repost from tumblr cuz i’m lazy

So Friday there was another appointment with the liver specialist.  My mother-in-law came down from WI to go with us, she stayed the week with us.

I figured it would be a very long day because he was scheduled for blood work, then a CT scan, and then the doctor’s appointment but it surprisingly was all very quick in terms of them being on time and getting the stuff done… just boom, boom, boom.

So he had the blood work done, then the CT, and then we met with the doctor.  I really do like his doctor a lot.  He seems like he is always quite happy and positive, he always speaks with a very pleasant tone, he is organized and seems like he would know his stuff even in his sleep.  By the time we met with him about 2.5 hrs after we arrived there all the reports were back on the CT scan and blood work.  Wowza!

The CT scan is standard every 6 months to check for cancer.  It’s a very scary prospect but people with alpha 1 are at a higher risk as are people with liver damage so they check every 6 months because if they catch it they can transplant the liver before it spreads.  There was no mention of them seeing anything on it so I assume that is all good… this was what was causing me the most anxiety.  They also didn’t detect any fluid in the abdominal or pleural cavities which is awesome.

The doctor seemed shocked in a very happy way that his blood work concerning all the liver stuff is staying extremely stable, in fact some of the numbers are exactly what they were when we were there in the beginning of January.  He kept chuckling and going ahh that is amazing, this is very good news! The doctor said that it is possible that this could go on for quite some time.

The only downside is his kidneys are not happy with some of the meds.  Because those levels are off it shot up his meld score a few points (the meld score is used to determine how sick the liver is).  They start transplant proceedings at 15+.  His is currently at 13 but the doctor calculated what it would be if the kidney levels were normal and it would be an 11, which is what it has been (fwiw, a normal healthy individual without liver damage is 10 and under).  I asked if the kidney levels were restored to normal if the meld would go back down and the doctor said most likely.  So the doctor decided to tweak some meds and have him redo blood work in 1 week and then they can recalculate the amount of meds if they need to or if he has any issues he can call them and let the doctor know.  Basically they’ve just got the get these meds at a level where the kidneys are happy.

The only thing that sort of irked me is that, the last time we were there, the doctor ordered another Alpha 1 test.  Now we already knew with 100% certainty that my husband has Alpha 1 Antitrypsin Deficiency and he has the ZZ phenotype, so I was kind of baffled why they ordered the test again but just figured they wanted to confirm it for their own records.  This seemed to be the case but during this appointment the doctor told us that he had been doubtful of the original diagnosis.  I dunno why but it irked me.   I wanted to ask why he thought that but I didn’t which I kind of regret now because I just wanted to know why he doubted it, yah know?  All I can figure is they so rarely see it and it is even rarer to see a liver affected Alpha, especially one in his age range (liver affected alphas are usually babies or young children and older men in the 45-55 age range).

It was a pretty short visit with mostly good news and if everything goes well we don’t have to make another trip until June 13th.

My husband has done an amazing job at maintaining a healthy lifestyle and really changing everything he does around.  I know that it can’t be easy and I am so proud of him.  I know that the work he is putting in is what has kept his liver stable.  Not to mention he’s also been doing a lot of  mental preparation for when the day arrives that he needs a transplant.

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.


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.

Next Newer Entries