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.

Life is astounding.

So, I don't know how many folks are on the list. I know the first two did not qualify. It was initially very disappointing, but I've gone into this with this mantra "So be it." and "Everything will happen the way it is supposed to happen."

I've been neglectful, sort of, but not really. There's not a lot going on right now. Days are good and bad. I'm sleeping a lot. The Shrink (who I've decided I love) seems pretty concerned about my mental health through all this. I'm not gonna lie...suicide has been on my mind a bit. Not because I want to die. Living is just super hard right now. I know it'll pass. I'm just overwhelmed.

My partner, Mo, is moving out. I'm both really excited for him, but also kind of worried about living alone. I think I'll be really great in the beginning, but I think with time that will fade. Who knows?

I'm going camping with my crazy wonderful family this weekend. I'm actually procrastinating packing at this very moment! (I hate packing. I always have.) Though, I'm behind on even my own level of procrastination. But I'm really excited about the trip. Sarah (my daughter) is coming with me. This will be our first legit vacation together...away from electronics. I think she's gonna run me ragged...and I'm going to love every minute of it. All her smiles, and her giggle...I can't get enough of her.

Anywho, off to pack...

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.

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.

 

And the fun(draising) begins!

A little back story.

"Duckie" was a self given nickname that took on a life of its own. People have gone years knowing me by no other name.

"Team Duckie" came from the creative minds of family. Then the idea of shirts was born. I'm super fortunate to have a lot of creative minds in the family. My adorable sister in law (seriously guys, she's amazing) is an artist. She designed the logo (clearly, the cutest logo ever) and now we're selling shirts!

I'm working with another friend to get some other things off the ground in the fund raising appointments.

Here's some of the health stuff. I was officially listed about two weeks ago. I happened to be in the hospital at the time. A common side effect of all of this is swelling. In about a 11 day period, I'd put on about 35lbs. I was going to see my hepatologist, Dr.J (whom I love to pieces), and she immediately admitted me. My blood pressure had tanked from the diuretics they had given me in the ER about a week prior. My kidneys went into overdrive...just caused a bunch of issues. The swelling is still happening, and they're giving me super low doses of Lasix to try to get the weight off without doing damage elsewhere (namely, the kidneys). It's likely that in the future, I'll need to actually get drained of fluid once it his my abdomen area pretty hard. Sadly, I think I'm almost looking forward to that.

I appreciate all the love and blessings I have in my life, and the people who make life so much more bearable. I love you all so much. Thank you for continuing on this crazy journey with me. In the words of the late Prince...

"Dearly beloved, we are gathered here today to get through this thing called life..."

New News

(For the record, I thought I'd be much better at this blogging business than I actually am.)

I saw Dr.G on Monday to discuss my gallbladder being removed as a separate surgery and to talk about my weight gain. I'd gained about 40lbs in a week and a half-ish.

They did a CT Scan to check out the gallbladder. Now, I'm freaked about all of this. I know what swelling means to someone with liver cirrhosis and it just ain't good.

Dr.G comes in and informs me that my tumor is now 2.1cm and we can do this transplant as soon as June/July, if I have a donor.

That is the news. I'm still completely freaked out about it...and 100% not ready.

The Evaluation

So this is all going to be pretty straight forward stuff. I'll try to go by day and appointment, but I can tell you they fried my brain pretty good with information.

Monday
8a Pharmacy
I met with the pharmacist(s). There were 3 of them, 2 were residents. We went over my current medication list, medication routine, anti-rejection meds, and concerns I had regarding pharmacy things.

830a Labwork
They wanted a LOT of blood.

9a Education
My Transplant Coordinator was the the person giving the education class. Overall, I mean...she pretty much had a power point and read from it. It was all useful, but I wish there had been more to it. It felt like a waste of an hour because she also gave us a copy of the slides and I could've read that myself.

This was about the point, though, where I started feeling overwhelmed. I was clinging to my transplant binder of papers.

10a Social Work
So the Social Worker pretty much just wanted to know about who was going to be my support system during and after transplant. I was happy to report to her that I have an amazing support system. I mean, hello. Have you met my people? They're awesome.

11a Behavioral Health
Something that should be said is that there have been parts of my life that have been rough. I've been in and out of therapy since I was 10. We had a lot to cover, and we covered a lot. I was very honest with her about everything. The conclusion? I'm severely depressed. Go figure.

As a followup, we spent an hour or two on the phone on Monday to fill in some of the gaps of information that she needed, and had a few questions about some of the things I told the other folks. I wasn't trying to hide anything from her, but everyone asks a lot of the same questions and at the end of it, they all compare notes. I think her and I had so much to cover that we just didn't get to some of things she would have asked, but other people had.

She kind of reminded me of a very skinny version of Edna from the Incredibles, but without the accent.

1p Hepatologist
I loved this woman. She was adorable and pregnant. We talked about livers.

2p Transplant Surgeon
First, he was hot. (I had to get that out of the way. It's important.) Second, pretty much most of the information that I had has changed.

Liver transplants can use a live donor. That is still true. However, you no longer need to match blood type or rH factor. A lot of it has to do with vascular systems as far as matching goes. So that's good news.

The cancer "bonus points" (which I learn are actually called "exception points") are now awarded differently. I was originally told that I would be placed on the transplant list when my tumor hit 2cm at a MELD score of 22 and increase by 3 points every 3 months. Now I get placed on the transplant list at my natural MELD score (which I found out is 9) and after 6 months, my MELD score will go up to 28. This system doesn't lose you any points, and gives them the opportunity to see how fast the cancer is growing. However, I'm not very patient. 6 months feels like forever right now.

I questioned him about an article that I had read that said live donor transplants were more risky (specifically in relation to UMPC). He explained that it's a high percentage drop. Yes, they had lost 2 patients who had had live donors, but when you're only doing about 14 of those a year, 2 results in a higher drop in percentages. Made sense.

Tuesday
Tuesday was test day. I had an ultrasound, a CT Scan, X-rays, an EKG and a DSE Stress test. The medication they used for the stress test had an incredibly bad impact on my blood pressure, so I have to go back for a Nuclear Stress Test.

Wednesday
9a Finance
I have some kick ass insurance. My transplant will cost me $21 (another $21 if I have a live donor) and $6 for the Anti-rejection meds. My mom breathed a ginormous sigh of relief. There are still other expenses, so there will still be fundraisers, but the cost of the surgery (exorbitant) will be covered.

930a Labwork
The vampires weren't as hungry that morning. Only 2 vials.

(Overall result of labwork, the only concern they called about right away was my Vitamin D levels. They were super low.)

10a Dexa Scan
This was the only test on Wednesday. It was a bone density scan. No biggie.

12p Nutrition
I HATE NUTRITIONISTS. Or more rather, I love food. I'm slowly altering my diet to reflect a low carb, low sodium diet. So basically, applesauce and lettuce. That's not true. I need to learn how to cook.

To finish off the absurdity that is a transplant evaluation, my mom and I went to see the Blue Man Group. They were awesome. So so awesome.

This got progressively less straight forward, but it's late/early.

March Schedule
2nd - Endocrinologist
7th - MRI and Dr. G (Liver guy)
10th - Nuclear Stress Test
11th - Local Oncologist Dr. S
14th - OBGYN Clearance Dr. W
17th - Local Therapist
18th - PCP Dr. S
24th - Dental Clearance Dr. B