Thursday, March 29, 2012

Not the best news but could be worse I guess

It could always be worse...I just gotta remember that.

So I found out yesterday that I am in Stage 2 of Primary Biliary Cirrhosis...Ugh.  There are 4 stages, I was hoping for stage 1 (Or Zero- That would mean no damage at all yet, but I knew that'd be asking for too much...).

  • Stage one: Inflammation and/or abnormal connective tissue confined to the portal areas
  • Stage two: Inflammation and/or fibrosis confined to portal and periportal areas
  • Stage three: Bridging fibrosis
  • Stage four: Cirrhosis
{Warning: Medical jargon coming!}
Histologic stage — PBC is classified histologically into four stages.
As noted above, the natural history of PBC involves histologic progression along these stages, although treatment with UDCA may slow disease progression.

{Pre-UDCA [The Medicine I take]}
In a study involving 916 biopsy specimens from 222 patients followed in the pre-UDCA era, cirrhosis developed within four years in 31 and 50 percent who presented initially with stage I or II disease, respectively
The presence of cirrhosis (stage IV), is associated with a worse prognosis and identifies a group of patients at risk for development of complications related to cirrhosis including variceal bleeding and development of hepatocellular carcinoma. In a study of 256 patients seen in the pre-UDCA era, 31 percent developed esophageal varices during a median of 5.6 years of follow-up. One- and three-year survival rates were 83 and 59 percent, respectively, after the development of varices.

{With UDCA}
In another study, the presence of ductopenia {"refers to the associated reduction in the number of intrahepatic bile ducts, a process that ultimately leads to cholestasis"[bile not flowing and destroying liver]}on a baseline liver biopsy predicted histologic progression despite UDCA

In a trial of 180 patients at one medical center, UDCA led to a significant decrease in the plasma levels of aminotransferases, alkaline phosphatase, and bilirubin. Although there were also fewer deaths in the treatment arm, there was no improvement in fatigue, pruritus, liver histology, or referral for liver transplantation. In a follow-up report in which treatment had been continued for a total of three years, UDCA was associated with a significant reduction in the risk of death and need for transplantation

Similar findings were noted in a multicenter Canadian study of 222 patients. The active therapy group had lower plasma levels of the aminotransferases, alkaline phosphatase, bilirubin, IgM, and cholesterol. Fatigue, pruritus, and the rates of liver transplantation and death were unchanged. There was, however, a beneficial effect on liver histology as manifested by decreased progression of periportal hepatocellular ballooning and bile duct loss.


{Random interesting tidbit I found.  Sucks it's still coming back to bite me after 4 years quit!}

Cigarette smoking — An association between PBC and cigarette smoking has been suggested in epidemiologic studies. At least two studies also suggested that cigarette smoking is associated with more advanced fibrosis stage. In one of the studies, never-smokers were significantly less likely to have advanced fibrosis (METAVIR fibrosis score of 3 or 4) than patients who had smoked in the past or were current smokers (16 versus 33 percent). For each pack-year increase in smoking, there was a 5 percent increase in the likelihood of advanced fibrosis.


So Anyway, what now?  Now I get more tests! Yay! I have to get blood work drawn in 2 weeks, 3 months and 6 months.  Then see the doctor again.  Hopefully we'll see a downward trend of the numbers and can assume the meds (and diet changes) are helping.  Depending on how it's going, at some point I'll get another liver biopsy to see what stage I'm in then. 

My hope is that the meds slow down the progression and my diet changes help to start sealing my gut and EVENTUALLY (I'm talking several years here), I MIGHT see some reversal of this.  And then after even more time, maybe I'll actually beat this disease.  I mean I know it's supposedly 'incurable', but I have already met people that have cured their Auto Immune disease and read about lots more by doing what I'm doing.  So my hopes are high. 

I'm just going to stay on top of this and see where it goes.


Now I also know to stress even more to Zoe to not smoke (which of course I would already, but here's even another reason) and to eat right.  I really don't want my little girl to get this ("familial clustering of autoimmunity has long been recognized"  "Inheriting certain genes can make it more likely to get an autoimmune disease. But a combination of genes and other factors may trigger the disease to start"). And it's not just PBC I have to worry about- "Children {and anyone} with one autoimmune disease tend to run a higher risk of developing another"- Which is what has happened to me- I got lichen sclerosis first (AI disease) and now PBC...What next??

Heredity: A child inherits certain genes from her parents that make her susceptible to a particular disease.

  • Environmental factors: The disease doesn’t actually reveal itself until it’s “triggered” by something.
  • Hormonal factors: Given that many autoimmune diseases tend to affect adolescent girls and young women, the presence or amount of certain naturally occurring hormones in the body may also play a role in when these illnesses come to the fore.

  • So this is how it could have happened with me:
    I am predisposed to get an AI; I eat Gluten all my life; I cause holes in the gut and gluten travels around my body; My immune system attacks the Gluten; Then I get my Sphincter of Oddi Dysfunction attacks; That 'triggered' my immune system some how to get confused and start attacking my body giving me LS and PBC

    [" When the immune system attacks the gluten protein it can confuse other bodily proteins for gluten due to their similar molecular structure. The term used to describe this phenomenon is “cross-reactivity”.  This cross reactivity is the cause of the immune system attacking “self”. It believes it’s attacking a toxin, in this case gluten. In some cases the trigger to attack self can be an infection"]

    Of course, there's no way to know if I've had the PBC before the LS and just didn't know about it - the LS just makes itself KNOWN!  Maybe it was the time I tried the Depo Shots that triggered it, or the hormonal changes from quitting smoking or being pregnant, or the stress of a kindey stone or gall stone, or that really high fever I had that one time- Just making a point, that there's really no way to determine the 'trigger', could be anything, which is why it's so important for me to try to prevent the leaky gut in the first place for Zoe!

    Ugh.  Just sucks to know I have probably passed the genes on to Zoe to develop AI disease(s). 

    Welcome to the world! You're beautiful! Smart! Funny! And, oh yea, here's a little something extra...

    Great job mommy!


    Sources: Unfortuantely, my trial is almost over! :(

    Tuesday, March 27, 2012

    Some good news

    Had my appointment with the thyroid surgeon.  He said that, in fact, the large nodule was already 2.5+cm last time it was checked, so the old records from 2010 had just been misread! So no real change in size, so no biospy needed! Yay! I have to go back in a year for another ultrasound.  He said that since this has been tracked since 2007, if the next one says it's pretty much the same, I can stop even getting ultrasounds done.  He said after a few years, if it hasn't turned into cancer, it probably won't.  So that's my first piece of actual good news!

    Tomorrow I findout what stage I'm in with the PBC...I'll update on that as soon as I can.

    Friday, March 23, 2012

    Some videos concerning gluten and our health

    So there are tons of things to find that will talk about gluten and how it negatively impacts our health.  I find more stuff all the time.

    Here's a different mode.  Instead of giving more articles to read (which I will soon anyway :).  Here are some videos to watch/listen to.  Good info...I'm sure I'll find more soon.  They are all over the place. 

    Video 1
    Video 2
    Video 3

    A TED MED Presentation

    Monday, March 19, 2012

    Tomorrow is my liver biopsy

    Well, tomorrow is the day.  Fun stuff.  My dad is coming in to town drive me home from there since I guess I'll be loopy :)

    Life is kind of crazy right now.

    I have had so many appointments, and am still so new at work- I really hope it's not looking bad for me.  I mean they are nice about it all, but I just hope this isn't messing up things for me for the long haul. I could see myself staying here a while if they'll have me!

    I finished my last research paper for the semester on Saturday and I already got my grade- an A! So I should for sure have an A for the semester! Yay!

    And Zoe stayed the night away from me for the first time EVER, since conception! It was stressful for me, but I hear she did just fine.  That's good to hear.  I think I'm more sad about it than I should be.  Just missing the way things were.  She told me she's forgetting how we used to spend all our days together.
    :( Makes me sad to think all the time I devoted to her won't even be a memory for her.  But still worth it for me.  I think it'll make a difference in her character- even if she doesn't remember it.  Hopefully I can still be a good enough mommy, in the few hours a week that I get, that she remembers that...

    Just taking one day at a time...

    Thursday, March 15, 2012

    Better than bad news, I think

    Sorry for the late update. We were busy last night.
    My lung doctor appointment went ok. He said he doesn't think it's cancer, so that's good. But he also said he is not sure what it would be. Said its probably more fluid than solid, or maybe scar type tissue. He asked me about reflux. I told him how a couple of times while pregnant I aspirated some stomach acid- he said that kind of thing could have caused damage like that.
    So for now, I'm going to just get a chest X-ray every couple of months to see if it's changing. He's hesitant to do a lung biopsy because I'm feeling fine and there's a big risk of lung collapse leading to a week long hospital stay. The risk to benefit ratio leans to the 'just watch it for a while' side.
    So not bad news- so that's good! ;)

    Wednesday, March 14, 2012

    Have my liver biopsy scheduled

    So it's gonna be the morning of the 20th. Sounds pretty long they said- 30 minutes for sedation stuff, 1 hour for the biopsy surgery and 4 hours in recovery.
    Now hopefully during my appointment today with the lung doctor I can get my lung biopsy done at the same time?! Or maybe the next day or something. That way my dad can just stay an extra day or two to drive me! :)

    Tuesday, March 13, 2012

    Well that doesn't make me nervous or anything

    I got a call from the pulmonologist (lung doctor) today. He only had one appointment available in the next 2 weeks - tomorrow. And he really wanted me to go then and not kinda makes me nervous. Not good when a specialist really wants to squeeze you in! So tomorrow I'm going there! Will update after the appointment.

    Friday, March 9, 2012

    CT scan results are back

    Well, I have a diffuse alveolar infiltrate in the right upper lobe of my lung.  And 5 sites of ringlike infiltrates, 3 in the left lower lobe, one in the right lower lobe and one in the right middle lobe.

    No pathologic nodal enlargement.  No pleural fluid.

    Differential diagnosis is extensive and includes infectious and immunologic lung disease.

    I really don't know what all that means except that now I have to go see a Pulmonologist and get a LUNG BIOPSY! Ugh.  That does not sound fun...

    I'm on the chopping block for a liver biopsy, thyroid biopsy and now lung biospy.  Jeez.

    Seriously? How the heck am I suddenly finding that nearly every part of my body has an issue?!?!?!

    I suspect that it's all related, the liver, lungs and thyroid.  I'm hoping that all stem from auto immune problems and that they ALL will be helped, slowed or even CURED with my gluten free lifestyle.  I cannot have so many problems! I am only 34 years old and (was) fairly healthy. 

    Surprising how much stuff has gluten

    TRUE Gluten Free Diet Guidelines – Avoid All of These…
    Barley (malt)
    Durum (semolina)
    Corn (maize)* (for a list of hidden corn ingredients, go here <<<)
    Rice (does not include wild rice varieties but does include brown rice)*
    *These grains are classically considered gluten free, but are not recommended on a TRUE gluten free diet.  If you would like to learn more about why these other grains should be avoided, watch the following video <<<
    *** These items are technically not grains, but are at high risk for cross contamination and not recommended on a TRUE gluten free diet unless verification can be obtained.  These pseudo cereals are also very high in glutamic acid and should be discouraged as substitutes for patients with neurological symptoms.
    Misc. Food Additives or Processed Foods That Can Contain Gluten
    Modified food starch
    Textured vegetable protein
    Hydrolyzed plant protein
    Hydrolyzed vegetable protein
    Hydrogenated Starch Hydrolysate
    Hydroxypropylated Starch
    Pregelatinized starch
    Vegetable gum
    Vegetable protein
    Extenders and binders
    Maltodextrin (wheat or corn based)
    Non Dairy Creamer
    Seasonings (check labels)
    Natural Flavors
    Smoke flavors
    Artificial Flavors
    Natural Colors
    Artificial Colors
    Caramel color and flavoring
    Soy Sauce
    Bouillon cubes or stock cubes
    Candy may be dusted with wheat flour; ask.
    Canned soups – Most are not acceptable.
    Cheese spreads & other processed cheese foods.
    Chocolate – may contain malt flavoring.
    Cold cuts, Wieners, Sausages – may have gluten due to cereal fillers.
    Dip mixes
    Dry sauce mixes
    Honey Hams – can be based with wheat starch in coating.
    Ice Cream & Frozen Yogurt – check all dairy.  Cows are fed grains and many react to dairy for this reason.  Grass fed dairy recommended (or avoid dairy altogether).
    Instant Teas & Coffees – cereal products may be included in the formulation.
    Mayonnaise – check thickener and grain based vinegar ingredients
    Mustard – Mustard powder may contain gluten
    Oil, frying – Check for cross contamination or corn based oils.
    Poultry and meats – Check out the flavorings and basting and inquire about meat glue
    Sour cream – May contain modified food starch of indeterminate source.
    Dry roasted nuts & honey roasted nuts
    French fries in restaurants – Same oil may be used for wheat-containing items.
    Gravies – check out thickening agent and liquid base.
    Vitamin supplements (different brands contain grain based ingredients – check the labels carefully)
    Baking powder (commonly contains grain – wheat or corn)
    The Grasses -
    Many people want to use wheat, barley, rye, and oat grass (not the seed) as a supplement in the diet.  Technically, these do not contain gluten as they are the grass part of the plant.  However; it is recommended that these be avoided to prevent the possibility of cross contamination.
    Alcoholic Beverages that contain gluten-
    Malted beverages
    Grain based spirits (many claim that distillation removes gluten…Gluten Free Society recommends avoidance regardless)
    Non Edible Items That May Contain Gluten (Read Your Labels)-
    Stamps & envelopes
    Hairspray & Shampoo
    Pet Food
    Medications & Vitamins
    Is There Gluten in Dairy?
    Research has identified that gluten from mother’s milk passes into the dairy of humans.  A majority of gluten sensitive individuals do not tolerate milk or dairy based foods.  The staple diet for commercial dairy cows is grain.  Whether or not glutens from feeding cows grain crosses into dairy is still in question and has not been adequately studied.    That being said, common sense of the obvious should supersede the decision to use dairy.  Gluten Free Society recommends only dairy that comes directly from pasture fed cows if any at all.  For more in depth information on this topic, please listen to the following 2 part interview between Dr. Peter Osborne and Dr. Rodney Ford:
    Part 1
    Part 2
    ****Note – their is no such thing as a complete comprehensive list of food items that contain gluten.  Manufacturers regularly change their ingredients, mislabel, have product recalls, etc.  This is why Gluten Free Society’s stance is to avoid processed and packaged foods as much as possible as well as to avoid eating out as much as possible.  You cannot control the mistakes or ethical considerations of others.

    My source:

    Thursday, March 8, 2012

    Had my CT scan today

    First of all. That barium stuff is gross. I had to drink THREE doses this morning! Yuck. Talk about nauseating. Plus I had to get the contrast in an IV. Fun. Should have results in a day or two.
    This whole day has just been crazy. Zoe got sick on the drive in. All. Over. Her. Carseat. Again. Ugh. So I cleaned her up and brought her in the appt with me. Then Tom came and got her. They're hanging out together today. Tom also took the carseat for me. Gonna just trash it. She puked all over it a few weeks ago. I sprayed and washed it as best I can, but the cloth doesn't remove so now after 2 episodes I guess it's just time for a new one.
    It's a big decision tho, so I'm having trouble figuring out which one to get. I want one that goes as high as possible on weight with the harness. The traffic in Austin is scary. I want her well protected for as long as possible. I'll probably end up going with a Britax. They are expensive, but I think the material removes on all and is machine washable. And they have some of the highest weights with the harness. So now just where to find a good one in Austin. I see places on line to order, but I need one today!

    It's a never ending list with me...

    Tuesday, March 6, 2012

    An update from my dr appointment

    Today's appt went ok. He confirmed I have PBC. He let me know that he can't give me a prognosis until after a liver biopsy. Fun. And he's concerned because ALL my liver tests are high. Usually just ALP and AMA are increased significantly, but my ALT and AST are also really high. So auto immune hepatitis is also a strong possibility (not the same as hepatitis from the virus). So I also had several vials of blood taken today.
    I don't have anymore answers yet. I am supposed to go back about a week after my biopsy to find out what stage I'm in. And I've already started the UDCA treatment. I'm supposed to get my liver tests rechecked in a couple of months.
    I still need to get the lung CT and see a pulminologist and to get the thyroid biopsy.
    Why the heck do I have so many issues? I thought I was pretty healthy. I mean I need to lose about 20 pounds, but other than that I thought I was pretty healthy?? Ugh. Life can really throw some wrenches at you sometimes.
    I'll just keep trying to do what I can that might help me live a little longer with my liver...

    Monday, March 5, 2012

    A start to the gluten auto immune connection

    So here is a website with tons of links to studies with information about gluten and auto immune diseases:

    This is a video, it's free to watch- there's stuff on the page to buy info, but it's free to watch the video:

    That'll get ya started.  Many more to come!

    Some statistics and information I gathered

    I guess I just can't get too much information...Not so sure that's a good thing.

    Here are some random tidbits about PBC:

    The prevalence of PBC in families with one affected member is estimated to be 1000 times greater than that in the general population. The disease primarily affects women.  {So think I'm worried about my daughter? Hell yea...}

    The average age of patients undergoing liver transplantation for PBC is in the range of 53 to 55 years (mean age of diagnosis is 39).

    {The part about "debilitating bone fractures" sounds fun?!}
    In addition to considering the MELD score and Mayo model, we suggest that patients with PBC be referred for transplantation evaluation if one or more of the following is present:
    •The plasma bilirubin concentration is greater than 5 mg/dL and is increasing
    •The serum albumin concentration is below 2.8 g/dL (28 g/L) and is decreasing
    •Signs of decompensation or portal hypertension develop, such as ascites, variceal bleeding, coagulopathy malnutrition, or encephalopathy
    •The patient has intractable pruritus
    •The patient has recurrent, debilitating, nontraumatic bone fractures

    {Oh goody, liver transplant doesn't even fix it anyway!}
    Recurrence of PBC in the transplanted liver — It is now generally accepted that PBC can recur following liver transplantation.
    In a report of 421 patients from Pittsburgh, PA, recurrent PBC was observed in 8 percent of patients after five years, and 22 percent after 10 years [11]. Higher rates were described in a series of 400 patients from Birmingham, England, where recurrence was observed in 18 percent at five years and 30 percent at 10 years [9]. A later report from the same group involving 485 patients found a recurrence rate of 23 percent during a median follow-up of 79 months.

    Primary biliary cirrhosis remains one of the top five indications for liver transplantation in the USA. Survival rates of patients and grafts after liver transplantation are reported to approach 92% and 85% at 1-year and 5-year intervals, respectively.137 Fatigue and pruritus usually resolve, with metabolic bone disease improving after transient worsening in the first 6–12 months after liver

    {Thankfully I'm asymptomatic right now, so I guess I have 16 years?! Nice to know when my timer will ding...}
    Generally, the median survival duration from the time of diagnosis is 7.5 years for patients who are symptomatic and 16 years for patients who are asymptomatic.

    {I like how it says 'delays' ugh}
    Reports suggest that UDCA delays the need for transplantation or delays death.

    {FINALLY, something that actually sounds positive! Lets hope I'm responsive to the UDCA treatment!!!}
    Patients who achieve biochemical response to UDCA after 1 year of treatment reportedly have a similar survival rate to the matched control population, and this observation might be used to identify the population of nonresponders who will require alternative or additional treatments

    {Or not...}
    Liver transplantation appears to be the only life-saving procedure.
    15-20 mg/kg of UDCA (ursodiol) provided best out come.

    {My sources, along with a trial UpToDate membership...}

    So honestly, I'm being a little sarcastic with my comments.  I mean, all the data does sound super bleak, BUT I've also been doing a lot of research on autoimmune diseases as a whole for a while now because I was trying to control my lichen sclerosis...SO, I've found that there is A LOT of evidence pointing toward grains (specifically the protein in grains known as gluten) causing 'leaky gut' which is then associated with causing all the auto immune diseases.  I will post PLENTY of references on that as time goes on.  But for now, I just wanted to say I'm not feeling nearly as negative as my comments sound.  I actually have very good hopes for my grain free diet and increased vitamins to help me cure or at the very least, slow down progression.  That along with my UDCA treatment will hopefully give me a normal life...

    Looking forward to my appointment tomorrow!  Need to find out where I stand and get started on the treatment!  I have a kid that needs me to stick around a good long while! :)

    Sunday, March 4, 2012

    Waiting is so hard to do

    Most of the weekend I had my niece, Gia, so I didn't have to think much about what's going on. But since she left I've been left up to my own devices. I'm just trying to stay busy. Zoe and I planted some more seeds in the garden. We are growing a good variety of fruits and veggies this year. Zoe is already looking forward to the harvest :)

    So now I'll just try to focus on getting ready for the week. My parents are coming in for the specialist appointment on Tuesday. So we should have a good couple of days hanging out. 

    Oh and joy, because I don't have enough to think about and deal with- my fairly new fridge now leaking water in the floor. So I'll need to call for warranty work. I'm sure that'll be another huge pain to get fixed. Ugh. 

    At least I have so many things going on, I can't dwell on any one particular suck item of my life. 

    Instead I will focus on Zoe and work and school. And try to forget the rest...good luck to me! LOL

    Friday, March 2, 2012

    And so it begins...

    Today I was diagnosed with Primary Biliary Cirrhosis.

    For those that don't know what that is, here a link-

    I am feeling like I'm totally falling apart. I originally had just gone in to the doctor for a routine blood test- I felt (and feel) ok!

    Then my liver enzymes were way too high.

    ALP 937 u/l
    AST 235 u/l
    ALT 389 u/l

    Plus my bilirubin is a bit high.

    So then I got an AMA test - that's anti mitochondrial antibodies. They shouldn't exists at all- or be very low. Anything over 25 u/l is a positive for PBC. Mine came back 107.6 u/l. So yea, I guess that's a positive...

    So I also got an MRI (MRCP). And they also found an enlarged spleen (probably from the PBC) and a spot on my right lung.

    So I have to get more testing for my lung, including a CT scan.


    I have known I had nodules on my thyroid since 2007. I have had several biopsies done from 2007-2010. Then I stopped going. Well one of them went from 5mm to 2.5cm since I'll have to get another biopsy done- this time by a surgeon...

    And to top it all off I have an ear infection from my allergies! Ugh.

    Seriously?! I didn't even feel sick!!

    This medical stuff is just a small part (imagine that!) of all the shit going on in my life right now. I can say I definitely didn't need more on my plate, but I'm a big girl and I will deal with it. More to come on the other topics...

    I'm creating this blog to vent, but to also (mostly) keep family and friends updated with what's going on. I also plan to use it to talk about anything and everything bothering me or just going on in my life, good or bad.

    Thanks for joining me! Stay tuned!