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08-05-2012, 09:43 AM   #1
jmcbrid2
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Stem cell transplant journey beginning

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!
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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
08-05-2012, 05:52 PM   #2
Moe.
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Good luck. Hope it goes well.
Are you doing the donor stem cell transplant?
08-05-2012, 05:57 PM   #3
chrisnsteph1022
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Oh wow. Excited to follow your journey! Good luck!
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08-06-2012, 08:51 AM   #4
jmcbrid2
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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!
08-06-2012, 09:10 AM   #5
David
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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!
08-06-2012, 09:14 AM   #6
KayleighMeek
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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
08-06-2012, 10:52 AM   #7
deb123
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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
08-06-2012, 10:59 AM   #8
Clash
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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!
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08-06-2012, 05:19 PM   #9
effdee
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Best of luck, Jenn! I'm really excited for you. Feel free to get in touch again if you want!
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08-06-2012, 06:25 PM   #10
SherryLynn
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Im excited to follow your journey, thanks for sharing!
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08-06-2012, 09:52 PM   #11
jmcbrid2
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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.
08-07-2012, 02:39 AM   #12
Moe.
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Hope your going to be all okay.
You've got so little left to go.
08-07-2012, 09:35 AM   #13
jmcbrid2
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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!!
08-07-2012, 10:31 AM   #14
Moe.
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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.
08-07-2012, 10:49 AM   #15
jmcbrid2
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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!
08-07-2012, 12:13 PM   #16
chrisnsteph1022
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Ugh. Sorry to hear about the dental issues. I hope they can get them cleared up quickly!
08-07-2012, 02:53 PM   #17
Gwen pippy
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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
08-08-2012, 09:32 AM   #18
Avw
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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
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Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Remicade,
Humira,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
Prednisone 10 mg
Flagyl 1000 mg
Entocort
Protonix
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
08-09-2012, 12:09 AM   #19
jmcbrid2
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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!
08-09-2012, 12:37 AM   #20
Moe.
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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
08-09-2012, 12:46 AM   #21
Avw
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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!
08-09-2012, 04:47 AM   #22
jmcbrid2
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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

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
08-09-2012, 05:26 AM   #23
Moe.
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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.
08-09-2012, 06:25 PM   #24
jmcbrid2
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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
08-09-2012, 08:15 PM   #25
Moe.
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Congrats congrats.
Real happy for you that it went through.
2 more months and I'll be crohn free
08-09-2012, 10:21 PM   #26
SherryLynn
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wow that is fantastic news for you!
08-09-2012, 11:06 PM   #27
Avw
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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?
08-10-2012, 10:38 AM   #28
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Thats great! I am too waiting for a stem cell transplant. Wish you all the best!
08-10-2012, 11:16 AM   #29
jmcbrid2
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Yep just a few more weeks. I just got out of my endoscopy. Still out of it. Waiting to see the dr now
08-10-2012, 11:18 AM   #30
jmcbrid2
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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
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