1. < Digestive Health

Diagnosed with Primary Biliary Cirrhosis 5 yrs ago. Itching constantly

Posted by Tiffany @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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Tiffany | @tiffanyandrews | Jan 19, 2015
In reply to @rosemarya "Tiffany, I am happy that you will have a liver appointment later this month. I feel..." + (show)
@rosemarya

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

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Deena | @mrsdeecee | Jan 19, 2015

Tiff,Thanks. Rosemary is greati am so tired cant focus like her,She impressed me with PBC,AUTOIMMUNE HEP,CHRONIC HEP,LIVER ENZYMES CLIMBING,ATHROPHY OF PANCREATIC TAIL,NO SUPPORT SYSTEM,MY HUSBAND YELLS AT ME ALLTHE TIME, MY FAMILY IN FLORIDA STEALING FROM ME HAVE TO APOLOGIZE TO MY HUBAND ALL THE TIME BECAUSE I AM SO TIRED LIKE YOU ARE AND BECAUSE OF THE STEALING MY 32 YR OLD NEICE WE WILL HAVE 2 HOMES AND A WATER FRONT PROP TO SELL MY LUFE IS NOT WORTH A HEALTHY LIVER Ttransplant my sister and neice not only stole from my husband and I but will not give me my brother who passed 2 years ago from same as me blood work unless i commit a felony and give her my pain meds for my pancreatic pain,they been stealing my meds also and because of the stress of the crimes against my husband and I it is destoying my marriage also terrible isnt it ,Life is so preprecious, get that transplant and enjoy like Rosemary live each day as if its your last I am going to try to go to yoga in am have a membership have not been there in months,the list goes by your illness and god help you if you need to throw a benifit for bills i can help, think it almost my time unless i get a great holistic Dr,in 2009 diagnosis my self , LIVER CHI STAGNATION .CHI MEANS ENERGY ITS THE DILATIONS OF BILE DUCTS I WASS 100% RIGHT DONT MEAN TO BRING YOU DOWN WAS DOING RESEARCH RIGHT BEFORE YOU ARE GOING TO PULL THROUGH, I CAN FEEL IT I TOLD MY HUSBAND I AM TO WEAK .Remember no matter how grim things appear there is akways some one worse off than you sorry very EMOTIONAL at the moment ,dying to see Rosemarys post to me, I am goibg to try and get ccounselor this week Deena

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Deena | @mrsdeecee | Jan 19, 2015
In reply to @rosemarya "Tiffany, I am happy that you will have a liver appointment later this month. I feel..." + (show)
@rosemarya

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

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SandyHurricaneGirl | @sandykb | May 29, 2015

Tiffany I know the itch can be deep so topical might not help. I have an amazing dr who thinks outside box & put me on Atacand which softens blood vessels making lungs (w/fibrosis so stiffening + is THIS essential issue? w/PBC?) more efficient to move. Ask if could help? Remember Viagra was orig for Pulmonary Hypertension so they hv multiple uses sometimes. Much hope & blessings sent yr way!!!

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4 replies
SandyHurricaneGirl | @sandykb | May 29, 2015
In reply to @sandykb "Tiffany I know the itch can be deep so topical might not help. I have an..." + (show)
@sandykb

Tiffany I know the itch can be deep so topical might not help. I have an amazing dr who thinks outside box & put me on Atacand which softens blood vessels making lungs (w/fibrosis so stiffening + is THIS essential issue? w/PBC?) more efficient to move. Ask if could help? Remember Viagra was orig for Pulmonary Hypertension so they hv multiple uses sometimes. Much hope & blessings sent yr way!!!

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For deep sleep I drink Jamaica (hibiscus flower) tea w/sugar free Torrani Strawberry Syrup bc TART. Go easy bc can effect b/p + tell yr doc. Find these reddish dried flowers in mexican grocery aisles or specialty stores. Hoping u hv sweet dreams!!

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Deena | @mrsdeecee | May 29, 2015
In reply to @sandykb "Tiffany I know the itch can be deep so topical might not help. I have an..." + (show)
@sandykb

Tiffany I know the itch can be deep so topical might not help. I have an amazing dr who thinks outside box & put me on Atacand which softens blood vessels making lungs (w/fibrosis so stiffening + is THIS essential issue? w/PBC?) more efficient to move. Ask if could help? Remember Viagra was orig for Pulmonary Hypertension so they hv multiple uses sometimes. Much hope & blessings sent yr way!!!

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I wish I could help I am going to need a liver but it's a waste for me I<br />
also have chronic pancreatitis eventually will be malignant, God BLESS you<br />
Good Luck and go to liver foundation sight on FB what EVER. You will learn<br />
a thing or 2 lol Deena<br />

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ethel | @rarawlinson | Jun 14, 2015

had 9ins. of bowl removed almost year ago.devitalitis.went to hospital today.having lots of pain from big hemmroid .sick feverish sick eating liquids and now have dirrera with this .left with having to have a follow up .Told I have a collaped bowl from cat scan tried to find info on that and cant Im in so much pain any help appreted.thanks

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1 reply
Marie Antoinette Silva Bette Priestley | @marieantoinette | Jul 2, 2015

Not sure exactly if itching is cause from liver situation. When were you diagnosed. Have you been prescribed all medications inpatient treatment or at the Emergency room? Are you connected to an Inetwork MD? When was your last check UPS? Lab work, any flu shots that your MD may need to have made aware?

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1 reply
Marie Antoinette Silva Bette Priestley | @marieantoinette | Jul 2, 2015
In reply to @rarawlinson "had 9ins. of bowl removed almost year ago.devitalitis.went to hospital today.having lots of pain from big..." + (show)
@rarawlinson

had 9ins. of bowl removed almost year ago.devitalitis.went to hospital today.having lots of pain from big hemmroid .sick feverish sick eating liquids and now have dirrera with this .left with having to have a follow up .Told I have a collaped bowl from cat scan tried to find info on that and cant Im in so much pain any help appreted.thanks

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To: Rarawlinson.Now that you were advised of such a way to alleviate symptoms, you have a poss collapsed lung when you received your CAT scans? I'm sure you were able to view these pictures, right?

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Marie Antoinette Silva Bette Priestley | @marieantoinette | Jul 2, 2015
In reply to @sandykb "Tiffany I know the itch can be deep so topical might not help. I have an..." + (show)
@sandykb

Tiffany I know the itch can be deep so topical might not help. I have an amazing dr who thinks outside box & put me on Atacand which softens blood vessels making lungs (w/fibrosis so stiffening + is THIS essential issue? w/PBC?) more efficient to move. Ask if could help? Remember Viagra was orig for Pulmonary Hypertension so they hv multiple uses sometimes. Much hope & blessings sent yr way!!!

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TO sandyhurricanegirl, I almost feel as if sleep aids are natural that's better all the way around , correct?

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