Saturday, May 14, 2016

Holy Crap: A diagnosis for EVERYTHING!

So...everything I've been told is a lie. And everything that has happened could've been prevented. I'm trying really hard not to think about that part. Cause if all of this kills me, I want to hunt down every doctor who I've ever seen who has said "I dunno."

Hemachromatosis is a genetic mutation. It causes excess iron to be absorbed and fucks up everything. It's something that they don't test anyone for. I'm going to cite a bunch of information. Unless otherwise stated, it's coming from here.

Iron is an essential nutrient found in many foods. Iron carries oxygen (in hemoglobin) to all parts of the body. Normally, humans absorb about 8-10% of the iron in foods that they eat. People with hemochromatosis (too much iron) can absorb four times more iron than normal.
Undiagnosed and untreated hemochromatosis (too much iron) increases the risk for diseases and conditions such as:
  • Diabetes mellitus (check)
  • Irregular heart beat or heart attack
  • Arthritis (osteoarthritis, osteoporosis)
  • Cirrhosis of the liver or liver cancer (check)
  • Gall bladder disease (check)
  • Depression (check)
  • Impotence
  • Infertility
  • Hypothyroidism (check)
  • Hypogonadism
  • Some cancers
Mismanaged iron in the brain has been observed in autopsies of people with neurodegenerative diseases: Alzheimer's, early onset Parkinson's, epilepsy, multiple sclerosis, and Huntington's disease.

In their studies, doctors are used to this being found in older men, so sometimes they just don't connect the dots, but this is something that is apparently becoming common. It's most prevalent in caucasians, but can effect any ethnicity.

Hemochromatosis is believed to affect over 1 million Americans according to the Centers for Disease Control (CDC). This statistic means that 1-250 Americans have full-blown Hemochromatosis and 1-8 Americans are carriers for the genetic make-up. Below are video stories of patients that have immense experience with Hemochromatosis. 

 There's a bunch of terminology about the genetics...coming from one parents or two...and I don't care so much about that stuff. I would bet all the money in the world that my dad had it due to his health conditions and my mom and her side of the family are all getting tested for it. I'm also having my daughter checked. early detection and management can prevent her from having to go through everything I've went through.

Symptoms of Hemochromatosis

Chronic fatigue and joint pain are the most common complaints of people with hemochromatosis. For this reason, the complete diagnosis is often delayed because these two symptoms are commonly seen in other diseases. Pain in the knuckles of the pointer and middle finger, collectively called “The Iron Fist,” is the only sign or symptom specific to hemochromatosis. However, not everyone with HHC experiences the Iron Fist.

Patients often complain of the following: 

Some complain of the following symptoms, although these indicators are not always specific to hemochromatosis:
  • Lack of energy (check)
  • Abdominal pain (check)
  • Memory fog (check)
  • Loss of sex drive
    (check)
  • Heart flutters 
  • Irregular heart beat 
When symptoms are associated with hemochromatosis, these usually begin in men in their late 20’s to early 30’s. In women, symptoms usually start about 10-15 years after they stop having a period due to menopause, birth control pills, or hysterectomy. Consider using our Symptom Logs to monitor your symptoms of hemochromatosis.

DISEASES THAT CAN DEVELOP IF LEFT UNTREATED

  • Bone and joint: osteoarthritis or osteoporosis in knuckles, ankles, and hips
  • Liver: enlarged liver, cirrhosis, cancer, and liver failure diabetes
    (check)
  • Skin: abnormal color (bronze, reddish or ashen-gray)
  • Heart: irregular heartbeat, enlarged heart, congestive heart failure
  • Endocrine: diabetes, hypothyroidism, hypogonadism, (infertility, impotence), hormone imbalances (check)
  • Spleen: enlarged spleen (check)

One thing that has came up on several of the websites I've been looking at is that it usually occurs in women after menopause. When you're no longer having a period, you're not losing the iron that you would through menstruation. Why am I period talking? I got my first IUD in either late 2007 or early 2008 and I stopped menstruating. I was diagnosed with Cirrhosis in 2009/2010.I don't know if it can happen that fast, but damn if that's not coincidental.

So there's a bunch of medical junk. It doesn't change the plan at all, but I've gone for 29 years of my life having a thing I didn't have a name for. Now I do.

On an unrelated note, but send some comments my way. I would like to write more, often, but I generally struggle with knowing what people want to know. No subject is really off limits. Writing is one thing that I really enjoy, and I'd like to have more of it in my life.

Thursday, May 12, 2016

Update and Some Fun Stuff.

First, thank you so much for your generosity in the t-shirt sales! We're still selling them here.

So...here's the all around everything. (I've been bad at writing, but there's not really a lot going on these days.)

On May 31st, I'm going in for Surgery to have the tumor ablation (KILL IT WITH FIRE!!!).

-Dear fellow campers, I insist on still coming for the weekend camp-out, but I'm (Actually Mo) is going to need a lot of help with getting the tent set up and all that jazz.-

Basically, It's an overnight or two in the hospital to make sure everything is good. If I were normal and healthy otherwise, it'd be an outpatient procedure, but with the Liver Cirrhosis, I bleed easily and don't clot well. They aren't removing the gallbladder (*cries*), because that could present complications if I find a donor.

Speaking of donors, the very first (to my knowledge) person got tested yesterday! Of course, I don't have any information other than that yet. I'll be honest...I was starting to get concerned. First, this person had told me about this, and I completely forgot about it. (My brain is not functioning very well lately, but more on that in a minute) But I had several people call to tell me they weren't a match because of their weight. In my mind, the people who were telling me (specifically) freaked me out because none of them are people I would call overweight. (For anyone reading this who is one of these people, please don't be offended.)

Now my potential donor did tell me that Angela, the donor coordinator, said that there has been an outpouring of support and folks who have called to inquire about donating. From the bottom of my heart, I cannot that you guys enough for being so freaking amazing.

Funny story. When I was first diagnosed with Liver Cirrhosis (5+ years ago), I was talking with my mom about how great my friends are and that I didn't feel like I had a lot to worry about in regards to finding people willing to help, both with donating and with support. She's been a nurse for 30+ years, and she's seen a lot of folks with End Stage Liver Failure, and have seen people who are all gung-ho in the beginning that seem to fade away with time. I told her that my friends aren't those people. In February, she got to meet a lot of the folks I regularly spend time with and she admitted that she stood corrected. So thank you all for everything...Truly.

Also: My potential donor has agreed to do a writing of her experience. I'm very much looking forward to it! I'm thinking that I might occasionally, as part of the process, ask folks around me write some things to put here on the blog, so if you'd like to be a part of that, please do! I was thinking if ya'll have some stories about our friendship, those would be great! Feel free to send anything to me.