Topic: My transplant story

I posted this in the introduction section but was asked to post my story here also.  I've added a few details here regarding my transplant. 


Hello all!  My name is Rachael; I'm 28 years old.   On Aug 6th 2010, I was diagnosed with cholangiocarcinoma.  I found a wonderful surgeon, Dr. Marvin, at Jewish Hospital who was willing to take a chance on me and perform a liver resection.  On Aug 12th,  my 9cm tumor and 70% of my liver were removed.  The surgery was proclaimed a success and for a few days, everyone was very optimistic.  Unfortunately, my portal vein clotted and my remaining liver began to fail.  Several surgeries were performed to try to fix the problem but they were unsuccessful.  By some stroke of luck,  UCLA was contacted and  Dr. Busetill agreed to take me as transplant candidate.  On Aug 23, I was flown while on advanced life support to CA.   On Aug 25th, I received my new liver.  I had several more surgeries to correct some portal vein issues and hematomas.  In total, I had 16 surgeries and spent more than 3 weeks in the ICU much of the time on advanced life support.  After I left the hospital, I spent another 6 weeks in CA and was finally able to return home on Nov 10th.   Originally, I was supposed to undergo chemo but after much discussion and thought, it was determined to pose more risk than benefit. 
If anyone has any questions at all, please feel free to ask!!

Re: My transplant story

Dear Rach, you are one amazing woman! I am speechless! Please do tell us how you are doing now.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My transplant story

Bumped for Cathy. 

Update:  In Oct 2012, I experienced some RUQ pain.  My tx coordinator ordered a CT scan and a spot was discovered in my native bile duct.  Two ERCPs later, it was determined that my CCA was back.  I ended up having a Whipple on Oct 24, 2012 in Louisville. i had some complications and ended up back in CA at UCLA.  I ended up staying in CA for another 3 months and returned home in January.

Re: My transplant story

Thank you, Rachael for bringing your unusual and highly successful story back for review.  It has been a few years now - how are you feeling health wise? 
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My transplant story

Rachael thanks for sharing!! I am a CC survivor due to transplants, like I mentioned before. My story is very similar, I ended up on life support a month after first transplant because my hepatic artery ruptured. So I am very interested in your story, the meds you take, etc... And very interested in that you said it returned?? I was 4 years cancer free on last Friday. I had a spot on my lung last year that my doctors wanted remove and there reason was "we have no data to compare this to because your success is new and we don't want to take any chance" My miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO.
Can't wait to hear more.
Lots of prayers-Cathy jrdunnagan@gmail.com

Re: My transplant story

Marion and Cathy-
Since my reoccurrence in Oct and the subsequent Whipple, I've had some complications.  I have no hepatic artery; the only blood flow to my liver is collateral from my Roux-en-y.  I'm relisted for tx with a Meld of 8.  The left lobe of my liver is necrotic but the right lobe seems to be working properly.  Labs are decent and mostly within normal range. 
Day to day life post tx was basically normal but some things have changed post Whipple.  I don't know if it is the necrotic liver, after effects of surgery, getting older, etc.  but I tire more easily and it takes me longer to recover.  Eating is different and I'm much more sensitive to food than I used to be. 
That being said, I'm alive and fairly well.  I have a 4 yr old who most days I can keep up.  I even "coached" her spring soccer team. 

As far as meds, I'm on prograf, prednisone, protonix, Coumadin, ursodiol, mag + protein, mag oxide, fish oil, and a multivitamin.

Cathy- what meds are you on?  Did they remove the spot on your lung?  How big was it?  Mine was only 3mm.  What is your protocol now?

Happy Wednesday!
Rach

Re: My transplant story

Rach-I am doing great!! My meds are pretty easy/breezy now!! I take 6  prografs a day, nexium, calcium, multivitamin, vitaminD, and magnesium a day. So really only 2 prescriptions which is financially better, still pretty good financial strain, but they keep you alive so who cares!!
Have you had a problem with CMV?? I had contracted CMV about 9 months after second transplant and I was sicker from that than any transplant, chemo or radiation!! I do blood draws every month and scans every 6 months. I also have a hernia the size of a grapefruit but surgery isn't an option, the only surgery they ever want to do on me has to be life saving!!. I guess no facelift or tummy tuck LOL!!! The middle part of my torso is pretty crazy looking between my transplants scars and hernia but I am awfully proud of it!!!
I did have my lung spot  removed and it is was benign, but my 2 week recovery period was about 3 months!! I still don't have the stamina I use to have but I do just fine. I am blessed that I can work at my own pace since my child is grown and life is pretty simple for me.
I am so excited to meet another CC transplant member. Keep posting so people can be inspired and educated that transplant is a viable option that hopefully more will be included in!!
I think I HOPE that your MELD score stays low (mine started at 29 and was 37 when I was transplanted first time).
I HOPE Pam reads our post and it brings her inspiration and comfort as she waits for Lauren to get better. We are proof that miracles happen and bad times do end GREAT!!
Lots of prayers and call (618-567-3247) anytime!
Cathy

Re: My transplant story

Rachael and Cathy, I am so inspired by both of you! Thank you.  My husband is on the Mayo protocol for a liver transplant - he has a hilar cholangiocarcinoma that is non resectable.  He was diagnosed in July.  There are so few people that get this transplant that it's difficult to know how successful it is.  Thank you so much for giving us hope!

Tanya

Re: My transplant story

TanyaLee-Welcome and sorry you had to find us!! Also thank you for adding another name to those getting a transplant, we are a very blessed group. I am sure our latest transplant success story Tiffany will be welcoming you soon. It is hard to post that transplant is our one chance to be cured of CC, but to post that is so unfair to those not meeting the critera, but I would not be here if couldn't have a transplant. I am alive because of God, 2 strangers, and Dr. William Chapman. 
Lots of prayers and HOPE-Cathy
(I sent you and email)