I haven't updated in awhile. I only see the liver doctor once a year now, but that might be changing. I'll find out Tuesday. I only get my blood work done every 3 months, though I only did it twice last year. It was a super busy year, and I just didn't do as well as I'd hoped.
I've still remained 100% grain free of course, but some of my other good habits of working out and morning green drinks got inconsistent. I've also been eating more sugar and legumes that I did before. All these things combined, and my numbers are up, my symptoms are worse, and I have new symptoms now of joint pain, extremely dry mouth and eyes. Not good. So back to research I went. I knew I had to step up my game in order to fight this.
So, I've decided to go to the complete AutoImmune Protocol (AIP). It's pretty strict, but I'm not ok with dying sooner than I have to, I have a family that I'd like to see grow up/old. I am engaged to be married soon and he and I have decided to do this together. He already ate a fairly strict diet, much like I do, so the change isn't exceptionally hard on him (except not having spicy food), but I will say he is an exceptional man for doing it. In fact, our whole house is AIP complaint for all meals. We have 3 girls aged 6,8 and 9 and they will not be getting separate meals.
Grains are out completely, but we do allow them some nuts, seeds, chocolate and dairy in limited quantities for their school lunches and for treats.
Today completes the first week of the AIP for us.
The first couple of days without any coffee, sugar or chocolate were actually much worse than I would have thought they would have been. Usually the worst addiction is wheat. Many people don’t know this, but wheat can cross the blood brain barrier like opiates (heroine, morphine, oxycodone). This is part of why it is so addictive. And it can cause actual, physically painful withdrawal symptoms when taken out of your diet. But I did that 3 years ago, and it honestly wasn’t that bad for me. I also have a pancreas problem, Not AI, that caused me to have to eat very low carb for a long time. So I haven’t eaten many wheat products for 16 years now (minus a short stent of thinking fresh, homemade whole wheat bread made the difference from the highly processed kind a few years ago, which it does not).
Those first few days I felt so tired, had headaches and generally felt like I’d been hit by a truck. I hadn’t expected much of anything because I didn’t think this was such a HUGE change from our normal eating, so this was a bit tough for me to accept. After about the 3rd day I started feeling better. I actually made it to the gym this week too, which is pretty amazing. Today I’m feeling pretty good as far as the diet change goes. My hip and knees still hurt, but it is slightly less than it was.
I don’t expect miracles in just 1 week.
Generally the diet is fine. Not having any chocolate or coffee is really the worst of it for me, but choosing life over coffee is an easy choice. Our daughters haven’t really even noticed much of a change, I think, except that we've all talked about it. We never had bread or any grains at a meal anyway. Just now there’s also no dairy or legumes as well. Those are 2 things we probably used fairly commonly. Today was the first weekend morning breakfast to make. We can’t have eggs, so instead we made homemade turkey sausage and sweet potato hash. Turned out pretty good, but I think the girls would have preferred my grain free waffles or an omelet…Maybe in a few months.
Besides hopefully fixing, or at least preventing further damage of my liver, this diet has had some really cool side effects too. My fiancé and I actually get to cook together now, not him cook and I bake. We’re doing it together. And it makes us feel closer. This ‘thing’ we’re doing together, for us. I REALLY like that.
So it’s been a week. I’m feeling better from the initial drag, but we probably have many more weeks to go before other things improve, but I’m in it to win it - WE’RE in it to win it! :)
For all the people I know with AI, and for those I haven’t met yet- I plan to continue to update the progress of things. There needs to be a better solution to AI diseases. Taking a pill to (marginally) manage symptoms, and even cause worse side effects is just no way to live. We exist, having moments of less pain where we can enjoy life, but that’s not enough. I actually want to FEEL better, to GET better. With the AIP and other lifestyle changes, I hope to accomplish that.
=========
For those that don’t know what the AIP is, the short list.
Don’t eat:
* Grains
* Pseudo grains
* Legumes
* Nuts
* Seeds
* Sugars (including honey, maple syrup and artificial sweeteners)
* Dairy
* Night shades (here's a good list http://www.thepaleomom.com/2013/08/what-are-nightshades.html)
* Eggs
Do enjoy:
* Meat
* Seafood
* Sea vegetables
* Green leafy vegetables
* Cruciferous vegetables
* Fruit
* Gourds (squash, pumpkin, etc)
* Sweet potatoes
* Alliums (onions, garlic, shallots, etc)
* Spices as long as it doesn’t fall into a category above
* Coconut
We also have a green, blended drink ever morning with:
* Frozen fruit
* spinach
* kale
* carrots
* cucumber
* lime
* aloe cut from a plant
* aloe juice
* coconut water
* parsley
* avocado
* ACV
* Milk Thistle Extract
With the right fruit, the smoothie is delicious.
And for those interested, besides my liver meds, these are the supplements I take (some are for AI in general, some are due to my liver disease specifically):
Fat soluble vitamins / and because my liver doesn’t process them: A, C, D, E, K and Calcium/Magnesium
Gut healing: Probiotics, Digestive enzymes, L-Glutamine, NAC, Betaine HCL +Pepsin, slippery elm
For SIBO / Yeast overgrowth in the gut: Anti-microbial, Caprylic Acid
L-lysine
Krill Oil
Biotin (my liver meds make my hair fall out)
Some Good Resources:
http://www.AmyMyersMD.com
http://www.GlutenFreeSociety.org
http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol
Wheat Belly Book by William Davis, MD
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Saturday, February 7, 2015
Wednesday, October 3, 2012
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.
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!
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!
Thursday, April 12, 2012
Children and Gluten Videos
Here are 2 good videos about gluten and children.
The First Video is more about what is gluten sensitivity and the [For all those absolutists: Not every child/person has all or any of these symptoms, and not all of these symptoms are exclusively caused by gluten] possible symptoms children can have when exposed (Makes me extra happy Zoe was breastfed, never had infant cereal, mostly fed fruit/veggies! But I think my eating gluten is what maybe caused her colic...And since removing gluten, whenever she does get a good bit, she usually gets diarrhea/very soft stools and she asks me to rub her belly while she tries to go because her tummy hurts...).
The Second Video is about how to help them and others get to be truly gluten free, genetic testing and some of the consequences, etc.
They are kind of long, but if you have time, it's worth a listen.
The First Video is more about what is gluten sensitivity and the [For all those absolutists: Not every child/person has all or any of these symptoms, and not all of these symptoms are exclusively caused by gluten] possible symptoms children can have when exposed (Makes me extra happy Zoe was breastfed, never had infant cereal, mostly fed fruit/veggies! But I think my eating gluten is what maybe caused her colic...And since removing gluten, whenever she does get a good bit, she usually gets diarrhea/very soft stools and she asks me to rub her belly while she tries to go because her tummy hurts...).
The Second Video is about how to help them and others get to be truly gluten free, genetic testing and some of the consequences, etc.
They are kind of long, but if you have time, it's worth a listen.
Tuesday, April 10, 2012
PBC Familial Clusters Involve Mother-Daughter Pairs
Whether coeliac disease leads to severe liver disease and failure is the subject of ongoing debate. Patients with chronic liver disease have been found to have a higher prevalence of coeliac disease than the general population. A study of 327 patients with 'chronic liver disease' from Sweden found the prevalence of coeliac disease was increased at least 15-fold. Patients with severe liver disease were investigated in a study from Finland. In those considered for liver transplant for gross liver disease, coeliac disease was found in four and on a gluten-free diet a dramatic response ensued in the three compliant patients and in the fourth, a poorly compliant patient, a partial response followed. A related study of 185 Finnish patients who underwent liver transplantation found eight had adult coeliac disease; four to 10 times the expected prevalence. Seven of the eight adult coeliac disease patients were non-compliant long term. The liver biopsies showed a number of pathologies; autoimmune hepatitis (one), primary biliary cirrhosis (two), steatosis, primary biliary cirrhosis (one), primary sclerosing cholangitis (one), congenital liver fibrosis (one), chronic active hepatitis (one), secondary sclerosing cholangitis following cholecystectomy (one).
There are, moreover, numerous reports of a link to primary biliary cirrhosis with evidence of improvement on a gluten-free diet, leading to the recommendation that all patients with primary biliary cirrhosis be screened for coeliac disease.
There is evidence for links between coeliac disease, often silent, and a wide variety of liver diseases particularly a mild silent hepatitis and primary biliary cirrhosis.
http://www.medscape.com/viewarticle/500797_3
And if anyone doubts my worry for Zoe:
...data suggest that first-degree relatives of PBC patients have an increased risk of developing the disease. Most often, these familial clusters involve mother-daughter pairs, which is consistent with the female preponderance of the disease...
I am justified to worry!
http://www.hindawi.com/journals/ad/2011/189585/
There are, moreover, numerous reports of a link to primary biliary cirrhosis with evidence of improvement on a gluten-free diet, leading to the recommendation that all patients with primary biliary cirrhosis be screened for coeliac disease.
There is evidence for links between coeliac disease, often silent, and a wide variety of liver diseases particularly a mild silent hepatitis and primary biliary cirrhosis.
http://www.medscape.com/viewarticle/500797_3
And if anyone doubts my worry for Zoe:
...data suggest that first-degree relatives of PBC patients have an increased risk of developing the disease. Most often, these familial clusters involve mother-daughter pairs, which is consistent with the female preponderance of the disease...
I am justified to worry!
http://www.hindawi.com/journals/ad/2011/189585/
Tuesday, April 3, 2012
A little update
So, I was thinking I haven't done an update in a while...
First, I don't know if it's just being a mom (Zoe has had a couple nights of not wanting to sleep well), or if it's the PBC, but I am TIRED! Dog tired. Like my ears start ringing I'm trying so hard to stay coherent tired. Reminds me of early pregnancy! Ugh. And also, just like early pregnancy, I have been pretty much constantly nauseous the last week or so. Last Thursday I was actually sick all night, but even besides that I just have this background noise of mild, but annoying nausea. I find if I (just like pregnancy) eat a little at a time at nearly a constant drip, that helps a little. But that's hard to keep up with. I hope this isn't my life now - comatose tired and on the verge of throwing up all the time?? Doesn't sound fun.
AND I am not super 'itchy' yet (a common thing with PBC), but I am 'prickly' all over. Hard to describe but my skin feels like it's SUPER dry or 'prickly' or something and about to itch all the time, but not itchy yet, with occasional true itchiness?? Hard to say but it's my hands, arms, feet, face, neck, belly, chest....Almost all over.
AND my eyes are having issues. Like I'm blinking imaginary 'goop' out of them. There's nothing there, but it sometimes takes a blink or two to see things clearly. May just be due to the being tired part, who knows!
I'll go in a week or so to get my Liver Function Tests done again to see if the Ursodiol is helping lower my numbers at all. Hoping we see some improvement!
Think that's about all for now.
First, I don't know if it's just being a mom (Zoe has had a couple nights of not wanting to sleep well), or if it's the PBC, but I am TIRED! Dog tired. Like my ears start ringing I'm trying so hard to stay coherent tired. Reminds me of early pregnancy! Ugh. And also, just like early pregnancy, I have been pretty much constantly nauseous the last week or so. Last Thursday I was actually sick all night, but even besides that I just have this background noise of mild, but annoying nausea. I find if I (just like pregnancy) eat a little at a time at nearly a constant drip, that helps a little. But that's hard to keep up with. I hope this isn't my life now - comatose tired and on the verge of throwing up all the time?? Doesn't sound fun.
AND I am not super 'itchy' yet (a common thing with PBC), but I am 'prickly' all over. Hard to describe but my skin feels like it's SUPER dry or 'prickly' or something and about to itch all the time, but not itchy yet, with occasional true itchiness?? Hard to say but it's my hands, arms, feet, face, neck, belly, chest....Almost all over.
AND my eyes are having issues. Like I'm blinking imaginary 'goop' out of them. There's nothing there, but it sometimes takes a blink or two to see things clearly. May just be due to the being tired part, who knows!
I'll go in a week or so to get my Liver Function Tests done again to see if the Ursodiol is helping lower my numbers at all. Hoping we see some improvement!
Think that's about all for now.
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
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
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!
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!
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...
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...
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...
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
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
transplantation.
{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...}
http://emedicine.medscape.com/article/171117-overview
http://www.med.upenn.edu/gastro/documents/LancetPBC.pdf
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! :)
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
transplantation.
{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...}
http://emedicine.medscape.com/article/171117-overview
http://www.med.upenn.edu/gastro/documents/LancetPBC.pdf
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
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
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