best intentions.

Today is the last day of November and I had every intention in the world to make a very informative infographic for Alpha 1 Antitrypsin Deficiency due to the fact that November has been designated an awareness month for it (November seems to be a catch all month for a lot of random disease awareness.)  I think when Ki was diagnosed I was too tired and overwhelmed to even bother explaining to people what it was… I was just kind of like “well if you care, look it up.”  I mean I explained it to our immediate family and friends but as far as things like Facebook and stuff… yeah, just too exhausted.

When Alpha 1 progresses to liver disease it is kind of hard to even talk about the Alpha 1 part of it because liver disease is just shit.  One of the nastiest ruthless diseases out there.  Cuz your liver does every fucking thing.  And most of us spend our entire lives taking it completely for granted.  Alpha 1 liver disease is not any different than liver disease caused by anything else, even Alpha docs will tell you, once it’s liver disease there isn’t really anything we can do… just look out for your lungs in the meantime.

Liver disease happens when the liver gets scarred up and unable to function.  This is called cirrhosis and I hate that fucking word more than any other word in the world.  It even sounds every bit as ugly as it is.  And it’s mostly only talked about in terms of alcoholism.  But there are many many reasons for cirrhosis, it is just until you experience one of them intimately you just never really learn that much about liver disease and its causes.  In the case of Alpha 1, cirrhosis is caused because the liver makes the antitrypsin protein that your body needs to protect your lungs, however because of a genetic defect the protein is misfolded and cannot escape the liver, there it builds up causing the tissue to scar.  That is what cirrhosis is, your liver slowly turning into just a mass of scar tissue.  It really makes the liver seem like a dumb organ doesn’t it… it has an amazing ability to regenerate and yet it scars itself up as a mode of protection.  There’s also a version of Alpha 1 where the genetic defect causes the liver to make no version of the antitrypsin protein… in this case these people will never be at risk of Alpha 1 liver disease but since they don’t even have the slightest bit of protein to protect their lungs, they are pretty much guaranteed lung disease.

As far as the lung aspect goes I thank God every day we do not have to deal with that.  His lungs have done good so far and don’t show signs of damage.  Once he gets a new liver he will essentially be cured of Alpha 1 since the new one will make antitrypsin correctly.  His uncle suffers from lung disease caused by Alpha 1 and despite the prolastin infusion which is the only current pharmaceutical approved for Alpha 1 (In the US… I know some of our European alphas are not so lucky and have zero approved treatments), his disease continues to progress… it can help but unfortunately it doesn’t slow the progression of the disease for every body and can lead for the need for a double lung transplant.

So one little genetic defect causes all this.  And it’s estimated 25% of Americans are carriers. The rate can be much higher in some European countries where it is believed the disease originated from our ancestors.  It is also believed to be one of the most under-diagnosed genetic defects in medicine.  It is the number one reason for pediatric liver transplants.  Usually the liver issues show up in babies and young children, although most go on to recover function and don’t have anymore issues… but then it goes to show up again in adults, and it is believed that many alphas are liver affected at the time of death (assuming they live otherwise normal lifespans) but because our livers are so amazing, most people don’t get the point of having cirrhosis.  It’s also believed to be a major cause of liver cancer.  Gee, what doesn’t this disease do eh?

It’s a shit disease.  And I’m not even speaking on the lung affected population who struggle with COPD because of this shit, which is another awful hellacious disease.

Someday, when my husband is on the road to recovery because I know with all my heart he will beat this shit, I want to go out and talk to people about this disease, I want to spread knowledge about it, I want to help others suffering with it because no one should have to go through this alone.  It’s awful and scary and frustrating and still so misunderstood.


I will probably regret going out and purchasing $80 worth of supplies to paint the bedroom.  I just really super hate the color peach though.  It reminds me of my aunt’s house she had when we were kids, she painted every room fucking peach.  It was dreadful.

My whole entire life I have wanted a purple and blue bedroom.  So it’s going to happen.  I masked off the window frames tonight and should easily be able to paint those in no time flat.  Then I think I’ll do the ceiling, then the walls.  I haven’t been able to unpack the bedroom bc I know if I do I’ll never get around to painting it.  And that can’t happen, because peach is depressing.

weird feelings

I stalk the Organ Procurement and Transplantation Network several times week.  It contains all the data on transplants including center data about the waiting list, how many are added, fall off the list, and transplants.  It is getting to be what I call “transplant season”… the time of year that the amount of transplants taking place goes up dramatically.  We have learned from our support forums that during the holiday season there are more deaths leading to more organs leading to more transplants. It’s kind of morbid feeling to feel positive about a thing such as that, to think of a family losing their loved ones especially this time of year is heartbreaking, but at the same time… if these deaths were going to occur any way, at least they can give the gift of life to someone else.

Our center, which contains a smaller list than many other transplant centers in the region has been listing many people as the end of the year draws near.  Every time I see more people added to the list… especially those with higher MELDs and thus sicker… I just feel a twinge of what I guess you could call jealousy.  I know that they are higher on the list, they will be transplanted first.  Logically I know they obviously deserve a new liver over less sicker patients but it doesn’t erase the feeling because feelings are rarely logical.

There is a guy on one of our support forums, he is at our center and has gone through a bunch of crazy shit in order to get listed.  He is listed in two different states in two different regions, the second being recently added to the list here.  Because of his condition and his higher MELD I know he will be transplanted very soon, probably before the end of the year.  I am fucking jealous. There’s no other way to put it.  It just is that.  It makes me feel a bit shitty of a person yes.  It makes me feel weird.  It just part of the territory of all this I suppose.  A bunch of weird conflicting shitty feelings.

That’s probably the reason I have difficulties participating in our support groups… both our real life ones and our online ones. All these weird feelings, especially being on the wife-caregiver end.  I feel like nobody can possibly even begin to grasp my emotions and I just end up getting pissy.  People will give me the most well-intentioned advice and it can just… completely rub me the wrong way and I’ll be shitty about it for days afterwards.  And then there is the other problem of just finding shit too depressing.  That’s mostly the online ones.  A caregiver support for liver transplant group got to be too much.  People dwelling on every single negative thing….. give me positivity… give me a reason to get through the hard times…. damn.

a reintroduction

I don’t know what draws me back here.  My new “blog” is technically my tumblr and although I do occasionally write there… I don’t write like I have done here.  This has always felt like a diary to me whereas tumblr is like a fast paced spew out random thoughts thing.

There is an ungodly amount of bullshit that has happened in the time that I’ve been gone from this blog.  Including things I just don’t think I will ever be able to talk about.

Maybe in time I will write a little bit more about all the missing aspects of this blog but the biggest thing to mention is that my husband is now on the UNOS waiting list for a new liver.  Officially listed.  Officially waiting.  This is obviously huge and when the time comes a new organ will change our lives dramatically.

After some hospitalizations this summer, Ki’s GI finally agreed that it was transplant listing time.  If it wouldn’t have happened when it did I would have become irate with a man I otherwise liked very much.  But enough was enough truly… an alpha 1 liver does not get better, does not stabilize like some other forms of liver disease… which let us be honest here, the only type of liver disease that has the potential to really stabilize is that caused by alcoholism IF the alcoholic quits drinking.

We were then transferred to the ‘official’ liver clinic to a hepatologist that specializes in transplant patients only.  That made it all feel very real for certain.  And then they set up the appointments for transplant testing and that was all… so much a blur.

In my head I had this idea of what the transplant testing would be like.  I would gather around my family… have them come and show support.  The testing process would be serene and empowering for him, I would make it that way.

Instead he and his mom left the night before and I went down the next day.  I had a massive meltdown the afternoon I left and sat in the truck and hyperventilated in a parking lot for 20 minutes before I calmed my ass down.  The day of testing I arrived at the hospital separately and missed the psych eval with him because my phone had no service and I didn’t realize it until restarting it and getting a slew of messages from him… it was just me, him and his mom…. the social worker eval made me insanely nervous because he kept looking like he was going to pass out during it… everything was driving me crazy.  I was so upset, because I felt like… I should have made this better for you in some way.

And then the wait.  The fucking wait to find out if he would be listed.  There was nothing indicating he wouldn’t be but still… you kind of sit on pins and needles with every single ‘what if’ banging around inside of your skull.

The day he got the call he went outside to take it while I paced around nervously inside of the house.  It was only when I heard him begin to ask certain questions that I let myself believe that it would be real.  When he came inside and told me I just hugged him and cried.  Happy tears, anxious tears, hopeful tears, tears that have been held in for so long awaiting this hope.  Then came waiting for the insurance approval which took about 2 weeks before officially being put on the list.

We’ve been told the average wait time is 6 months.  We are very very lucky to live in an area that currently has a shorter wait time than other areas of the country.  His meld has still stayed pretty low all things considered though so I don’t know how all of it will play out, but at the time he was listed he was told he was third on the list for his blood type.

We’ve had low sodium drama again this fall but so far his doctor has managed to keep him out of the hospital by watching the situation very closely from home, which I am thankful for.  Hospital stays always suck the life out of us and I need as much life not sucked out of me as possible in order to prepare for this whole transplant thing.

The other big thing… was moving.

To be quite honest, to move again was devastating in a lot of ways.  I felt like I had “made it” so to speak when I had my house in the country.  That is what I always wanted again after all.  Even when we lived in tiny house, I was very happy there.  But then Ki insisted that we move down the road to the bigger house that our landlord was renting.

That house never really felt like home.  Granted, things went to hell almost immediately after moving in but it always felt off to me, like it had bad energy or something.  When we left the only thing I could honestly say I would miss was the privacy and the giant yard but nothing else I felt attached to.

It just got too expensive to stay there and so we waited rather patiently while still looking as a lady in my old hometown where I spent the first 10 years of life was renovating a house.  When I first came to look at it (Ki was in the hospital at the time) I thought there was no way in hell she would ever get it up to my standards, it need A LOT of work.  She didn’t seem to think we would be waiting for her to finish but I told her we would keep in touch.  And that we did… all the way up until we decided that we were going to take it.  October rolled around and the beginning of the month we moved.

So here I am, starting again in the small town that I lived for the first 10 years of my life… living on the street I spent many years visiting my aunt and playing with my cousins on.  I literally live a few houses down from my dad which feels crazy because I haven’t been so close to any family since becoming an adult.  I even live right next door to one of my cousins.

The house is lovely.  Being in town again is weird but it isn’t terrible because I have a nice big backyard and our land lady is very carefree about us being here… very laid back do what you want type of person.  We pay $200 less for rent… no deposit, no pet deposit.  I mean that alone was such a huge blessing.  This place is cheap for this town even, because there is a private college and most people who rent, rent to students at a rate of $200-300 a room so a 3 bedroom house, they almost always ask $900 a month here…because they can get with with the college students/roommate situation.

At any rate… that’s been life in a nutshell this year… Ki’s health things… moving.  And now 2015 is almost gone and I can only imagine what crazy shit 2016 has in store.

I just pray for my husband’s health.  I pray he gets transplanted soon so we can have keeping a new liver healthy being the health focus instead of keeping a dying liver stable.

My faith has never strayed there that everything will be okay.  That he will be okay.  Over 2 years ago I felt this strong feeling that it was going to work out.  I still believe that with all my soul.

I haven’t been here in a long time but it hasn’t been as long as I thought. I thought about it bc I remembered holidailies and realized this was the first year I totally forgot since I started.  Kinda sad.  Maybe it’s time for me to come update this thing…

dear universe,

Have I said how lately how grateful I am that my husband continues to be in good health despite the labels his body now carries?  Because I am.  Ever so grateful.  I know I don’t always show it.  Sometimes I am just afraid that I will jinx it.  I know that isn’t really possible, but I’m kind of superstitious.

I know I complain a lot but sometimes I just need to get it out so I don’t carry it with me beyond the words that I spew out.  That is why sometimes when I am alone and something falls on the floor… or I can’t find something… the outburst is more than what is called for, because there are little explosions that occasionally go off and then it takes a little while for them to surface, and I am wise enough to let them out when no one is home to hear.  Except sometimes I think I probably scare the pets to death.  I always seem to remember that they listen to my words a little too late.

When I was 8, after my mom and dad’s divorce, a counselor told my mom that I was a volcano, and I guess nothing has ever really changed.

filed under: shit i didn’t think would happen to me but did

You can now add being a victim of bank/credit card fraud to the list.

No idea who or how.

Thankfully the bank is taking care of it and they caught it and shut down the card before they cleaned out the account but it is just one of those things that you never think will happen and then boom, it does and it makes you hate people just a little bit more.

Well I hope those assholes enjoy whatever they got because from what I’ve seen in life thieves usually get sloppy and karma comes for that ass.

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