here’s the thing

When the words “alpha 1” was first uttered, I couldn’t read enough about it.  I spent hours and hours and hours reading everything I could find.  Once all the hours were combined I had probably literally spend DAYS reading info about it.

Now all these months later and reading a damn thing about it sends me on the edge of a panic attack.  No it doesn’t just send me on the edge.  It pushes me over.

I don’t know why but I am frustrated.  I am frustrated that they don’t know more and I am frustrated that every single case seems to be extremely different and extremely personal to the person who is experiencing symptoms.  Even if you have a bunch of ZZs in the same the family, they can all have vastly different experiences.  Some had issues as children.  Some didn’t.  Some had severe liver damage as children.  Some didn’t.  Some had to get liver transplants as children.  Some didn’t.  Some got sick a lot as children.  Some didn’t.  Some suffered respiratory issues most of their lives.  Some didn’t.  Some have liver issues as adults.  Some don’t.  Some develop COPD in their 30s.  Some not until their 60s or 70s.  It just goes on and on like this… it is literally like no 2 stories are the same!  Sometimes it can make you hopeful and sometimes it feels absolutely devastating, both for the same reasons… because you have no fucking clue what could happen either way.  And then you have the whole…sometimes carriers show up with having certain issues.  Granted it seems much more rare.  And then you have all the conflicted studies about carriers… because a lot of the studies done where they found carriers they were already looking at populations with lung and liver disease so I’ve read a boat load of shit about that and yeah… just overwhelming and confusing.  And then  more stuff like liver damage progression can happen quickly… other places saying it can remain more stable for long periods of time.  WHY DOES NOTHING AGREE WITH EACH OTHER?!

You know what’s really rare?  Liver damage in those afflicted by alpha 1 who aren’t babies/young children or 50-60 year olds.  So I always wonder… why didn’t we get 20 more years of ignorant bliss?  And I know, I know… it doesn’t matter because we didn’t and we never will but it doesn’t mean it isn’t a thought that goes through your head.  Like seriously… you envy people who got to be in the dark longer, even though it probably isn’t even a good thing to envy at all.

I must admit, I get more neurotic about it all as doctor appointments approach.  March 5th is the next one… a day after our 7th wedding anniversary.  This one is especially weighing on me because it includes a CT scan to check the progression of the liver damage as well as screen for cancer… because alpha 1 and liver disease both increase the risk of primary liver cancer.   The good news just never ceases does it?

It just feels like a never ending roller coaster that you can’t get off of.  It essentially is.  Even if we end up (if?  when.) on the transplant road and he is essentially “cured” of Alpha 1 in new liver terms, then there is the roller coaster of being a transplant recipient.  So no, it doesn’t it.  Maybe at some point it gets less steep and dramatic.  I mean, that is the hope.

it’s the kind of tired that sleep won’t fix

I “came out” on Facebook about what has been going on in my life.  A lot of people already knew, a lot didn’t.  I read all their messages and it brought tears to my eyes the amount of support but I haven’t been back to comment or like anything because I’m just tired. That kind of tired where now communicating with people is hard.

We went to the appointment with the university hospital doctor.  It went well, I think.  I like him.  I get a good vibe.  It was the first time in a while we have left a doctor’s appointment where I didn’t feel dread and gloom and start crying because everything seemed like too much.  There was a sense of “we got this”… even if they don’t, I like people who give off that vibe.

When he came in he immediately sat down and asked us first if we had any questions.  Let us talk first.  That’s kind of new heh.  And very much appreciated.  I’ve grown very used to them coming in, talking very fast and looking very hurried, and leaving.  This guy had no rush at all about him which was a very nice thing to encounter.

I flipped my lid a tiny bit, not in a mean way, but just in a sort of an exasperated way, when learning that one of the doctors (no idea if it was a Boston one or local one) had incorrectly wrote down in his records that he had been consuming SIX 6 PACKS A WEEK.  OMG.  When asked about alcohol use he told them, accurately, that he would sometimes have ONE 6 pack a week (which is like a beer with dinner) at the most.  How the fuck that got translated into 6 beers a day I have no fucking clue but it annoyed me because there it is… even when you have the fucking Alpha 1 tests siting right there in your paper work we go to the liver problems=alcohol assumption.  I just get fucking tired of man… that’s all.  And of course he hasn’t had one drop of anything alcoholic since diagnosed.  Nor any nSAIDs or other pain relievers and he’s obsessive about watching his salt intake.  It makes me look like the unhealthy one now heh

One of the things the doctor brought up… he wants the chest catheter removed ASAP.  He informed us that the chest catheter was usually the absolute last line of defense after all other methods to control the pulmonary effusions had failed.. options which we have not exhausted.  He was not pleased that this had been done.  Which falls right in line with Ki’s pulmonary doc’s opinion.  When he was last hospitalized, the pulmonary doctor on staff at the hospital did not consult with Ki’s pulmonary doc about the catheter.  Why I don’t know but the whole thing pisses me off when I think about now that we have had 2 doctors saying “no, that should not have been done.”  So next week sometime that should be out.  I am massively relieved at the thought.  I could never get used to the idea of that thing and I also don’t know what they were thinking, trying to leave it in there for such an extended period of time.  Even cancer patients and such,they usually only leave it in for several weeks to a couple of months.  The doctor said it was just too much of an infection risk.  They have good track records for people who need them short term, but this is not a long term device like they were acting like it was.

So I will be quite relieved when the tube is gone but we will have to work out the best course of action for relieving the pulmonary effusion.  The doc is talking about upping some medication if his blood work comes back okay and also he could go for thoracentesis as needed… rather that be 1 or 2x a week.  This is apparently a much better option safety wise than that stupid catheter.  I just worry about initially finding that balance so he doesn’t end up at the ER again with breathing problems.

His MELD score is still on the low end of things, which is good.  I wish it meant all these crappy symptoms didn’t happen but unfortunately it does not.  The doctor said they don’t generally move towards pre-transplant testing until the MELD reaches the mid teens which makes sense… putting somebody on the list with a low one would just mean that every single person with a higher one will still get offered a transplant before them.

The doctor made it sound like he was going to do everything possible to help keep his score low for as long as possible and keep him with the organ he was born with as long as possible so we aren’t moving straight into transplant things right away.  Which is good for him, because I know this gives him more time to prepare mentally.  I know we are awaiting the inevitable.  In a way a part of me wishes it could just happen and be done with but the other part is relieved to to get a little more time before that because once it’s done there is no going back.

We go back in March for follow up blood work, ct scan, and appointment.  I really like how they can do every thing there, in one building on one day.  Very important when you are making a 2 hour drive to see a doctor. I was lucky enough to not have to drive today but it isn’t a bad drive either. Everything was right off the freeway.

So that is where we are now.  Nothing much changed I guess, but the whole chest catheter re-evaluated.  That’s a plus.

As much as I don’t want to admit it I feel the wall of depression pushing up against me.  I just don’t know what to do sometimes.  My MIL goes back home tomorrow but this time it is not that bearing down upon me.  I feel like I’ve lost a sense of routine or something.  I don’t know.  I feel kind of purposeless and aimless.  Meh.

sleeeeeeeepy

Christmas came and went too fast.  I’m sad that the day is over.  It seems I’m never quite in the spirit as the day approaches, but Christmas itself always holds a certain level of magic.

We did something different this year and waited until later in the evening to open gifts.  It was kind of fun to wait, open gifts, and then eat Christmas dinner… it seemingly prolonged the spirit of the day a bit.

I was spoiled this year.  Before Christmas had even got close I asked him to stop buying me things… it was making me feel guilty,  like I don’t deserve for you to buy me all this stuff.  He kept saying I deserved it for all that I did.   I’m still not comfortable with the fact that he spent so much on me,  I always think of more practical uses for the money but he insisted despite my protest.  It may be his way to show gratitude but I don’t need stuff to know that I am appreciated.

I tried not to get myself revved up over thoughts of what Christmas may be like next year, but much like Thanksgiving, they would creep in randomly.  I tried to push them out just as fast as they crept in.

January approaching revs up my anxiety.   Tis now the season for doctor appointments.  My mind is focused on one thing only, him getting on the transplant list asap.  Of course I don’t yet know if the university hospital will require his MELD score to be higher to start transplant proceedings.  That’s the sucky thing about livers.. they can cause you all kinds of issues and yet the score the use for helping determine transplant need can remain lower than you would expect it would be considering the issues said liver is causing.  The GI docs have talked about a shunt during the wait for a transplant to help alleviate some of these issues and I would be lying if I said the thought didn’t scare the shit out of me as much as everything else.  The chance that it can lead to episodes of high ammonia in the bloodstream and the accompanying confusion etc that comes with that really really really scares me.  I know there’s medicines for it.  I know there’s things you can do to help prevent it.  All that. But it is scary and not something else I want him to have to experience or me either in the wait for a liver.  I have heard that anywhere from 1/4 to 1/3 of people undergoing the procedure may experience it.  And of course there are other risks as well I have learned.  I finally forced myself to read about it more the other night because I had absolutely refused since it was first mentioned to acknowledge it thinking “oh…. well maybe he won’t have to have it done” which was my form on absolute denial.  So I decided to read about it the other night and although it does have some scary things that can happen with it, it also has a lot of benefits when it works as it should.  It makes me feel less scared but not completely less scared…so yeah.

My MIL arrived to spend another week with us starting yesterday.  She was just here at Thanksgiving so we did not have a long wait between visits this time.  I hope I don’t find myself slipping into a bit of a depression when she leaves, such as I did after Thanksgiving.  I don’t get why, but somehow it is easier when she is here… having another energy in the house.  It doesn’t make any sense because there isn’t any thing in particular that she does when she is here that makes things any different.  I guess it is just having another person for support.

Sundays have been my “I could sleep all day” days lately.  Slept in today, barely did much all day, and still exhausted.  I’ve been fantasizing about bed since about 2 hours after I woke up heh.

I also had the realization the other day that I am supposed to go back to some form of “real life” soon and ugggh… the “don’t wannas” are strong.  I know I have to go back to carving out some kind of life for myself but I don’t even know where to begin again.

climbing out

The past week or so has been extremely difficult.  I fell and fell hard.  Not only with what is going on, but I am also a sufferer of Seasonal Affective Disorder and as we approach the shortest day of the year, I feel its effects very strongly and often I feel like I literally cannot control them which is beyond frustrating.  You want your brain to do one thing and yet it demands another.  I feel like I should be a bear when winter rolls around, it’s not fair that I can’t just eat a whole lot and then go to sleep for a few months, awaking when the sunshine decides to stay longer than a mere third of the day.

My husband has resorted to giving me pep talks.  Oy.  But in doing so he has made me feel better because I see him wanting to fight and fight hard.  He told me how depressed he was after this last hospitalization.  That he just felt like he didn’t want to fight this.  But then the support group meeting that I took him too changed everything.  The day that we went there was a heart transplant survivor there talking.  And there is also a double lung transplant survivor in the group who talked some.  It was strange to finally go to a meeting and they were talking about organ transplants that day since that is not something they typically talk about.  But he told me that that day changed his perspective, because he realized that those people had gone through that and there they were, going on living their lives and it gave him hope and inspiration.  Since then he’s been very proactive… finding others to talk with about all this, getting out and doing things.  He’s doing amazing, which begs the question, wtf is wrong with me?

Oh yeah..the SAD thing.  And just generally being scared and anxious.  The closer we get to another specialists appointment, I think I find myself feeling more anxious because there is always that…what will they say, what will they want to do next, when will we get on to the transplant team and then my God…going through that whole process.  So much to take in.  And truly, I need so much more support than I currently have but I don’t really know where to find it.  There is our local Alpha 1 support group but they cease meetings during the winter months for the most part.  I have already decided that once we get on the transplant list that we will make the monthly trip down to the hospital’s transplant support group and hopefully find one around here as well.  I stopped going to my weekly meditation which was a horrible idea and I really must start up again.

The past couple of days I have sat in front of my blue therapy light.  Something I should have started clear back in October to prevent some of this but that fact that I’m doing it now is important.  I am going to pull my gratitude journal out from under the couch where it has been since this summer and remember things I am grateful for every day.  I am going to work up the motivation to go back to weekly meditation and quit preaching to Ki that he should do it and start doing it again every day and invite him to do it with me instead.  I am going to try to do more of the things that make me happy even if I have to start off myself by forcing myself to do them.  I don’t want to be sad or miserable and I don’t want to waste any moment with my husband because of my depression or my anxiety.

I think there are also things that I need to stop doing just to make myself a little happier, at least while we are facing this hurdle.  For example I care immensely about what is going on in this world but there have been times I have found myself just spiraling into a depression after spending too much time immersed in reading about things that I can’t directly control.  I’ll get so angry and so upset about the ugliness in the world and realize that while it is good to be informed, perhaps my time would be better spent focusing on things that are positive, people who are bringing about change, things I can do to make a positive impact… instead of seething at the ugliness.  It finally dawned on me that both sides seem to scream in their own ways “The world is a scary place and everybody wants to take something from you” and you know what the causes… it causes people to act out of fear instead of out of love and that’s really the biggest thing wrong in this world today.

Acting out of love is something I really want to do for the Alpha 1 community now.  The rest of my life will somehow be spent helping to spread awareness about Alpha 1 and helping people in whatever way I can.  I also want to find ways to help spread the word about the importance of being an organ donor.  These are things that you never think are going to directly impact your life and then when it does it makes you want to get out there and let the world know what is going on.  If this had to have entered our lives, it won’t be without meaning.

I also think some of my sadness… came from that new found information that the friend-actually more of an acquaintance-about to become a stranger is (still) an addict.  It hurts because in the past year, I really tried to confine in her some personal things about my life which I hadn’t done in a while and of course Ki’s illness, I shared with her about it and told her my feelings and just hoped she would have been there for me and then to find out while I was sharing all that with her… she was not anywhere close to still being the person I thought she was.  There was very much a feeling of betrayal.  But I’m moving past that now, I just realized that that part of my life, where I knew that person is now over and while it is sad that we go from friends to strangers, sometimes it is necessary.

I’m just going to try my best from here on out to be positive and do good things in life and help my husband get past all this and hopefully I find my spot in life too.  Someday this will be in our past and I don’t want it to take any thing else away from us.

I’ve also decided that for the rest of Holidailies, I’m going to attempt not to really dwell on this any more.  If I make anymore posts regarding the transplant or Alpha 1 it will be to share information.  If something comes up in our lives regarding all this, I will of course share, but I would really like to spend the rest of the holiday season trying to focus on positive things and enjoying this season.  I definitely owe that to myself and Ki.

hopeful

Monday the university hospital called to begin setting up appointments for us to consult with liver doctors and hopefully on to the transplant team.  Yesterday they sent some paperwork and directions.  We are scheduled for Jan 3rd unless there is a cancellation and we could come in earlier but Jan 3rd is right around the corner anyway so it isn’t too long of a wait either way.  I don’t look forward to driving 2.5 hours or so into a city that I do not know my way around but I look forward to maybe getting more hope.  I hope it’s hope.  I always seem to try to remain neutral on these situations, I feel like if I get too optimistic I’ll jinx it but naturally I do not want to be pessimistic either.

I do stay positive about the outlook of all this though.  I do try to believe with all my heart that this is going to work out, that he’ll be a success story in the end of all this.  I always try to think “at least there is this option and possibility” because there are lots of things…. well….     Hope.  I cling to it.  Always.  Even though it’s scary, because you just never know what direction any of this could take.   I guess that is what faith is all about… you believe even if you can’t see it yet.

You know I was going to write more but I think I will leave it at that.  I don’t want to dissect that positivity after all.

the hardest post to write

I spent a long time debating if I would ever come back to this blog.  A large part of me said no, that I would just use my paper journal and leave snippets of my life on my tumblr.  But then I saw Holidailes starting up again via a post on Facebook and I thought how I have done Holidailies for many years now.  Perhaps it was tell me to come back to my blog… I don’t know.  I rarely get on Facebook these days, it seems strange I even saw the reminder.

So then I have asked myself, how do I start this post. How do I explain what has happened… My last post here, I was declaring my intent to the universe.  Guess what?  Sometimes you can declare your intent to the universe and the universe answers back, “No.”

The universe didn’t just answer back no, it crushed my life.  Our lives.

See everything was going so well…. this past winter we had moved into this bigger house, Ki’s business started really taking off, money started flowing in, and there it was… August I was going to go and start the work up for fertility shit… we were finally going to “officially” try for our baby.  A couple weeks before the doctor appointment was to happen though I laid on the couch and said “every thing feels weird lately”.  He agreed and quipped “yeah like deciding to have a baby.”  In my heart I felt it and in my head I said “we aren’t going to have a baby.”

You see… I am not going to go back over the whole story.  Just this much of the back story has made my heart ache enough.  This is the only thing that currently matters now.  We discovered that my husband has Alpha 1 Antitrypsin Deficiency.  It is genetically based, meaning he got it because his mom and dad were both carries.  In Alpha 1, the liver either fails to produce the antitrypsin protein or produces screwed up copies of if that get trapped in the liver (I know, you probably didn’t even know your body made this protein, I know I didn’t).  In the grand majority of cases, this causes severe lung damage of the course of one’s life, usually resulting in COPD.  The protein protects the lungs.  They have a protein infusion therapy for those affected in this way and can essentially stop further damage, although if you’ve already got pretty severe COPD it probably still isn’t extremely comforting.  It sucks when it effects the lungs but things can get worse,…like..

In a small number of cases, the protein gets stuck in the liver and damages it.  Scar tissue builds up and the liver begins to fail.  The only measure that can be taken is a liver transplant.

See… this is where we are.  My husband needs a liver transplant.  I live with this reality everyday and still writing about it can make it hard to breathe.  Most people… they go until they are 50… 60 years old until they find out that Alpha 1 has caused this damage.  I find myself asking nearly every day… if it it had to happen, why didn’t we get another 25-30 years like most people?  Why is this happening to him in his 30s?  And I’m not even 30 yet… how can my husband need a liver transplant?  What will our futures be like?  And I am scared to death of losing him.

My new normal is weird because he was hospitalized again at the beginning of the month and we have a new companion in our lives, a chest catheter that I help him drain every day.  It’s strange how normal it has suddenly become, but on days when I am already irritated, everything about the chest catheter freaks me out and I feel myself become enraged at it because it is a reminder of how fucked up everything is.

At the beginning of the new year we will hopefully begin steps towards getting him on a transplant list.  There’s a lot of worries.  Especially financial ones.  If I can hope that those will work out for the best then I am at least reminded that we live in the part of the country where the wait lists for donated livers is the shortest.  We live near a medical facility that boasts some of the highest survival rates and shortest wait times in the country for livers.

There is a reminder that there is hope.  There are things that are completely hopeless.  We are not out of hope yet.  I pray we never are.

I haven’t talked about this on Facebook yet because I just haven’t been ready. I don’t know how to make that post yet.  Of course there are people who know among our close friends and family, but publicly explaining all this in the context of Facebook… yeah I’ll reserve that for another time.

For a while, I struggled.  I would envision the life we were supposed to have been leading.  Maybe I would be pregnant already right now, who knows.  It fucked with me for a while, but now… now it is like it didn’t ever exist, it was a life somebody else lived.  I don’t know it anymore.  It comes back sometimes, as grief… so close to have absolutely everything ripped away but I guess I still believe everything happens for a reason.  And that some things aren’t meant to be.

But I guess when the person you love most is facing a life threatening illness it puts a lot of things into perspective.  Like realizing no physical thing could ever replace who they are and what they mean to you in life.  That you could spend the rest of your days in a shack eating a tin of beans as long as they were by your side.  And mourning for souls that never existed is ridiculous when faced with losing one that has been with your half your life.

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