Latest update as of October 18, 2013

Well, I had my appointment with my Gastroenterologist today.  I've been working really hard on improving the health of my liver and my overall health, but I found out my numbers were a little bit of a mixed bag this time.  My ALT and AST numbers were a little different, but little enough that it might just be natural fluctuation.  But my ALP was up by about 30.  This isn't so good.  I think a reason for this is how much I've been tapering the Urso.  I really, really hate being on meds- meds that have no end in sight.  And they also make my hair fall out by the HANDFUL every washing.  So I've been tapering at a pretty good rate to try to balance liver health and the rest.  I may have pushed that a bit far recently, so I'll need to bring that back to a level that pushes my liver in the right direction.  It's been nice actually seeing hair growing back! But I take liver over hair...So I need to work on the balance.

All this has me thinking, I trial and error a lot here as a way of trying to get myself into optimum health.  I do this because I feel like I'm forced to take control of it myself.  Most mainstream doctors are all about meds and treating illness, NOT about creating health.  There's a big difference in those mentalities and I haven't felt like I could really find a provider that would embrace health- unless it was a 'hippy' that other people wouldn't respect their suggestions.  I would, since I don't think it it takes a piece of paper with MD on it to really understand the human body and how to help- It takes experience and a DESIRE to understand.  But when you try to plead your case to others, if the person giving the advice doesn't have those two little letters, some people tend to dismiss them.  I do have a few resources that I trust, but honestly I want someone local that I can trust and that I can AFFORD!  So I'm researching.  Looking for my guide in this journey :) I know I will find them, in this of all towns I'm sure...

So before I put up the numbers, I wanted to note the additional numbers I have.  First I added albumin as I have found it is a very good indicator of liver health.  I am in range with this one, but I'd like to work on lowering it since I'm really BARELY in range.  Also, I added protein, it's good, but just keeping it here for tracking.  Also, I added Bili Direct just as another indicator for bili.  And the PT is the Prothrombin Time- this is the time it takes to clot.  As the liver gets sicker, the time to clot takes longer and longer.  So far I've only been getting this checked occasionally, but I've included it to show that my PT is good.

Actually, everything except the ALP is in range.  This is definitely good.  But I am going to focus on trying to get everything better.  I'm hoping my Guide will have some good ideas for me.

Date	AST	ALT	ALP	Bili total	Bili direct	Albumin	Protein	PT
Normal	5–35	7–56	30–132	0.1–1.3	0–0.3	2.9–5	6–8.4	9.6–12.8
2/20/2012	235	389	937	1.7	-	4.6	8.2
3/6/2012	142	253	633	1.1	0.3	4.4	7.4	10.9
4/16/2012	59	101	194	1	0.3	4.4	7.3
5/14/2012	36	56	160	1	-	4.3	7.2
7/6/2012	31	42	163	1.2	0.3	4.3	6.9
10/2/2012	58	113	221	1.4	0.3	4.5	7.4
1/31/2013	47	72	201	0.9	0.2	4.5	7.4
4/30/2013	36	44	188	1.2	0.3	4.2	7
7/30/2013	36	36	185	1.1	0.3	4.3	7
10/16/2013	32	39	214	0.8	0.2	4.4	7.2	10.8

I hope everyone has a great weekend! I'll update again soon!

Hit a snag and other updates

Well, I'm a bit bummed.  My numbers have gone up.  I've been really good.  Absolutely zero gluten, low sugar, no alcohol (of course).  Just all really fresh, whole food.  But I'm not giving up.  It's just a set back, but it's not the end of the world.

OK the numbers.  For a consolidated place to look I'm going to put them all here.

	Bilirubin	ALP	AST	ALT
Normal	.1-1.3	30-132	5-35	7-56
2/20/2012	1.7	937	235	389	Initial
3/6/2012	??	633	142	253	Almost 3 wks gluten free
4/16/2012	1	194	59	101	Gluten Free and Ursodiol
5/14/2012	1	160	36	56	Gluten Free and Ursodiol
7/6/2012	1.2	163	31	42	Gluten Free and Ursodiol
10/3/2012	1.4	221	58	113	Gluten Free and Ursodiol

So, for some reason my numbers are a lot higher than they were in July.  This is disconcerting.  I was really expecting to go in and see everything in the normal range.

I will just have to work harder.  I will not be beat by this.  It just needs to motivate me more.  I have been trying to get back to working out (before my pinky toe issues), I think maybe that might help? I don't know, but it's worth a try.

16 years.  That's the average length of time from diagnosis to death.  16 years.  I don't like that idea.  I'd be 50, Zoe 19.  Nope.  I don't accept that. No teenager should have to even consider losing a parent already.

AND it makes me work that much harder for preventing for Zoe.  What if this doesn't cure me but only just extends the time? It makes me double up my efforts for Zoe.  If it can't be cured, prevention must be of the utmost importance.  And PBC, per the info from my doctor, tends to hit the second generation younger than the first (and remember, mother / daughter pairs are the most common familial pairs for this- AND she has a 1,000 fold chance of getting this because she's my kid).  So if it hits her younger, what will it be? I was 34.  30? Younger? And with 16 years? No, I don't like this.  Prevention is the key.  Just as it is in so many things, it is especially in this case.

Plus she has the genes for Celiac disease.  I just have Gluten Intolerance.  PBC is even more common with those with Celiac disease.  The odds are stacking up against her and none of these things have a cure.  Just a treatment in which gluten is removed and meds taken- so why not remove the gluten now - if it will have to go anyway, why not take that chance that it might even prevent these diseases from triggering? I don't have a problem with that.  If there were something out there to do that is completely safe and could prevent a particular disease, I think someone would be crazy not to try it.  I mean, it's not painful or dangerous.  We actually eat healthier than just about everyone I know- so what's not to like about it??

It's hard though.  I'm not the only person with Zoe.  She has influence from many other people, and some of those people don't see the value in prevention- Instead taking the "we'll think about this after she gets sick, until then she should just have fun and eat whatever she wants", but I know in my heart waiting until she's sick will be such a harder road to climb.  It's not fair to have her get diagnosed even younger than me and then have to worry about not even making it to mid-life??

Not eating a piece of toast or a gummy bear seems a lot easier than facing your mortality in your 30's.
Not having that cookie or pasta seems a lot easier that being addicted to it and then being told you can never have it again.
Not having that cake or cracker seems a lot easier than being told you will most likely get a liver transplant in the coming years, and then you have a very good chance of that one being destroyed too because this disease is in your Immune System, not your liver - the liver is just the victim.
Choosing to eat whole, fresh foods like meat, fruits, veggies, seeds and nuts seems a lot easier than finding out you have intestinal cancer from your Celiac disease (which commonly happens along with various liver diseases, thyroid disease, RA, type 1 diabetes, etc, etc).

Call me crazy, but those all seem like easier things.  I have perfected the gluten free alternatives to just about anything you can normally get - and I make them even better with less sugar, whole foods and minimal processing.  I've learned more about cooking from scratch than I ever knew and I can say- it makes complete sense.  No wonder we're all so sick - the crud in the boxes and bags in the store is just appalling.





Anyway, enough of that for now.  On a good note- Zoe's dad and I toured a school today and have decided we really like it.  It's Montessori style learning, which seems like it might be right up Zoe's alley.  They foster learning with each of the kids at their own pace.  And since Zoe always seems so far ahead, this will be great for keeping her engaged.  It's a small school, which feels like a good thing.  It's very clean and they do all kinds of extra things like dance, spanish, music, trips to the library and to the nursing home.  All things we think will be really good for Zoe. They even have times that the parents get to be involved in various school activities, so this seems like it will be great for all of us.  She will start in a couple of weeks.  Costs an arm and a leg to get it started, but after that the price isn't too much more than I'm paying now.  So that's a good thing! Some places that also seemed really good were $1200+ a month.  I just can't afford that right now.  Hopefully by the time she's completed this school (it goes through first grade) there will be another option within the budget for her.  We'll have to cross that bridge when we get to it, but for now we think she will really like this school.

One last item to mention- Friday is my divorce mediation.  It's not something I'm looking forward to, that's for sure, but it will be good just to get this all done.  For the longest time I just wanted to believe it wasn't going to happen, that some how things would heal, but I know that's not true.  I know it's not possible.  Once someone has decided, they have decided I guess.  But I guess it's been long enough now that I have accepted it - for me anyway, I'm still having trouble with it for Zoe to have to grow up this way.  But I AM ready for it just to be done, one way or the other.  Living in limbo stinks.  I don't want to be divorced, but I think I hate being 'separated' even more - it's just hard to be in-between...Like balancing on a wire 10 stories up, any wrong move will send you crashing down.  Yea, I'm ready just to get to the other side - even if it's not the side I wanted.  I always say, things happen for a reason, just the way they were supposed to.  So I've already found many reasons to be thankful my life has gone down this unexpected path.  I try not to focus on the negatives, and just think about those positives. I know it will be tough for Zoe, but I just keep trying to help her see the good things about her life - not to minimize her feelings about the bad things, but just to help her see there are lots of good things too.  She and I both benefit from this attitude!

Well, I think that about covers it for now!

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.

TGIF

Thank Goodness it's Friday! Seriously, I'm just tired this week.  I've had a couple nights of bad sleep, plus a couple of nights that I didn't get to bed on time, plus the liver biopsy- adds up to a tired momma!

This weekend Zoe and I are going to Rylee's 1st birthday! We'll get to see family that we haven't seen in a while.  That will be super fun. But then we'll have to come back early Sunday so I can be sure to have baking, etc done so Zoe has all her replacement food for school.  I already made fig balls last night, so she can have those during the week for a snack, but I'll make applesauce/carrot muffins as well and maybe a loaf of bread if time permits.  So far she's been really liking her gluten free food.  This morning she asked for a gluten free bar for us to share.  Such a cute and smart kid- just when you think she's not paying attention! Honestly, before all this she really didn't have much to do with bread or most things that contain gluten- but now she's loving her gluten free muffin and waffles and such.  And the few things she liked that had gluten I've found ways to make it myself or a good substitute and she's happy.  Like we already talked about the birthday cake at Rylee's party will not be 'safe' for our body.  So instead we are bringing our homemade marshmallows and fig balls for our treats.  She was hopping around excited about that!  So, yea, I think she will fair just fine.

Monday is my appointment with the thyroid surgeon.  I guess it's just a meeting and then I have to go back for the actual biopsy?  I don't know.  He's supposed to get all my records in advance, so maybe he'll do the biopsy at the same time.  If it's like the other thyroid biopsies I've had, there's not much to it.  Just numb the throat and jab it a few times with an open needle (just fills it up with thyroid tissue).  uncomfortable, but not a huge deal and done in a minute.  So...Hoping it's all done at once.  Would be nice to reduce the time off from work I'm taking.  I REALLY don't want to lose this job!

Then Wednesday is my follow up with Dr Sperling (gastro).  I will find out what stage I'm in with the PBC.  Hoping for stage 1!!!! We'll see.  And HOPEFULLY I find out what else is going on.  Not that I want something else to be there, but, given my numbers, there IS something else and I am just about sick of tests! So I'm really hoping the biospy gave them enough information to say what else it is...

Think that's it for the Friday update. :) Hope everyone has a great weekend!

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...

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! ;)

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! :)

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 wait...so 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.

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. 

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...

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...

And so it begins...

Today I was diagnosed with Primary Biliary Cirrhosis.

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

http://digestive.niddk.nih.gov/ddiseases/pubs/primarybiliarycirrhosis/

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.

AND

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 then...so 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!