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.