Stem cell transplant journey beginning

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jmcbrid2

jmcbrid2

Joined
Mar 10, 2012
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I am officially starting my stem cell transplant process tomorrow. I want to share as much info as possible with everyone so please ask as many questions as you want!!

I just got to Chicago today. I'm exhausted and in a lot of pain and to top it off my wisdom teeth are killing me. My sister is with me since she is my stem cell donor. I'm having tons of pre transplant testing tomorrow. I will update you as I go through it!
 
I just did a pulmonary function test to check for bronchitis, asthma, etc. it went well. I'm now getting an echocardiogram. I will also be having a chest X-ray, EKG, labs, and an appointment with Dr Barrett, the GI doctor.

Ive been getting very dizzy lately. My blood pressure is normally low but is now sky high and my heart rate is up. The nurse doing the pulmonary function said it was anxiety. But I'm going to mention it to the doctor to be safe. And my wisdom teeth are killing me. Something else I'm planning on mentioning.

Tomorrow I am scheduled for an MRI and appointment with Dr Burt's nurse. Wednesday I'm having an appointment with Dr Burt to go over all the test results, etc.

My sister is my donor, however she has IBS. IBS isn't an immune disorder so it shouldn't be an issue but she is having to go through extensive testing to make 100% sure it's not Crohns. This week she is having labs, an MRI, an EKG, a chest X-ray, vein check, colonoscopy, and appointments with Dr Barrett and Dr Burt. If all goes well, we will fly home, she will take self injections of neupogen(probably didn't spell that right) from August 20-23 and will have her stem cells harvested through her blood via a vein in the neck August 23 and I will be admitted for my stem cell transplant on September 4, 2012.

If there are no complications, the transplant should only take 3-4 weeks and I should be home by the end of September. I will start chemo on September 4, 2012. After 8 days of chemo, they will bring in the stem cells. I will then be monitored for their regrafting for 10 says. Then within a few days following, I can go home. I will have to watch where I go and who I'm around for about 6 months. My new immune system should be up and running no longer than a year and they should be able to determine if it was a "success": the donor cells are showing up in my body. However, the donor cells don't have to present for me to be feeling normal again(if I can even remember what that is...) but it will indicate that the Crohns will give me issues again in the future. However, I will be able to start the medications again and they'll actually work because I won't have the antibodies against them in my body anymore. I have so much faith that God is going to make this work for me. How else would it be working out so perfectly? I mean my insurance approved all costs first time and with only a 25% chance my sis could have been a match, she was! And the insurance is paying for her part too! And we got all the donations we needed to cover traveling expenses! You can't deny that it's meant to be!
 
I'm really excited for you! I'll be watching and rooting for you :) I'm also adding your thread to the stem cell thread so others can watch. Thank you for keeping it updated and good luck!
 
I find this treatment option so interesting and I really hope it works out for you. I will be keeping my fingers crossed for you. Please keep us updated x
 
Fantastic news! I shall watch your posts with great interest, and excitement. I wish you the best wishes in the world, and hope that it works for you and for all of us who suffer from this pain in the ass disease.

All the best

Deb
 
Such great news that everything seems to be falling in place for this transplant to happen! I hope it all works out for you!!! Sending prayers your way for this treatment to do the job! I, too will be excitedly awaiting your posts!
 
Ok so I saw Dr Barrett today. My sister is anemic so they're doing a ct scan on her tomorrow to be sure there's not a sneaky version of Crohns in her system. I hope not. If there is, I'll have to go on a donor list. I talked to him about my dizziness and he said he thought it was all the medications im on. The whole time I was in the appointment I was having hot flashes and throwing up blood.

I've been throwing up blood for 2 months and have been the ER back home 4 times and my local GI. The hospital did blood work and kept telling me it's probably a bleeding ulcer but my labs were fine so they put me on Prilosec and sent me home every time even though I knew I was losing too much blood between that and the intestinal bleeding. I just had a blood transfusion in October 2011 because my hemoglobin was a 6. I knew something wasn't right this time and no one listened. Turns out they were doing the wrong test!! It's only an 8! Seriously?! And he tested for c diff. Even though I tested negative at home, he wants to do a more sensitive test so I should know by tomorrow.

My wisdom teeth are cutting in bad. I can barely eat from the pain. Dr Barrett said if its abcessed they'll cancel the transplant until I have them cut out. He looked in my mouth and said they don't look infected, just like theyre coming in. He said they may cut my gums to allow them to grow in. He set me up with a dentist appointment in the morning and is going to argue to my insurance that it's a pre transplant expense since I don't have dental coverage. Pray it's not infected. I'm so ready for this transplant. I'm so tired of fighting so hard.

I have the dentist appointment, MRI and an appointment with Dr Burt's nurse tomorrow.
 
Well I have 8 sudden cavities after never having a single one in my life. And inflamed gums and I have to have my wisdom teeth removed ASAP. Good news is it won't affect my transplant whatsoever! But I may have to stay in Chicago or come back next week. Very frustrating. The dentist is talking to the oral surgeon now about scheduling. Cross your fingers!!
 
That is some pain your going through.
Just remember although you feel like your getting jabbed in the mouth.
Same time your jabbing one to the crohns ;).
Its good that its not going to affect your transplant.
 
So I do have infected wisdom teeth. It still won't affect my transplant though. They are putting me on antibiotics for a week and cutting them out next week. Frustrating but better than it messing up my transplant! About to meet with dr burts nurse and then it's off to the MRI. I may not post again until tomorrow since this will probably have me pretty sick!
 
Good luck honey, very excited to hear your news, I will say a prayer those bold wisdom teeth behave. keep us posted as much as you can.
Gwen xxxxx
 
Hi, I just found your thread and wanted to say a quick 'YOU GO GIRL' for getting everything going so quickly, getting your insurance approval, getting your donor match, and getting past all the hiccups! I am scheduled for my evaluation with Dr. Burt on September 10 and am staying for some pre-testing, also bringing my brother in hopes that he will be my donor.

Best of luck to you in the coming days/weeks... You will be better than new in no time! Message me anytime you want to talk... I'd love to hear from you and hear all the gory details LOL! Talk to you later!

-Ally
 
So I had the MRI and it turns out me in tight spaces equals panic attack. Bad news. I met with Dr Burt's nurse yesterday and she said there was some kind of mistake and even though my insurance gave the hospital an approval code, it wasn't actually approved. Then not even a minute later she gets a call saying Tricare went ahead and approved it and it's a go. Then I go to my appointment today with Dr burt... They lied again and they decided not to approve it even though they sent the nurse an approval code and an approval email. So as of now, the transplant is canceled. I'm at a loss. I'm a wreck. I need this so bad and now I don't know what I'll do. Please pray!
 
Im from the other side of the world. Could you explain
How can u be turned down by ur insurance.
I feel awful for you. But isn't there some way to get
What your after?
There toying with ur life by doing this.
I do not know ur insurance conditions but I'm sure lots of
Insurance companies won't accept a 125000 quote.
You need to bash em through the phone
 
Oh my God! I hate insurance companies so much!! I would be at a total loss right now. Just sit tight though. From what I hear Dr. Burt's team is AMAZING with the insurance stuff. It will get worked out! Just hang in there!
 
Moe. said:
Im from the other side of the world. Could you explain
How can u be turned down by ur insurance.
I feel awful for you. But isn't there some way to get
What your after?
There toying with ur life by doing this.
I do not know ur insurance conditions but I'm sure lots of
Insurance companies won't accept a 125000 quote.
You need to bash em through the phone
Click to expand...


We do not have universal health care yet. Our president is putting it in to croon now and my insurance is through my husband. He is in the military. And unfortunately military insurance here sucks sometimes. When they approved it, they thought they were approving a conventional, less expensive Crohns treatment. Then after I started the testing, they realized it was a stem cell transplant and cost more than they anticipated so they backed out. Or at least that's what Dr Burt's nurse thinks happened. I'm so scared and stressed. It IS my life they're playing with. It's money to them, it's survival to me. The doctors have already said if something doesn't happen soon, I'm either going to die from complications and staying so sick and malnourished or I will develop colon cancer and die (they're so blunt with me lol). It's really unethical what they're doing here
 
I hope it gets resolved soon.
Just hang in there. The nurse will get back to you
Soon right?
I sure hope so. Very unethical.
I'm sorry for all the pain ur going through.
 
CookieDr Burt just called. My insurance didn't approve it but the hospital is taking full responsibility and paying for the transplant. I think it's bc I'm the first Crohns patient with my siblings cells and it's crucial for the research and that reflects on the hospital
 
Congrats congrats.
Real happy for you that it went through.
2 more months and I'll be crohn free
 
That is AMAZING! Congrats!! I knew his team was good... but not that good!! So you have a two week wait until you return for the actual transplant process to begin right?
 
Yep just a few more weeks. I just got out of my endoscopy. Still out of it. Waiting to see the dr now
 
Oh forgot to mention I've been vomiting blood for over a month and now I'm having black coffe ground stools and fevers etc. so I was admitted at Northwestern in Chicago last night. Had an endoscopy this morning...waiting for results
 
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!!
 
CrohnsMonkey said:
That's good news that ur sister qualified. How would I get enrolled into a transplant program?
Click to expand...

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
 
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.
 
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.
 
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.
 
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!
 
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
 
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 :)
 
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
 
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!!
 
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!!
 
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.
 
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.
 
Day -8

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!
 
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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!!
 
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
 
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.
 
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.
 
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.
 
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
 
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 :)
 
Hi jmcbrid2, I was wondering what are your chances of getting graft vs host disease following the transplant? What did the doc tell you?
 
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!:dance:
 
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
 
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!!
 
I am so sorry I haven't updated recently. Ever since the day before my transplant day, I was feeling so weak and nauseas and in a good bit of abdominal pain. The pain meds I had been getting were making me worse. So when I realized that, I had them take me off everything but Norco which helps a lot more.

The day before my transfusion, I started getting these bad abdominal cramps and I'd sit on the toilet for forever in writhing pain and nothing would come out. This has continued. They gave me a laxative for the first time the other day. And now, while its still sooo very painful, it's regulating to once or twice a day. The nausea is getting much better and I'm able to sleep again.

Day 0: September 13, 2012 10:18am I had my 2nd birthday. They brought the cells in Luke something from a movie, steam and all lol they blessed the cells (my choice) and started the infusion. They came in a small bag that looked like blood. The second they went in I tasted creamed corn, started breathing heavy and started vomiting through the entire thing. But Dr Burt was in the room with me and in 30min it was all done. I was pretty suck for the next two days but I'm gradually getting better.

It's now Day 5 and I'm full of energy with the occasional pain and nausea and a few other issues...needed 2 blood transfusions, one platelet transfusion, a couple bad fevers, and I have a lot of blood in my urine. So they're monitoring me and as soon as my counts go up, I go home!! Yay!! Just be praying this really works and I'm gonna be better than I can remember being!
 
Wow, Jenn, sounds brutal :-( You are one tough cookie! Emma and I are keeping you in our prayers!
 
My memory loss is getting a little better. But I was getting to the point I couldn't remember my own name or where I was or what we were talking about. Very scary. And now my hairs starting to come out
 
From what I understand after reading a lot of medical research on stem cell transplants I understand that it is supposed to be really tough; so hang in there and you will be alright. Best of luck! :)
 
I shaved my hair off today. It wasn't as emotional as I anticipated. I'm coping well. The pain has been better today. Lots of diarrhea last night with soooo much pain but today has been much more manageable. They switched my picc line because they suspected an infection in it. They're doing stool tests now for more research as to where this infection is coming from. I'm on tons of antibiotics still that will cover all areas of my body. I'm taking two neupogen shots a day to increase my white blood cells.

The doctor says I'm doing really well an they expect discharge this week. My appetite is still crummy but I get like that in hospitals. I eat better at home. But my Crohns symptoms seem better. I feel like I'm feeling more of the transplant side effects right now. But time will tell !
 
My counts are finally going up and I should be going home soon! I feel better and I've already eaten twice today!!! Yay!!! Dr Burt said everything looks good and when he pressed on my belly...no pain!!! I'm still weak as can be expected but I do see a difference already. Praying this continues to get better!

Also I haven't used the bathroom in the last day but when I try only blood comes out, Dr Burt says its common in Crohns patients of his. It's almost like the body is expulsing the disease from my body! Praying thats true!
 
The pictures don't seem to be showing up for me. I'm so glad you seem to be on the road to recovery and continue to progress.
 
Well I was hoping to go home today but I'm not quite there yet. We will see about tomorrow. My platelets are right where they need to be to go home but they want to be sure they're continuing to rise before sending me home. Plus my white cell counts are at 0.8 and they need to be at 1.0. I'm taking neupogen shots still so they should be up in the next couple of days.

I've barely had any nausea or pain. I'm only using the bathroom a couple times a day. It's loose but they said its most likely because of all the anti rejection and anti viral meds. I feel good. I'm just exhausted. My body has been put through the ringer and I'm feeling it. I think once I'm home with my family in my own house and in my own bed, I'm going to feel amazing!

Amy, Dr Burt's nurse, just discussed my discharge instructions with me which is exciting because it means I'm almost done and I've made it through!

On a different note, my blog was featured on Healthline.com's Top 11 Crohns Blogs of 2012! How exciting!! They specifically mentioned my positive outlook despite my condition and that seriously brought tears to my eyes. I knew I was going through this for a higher purpose of reaching others and that confirmed it for me! That made all of my struggles worth it because someone is reading and someone is getting something from it. God is so good!
 
Unfortunately my counts dropped slightly so I'm here another day but dr burt is allowing me to go to the cafeteria in the hospital to help with my cabin fever. That's nice
 
Hurahhh! out of the four walls! I know you'll be ready for real fresh air when you do finally get to leave. *lifting a protien drink to toast higher counts tomorrow*

Auntie em
 
Ok everyone! Sorry for the delay!! I got home around midnight Friday and I've been battling bad insomnia, ton of pain, and really high blood pressure with blurry vision and dizziness. Not a good weekend. I talked to Dr Burt today and he said the pain should gradually fade with time and to get my weekly bloodwork as normal starting tomorrow morning and we will go from there. I'm pretty sure I'm going to need blood pressure meds since the cyclosporine (anti rejection meds) causes high blood pressure and I can't keep living like this everyday.

Other than that I'm now only using the bathroom a few times a day, which should lessen with time as well. No nausea. No vomiting after every meal. I have a good appetite. No fevers. No bleeding. :)
 
Last edited:
My blood pressure is staying high. It's made me so dizzy and my visions so blurry that I've been throwing up. Dr Burt prescribed me something for my blood pressure. It hasn't kicked in yet or I threw up too close to taking it but really hoping to feel better soon.
 
My heart rate has been high all day and I'm shaky, like jittery. So I called Dr Burt. He's changed my dose of cyclosporine, asked me to cut down on phenergan, and made my blood pressure meds to as needed if my blood pressure is high. Also my magnesium is low so my dose of magnesium oxide has increased. Pain is still bad. It's like a constant sharp pain. The Percocet reduces it but doesn't eliminate it. But atleast my other Crohn's symptoms are better!
 
Do you think any of the heart rate/shaky/jiggery is anxiety? You have been through so much. I take it the sharp pain is abdominal. I guess until the areas heal over they will have pain.(?) Have they given you any indication on how that may go? I'm glad the other symptoms are subsiding. It will make daily functioning so much easier once you are stronger.


Prayers continue,
Auntie Em
 
I don't think it's anxiety especially since I'm on meds for that too lol. As for the pain, it is abdominal pain and they're hoping it'll fade in the next week but I honestly don't see that happening
 
Sometimes you can have continious pain after the transplant for a couple reasons. The chemo does strip the lining of your insides. It takes approx 6 week to grow a new mucosal lining. It is at that point that you should start to feel like things might be improving slowly. You must remember - the transplant has now killed your crohns (theoretically), but your inflamation still needs to come down and heal. Week 5 for me I started turning around. However i also opted to do TPN for a continued 6 weeks post transplant to let my tummy rest while it recovered. So week 6 - 8 typically while eating solids.

Good luck!
 
Well the last couple days I've had bad diarrhea, vomiting, and then a fever. I went to the ER last night. I have a UTI and c diff again. I'm starting antibiotics so hopefully ill feel better soon. My ct scan showed alot of inflammation in my sigmoid colon still so I'm going to talk to Dr Burt tomorrow to see if that's normal or if it means the transplant is unsuccessful. I honestly don't know. I will keep you updated!
 
Oh no :( I'm praying for you. You're such an inspiration to all of us at the crohnsforum.
Hang in there!
 
Effdee also had a c-diff infection during his sct and he is doing just fine(among 3 others that I know of). You have to give your body time to heal(from prior crohns ). No one has ever had a turn around as quick as you're expecting. It's impossible. Hope this puts your mind at rest.
 
It does thank u. I think it just gets me worked up because my family keeps saying well I guess it didn't work. When I feel that it did and I'm still healing. Thanks ziggy!
 
I really think it's great you have others that can share who have been through it. It really has to put your mind and body at ease.

Hugs,
Auntie Em
 
Hang in there, Jenn! I had a couple colds, sinus infections, C. diff, and another GI virus within the first few months of recovering. Between the transplant doing its thing and the slew of meds you're still on, your body is going through a ton. If it's feasible for you, I'd recommend taking a probiotic (I took Culturelle) while you're on the antibiotics. Your gut flora is isn't able to do much to prevent gut viruses, so you're quite susceptible. A probiotic should help out.

Don't get worked up about the CT scan. Stem cells are awesome, but they take time to heal the amount of inflammation you had. It won't be overnight, and it won't be in just a few weeks. It'll be a couple months. You'll gradually notice improvement, but don't dwell on it much until at least your 6 month follow up with Dr. Burt. 99% of my inflammation was gone at 6 months, but I was in a bit better shape. Ask your family to relax, too! There's no instant gratification, but I can say that the wait and other illnesses are well worth it. You will be better, but it's going to take time!
 
effdee said:
Hang in there, Jenn! I had a couple colds, sinus infections, C. diff, and another GI virus within the first few months of recovering. Between the transplant doing its thing and the slew of meds you're still on, your body is going through a ton. If it's feasible for you, I'd recommend taking a probiotic (I took Culturelle) while you're on the antibiotics. Your gut flora is isn't able to do much to prevent gut viruses, so you're quite susceptible. A probiotic should help out.

Don't get worked up about the CT scan. Stem cells are awesome, but they take time to heal the amount of inflammation you had. It won't be overnight, and it won't be in just a few weeks. It'll be a couple months. You'll gradually notice improvement, but don't dwell on it much until at least your 6 month follow up with Dr. Burt. 99% of my inflammation was gone at 6 months, but I was in a bit better shape. Ask your family to relax, too! There's no instant gratification, but I can say that the wait and other illnesses are well worth it. You will be better, but it's going to take time!
Click to expand...

Thank u!! I keep telling my family this, that its a process and that it takes time to heal but they keep telling me it didn't work bc I'm still having problems and the inflammation is still there. I'm going to show them your post. This will help them understand I'm not just making it up as I go along lol. My mom was always wary of the transplant to begin with so she has the hardest time seeing things like this! And aside from the c diff, I CAN tell a difference so now I feel like my feeling that is real and not just optimism :) thank u!!!
 

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