when xmas came early pt. ii

This is the transplant story continued.

One of the things I remember vividly after they took him back to the operating room was shortly after I heard ambulance sirens arriving at the hospital.  There is no emergency room at this hospital and furthermore I heard it approaching the basement entry way… I kind of realized then that oh wow, they are probably bringing the liver.  It was a local donor, so the liver was “on ice” as they say for a very short amount of time which is really an awesome thing.

I was alone at first, just downstairs in the basement surgical waiting area.  Since it was the middle of the night there was really no one else around at all.  I went into the consultation room and laid down on the couch.  My mom, her husband, and my brother were en route.

The first time the nurse called me was about an hour after they took him back.. she told me that he was fully hooked up to everything and under sedation and they would be starting the incision shortly.  Then she called me again to let me know that he being opened up and that things were still going well.

A little bit later another phone call…. the old liver was out and the new one was in, partially hooked up and with good blood flow going through it.  Finally came the last call that they were closing the incision, he was doing great and a surgeon would be out to talk to me when they were finished.

My family arrived around this time.  The whole entire thing had only taken 5 hours, the actual surgery part of it only 4. It all went extremely quick.  I paced the floors waiting for my family to arrive and the hospital started to wake up a bit.  A woman saw me and asked if I was okay… I told her yeah I was just waiting for my family and my husband was undergoing a liver transplant.  She was like “oh honey they will find you, go rest.”

And they did.  I never saw people more eager to lend me a dollar when I told them I was hungry and wanted a rice krispie treat from the vending machine lol  We didn’t have to wait too long until a surgeon came back… he was brief and said everything went well minus some low blood pressure and Ki having low sodium when he came in and that we could go upstairs and wait in the transplant wing waiting room and someone would let us know when they had brought him up and got him in a room.

So we went upstairs and waited.  I don’t remember much now about waiting.  Just eventually that they came and told us that I could see him, but I could only bring on person at a time with me to the TICU.  My brother came back with me first.

I was really nervous to see him after transplant.  I had read plenty of things but didn’t truly know what to expect. At first the sight of him with the breathing tube in was a bit hard to take.  It was the first reality check of oh wow, this really happened.

He was still fully out of it but I was glad to see that he was sleeping peacefully.  My brother and I sat there and just sort of stared at him for a while.  My brother would offer up encouraging words.  His nurse would come in and explain some things, leave, come back, leave come back.  About every 5-10 minutes they were in and out of the room and this is how it remained pretty much the entire time he was in TICU, which was about 3 days.

My mom eventually came back and at one point she sent her husband as well which was a bit awkward when it was just me and him in the room.  And then again my brother came back, then my mom.

He started to rouse a bit a few hours later and panic a bit.  His hands were restrained so he couldn’t pull the breathing tube out.  The nurses would calm him and he would go back to sleep.  As I suspected, he remembers absolutely none of it but when you are the one there watching it you worry that they are suffering and you want to do something to alleviate it but there is nothing you can do.

A couple hours passed and an ultrasound tech came in and said she was going to do an ultrasound on the new liver.  I thought it would be like all the ones he’s had in the past, like 15 minutes tops but this one probably took close to an hour as she was creating a complete picture of the liver and all it’s connections.  I asked her before she left if she could tell me what she saw but she told me she couldn’t.  The nurse came in and asked her how it was and she got a bit snotty and said “we’ll discuss it outside” so of course at that point I was thinking “oh shit.”

They had told me it was extremely common to have to go back to the OR and the nurse told me to absolutely not freak out if that needed to be done, it happened more often than not.

I didn’t really know what was going on but the tech came back in with a doctor and he was telling her “show me” so she pulled out the ultrasound she just did and put it up on the screen and started pointing to things.  She was like “i can hear it but I just can’t see it”.. and the doctor was pointing saying well I’m pretty sure it’s behind this and she was like “I know but I can’t get a picture of it so I don’t know.”  He seemed pretty convinced, she wasn’t and at this point I was getting pissed because all this was going on in the room in front of me and nobody was bothering to tell me what was going on.

That ultrasound tech left and the nurse and doctor told me that basically the hepatic artery was not very visible on the ultrasound.  They could hear the blood whooshing through it but they couldn’t see it.  The doctor told me that this was most likely due to the portal vein being enlarged by the TIPS he had pretransplant which was of course removed with the old liver.  More than likely the the portal vein was just obscuring the hepatic artery and everything was just fine but they might have to take him back down to the OR just be sure everything was functioning fine.  For this reason they don’t close the abdominal wall immediately post transplant.

While we were waiting for them to decide he was coming too more and more and they started talking about taking him off the vent if he didn’t need to go back the OR.  They put the vent on CPAP eventually and he was breathing on his own.  He was beginning to respond to my voice, his eyebrows were the first thing to move, he would raise them when I talked to him and then eventually he did wake up enough that they asked him if I was his wife and he shook his head yes.

Another ultrasound tech came up.  The nurse told me she decided to call in one for a second opinion and I heard whispers between the doctor and nurses that they just did not like the tech who did his first ultrasound.  Apparently she was new and was a bit arrogant about her interpretation of what she was seeing and liked to argue a bit with the doctors about her opinion vs what they thought.  So another long ultrasound took place and the new tech and doctor concluded that yes, it was probably just the portal vein blocking the artery but just to be sure they were going to take him back down, better to be safe than sorry and I happily agreed that since they were being proactive instead of taking a wait and see approach.

So they took him back down to the OR.  They brought him back up about an hour or later and a surgeon popped to say that it was in fact exactly what they thought and his new liver looked “gorgeous” in there.

After that it was the same thing again, waiting for him to sort of come to a bit.  My family eventually left and then it was just me and him and the constant flow of nurses.  As he started to come to more he started motioning for something with his hand.  It took me a few times but I finally figured out that he was asking for something to write with.  They got him something but he was too far gone still on all the drugs to do anything with it.

As Saturday came to a close the nurses brought me a pillow and blanket for the recliner and I laid down and tried to rest.  I just remember my whole entire body shaking profusely.  The last 36+ hours and the fact that they contained no sleep caught up with me and for a minute I was really scared because it was so intense.  It went on for about 20 minutes before I decided to chew up a dramamine and then very slowly I started to calm down and drift off a little.  Of course it never lasted too long before something woke me but at that point even a few hours of sleep seemed like a glorious feat.

This is the point where the days sort of start to run together for me.  Everything just seemed like a stream of things happening.  That night he awoke a few times and was able to try to write things down on paper.  He also developed a fever, which they told us was completely normal, it was all the inflammation from the surgery as well as the immune system responding to the new liver because immunosuppressants are not started right away so he was under a cooling blanket for a couple of days actually.

He came around pretty fast though.  I guess it was the next morning he was angrily scribbling “tube out” on the paper as well as complaining about being thirsty.  Eventually the vent did come out later on that day after he proved he could breathe on his own, something he failed in the early morning hours because he had complained of some pain so they allowed him to have some pain medication and that suppressed his ability to breathe on his own a bit.  But by Sunday afternoon it was out.  It was a bit of a difficult thing to see, I had to look away a bit as they were pulling it out but it was such a relief to see him without it and he was able to whisper some things to me.  I had never been so happy to hear his voice.

He asked for his phone to check his stuff even though he was still completely out of it lol I’m not sure he even knew what he was doing but there he was scrolling on his phone for a bit before dozing off.  That evening I turned on some football… his Packers were playing.  I remember asking him if he would like to fall asleep listening to his Packers play and he opened his eyes for a moment, nodded yes, looked very content and fell back asleep lol  He was then awake later on again that evening for a few hours even while I slept on the recliner.

We also learned that his sodium at been 121 at time of transplant.  Basically had we not been there that weekend for a transplant we would have been back there to have him hospitalized for low sodium.  A few more points and it probably would have been too low to safely transplant him.  We were really really lucky.

I believe that 2nd night is when they began the immune suppression as well.  First came some heavy duty IV drugs that basically ‘reset’ his immune system so to speak and then they added in the suppression drugs.

The next day they took him back to the OR to close up the muscle wall.  He had to be intubated again but thankfully this time they were able to remove it prior to him leaving recovery so we didn’t have to go through it all again in the TICU.   They also warned with the muscle wall closed this was when the pain would really start.  That morning the nurses had moved him around a bit to prevent skin ulcers and what not and hearing him cry out made me feel like I was going to vomit… I felt like I could feel how bad it was hurting him.  They also initially thought on this day that he would have to be on temporary dialysis because his kidneys were struggling post surgery but thankfully this did not happen.

That day I also felt myself age 20 years in 5 minutes because while I was downstairs getting something to eat I was on the phone with my mom and I heard something over the loudspeaker about the transplant floor.  I initially ignored it and then I heard it again so I paid more attention… someone had coded on the transplant floor.  I tried to be calm but hurried and got off the phone with my mom and rushed up to the TICU.  When I got up there all the doctors and nurses were rushing in the general direction of Ki’s room.  I thought I was going to die in that moment… I can only imagine how terrified I looked.  When I got to his room the person in there was racing out and he was perfectly fine… it was a patient down the hall, and they were moving her into the room next to his, she had stopped breathing but they got her back.  She had a ton of scary things happening with her but before we left the TICU I saw her up walking around.

I think that evening or the next I drove home to collect some things and then turned around and drove right back… they moved him out of the ICU to the transplant unit rooms and things were going so well… the nurses kept raving about how well he was doing and he was finally starting to become more alert about everything and hold conversations, not fall asleep as much, etc.

Part III later…

 

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2015 fin.

I had wanted to finish of the story of the transplant… well it’s ongoing but finish it up until now, I’ve just been too busy to write.

Ki got discharged from the hospital on the 23rd. It was literally our Christmas miracle (well, one of them lol) because previously that morning they had told us he wouldn’t be going home. The post op swelling was causing a lot of issues, mostly pain and he wasn’t really pushing himself through it to do what he needed to do. I’m not blaming him, I can’t even imagine how great the pain is and was, but it caused a major setback initially. But when he realized that he was going to end up spending Christmas in the hospital and there was a possibly they would medically clear him before physical therapy clearing him and he could end up in an inpatient rehab center that motivated him to push through the pain and physical therapy cleared him that day. It turns out he could do the things they wanted him to do really well, he was just scared more than anything.

Going home was a bit scary but we are kind of settling into some sort of routine although I don’t think it will be a new normal anytime soon yet, there’s still a lot of unexpected things to be on the look out for but I am oh so glad that he is out of the hospital because he started massively improving once he was home. I’m always afraid of him ending up back there before he’s really turned a major corner and it setting him back further so I really pray that that doesn’t happen.

Overall we’ve just been massively blessed. I can’t believe that this all happened before the end of the year and we will go into 2016 healing instead of getting sicker… moving forward instead of waiting. We really truly thought there was no chance of a transplant before 2016 and yet here we are. I still can’t believe it’s real sometimes.

This year seems like a whole blur of randomness but I am going to try to fill out my little end of the year review questions I normally post on this day.

What did you do in 2015 that you’d never done before?

Painted a room in the house.  Finally attained the blue and purple bedroom I have wanted all of my life.  Went through transplant evaluation with my husband.  Went through a liver transplant with my husband.  Went to therapy with my husband.  Let go of the idea that I need to be perfectly put together at all times before interacting with other human beings… I am okay with no makeup and undone hair.  Binged watched a complete tv series (it was Breaking Bad.. omg if you haven’t watched it, you must!).  Lost a cat that I had longer than 10 years.  Made a dream catcher.

Did you keep your new years’ resolutions, and will you make more for next year?

I don’t think I had any.  The only thing I want this year is for HEALING to take place.  I want my husband to heal. I want to heal.  I want our lives to heal.

Did anyone close to you give birth?

Nope.

Did anyone close to you die?

My aunt Kim passed away after a very long battle with breast cancer.  I am sad she is gone but there is comfort in knowing that she is no longer suffering, because she suffered greatly for a very long time.  It was a testament to her spirit though to keep going.

And I sadly found out this year that last year the father of a childhood/teenage best friend passed away.  I have a lot of memories of him and had I known he had passed I would have been there to pay my respects.  It fucks with me heavy that I’ll never see him again.   Let it remind you that you never know when the last time you’re going to see somebody is.

What would you like to have in 2014 that you lacked in 2013?

Health for myself and everyone around me.  It is time that we all heal together.  I truly believe we should get to bask in some sunshine after such a storm that the past few years have been.

What date(s) from 2013 will remain etched upon your memory, and why?

  • The day we knew our second IUI failed.  It was a clusterfuck of “hey your IUI failed, your have bronchitis, and a heart murmur.  Fabulous day let me tell you.
  • The day we went to Indy for Ki’s transplant evaluation.  Everything about our future hinged on tests from that day.
  • The day that his case was presented to the transplant board and them calling us to tell us that he had been accepted and listed. So much hope finally came sprawling back into life.
  • The last ER visit/hospital stay pre-transplant.  It was the moment where I knew I was losing my husband to the disease and I was so terrified and honestly was so afraid of how much longer we could do this.  And then it was like the universe heard my cries because
  • December 11th they called us at around 6:30-7pm and told us there was a liver and if would be interested in coming in as a back up and then
  • December 12th at 3am they took him back for surgery.
  • December 23rd… he got to come home from the hospital.
  • December 25th… the best gift I could have… having him home with me for the holidays.
  • December 31st/January 1st… leaving 2015 in the dust by his side.

What was your biggest achievement of the year?

All my achievements this year has been a lot of work internally.  I was really broken down this year.  I had to do a lot of soul searching to pull myself out of a very dark place.  It was a lot of mental health stuff.  I truly advocate that if people need help, ask for help!  But I kept running into the terrible experience of asking for help and ending up worse than I was.  Deep down inside, I know what I need to do… I know what is best for me and I felt like I really had to stop running from that and work on myself.

  • I accepted my OCD.  I was going to make a post about this at some point, but yes, my whole life I have suffered from OCD  (almost literally, it began when I was 4 years old).  I know it’s hell and I want to punch people who think OCD is just liking a clean house.  It can be a personal prison you can’t escape from at times but to stop running from it and actually confront it was a huge achievement for me this year.
  • I confronted my negative thought cycles.  That’s still an ongoing battle but when you have been feeding yourself horrible negative thoughts for a good part of your life, it’s a very hard cycle to just break over night.  But it was just like wow… I tell myself such awful things and expect to feel better?? What would happen if I spent that much time feeding myself beautiful positive thoughts?  I intend to fully find out.
  • I’m beginning to understand that I can’t sacrifice myself for other people.  I deserve to love me and there is nothing wrong with that.  I think a lot of what is wrong with this world is that people are made to feel that loving themselves and having self worth is wrong so they are constantly looking for fulfillment elsewhere.
  • I can’t keep ignoring my spiritual side.  It needs to be incorporated into my life.

What was your biggest failure?

I really let my mental health go there for a while this year.  Was in a really bad spot once again.  It didn’t have to get that bad, but as we all know with mental illness… sometimes you don’t get a say.  I don’t think of it being a failure in and of itself struggling with it, but there many things I did and didn’t do that was me being lazy and not helping myself… and it didn’t have to get the point that it did.  I just think I kind of failed myself for not thinking that I was important enough to get better there for a while.

Did you suffer illness or injury?

Heart murmur which thankfully turned to be benign.  A wicked ulcer that concluded with some of the worst pain of my life. And then of course the brain going awry.

What was the best thing you bought?

  • Batman Arkham Knight for PS4… the last Rocksteady Batman game *sniffle* but I’m only just now starting on all the DLC so at least I still have that to look forward to.
  • My blue hoodie that I am addicted to wearing
  • These awesome super soft leggings that look like skinny jeans that are the most comfortable things I have ever worn in my life and I need 3094283 more pairs even if they all look alike so that I have a pair for all eternity.

Whose behavior merited celebration?

My brother is really a pretty awesome dude.  He was so supportive during Ki’s transplant and hospital stay.  It just warmed my heart so immensely that when Ki was still unconscious after the transplant my brother was there talking to him.

Whose behavior made you appalled and depressed?

I’m having MIL issues as we speak y’all.  I don’t wanna speak on it right now but she has not dealt with our current reality very well.

Oh and my sister when I found out she was a fan of the 50 Shades of Grey lineup lmao

Where did most of your money go?

We don’t really have any money right now lbci (laughing but crying inside lol)  Moving houses, medical and travel, and the post transplant stuff along with bills and everything else has had us drained.

But you know, I really learned that no state is permanent.  Yes sure you can do things to ensure that you may be better off for a longer period of time, but sometimes life happens.  And life happened to us.  We have been flat broke, we have been well off, and we have been flat broke again.  I fully believe that we will be well off again and this time have the foresight to understand that you never know what could happen in the future so plan better for it.

What did you get really, really, really excited about?

It happened so fast that I didn’t really get much of a chance to even be excited but obviously the transplant.  Right now I’m really really excited about the hope of a life where disease isn’t an everyday factor.

What song(s) will always remind you of 2015?

  • Alessia Cara- Here
  • J. Cole- Love Yourz
  • J. Cole- No Role Modelz
  • too much fucking Drake
  • Nicki Minaj & Beyonce- Feeling Myself
  • Big Sean, Drake, & Kanye- Blessings

Compared to this time last year, are you:
i. Happier or sadder?

So much happier. Amazing what can change in life in just a few weeks.

iii. richer or poorer?

So much poorer financially but so much richer in other ways.

What do you wish you’d done more of?

Staying in moment.

What do you wish you’d done less of?

Worrying.  Indulging in hopelessness.

How will you be spending Christmas?

I spent Christmas at home with my love and it was the best Christmas ever in all existence.

What was your favorite TV program?

  • Breaking Bad… better late than never!
  • Empire
  • Gotham (but then Gotham went off the deep end when it came back this fall and I’m having trouble trying to keep giving it second, third, and fourth chances)

What was the best book you read?

  • War and Empire: The American Way of Life by Paul L. Atwood
  • Jesus Against Christianity: Reclaiming the Missing Jesus by Jack Nelson-Pallmeyer
  • Hyperbole and a Half: Unfortunate Situations, flawed coping mechanisms, mayhem, and other things that happened by Allie Brosh

What was your greatest musical discovery?

Creating a women in hiphop station in my digital music apps.

What did you want and get?

Guess? =D

What was your favorite film of this year?

The only film we saw in the theater this year was Straight Outta Compton. It was decent… I think only hiphop fans can truly appreciate it though.

What did you do on your birthday, and how old were you?

I…. seriously have no memory of my birthday?

How would you describe your personal fashion concept in 2015?

I will wear this hoodie every day of my fucking life and no one can stop me.

What kept you sane?

Hahaha I wasn’t sane for a good chunk of the year.  Once I regained some of it I kept it on track by rereading Claire Weeke’s Hope and Help For Your Nerves, the parts I needed over and over.  Journaling. And honestly just letting it out.  I realized it was time to stop lying to myself and everybody else.

Which celebrity/public figure did you fancy the most?

My Breaking Bad binge gave me an Aaron Paul crush lol

What political issue stirred you the most?

Oh god.  Isn’t there just too much fuckery going on to even pick one?  I really can’t.  Shit’s crazy out there.  We have got to do better y’all.  As members of the human species we have got to start doing better for all our brothers and sisters the world over.

Who did you miss?

Mango.  God I miss him so much.  He was always the constant in my life.  I don’t know if I’ll ever not miss him.

Who was the best new person you met?

Can I just lump all the people who have helped get us to and through this liver transplant stuff… they’ve been phenomenal.  My husband has such a wonderful team behind him.

Tell us a valuable life lesson you learned in 2015:

Nothing is permanent.  Life is cycle of haves and have nots.  Illness and wellness.  Loss and gain.  And in some weird way, it’s almost comforting.

xmas came early. part one.

I actually for once have a super excellent reason as to why I haven’t kept up with the holidailies tradition this year.

Ki got transplanted. He got a liver. A totally wonderful unexpected liver.

Last Friday I got up super early. I was trying to make myself feel better.. away from the pain issues I had been having (my back thinks it’s 70 years old) and my general depressiony vibe I was feeling. So I got up, did some yoga, took a shower, got dressed and decided to go into the city because it was a super nice day and I just needed to unwind with some me time. So I did that and I was gone until about 6pm that evening.

When I got home, I got out of the truck, went to the garage to turn on the Christmas lights, gathered up the groceries and headed in. When I got inside, Ki was on the phone and he had a very anxious look on his face. My stomach immediately dropped and I felt that burning feeling surge through my blood which always happens whenever my adrenal glands decide to dump a shitload of stress hormones into my body at once. I tried to be patient with whatever was going on but after a few minutes I’m just like okay I’m gonna throw up what is going on… So he puts the phone on speaker and I hear someone say “so do you want to accept it?” All I could think is maybe liver?? But I’m not entirely sure what is going on still and I just look at him and mouth the word yes because he really just looked overwhelmed. Then I heard someone say “Lisa will be so happy!” and asking us how far away we were and said they would expect us in about 3 to give us plenty of time and to drive safely.

He hung up and I’m like what is that, do they have a liver for you?? He tells me that he has been called in as a back up, there is already someone there waiting but they feel like the liver may not be a match for them. We had previously been told that we probably wouldn’t be called in as a backup so the very fact that this has happened is giving me good vibes.

My brain goes kinda blank… we don’t have bags packed or anything because his MELD just hit 15 a couple weeks back, this is the first time it has been in a range where we were told that he would probably even be considered for a liver, but after checking OPTN religiously and seeing how many people are ahead of his score, we really did not believe that he would be transplanted soon. We were thinking maybe after the new year, when they updated the scores to include sodium, but definitely not before then. Ha. Shows how much we knew.

He had a minor moment of hyperventilation in the kitchen but I told him to calm down, we had this. Hurry, pack a bag! I took Nacho over to my dad’s house and told him that we had been called in as a back up. Went back home, proceeded to pack a bag, get the rest of the animals stocked up on food and water and we eventually headed out. I put my “healing meditation music” on the stereo and really… the drive wasn’t very stressful. Like I didn’t really feel anxious much at all. We had a very calm peaceful drive, made it there in plenty of time, ever stopped on the way for gas. I think both of us thought this was just a practice run and at least after this, we would know what to expect.

We arrived at the hospital and checked in. They took us up to outpatient transplant which is a room full of beds that are divided by curtains. Across the room from us was a gaunt looking man with yellowed skin. I immediately knew that he was the first in line, and we were his back up. He looked much sicker than Ki and it was kind of awkward the whole set up, he was there, we were across the room, we were in full view of each other and it’s just like hey.. I’m sort of your competition. Hopefully in the future they change this set up for people.

So at first we just waited a bit. And then they came and did blood work. Then more waiting. Then it started to happen, we started hearing little whispers from the nurses that they were leaning towards giving Ki the liver. But it was still to early to really get our hopes up and him? He wasn’t going to get his hopes up at all… he had totally just kind of shut down and distanced himself from what was happening I think. I took a little of dramamine to quell my nausea and tried to sleep a little bit. I started hearing the nurses come back in and one came in and had him change into a gown. This is when my brain perked up and I was kind of like oh shit,this is probably going to happen, otherwise why would they have him getting into a gown while the other guy was still over there. I woke up and told him, they must be giving it to you and he was in complete denial that it was actually his time. I’m like look! The guy across the hall isn’t getting into a gown or anything and still he didn’t quite believe it.

It was shortly after that the the nurse came back and confirmed this for us. It was Ki’s liver and it was good to go. They were taking him back to surgery NOW, the liver donor was local, the liver would be arriving shortly. It all happened so fast that neither of us had much time to process it. It was very emotional for both of us. At this point they also went and told the other man that this particular liver was not for him. That was awkward when you hear that conversation take place. I mean they see us over there prepping and crying tears of joy and anticipation and anxiety and everything else and they are told they have to wait longer. It sucked to hear the disappointment and confusion in their voices. What it apparently came down to was 1) a size issue. This was the main reason the liver was better suited for Ki. The second was an antibody issue… Ki apparently had almost no antibodies that were incompatiable with the donor liver. This doesn’t mean that his body won’t still try to reject it if he were to be without immunosuppressants, but it does mean it is just a better match.

We had almost no time to process what was going on. They were like we are going to surgery now and brought a wheel chair. He was obviously crying at this point and I was too but I also felt very at peace too. I thought I would be an insane mess when all this happened but I just felt very accepting. Not sure if the same can be said for him. When he realized all this was really happening I think he realized how unprepared he was for the reality of it and now here it was, he had to face it head on.

I remember him telling me that he just wanted to go home. I tell him noooo you don’t really mean that. Besides, no matter when it happens it doesn’t mean you will ever truly be ready for it. I understand the sentiment though, you realize that you are about to undergo something that will once again competely change your life once again.

I told him that I felt like he dad was there with him. Well, I phrased it as “I bet your dad is here with you right now” because I didn’t want to sound too creepy, but I felt it so strongly, that his dad was with him. That’s what I was going to say “not to sound creepy but just so you know your dad is here with you right now” but I didn’t want to freak him out even more.

The wheelchair ride to the OR doors wasn’t long enough. Down and elevator and that was about it, the nurse told us to we had to part ways. He was crying, I was crying… I don’t remember much of what I said now, but I remember telling me him that he had this and that everything was going to be okay and I watched as they wheeled him into the OR area. I had to just kind of disconnect myself a little bit or I would have lost my shit.

Poor guy later told me that he broke down walking to the OR table, but within the hour they had him completely under and hooked up to all the lines and machines. Another hour or so passed and the nurse called me and told me they had begun the incision. Another hour and the old liver was out, the new would be going in… another hour and they liver was in with partial blood flow, they just had to finish hooking up and then before I knew it they were telling me he was done. The surgery was extremely quick for an organ transplant, just about 4 hours!!!

My mom, her husband, and my brother joined me in the waiting room about an hour before the surgery was completed. Around 9am or so one of the tranplant team came in and told me that surgery had gone well, just the matter of some low blood pressure and low sodium but he had come through just fine and everything looked great. We were invited to go upstairs and wait on the transplant floor while he was in recovery and when they moved him to a room they would come and get us.

And that is part one of this long initial story… I am currently sitting in the hospital room with him as he recovers and am totally pooped so I will continue this story tomorrow.

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.

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.

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.

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