I quoted Dexky saying happy birthday to Patrick's immune system, then essentially said "Ditto!" because I thought it was nice and well said.whats "haha this" ???????????????????????????
I quoted Dexky saying happy birthday to Patrick's immune system, then essentially said "Ditto!" because I thought it was nice and well said.whats "haha this" ???????????????????????????
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.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!
Dr. Burt and his staff sounds so amazing. You are obviously in great hands.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
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.Ziggy,
Things still going great for you? Still crohn's free? Still no meds?
Amen, Kathy!!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.
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.Thanks Patrick! Do you have any diet restrictions?
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...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.
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.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
What's the reasoning behind no rare beef?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.
It didn't dawn on me until you mentioned this that they're creating a chimera immune system. AMAZING!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.
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.What's the reasoning behind no rare beef?
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.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
Cytoxan is carcinogenic, so it increases the risk of cancer. As far as day to day side effects, I haven't felt any since being in the hospital. I tolerated it all really well.Effdee, does the chemo have any lasting side effects on you?