Some really, really great news! (and a tiny bad -TMI-)

So, we'll give the good first so that anyone who WANTS to read my TMI can, but everyone else can pass.

So far 3 folks have completed the Donor Evaluation. (There is a mystery 4th, who hasn't revealed themselves to me, which is fine, except that I'm insanely curious)

The first two really wanted to be a match, but it wasn't in the cards. The third girl stopped by today. She is all but a match. So here's the deal though. She has 4 bile ducts. 2 is the standard. Because of this, she is delegated to backup/emergency donor. If something happens that I suddenly need a transplant or I'll die...they'll work with hers. In every other way, we are a perfect match. But the surgery would be more complicated for both of us, which is why they'd rather not if they don't have to. Unfortunately, this means more waiting. And if you haven't gathered, I'm not a very patient...patient.

I'm very fortunate to have so many people WILLING to call in to find out the process. Angela (the donor contact) said that she's never had so many non-family members call in for one person. You guys are seriously the best.

Interestingly, though, I'm going to be curious when I see DrG on Monday. He keeps asking me about whether or not I have donors. I guess the two teams are entirely separate and don't communicate at all until there's something to communicate about.

Something that is also kind of bad, but not the TMI thing is that I'm developing a sort of agoraphobia. It's becoming increasingly difficult to want to leave me house for anything. I'm not afraid to leave my house...It just takes so much effort to get ready (showered & dressed), driving takes energy if I have to do that, regardless of how I get there, bumps have been terrible since my body hasn't recovered from my surgery in May, and then I get to wherever I'm going...and I know I have to do the return trip...Being social is super exhausting right now. Depression is winning right now and I hate it.

Now is the time to not read on unless you REALLY want to know all (Even the gross) you can about this process.

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The bad is...my ammonia level is high. Normal is >33. Mine is currently 56. When I had my last "episode" (I'll explain), it was 75.

So when my amonia level gets high, I kind of...lose it. I start being repetitive in speech or in movement or both, and I don't know who anyone is if I've gone deep enough. It's hard to get my attention. I don't respond to my name(s). It takes some form of physical contact to get my attention.

This could happen. Any time. Anywhere. So far it has happened twice. Once was years ago, the other time was this month.

BUT!

There is a solution. Ammonia leaves the body via bowel movement. If I am close to you, you probably already know that I don't poo (<---this is the only word I felt was the least icky) very much. They want me going 3-4 times a day. I don't think I go that much in a week. So...I have to start pooing. And I'm very unhappy about this.

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.

Backgrounds and Beginnings

When I was 2-3 years old, my Pediatrician discovered that my liver was enlarged. It extended below my rib cage. They monitored it. He suspected it was just something that I would grow into when I hit puberty and since it wasn't causing any problems, he left it alone. When I was 10, I was taken into Children's to have a liver biopsy that came back as "inconclusive" for anything they expected to find.
As I switched from a Pediatrician to a family doctor, everyone (including myself) just kind of forgot about it. It wasn't causing any issues. It was still enlarged (at least to my knowledge), but it was invisible.

I continued my life without any restrictions, which means I drank, had sex, experimented with drugs...things you do. Sometime in 2010, I went to the ER because I was having an immense amount of abdominal pain. They always think it's kidney stones. It's never ever been kidney stones, btw. So they did an ultrasound to look for stones. Then they sent me home. Couldn't figure out what was wrong, so they blamed it on dehydration.

I went in a few months later for my yearly checkup. My doctor said "That last ER visit, they found Liver Cirrhosis, so we'll need to get you a referral." I was flabbergasted. He thought I already knew (someone was supposed to call me), and he was very casual about it. I didn't know much about it, other than it was normally found in old people who drank too much and that it turns people yellow. We had a conversation, but it wasn't something I was too worried about.

I got in to see a Gastroenterologist. Pretty much those guys follow the track of organs from esophagus to colon and every organ in that connection. That was bomb of a day. He tells me Liver Cirrhosis has no cure outside of transplant. I was freaked out.

They did another liver biopsy and a few other tests. I was diagnosed with Cryptogenic Liver Cirrhosis. Cryptogentic is just the doctor term for "We have no idea."  I also had some other symptoms of Cirrhosis on the inside.

I went through a transplant evaluation where they told me I was too healthy for transplant and they told me to take care of myself...stay away from alcohol, and salt, and sharp pointy foods and anything that's hard for a liver to process. They also said it would be 5-15 years before my liver was bad enough to do anything about.

Almost 6 years later...I told my mom I needed to get re-hydrated at the ER. This is something that I'm really susceptible to. Any stomach problems cause me to loose a lot more fluid than my body can reproduce quickly, or that I can keep down.

She takes me in and the ER doctor was just the best. He diagnosed me with pancreatitis, and admitted me. Now, the next day, I was determined to get home. I mean, who really likes being in the hospital?

I went home, but ended up back in the ER the next day. They admitted me again, and started running more tests, including a CT scan. In this scan, they determined that my liver was much worse than when I was last checked and that there was a mass in my liver.

Once I got out of Sewickley, they told me to get in right away with the Liver guy at UPMC. Dr. G, since he's gonna be a bigger part of this...may as well give him a name. I got in to see him pretty quickly. He explained that I have primary hepatocellular carcinoma. Then he ordered an MRI.

He explained that for my MELD Score would be increased due to the cancer and that I was now be qualified to get on the list.I had the MRI done and this is what I know.

My cancer is 1.6 or 1.8cm. The tumor needs to reach 2cm before it qualifies me for the "bonus points". My MELD score is currently a 7. The bonus points will push me to 20+ When the tumor hits 2cm, I will have surgery to kill the cancer cells (Tumor ablation).

In the mean time, Here are some important dates:
Feb 22-26 - Transplant Evaluation
Mar 7 - Tumor measurement and followup with Dr.G