopefully you won't have to wait too long for the chimerism results, take care of that sore throat. can't wait to see those lovely locks.

Gwen xxx
 
Location
CT, USA
Just read your whole blog. Thank you for taking the time to document your journey. I hope you continue to do well and live a symptom free life!

I'm staying tuned for updates. :)
 
Man that sucks that you got C-diff. Good to hear that there was a reason for your symptoms though. Lets get over that C-diff, and onto recovery!! :)
 
Thanks! I'd honestly take C diff symptoms over a cold. It hasn't bothered me too much. I'm feeling quite a bit better already.
 

DustyKat

Super Moderator
I so hope things continue to improve for you Patrick and the C Diff becomes a distant memory!

Fingers, toes and everything else crossed!...:goodluck:

You certainly are an inspirational young man and a wonderful role model. :thumleft:

Thinking of you...:hug:
Dusty. xxx
 

DustyKat

Super Moderator
Sorry to hear the C Diff is still hanging on for dear life...:thumbdown:...but fab news about the labs! :thumleft:

Any thoughts yourself on what they may decide?

Dusty. xxx
 
See Here: http://www.scientificamerican.com/article.cfm?id=swapping-germs

This may be an option, not only for C. Difficile possibly, if you find a receptive doctor, or can find a trial to get involved in...I don't know how one goes about enlisting, though. The article came out this week describing this slightly disturbing treatment...you gotta do what you gotta do, I guess.

I've seen a few articles over the past few years concerning this, just google/startpage: fecal transplants, fecal bacteriotherapy or fecal flora reconstitution. Seems simple yet disgusting enough. Good luck, anyway.
 
Good to hear Patrick!

Btw (I hope Burt doesn't read this lol) but i decided not to take any antibiotics when I was discharge from my transplant. I was supposed to take 3 different kinds for 6 months. Oops! lol



Edit: btw that is very dangerous, im not advising anyone do that. I knowingly took a risk there.
 
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