Share Facebook
Crohn's Disease Forum » Treatment » Stem cell transplant journey beginning


View Poll Results: I would like to see how many people read this thread and find it useful?
Read and found useful information 27 100.00%
Read and did not find what I was looking for 0 0%
Voters: 27. You may not vote on this poll

 
08-11-2012, 01:47 AM   #31
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
They couldn't find where my stomach is bleeding so I'm here one more night then they'll check my labs on the morning and go from there. I'll probably get to go on home

Great news: my sis is autoimmune disorder free so it's all a go!!
__________________
Jenn
Crohn's Colitis

Previous meds: Asacol, Colosal, Pentasa, Imuran, Remicade, Humira, Methatrexate, Folic Acid, Iron supplements, probiotics, prednisone, cipro, flagyll, aciphex, vancomycin, lortab, compazine, rowasa, , cimzia, Percocet, phenergan, lomotil, dilaudid, zofranTPN, blood transfusion, no surgeries yet

[COLOR="DarkOrchid"]Current meds: tons of transplant and anxiety and migraine meds

Undergoing stem cell transplant
08-12-2012, 01:48 PM   #32
CrohnsMonkey
New Member
 
Join Date: May 2010
Location: sterling heights, Michigan
That's good news that ur sister qualified. How would I get enrolled into a transplant program?
08-12-2012, 06:42 PM   #33
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
That's good news that ur sister qualified. How would I get enrolled into a transplant program?
You would need to get your local GI to refer you to Dr Richard Burt at Northwestern. They will run tests and do an evaluation and determine your candidacy for the treatment. Please read the beginning of this thread that explains the eligibility requirements. If you don't meet them, don't waste your time because they are very specific. But if you do meet them, ask your doctor to refer you. Look at his profile on the northwestern memorial hospital website
08-13-2012, 06:29 AM   #34
levi
 
levi's Avatar
 
Join Date: Jun 2012
Location: North Carolina
You said you had to have an EKG. I have a condition known as Wolff-Parkinson-White which is two extra electrical pathways in the heart that can cause rapid heartbeat. It bothered me and was diagnosed during high school. This was ina period when I would play basketball and also drink an iced coffee drink every single day. It never bothers me anymore. I can jog 3-4 miles and still not even have an 'episode.' Do you have any idea if this would be the type of thing that would disqualify someone?

I would hope not, especially considering I haven't had an episode of it in over a decade.
08-13-2012, 08:21 AM   #35
effdee
Senior Member
 
Join Date: Oct 2010
levi: For the most part, all of the testing is to make sure you're healthy enough to endure the chemo without any additional risks. It's really to make sure you don't have an infection and that you aren't more prone to possible infections while neutropenic. I'm not familiar with that specific condition, but I hope that helps! Also, you could probably get in touch with Dr. Burt's office and get an answer to that from one of the nurses.
__________________
Stem Cell Transplant Blog
08-16-2012, 12:20 AM   #36
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Ok so I just got home from the hospital. My blood counts are very low and I haven't been eating. I gotta be careful or it's back to tpn for me. I won't post for another week when we go back to Chicago to harvest my sisters stem cells. I need time to rest.
08-16-2012, 12:22 AM   #37
SherryLynn
Senior Member
 
Join Date: Jun 2012
Location: Florida
how do they "harvest the stem cells". I mean is it a blood draw or somthing more complicated?
__________________
Diagnosed 5-28-2012



Sherry
08-16-2012, 12:31 AM   #38
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Nope just a blood draw. They put a catheter in the donors neck and draw blood from basically a dialysis machine which separates the stem cells from the blood. It's a one to two day process but virtually simple!
08-16-2012, 07:42 AM   #39
deb123
Senior Member
 
deb123's Avatar
 
Join Date: May 2012
Location: andover, United Kingdom
Thanks for your posts, i am reading them with great interest, in the hope that i could get treatment in the future.

Take time to rest, and recouperate.

Good luck and best wishes to you
08-16-2012, 08:11 AM   #40
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Even though I won't have updates please feel free to ask any questions you may have! No question is a bad one! I can give you all the info I have to offer
08-16-2012, 08:59 AM   #41
KayleighMeek
Forum Monitor
 
KayleighMeek's Avatar
 
Join Date: Dec 2010
Location: Southampton, United Kingdom

My Support Groups:
Just wanted to let you know I'm thinking of you and all of the horrible things you have been going through. I really hope this gets started soon for you and gives you the releif you desperately need x
08-16-2012, 01:31 PM   #42
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
I've been battling insomnia too for a year and I haven't slept in over 30hrs and I'm exhausted to the point of breaking down in hysterics but I can't sleep. Help. Ugh. I take ambien but I'm having to babysit my nephews, all 3, today with my grandmother and even though I'm exhausted and screaming in pain and throwing up bad, in havin to stay up with the older 2 while my grandmother is napping with the baby. Sooo tired!!
08-23-2012, 02:15 PM   #43
raechel
Senior Member
 
raechel's Avatar
 
Join Date: Jun 2011
Location: Michigan

My Support Groups:
I just found your thread! I hope everything went smooth with your wisdom teeth removal today. Are you going to be updating this thread every step of the way, or your blog? I wanna make sure I head to the best source to stay up to date! Hugs!!
__________________
Diagnosed 2007, 1 resection in dec 2010 (12 inches of illeum and cecum), several abcesses.

Meds I've tried:Stelara, Pentasa, Entocort, Prednisone (over and over again) Remicade, Humira, Flagyl, 6MP, Imuran, Methotrexate.. I'm sure there's more I can't think of...
08-23-2012, 03:04 PM   #44
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Wisdom teeth removed today. Just got out of surgery. They didn sedate me Bc I had to do it alone and bc they needed to do it quick and not with a surgeon. But they ended up having to get a surgeon bc I wasn't numbing completely. I was laying there in tears and almost screaming. I had some bone and fibrous tissue covering the tooth so they had to cut it off too. That was terrible. I'm at the pharmacy getting Narco for the pain. Praying for a pain free and fast recovery.
08-23-2012, 03:09 PM   #45
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Just so everyone knows. Donors have to take shots of neupogen which causes their bodies to produce extra bone marrow. It causes bone pain and can get pretty painful. Then they hook them up to a machine which draws blood from a catheter in their neck and separates the stem cells and puts te blood back in. They pump them with calcium, etc during this. Doing so can cause then to experience pain and a tingly feeling. Thought everyone would like to know a little about the donor experience. I'm gonna have my sister write on here and post about her experience.
08-23-2012, 11:41 PM   #46
SherryLynn
Senior Member
 
Join Date: Jun 2012
Location: Florida
I am really glad your sharing this, thanks
09-05-2012, 02:36 PM   #47
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Just started chemo today. The picc line had problems going in right so that took 3 hrs yesterday. Then I was admitted yesterday evening. Dr Burt came in and gave the ok to start chemo. Today I'm getting a 30min dose of fludarabine. Almost done for the day!

Last edited by jmcbrid2; 09-06-2012 at 01:37 PM.
09-05-2012, 04:08 PM   #48
Lawyerboy
 
Lawyerboy's Avatar
 
Join Date: Aug 2012
Location: Amsterdam, Netherlands
Hope everything goes well for you
09-06-2012, 01:35 PM   #49
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Started a 4 hour course of magnesium today and now I'm on another 30min dose of fludarabine. I'm a little nauseous today. But I feel like its more my normal Crohns nausea. Will keep you all updated!!
09-08-2012, 08:14 PM   #50
Sue-2009
Senior Member
 
Join Date: Nov 2009
Location: Michigan
Well, I applaud you and am thankful. It is just an ugly dibilitating condition. I am a frequent flier here. Keep strong and know we are all here for you. You are a pioneer! God bless! Sue
__________________
Current Meds: Humira, Mercaptorine, Allopurinol, vitamins
09-08-2012, 08:23 PM   #51
KWalker
Moderator
 
KWalker's Avatar
Just wanted to wish you the best of luck and send positive vibes your way. Unfortunately I haven't had first hand experience with stem cell transplants but from what I've read you will be so much better when this is all said and done.

Your friends at the crohnsforum are here for you with all of our support and I personally would like to stick by while you go on this journey.
__________________
Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
09-09-2012, 06:31 PM   #52
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Started cytoxan with the fludarabine, strong steroids, some anti viral meds, and mesna. And they have me something to make me per a lot so the cytoxan doesn't give me bladder issues. I've had to take a lot of Benadryl because my nose was burning and my head was killing me. They also gave me merinol. Which is medicinal marijuana and that helped a lot but made me sleep a lot.
09-09-2012, 06:45 PM   #53
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Day -4

Taking fludarabine, cytoxan, and campath today. Was having a little reaction so they loaded me down with tons of Benadryl and now I feel much better. I can't really eat but my Crohns symptoms seem to be better if not almost gone. They said I'll lose my hair in a couple weeks. And they said my worst days will be these last few days of chemo and the day of transplantation.
09-09-2012, 09:34 PM   #54
ElleMac
New Member
 
Join Date: Sep 2012
Location: Bristol, United Kingdom
I'm so excited to read about someone receiving this treatment. I want to get it, the cost is high but the benefits far outweigh the negative impact. Good luck <3

2
09-11-2012, 12:26 AM   #55
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Day -3

Last day of chemo is tomorrow!! Yay!! I've tolerated it fairly well. They have me on cytoxan and campath today and tomorrow. They kept the cytoxan on a slow trip and loaded me down with Benadryl and I've been doing well. Getting weak but went 2 days with no diarrhea! And minimal pain now! I'm feeling more myself again. Just as soon as I finish this
09-11-2012, 03:03 PM   #56
Lawyerboy
 
Lawyerboy's Avatar
 
Join Date: Aug 2012
Location: Amsterdam, Netherlands
Hi jmcbrid2, I was wondering what are your chances of getting graft vs host disease following the transplant? What did the doc tell you?
09-11-2012, 03:31 PM   #57
raechel
Senior Member
 
raechel's Avatar
 
Join Date: Jun 2011
Location: Michigan

My Support Groups:
One more day of chemo?!? Woooo WHOOOOO!!! :-) You got this girl! So excited that you already feel some crohn's relief even if the chemo is tough... Thanks for posting!
09-11-2012, 09:06 PM   #58
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
Day -2

Counts are dropping like they're supposed to. But I'm starting to get really sick now. I'm also having a blood transfusion today. But today is my last day of chemo
09-11-2012, 09:07 PM   #59
jmcbrid2
Forum Monitor
 
jmcbrid2's Avatar
 
Join Date: Mar 2012
Location: Greenville, South Carolina
I don't know much about the grafting process yet but it seems very safe and less risky with the right medications. That's about all I have to offer today. Maybe once I regain some strength I can post some additional info about that process!! Thanks for asking!!
09-11-2012, 10:42 PM   #60
KWalker
Moderator
 
KWalker's Avatar
Hang in there! You're a strong girl
Reply

Crohn's Disease Forum » Treatment » Stem cell transplant journey beginning
Thread Tools


All times are GMT -5. The time now is 09:01 PM.
Copyright 2006-2017 Crohnsforum.com