PA, Diagnosed 2016, stage 2-3
Who would have thought PBC. What is that? Oh a rare liver disease. But you don’t drink. I’ve never known anyone with liver disease. There is no way you have that!! These are all the thoughts that went thru my mind and my families also. I am now 43 years old and diagnosed a little over a year ago. It was the scariest diagnosis I have ever gotten. How could a mother with 2 boys and so much life to live get a diagnosis like this.
When I told people of my diagnosis, I think some thought I was making this up. Well, I certainly wish I was. I guess, lucky for me, when I went for my yearly checkup with my PCP she did some normal blood tests. I thank GOD everyday that she tested my liver enzymes, for they came back elevated. So of course she sent me off to a specialist, the GI doctor. At first my GI doctor thought I probably just have fatty liver, and recommended I try and lose some weight and he would see me back in 3 months. Although having hypothyroidism, I tried my best and was only able to lose 3 pounds over the three months, Ugh!! When I returned, the Doctor I previously saw wasn’t there, so I saw the nurse practitioner. She was much more aggressive and wanted to run many more tests and ordered me to have a liver biopsy done. I told her I would wait on the liver biopsy and see what my test results came up before I would proceed. I promised myself if my blood work came back with a positive AMA I would get the liver biopsy done. Well it happened, my AMA came back positive and within a few weeks I got my biopsy done. I waited for three weeks and heard nothing. Finally, after obtaining my results, I called the Doctors office telling them I know I have PBC, and need someone to call me immediately. When the doctor called me, I knew he was reading from a pamphlet, it was the same information I had educated myself on over and over again almost word for word. After meeting with the doctor I found out that I am only 1 of 2 patients that he has with PBC.
I started Ursodiol within the month. It took me almost 9 months until my liver enzymes where again in normal range. Who knows how long this has been going on in my body. I fortunately have no symptoms, besides being tired which also goes along with hypothyroidism, so who know which one is the cause.
I find that most people don’t understand that living with this disease is scary, because everyone is different and there progression is too. People tend to think because I don’t look sick, that I’m not sick. I have found that the best medicine is to listen to my body and rest when I can. I try and eat well with lots of greens. I have lost over 30 pounds since I was diagnosed. I am very thankful for my doctors everyday that they found this when they did, if not I could have been a much farther progression. I remind my family often to please take care of your liver, because I may need it someday.
Iowa, Diagnosed 2003, stage early
I am a 92, soon to be a 93 widow of a WWII veteran. I live independently, drive accident free and I am an independent lady with a passion for my unique fiber art works. Several pieces are hanging in prominent locations.
I was diagnosed with PBC by Dr. Lindor at Mayo Clinic in Rochester, MN in 2003. I had a previous operation for stones in my gallbladder, one outside, very diseased gallbladder which was removed. My problems did not get better after my gallbladder removal.
Luckily, I had a very alert primary care doctor who was convinced I had PBC. He referred me to the University of Iowa at Iowa City. Because I was in the 5% Non-PBC markers, the doctor at University of Iowa could not confirmed a PBC diagnosis. A liver biopsy was then performed, which did show it was consistent with PBC. The biopsy results were sent to Dr. Lindor at the Mayo Clinic, and he confirmed PBC diagnosis.
I have been on Urso, brand name and now generic since 2003. I have done very well on it, and live a full life. I have exhibits of my art work, however I do not have the stamina for traveling as I used to do. An interview of my art work is on you tube “artist Joyce O’Brien” will bring it up. I wish everyone the same results I have had with the Urso medication.
California, Diagnosed 2000, stage 2/3
I went to my doctor’s office for a check-up and was told I needed to get blood tests done. My doctor kept making me go back and get re-tested saying they had some readings they weren’t sure about. Finally, they told me that I had extremely high liver enzymes. This was a shocker because I never drank. How could I have a liver disease? I was asked many questions about my lifestyle. Did I have tattoos? Did I have unprotected sex with multiple partners? Did I use drugs? I was mortified by these questions. I couldn’t believe it!!
My life has forever changed from that day forward. I was given Actigall…at first it made me nauseous and dizzy. My doctor said to take only one pill for the first 2 weeks, then increase the dosage to 2 a day for 2 weeks and then take the 3rd pill for the next 2 weeks.
It worked, but I found myself itching my arms so much that I had bruises on my arms. I worked next door to a grocery store selling tobacco. I would go and buy some ice and kept putting the bag on my arms to relieve the itching. It felt like little bugs crawling under my skin. At that time my arms were the only part of my body that itched.
Then the fatigue started. One time I locked the store doors, went into the back area and took a nap. That was the beginning of my taking naps. I am now on Ursodiol 500 mg x 3 tablets per day, all taken at dinner time.
I now have many autoimmune diseases due to PBC. Blepharitis, inflammation of eyelids; deteriorating bone loss: bi-lateral knee replacement, 2 degenerative discs in my back. Retirement hasn’t been fun. But at least I am above ground right now.
I can only do one thing for the day…like take out the trash or go grocery shopping or go to the doctors. I need to write a “to do list” and keep track of what needs to be done that day. Sometimes I forget to look at my “to do list” and then I am lost. I even can get lost driving to familiar places. But I just keep on keeping on cause this is better than the alternative.
Jacksonville, FL, Diagnosed 2013, Stage 2
Hello My name is Nicole and I was DX with Pulmonary Hypertension in 2012, Cirrhosis from Fatty liver 2013. Now it is 2017 I am stage 2 Cirrhosis and stage 3 Pulmonary Hypertension. I am also a diabetic and have Congestive Heart Failure.
The doctors said it’s unlikely that I will live more than 9 yrs. I am very upset about this, but I am not giving up without a fight. I have bad days and sometimes I have good days. I have 3 children whom I love very much, and love my cats as well.
WA, Diagnosed 2014, Stage 4 with full Cirrhosis
Every time I went to the doctor, they’d find something new that needed to be addressed. So, I foolishly decided I’d just stop going. That seemed to work fine for about 10 years, until one Sunday morning in January 2014 when I stumbled into the bathroom and passed out. The next thing I knew, my husband was shouting at me, asking where all the blood had come from; as it turns out, I had bleeding varices and had lost a significant amount of blood. I credit my dog for saving my life; my husband was sound asleep and had it not been for our dog barking at him, he would have been totally unaware of what was happening.
After several months of tests, I was diagnosed with PBC and put on Ursodiol and Propranolol. I also underwent several endoscopies with variceal bandings. My condition began to stabilize, but my GI doctor was only treating the symptoms, and I felt I needed more than that. I went to the Mayo Clinic twice, and didn’t have much luck with them, either. My husband and I were very frustrated; I had no energy and always had a sense of malaise. My blood pressure began to rise and the GI doctor’s answer was to increase my dosage of Propranolol.
Then I joined PBCers and I’m very grateful I did. Thanks to PBCers, I found a great Hepatologist: Kris Kowdley. Dr. Kowdley is the head of the organ transplant department at Swedish Hospital in Seattle, and he uses a team approach to treating patients. He reviewed my medications during my first visit and told me it was a wonder I was even walking around. He switched me to Nadolol and that made a huge difference.
Although things were improving, I still had “brain fog”, and a quick blood test confirmed that my Ammonia levels were elevated. Dr. Kowdley’s team diagnosed me with hepatic encephalopathy and put me on Xifaxan® (rifaximin) which has helped a lot. My only complaint is the high cost of the medication; it costs $2,000/month. I work for a large tech company and have great insurance that covers the cost, but I know there are others who aren’t so lucky.
I’m thankful to be a member of PBCers; I’d be lost otherwise. PBC is an expensive disease that can be very frustrating to deal with and being part of PBCers has given me a new sense of hope. Thank you!!
Continue to PBCers Stories Part 2