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Tiffany
@tiffanyandrews

Posts: 8
Joined: Jan 11, 2015

Diagnosed with Primary Biliary Cirrhosis 5 yrs ago. Itching constantly

Posted by @tiffanyandrews, Jan 11, 2015

I was diagnosed with Primary Biliary Cirrhosis 5 yrs ago i have been going downhill lately I itch constantly and can’t get enough sleep im just so tired. Well my doctor told i wouldn’t be able to get a transplant from a living donor which will make my time on the transplant listwhen that time comes even longer does anyone know if this is true or should I start getting my family tested for compatability

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Rosemary, Volunteer Mentor
@rosemarya

Posts: 962
Joined: Aug 30, 2011
Posted by @rosemarya, Jan 11, 2015

Tiffany, there is an itch relief lotion brand, SARNA, that gave me some relief from the itching. I also found a bath powder by Aveeno of colloidal oatmeal that you sprinkle in bath water that helped, also. My doc also gave me a prescription (name?) for a bile-binder that I mixed in water and drank.
Are you on the transplant list? I do know that the sicker the patient, the greater the need for a transplant. And the patient in most need gets priority for a donated organ if there is a match. Your doctor should be able to answer your questions about living donor situation. Hang in there Tiffany and stay as healthy as you can.
Rosemary – liver/kidney 2009


Tiffany
@tiffanyandrews

Posts: 8
Joined: Jan 11, 2015
Posted by @tiffanyandrews, Jan 11, 2015

Thank you for those suggestions i will have to try them i am not on the list yet but I am going downhill thats why i was asking about the living donor because my doctor said with primary biliary cirrhosis I wouldn’t be a candidate for a living donor and i was just wondering if anyone else had come across this same situation my doctor was very vague on why i couldn’t use a live donor and just didn’t want to discuss that road at all every time I asked questions he’d just say its not possible and move on with no real explanation which was very upsetting so thats why i was wondering if anyone else might know why


Bob Butler
@bobbutler

Posts: 1
Joined: Jan 12, 2015
Posted by @bobbutler, Jan 12, 2015

Tiffany, itching has been my nightmare . Sarna works pretty good. Sometime back I got a cortisone shot and slept better then ever. My liver team are not crazy about it but it worked perfectly. I don’t know why you can’t get a living donor. I hear that deceased donors are hard to get. Good luck.


Tiffany
@tiffanyandrews

Posts: 8
Joined: Jan 11, 2015
Posted by @tiffanyandrews, Jan 12, 2015

Thank you Bob they won’t give me cortisone but i will try sarna


Rosemary, Volunteer Mentor
@rosemarya

Posts: 962
Joined: Aug 30, 2011
Posted by @rosemarya, Jan 19, 2015

Tiffany, I am happy that you will have a liver appointment later this month. I feel that a GI or a liver specialist will be able to answer your questions. Sometimes liver diseases can be difficult to diagnose accurately by someone without the highly specific training. I know this happened to me (primary care-GI-GI/liver specialty-liver transplant dept). I did learn that even if 2 people have the same disease, they can exhibit different symptoms, and each needs individualized treatment. It can be confusing and frustrating at times. Take a list of your questions and take someone with you to your appointment. You may need further testing to figure what is going on.
I suggest that you look up topics like liver diseases/liver transplant at respected resources like Mayo, Transplant living, WebMD, etc to learn what you can expect. For almost 10 years, I had well-meaning friends and relatives trying to ‘cure’ me. I chose to listen to my doctors instead, and I followed their instructions exactly. I am 66 and I received my transplant in 2009. I am in better health and more active than many people half my age!
I’m hoping for the best for you.
Rosemary

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Tiffany
@tiffanyandrews

Posts: 8
Joined: Jan 11, 2015
Posted by @tiffanyandrews, Jan 19, 2015

I’ve been seeing this GI dr for three years now this is just my normal three month visit to go over all my levels. We know I have primary biliary cirrosis I’ve had all the biopsies and have had a definitive diagnosis for three yrs now I just don’t feel he is very knowledgeable about this subject but being on medicaid its hard to get referrals to go through to some specialists because they aren’t in our town/county although I live in a decent size town with two hospitals they have GI drs but no one that really specializes in the liver

Liked by Deena


Tiffany
@tiffanyandrews

Posts: 8
Joined: Jan 11, 2015
Posted by @tiffanyandrews, Jan 19, 2015

I am so glad you are doing so much better that gives me hope thanks for everything


Rosemary, Volunteer Mentor
@rosemarya

Posts: 962
Joined: Aug 30, 2011
Posted by @rosemarya, Jan 19, 2015

Sounds like you are doing what I did for years. Every 3 months to my GI. I was only seen by the liv. specialist when my GI needed to get confirmation on my disease. (PSC) I do not know about the Medicaid coverage thing. My GI knew when I needed to be referred for more intense treatment, though. Tiffany, sometimes, side effects can be treated. My girlfriend has PBC and she, too, is on 3 month monitoring. She also takes a drug called URSO.
Rosemary


Tiffany
@tiffanyandrews

Posts: 8
Joined: Jan 11, 2015
Posted by @tiffanyandrews, Jan 19, 2015

Yes I’ve been on Ursodiol for three yrs


Deena
@mrsdeecee

Posts: 110
Joined: Jan 19, 2015
Posted by @mrsdeecee, Jan 19, 2015

Rosemary, great post,gteat advise, I use pub med central and NIH,I WENT TO EASTERN WESTERN MED SCHOOL SO I DO UNDERSTAND MEDICAL LATIN ,HAD TO DROP OUT BECAUSE OF BROKEN LEG ACTUALLY WHEN THE CAST CAME OFF,WHERE DID YOU GET YOUR TRANSPLANT? I AM VERY HAPPY FOR YOU, I FLY FROM FL TO NYC TO SEE DRS.SLOAN WAS CONVINCED I HAD PANCREATIC CANCER I WAS SO SCAD,ALSO HAVE FOUND GI DRS ARE MORE VERSED IN PANCREAS THAN LIVERS YOU LUCKED OUT WITH DRS,I GO THROUGH SLOAN,NY PRESBYTERIAN. CORNEL AND COLUMBIA,I AM TIRED OF DOING DRS WORK , ACTUALLY HAD TO TELL THEM WHAT TEST TO RUN AND READ THE RESULTS BACK TO THEM,I REALLY COULD USE YOUR HELP. BESIDES PBS,I HAVE AUTOIMMUNE HEP DILATIONS OF INTRA AND EXTRA HEP DUCTS AND ATROPHY OF PANCREATIC TAIL LAST WEEK A DR TOLD ME THATS NOTHING TO WORRY ABOUT?? Liver ENZYMES are out of control, keep climbing seems my Drs concerns are pancreatic it got scared during an EUS.YOU CAN LIVE WITH OUT A PANCREAS WOULD MAKE ME TYPE 1 DIABETIC BUT CAN NOT LIVE WITH OUT A LIVER,GIVE IT TO ME STRAIGHT, I RESPECT YOUR OPINION WANT A EMAIL ,I DONT THINK TIFF WOULD MIND IFF YOU POSTED IT HERE ALSO HAVE MUCUS AND BACTERIA STRANDS IN MY BLOOD,FELT BETTER WITH HOLISTIC MEDS IM RUNNING OUT I STARTED GAINING WEIGHT AND DIGESTING PROPERLY FELT LIKE I WAS GETTING SOMETHING OUT OF FOOD BEEN MALNUTRITION FOR YEARS BECAUSE I RAN OUT OF CERTAIN LIVER PILLS I AM WEAK AGAIN VERY PRICEY,GOING TO THE SCHOOL FOR EASTERN WESTERN MEDICAL HOLISTIC MEDS WILL BE REASONABLE DID YOU HAVE CHRONIC FATIGUE BEFORE TRANS PLANT THANKS DEENA


Tiffany
@tiffanyandrews

Posts: 8
Joined: Jan 11, 2015
Posted by @tiffanyandrews, Jan 19, 2015

Feel free to post on this thread I don’t mind at all


Deena
@mrsdeecee

Posts: 110
Joined: Jan 19, 2015
Posted by @mrsdeecee, Jan 19, 2015

Tiff it\’s DEENA MY EMAIL,HOW IS THE URISOLWORKING FOR YOU,I AM SEEING A REG
DR IN AM,HOW MUCH MG A DAY I AM.5\’4 ABOUT 105 IBS DOES IT MAKE YOU FEEL
BETTER AND HOW FORGOT TIRED PLEASE LET ME KNOW


Tom Papageorge
@teddy6895

Posts: 1
Joined: Jul 26, 2015
Posted by @teddy6895, Jul 26, 2015

Holistic and diet and the Lord for me. I stopped taking almost all meds and will stop all of them within two years. Good Luck. Tom


Deena
@mrsdeecee

Posts: 110
Joined: Jan 19, 2015
Posted by @mrsdeecee, Jul 26, 2015

Tom, I am with you,No more testing for me .Took Drs 6 years to realize I
had a stone in my pancreas and did permanent damage to bile ducts and
pancreas, also my liver enzymes are out of control. God Bless you I have
studied eastern and western medicine,I am a firm believer of holistic
approach Also includes yoga or tai chi,meditation and diet . What is your
diagnosis? Maybe we could help one another,Just moved need to find a new
holistic store ,when I was taken all the holistic meds I did in fact have
energy and felt much better keep in touch I can give you my email have
holistic books with diet and supplements be glad to help might go back to
the clinic @ med school I attended Deena


Deena
@mrsdeecee

Posts: 110
Joined: Jan 19, 2015
Posted by @mrsdeecee, Jul 30, 2016

I can go to bed with a smile so hapoy you had a transplant Do you feel well after the transplant how about today ? No more fatique I will read it tomorrow bless you and your new life !!! Dee

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