health update Spring 2018

Well…. I dont know what the hell happened but my weight skyrocketed. Like, out of nowhere. Energy plummeted and I am now pushing 190 lbs.

Now I am not a lettuce-eating bunny, but nothing has really changed in my good (or bad) habits to justify this weight gain. Since I went to the hepatologist in December I put on almost an additional 15 lbs. Almost a lb a week since December.

I got another fybroscan and my density numbers are lower than December (yay) weight is UP (boo) and blood tests are high normal, which sucks but my bloodwork does cycle that way. In light of that, there is nothing glaring in my results.

Being sluggish is not normal for me. So that is something I am coping with. I am making a conscious effort to give up sweets and up my water intake.

Dr Swain is referring me to a clinic to help people with diet and fatty liver. What the hell…. I will try anything! Stay tuned!

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Vitamin E for liver health and a hepatologist visit update

December 21, 2017 I had a visit with my hepatologist and quite frankly, I was nervous about going because 2017 a lot has changed in my body. I have put on quite a bit of weight, Im working too much and not really prioritizing my health, and have caught myself more often missing my morning dose of prograf. December I caught a really bad cold and probably had one of my top 3 worst cold sores ever, so my immune system must have been shot.

The last time I went to the hepatologist sox months ago, in addition to AIH, I also have fatty liver, so he recommended I watch my weight to get that out of control. Even though I am concerned, I just have not prioritized that weight loss, and now six months later, I am going back heavier then the last time he gave me heck.

Last visit, He suggested at that time that for liver health, I could drink as much coffee as I want, and that I also take vitamin E regularly as well.

The high dosages of coffee I implemented right away, with ease and enthusiasm. The vitamin E, like my morning dose of Prograf, the success was fleeting and eventually tapered off.

What is interesting in my results though, that despite some weight gain, and missed dosages, my coffee intake was definately upped. I literally have a cup on the go all day at work, minimim 4 cups a day, sometimes more, my blood tests improved, and my fibroscan also inproved a few points too. I was 5.-something, and I am now 4.-something.

So this has me a little excited! So the coffee consumption I will continue with, and I am taking Vitamin E twice daily.

We’ll see how my next visit goes!!

I am not giving any medical advice here, just sharing my personal story and personal results. Everyone’s body is different!

Fallen Angel – Meredith Lee

Today, was seriously a wake-up call.

I went to the funeral of a gal who I have been acquainted with through our volunteer activity with Canadian Liver Foundation.  I am not going to use her last name, because I do not want to go through the rigor-moral of getting consent when the funeral was …. today.  But I will say that she was only 34 years old when she passed.

My interactions with her were few, but when I first got involved with CLF in 2008, she was one of two actual humans I met with AIH.  Prior to that, I had the condition already for many years, so it was an exciting to talk to her about her experiences. She had a transplant (whereas I haven’t), so her story was in fact more eventful than mine, but post transplant, she was doing well and living her life.

During the years between 2008 and 2015, every time I saw her, she was a picture of health.  She was extremely active and loved the mountains.  She was a beautiful woman with a big smile full of straight teeth, vibrant skin and bright eyes.  We played in a golf tournament for CLF together and most recently, saw her at a CLF gala in November, and she was her happy, larger-than-life self.

I do not claim to know her extremely well, or even know all the details of her death.  Under the circumstances did not want to ask a lot of questions since it is pretty raw today.  However, in some of the details, I got a wake up call.  I wanted to share with you some high level facts, that I am sure only tell a small piece of the full story.

If you are going to have liver disease, AIH is the one you want.  For most, the treatments are effective and the prognosis is good.

Based on what I was told, there was two things that led to complications for her.

  • About 3 years ago, she was in an accident.  Sadly, she received a significant injury to her liver.
  • Also, I cannot confirm this, but I was told that she was not consistent with taking her prescribed medications for her liver.

She was in the hospital for 5 weeks leading up to her death.  The medical team fought like hell to save her but it was too far gone.

I am sure the story is not that cut and dry, but what spurred this article was to give myself, and those of you living with AIH a reminder to TAKE YOUR MEDS.  We are not invincible.  And more importantly, asymptomatic for many (like myself).  Take your pills.  In case you didn’t hear me the first two times – take your dang pills.   There is so much in life that we cannot always control, such as getting this disease in the first place, or getting an injury in a car accident.  Taking our prescribed medication we CAN control.  Do it.  Just…. do it.

Rest in Peace Meredith. ❤

Wonky Symptoms – related or unrelated to Autoimmune Hepatitis?

Feeling foggyAs someone who has lived with autoimmune hepatitis for over 20 years, I feel completely normal most days.  Often, it is not a part of my daily consciousness that I have this disease running in the background.

Where I notice wonky symptoms the most often is in times of stress, like as of late.  With the current economic conditions in Calgary due to the rapid drop in oil prices, myself, along with several of my IS Consultant colleagues have been laid off.

Truthfully, earning a living and supporting myself is the least of my concerns.  I have an ecommerce business and an ebay store that generate enough for me to live on.  I have also found some part time consulting work to help top up any ebbs and flows in my business.  I am also married, so I am not alone in this journey.

The stress comes more from change, uncertainty, and quite frankly the negativity around this whole situation.  Also, even though I was not marched out of my job, I had notice and an adjustment period to (attempt to) transition, I have never, ever, in 45 years been unemployed.  And I was gainfully employed, so my part time income covers everything, but very few extras compared to my previous lifestyle.

Stress for me has been constant since I found out on November 18th that my contract was ending in January.  Though November, I have had that adrenaline surge of panic, accompanied by resumes going everywhere, reaching out to personal and business contacts, and long discussions with my husband about plan Bs and Cs.

Some of the symptoms that I experienced are not typical stress-type syptoms that I hear about.  Most that I had were neurological, such as:

– low grade dizziness and vertigo.  I had enough of this feeling that I felt uncomfortable, but not enough to keep me home and relaxing

– I felt like my hands were not connected to my body.  When I was texting, I had to really look at my hands because it felt like my movements were unnatural

– I had stomach issues (which is more common with stress I believe), no appetite, trouble eating, low grade nausea, diarrhea

– I had symptoms that felt similar to postdrome silent migraine symptoms.  When I do get silent migraines, I usually have that heavy foggy feeling for a day before I feel normal again.  I had that feeling for well over a month, and daily.

– On December 2, 2014 I had what the doctors suspected was a TIA or a Silent Migraine.  For 10 minutes my right arm became paralyzed for about 10 minutes.  It was like a lightswitch.  My arm turned off wtihout warning.  I was so disconnected from the symptoms that when my arm hit my side, limp and lifeless, I thought my cat flopped up against the side of me. By the time the ambulance got to my house my arm was working again.  I had a month of follow up tests, MRIs, cat scans, heart tests (echo) and everything came back normal.  No evidence of any brewing health issues, and certainly no evidence of stroke.  At 45 years old with no issues with my heart or brain, I was hardly a risk for stroke.

– Reoccuring hypertension.  I had no prior history of high blood pressure, but a few trips to the doctor had me rushed to emergency for severe hypertension, and when I arrived my heart rate was normal and then sent me home.

Even though these symptoms are likely a result of stress, I wanted to document them in here, because I never know how my wonky symptoms may relate to others who have AIH.  Over 20 years I have found that many other people with AIH experience thyroid issues, neurological symptoms or silent migraines as a part of having an autoimmune condition, so I don’t make any assumptions.

The good news here, is that I am functional.  I am still productive, and going out, seeing friends and doing all the things I do when I feel normal.  These symptoms vary in severity, and before my layoff, I still got out of bed, got ready for work and went downtown.  They were debilitating.  But they are happening, and running in the background during this time of stress.

I got the news November 18th, and I write this on February 6th, so this has been coming up on three months.  Much like when I was diagnosed, doctors have tested me inside and out, backward and forwards and everything is normal.  Yet, I feel far from it lately.  The good news, like other episodes of wonkiness, this will pass.  It always does!