A lot has happened since the gallbladder surgery.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.
The day before I left the hospital my surgeon came in with my liver biopsy details: Positive for PBC- Primary Biliary Cirrhosis with overlap autoimmune disease.
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 Lupus. My liver shows autoimmune Lupus within the liver. He staged me at 1-2 out of 4.
Interesting facts:
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
* Neuropathy
* Joint Pain
* Abnormal Uterine Bleeding/D&C
* Ovary Removal
*Gallbladder Attack/Stones
*Gallbladder surgery
*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.
(It really could be worse.)
Enjoy the moments,
xo
8 comments:
i'm so glad you came, too! it was wonderful. naps are good. keep your chin up, friend.
xoxo
I'm almost at a loss for words Lesa, your circumstances are overwhelming to the average person, yet, you persevere, as you must!! I love you...sadie
Wow Lesa, all I can say is that you have an amazing attitude! Hang in there. I'll keep you in my prayers.
WTF?!?! PBC? Autoimmune? and all those other bulleted items I can't even spell or pronounce or comprehend? So very glad you're on the mend, my friend. So very glad.
Janice
XOX
I read it all. I'm so sorry for this diagnosis on the one hand and relieved for you on the other hand that at least you know. It's easier to face things when we know what they are. Sending lots of hugs.
Hi Lesa
I have PBC too (diagnosed 7 years ago when I was 36). I doesn't really affect my life too much, I take the Ursodeoxycholic Acid and Milk Thistle and decided to stop drinking completely 2 years ago ( I never was a big drinker I just figured it might help a bit) - the only nasty is "upper right quadrant pain" ie underneath my ribs where the liver is. Most of the time it is either nothing a just a dull ache but every now and again I get a really bad pain and I think it might be the same thing that happened to you. It comes very suddenly and locks like a really bad cramp. It last probably only 30 seconds but takes my breath away until it subsides - horrible.
Anyway my Consultant first dismissed it as "very non specific" but has recently done a load of test to rule things out. All those tests were fine so his conclusion is that the pain is because of my enlarged liver (common in PBC). This is intuitively what I knew it to be, because I can bring it on when I squash my liver! By that I mean doing very specific things - sit ups in certain positions (especially sitting up and lowering torso to the ground does it every time), awkward trunk twists and the like. It feels to me that when my liver is squashed for room it protests! As horrible as it is it goes away fairly quickly, I know how to avoid brining it on, and it doesn't appear to be anything too significant.
Taking Milk Thistle seems to help with the general dull ache.
Hope this helps.... Annie :)
Well I came on to say thanks for all the cards you send from Little Life Preservers and see that maybe I should be sending you some. My world has been crazy like yours this year and your cards really have lifted me up. I have a wound vac, am on home health, and still have a couple of more reconstructive surgeries to go. But I know I will get through it all. Anyway, thanks again. Sondra Bright BarefootProf@bellsouth.net
Shit....with a capital S. Lesa, I just saw this now and I can't believe the crap you have been through. You are truly a fighter and an amazing woman. I sent you and email with a special request.
Hugs,
Barb
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