Post-Liver Biopsy

I have been trying to get the motivation to sit myself down and write, but either have been in pain, been really busy with life & family to forget the pain, or worrying myself sick.

Let's just say that it HURT. Painful, very painful, and I have a very high threshold for pain (4 natural & painful births). Thank goodness for sedation, vicadin & fentenol. I still have pain, although I am not supposed to, but learning "supposed to" is all varying on a personal level.

No, I didn't look at the needle-contraption. Normally, that is something I want to watch. I opted to be sedated, on purpose. It was a needle-like-mouse-trap thingy that pulls parts of your liver into a compartment on the needle case. Hearing all about it was enough for me, Nuff said.

We are playing the waiting game now, waiting until the end of the week to find out my sentence, er, diagnosis. I have been almost in tears several times now. After reading a post on a PBCers yahoogroups, someone was addressing some fears of the newbies (or newly diagnosed). Here is their message...

Welcome to those new to the Digest and new to PBC. We all know how scared you are feeling and the many questions you may have. The PBCers.org website has loads of info that you may want to read. Everyone experiences PBC differently BUT a majority of us were diagnosed over 10 years ago and are doing well. I can remember the absolute horrible fatigue before URSO or URSO FORTE...it does recur but not nearly as often as it once did. Like most doctors will tell you...you will probably die of something else than PBC...I am not making light of this disease but want you to know that it isn't always the end of the road. One good thing it did for me...I quit smoking almost immediately because I knew if I needed a transplant I wouldn't get one...Well, quitting smoking was a good thing and I am still in Stage 2...the Stage I was diagnosed at in 1998. Take care, J in Illinois - dx 1998 - stage 2

She is probably right about the dying of something else, however, it is usually related to the disease, like lowered immune system and dying from some small infection that grows rapidly. Here is another inspiring message that gave me more food for thought...

Hi D, I have never heard of a way to find out how long you will live and I would think it would be a general idea rather than something you can bank on. Is that number something you really want to know to stake your life expectancy on? When I was first diagnosed it was the burning question I had. I just needed to know how much time I had. I got 2 different answers from two top hepatologists (one was 5-10 years, the other was I'd die an old lady.) The third, said "I have no idea, and there is no way to know exactly anyway, it would be a guess, and even if I did know I wouldn't tell you because I strongly believe in self fulfilling prophecy. If I tell you 6 years, you will somehow make that happen, the mind is a very powerful instrument." I listened to him and then realized he was right, I had seen it time and time again. I worked in palliative care and when the patient got up the courage to ask the doctor how long they had, he would answer something like "well you will see the leaves turn but you won't see the snow fall". In other words depending on the season, he would indicate they had a month or so. ALL of them died within a week. ALL of them. His statement had taken away their hope and there is no accounting for the human spirit in any scientific test. So do you really want to know something that there is absolutely no way they can know for sure. This is your life we are talking about. Look at cancer, with all they know about it, and they still have no idea how long a person has. Since I've had PBC, I've seen people with no symptoms, normal LFTs suddenly get varicies and be on the transplant list in days. Others in stage one have so many symptoms they are in constant pain and live 25 years or more. And getting a transplant is no more accurate with life expectancy. You can die on the table or within months or still be kicking after 16 years. I think our need to know is an attempt to take control of something that is really out of our hands, it is fear speaking. I understand that, this feels very out of our hands when there is little we can do to direct the course of our illness. But needing to know is holding onto something that in my opinion can take away years of your life. Do you really want fear to determine something so important? None of us with or without PBC knows how long we have. It is a crapshoot for every person on this planet. I understand how you feel, I was there, but I am so grateful I never got a number, because I can live each day as if it were my last (savouring it and with gratitude) and at the same time live as though I'll live forever (not letting a diagnosis stop me from planning and doing the things I wanted to do before diagnosis). I wish you peace, calm, equanimity, ease of well being and a long and happy life. Kathryn

That was so eloquently said, it gave me HOPE.

Pre-Liver Biopsy

I have to say, this week has been mostly up, but I have caught myself displacing my anxiety more than a few times. It didn't come out as anixety though, it was morphed into anger, and directed at my loving family. That got me sad, and using more restraint on myself, which is good.

Today, I am working on the more details of making sure the house is better (not best though, things are a bit behind in the organized home front...toddler #4 will do that to a family!); and working at calming myself into a more peaceful mindframe.

I won't lie and say I haven't thought of the 4 outcomes my Gastro Dr. Em might say to me, and think of how I will deal with each blow, and who would be my first call depending on outcome (that is to say, IF I find anything out tomorrow). From what I researched, these are the most likely outcomes, but there are dozens of others too...

1. Everything is fine, just lose the 55 lbs you are carrying around and your health will return to mostly normal, you just have minor damage to your liver that may/may not heal, but your liver enzymes should return to normal.
2. Well, things aren't fine, but they aren't dire either. You have some minor problems that we can work with over time, but are life long since there is no cure for them...self-help, some meds, and if things get worse as you get older, we have some ideas we can work with (PBC or worse, PSC).
3. You have a severe life long disease that we will work closely with (be it NASH or full blown cirrohsis), and eventually you will need a liver transplant in 10-20 yrs.
4. You have cancer. You are not eligable for a liver transplant due to having cancer.

I am working on thinking positive, as I read, hear and even my Dad tells me...think the outcome you want, and you will most likely get it. It is true, we are what we EAT & THINK, and that is why I am in the place I am now.

I am aware that being this overweight is very bad for me, and that exercise and eating differently will save my life. From the time I worked at Burger King when I was 17, until my gallbladder was removed 11 months ago, I ate fast food about 3 times or more, a week (I was 34 at the time, that was HALF OF MY LIFE).

In our home, we don't have a bunch of junk or even soda. Those are special treats that happen on a bday or something (every other month here). We do eat too much pizza and ice cream, even though I am anti-dairy (what a dirty secret that is!). We don't buy cookies, chips (okay, tortilla chips and fresh salsa in fridge isle). We eat a lot of ground beef, cheap & easy to fix for a family of 6, and whole chickens when they are on sale at Roth's for 69cents a lb! What I am saying is that we don't eat like I see some families eat...a lot of crap. But we don't eat as healthy as I would like according to my own standards.

In 24 hours, I will be sedated, sliced open (just a bit) and a needle will pull some of my liver out to test. I pray, pray, pray that I get a second chance at life, and some life sentence doesn't come from this. I keep thinking, maybe I am overreacting...but what if this is even more than I realize it could be?

My Dr. reminds me though, if it were cancer, you would be losing weight...well, I am a steady 190, so that is a good sign!

Hepatic Function Panel- Liver Test Results

ALP- 142 (normal 30-126)
ALT- 69 (normal 4-36)
AST- 47 (normal 8-35)

These are my most recent results, more elevated than the last ones I took about a month ago. At this point, we are looking at PSC (primary biliary cirrhosis), or worse yet PBC (primary scelrosing cholengitis), to which there is no cure for either.

Cancer is a possibility, but not what my gastro is looking for. I am worried enough though with the diagnoses above since they lead to ultimate cirrhosis of the liver and liver transplant for me in 10-20 years (Dr's speculated time frame), and can lead to cancer (especially PBC). My kids will be needing me still!

I have gone to the great lengths of crying myself to sleep over the possibilities- death, funeral, what happens to my family, Mark, my boys, money, etc. It isn't a good place to live & heal from, so I am strongly working on envisioning a positive outcome, while changing my dietary & physical habits as we speak.

I have much to catch up on here, but am taking one day at a time! Biopsy day is in a week and a half, and we will know so much more then (hopefully, otherwise is is MRI time).