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…

 

small miracles.

Last year was the first time I missed Holidailies since I started doing it back in 2008.  I guess it was because last December was so stressful.  This month marks the 1 yr anniversary of Ki having his TIPS procedure done, or as he calls it, his robot part (because it is made of metal mesh).  It was a very scary time with a lot of unknowns.

Well things haven’t changed much.  Life is still a scary thing with a lot of unknowns but at least there’s a lot more hope.  Actually being on the transplant list, as surreal as it is, makes for a lot of hope.  It allows for a little room to breathe and a belief that just maybe there is an end to this journey through hell and a happy ending.  By no means will any of it be easy but I am so ready to get off this ride that is basically a descent into darkness and hop on the next which will hopefully take us back into the light.

And we might just get there a whole lot sooner.  The other day UNOS announced that the new MELD score calculator that adds sodium to the overall score will go into affect on January 1st, 2016 and our transplant nurse coordinator confirmed this for us.  This is huge for us.  I have now officially lost count how many times Ki has been hospitalized for chronic low sodium.  Despite every thing they have done to attempt to raise it, it stays low and is a constant battle to keep him out of the hospital.  His MELD could raise as much as 10 points when this goes into action and it might even be enough to push him to or near the top of the list.  I keep having a strong feeling that his transplant will come between Jan-March of next year.

So that’s our little Christmas miracle I suppose… for that to finally be happening.  I know it was debated for some years and I feared it would never happen, but yes… finally.

**

Tonight we went and got a tree finally… a beautiful real fir tree (no more pines here bah).  But… we got it home and found out our tree stand from last year is broken so it is out chilling on my porch and I swear to God if anybody steals my Christmas tree there will be hell to pay.  I’m trying to get lights up outside as well… Christmas is just starting to sneak up on me too fast this year!

Living across the street from Dad is certainly an adventure at times.  Tonight he sent me a text that we could come over and watch Rudolph the Red Nosed Reindeer with him if he wanted… now how are you going to say to no to your 59 year old father when he wants somebody to watch Rudolph with him lol

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.