11 days after the surgery I had another chest/upper abdominal attack that went off the pain chart. I had to call 911. I spent the next 3 nights, 4 days in the hospital undergoing a barrage of tests but everything was showing normal. No bile leakage, no sphincter issues, no stray stones lurking about, etc. etc.
So I left with " Maybe it was a one time thing and it won't happen again?"
I hope not -------as that PAIN was so bad I could barely breathe let alone speak a whisper. Scary shit.
I was "set free" from the hospital one day before a planned vacation with Joanie to NC to visit some girlfriends. I still went. Why not? My health issues would still be here and I was not feeling pain.
I am so glad I went. I had a wonderful time. Wonderful. Wonderful.
I had to take some short nappies to regain my daily energy but no PAIN.
This diagnosis answers many questions to issues I have been having with my health.
After my initial gallbladder attack my doctor said my liver enzymes were up. I did some research and realized I should run a special blood test for PBC as my mother had the disease (but not the autoimmune disease) and some of my symptoms were head on for it. Sure enough the blood tests came back positive.
So when I went in for the gallbladder removal I asked my surgeon to do a liver biopsy while she was in there so we could stage the PBC.
Important note: If it were not for my forethought and research and remembering my mother's words to be tested when I got older as it runs in families........I would not know I had this disease. It probably would have taken a few more years for a doctor to find out I have PBC. That is the nature of the disease. It is uncommon and not known by many doctors.
It has nothing to do with alcohol or drinking. It is just part of the name because the liver eventually ends in cirrhosis.
I met with a gastrointerologist - Dr Nader- in the hospital and he explained what he found with my biopsy and blood tests. He immediately started me on Urso 3 x day for life plus Prednisone for a month to bring down some of the inflammation in the liver from the autoimmune disorder.
I will see him next month and he will run tests again to see where my levels are. He said he will probably start me on some immunosuppresive drugs at that time. There will be bi or tri monthly blood tests done for life now. Adjustments with drugs as needed.
In about 10-15% of PBC cases the patient has an overlap autoimmune disorder like autoimmune hepatitis or Lupis. My liver shows autoimmune Lupis within the liver. He staged me at 1-2 out of 4.
Fatigue is number one symptom and complaint of this disease. I have been fighting a growing fatigue since the whole BC crap and had just chalked it up to that.
My IBS and IC (interstitial cystitis) and joint pain are all considered autoimmune disorders.
I wonder if the PBC brought on the autonimmune disease or the autoimmune disease brought on the PBC? I have had IBS for over 20 years.
Cancer is like an autoimmune disease as bad cells are attacking good cells.
It's like my poor body has been having a battle with itself for years!
I had good health. I really did. Before my breast cancer diagnosis I was hardly ever sick. Since then, in the past 3 years I have gone downhill fast.
******** Breast Cancer*********
* Interstitial Cystitis
* Joint Pain
* Abnormal Uterine Bleeding/D&C
* Ovary Removal
*Chest/Upper Abdominal Attack
* Primary Biliary Cirrhosis
* Autoimmune Disease
That is enough for now. As the disease progresses (luckily it is a very slow growing disease) one usually gains a host of other issues too complicated to name right now. One step at a time.
If you had the patience and interest to read all that: WTG!
Just thought I should give an update.
Will be back again later to fill in the cracks.
For now I am popping pills, taking naps, gaining weight and doing my best to enjoy my Life.