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.

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impending doctor marathon.

I can’t seem to find the energy to write, I just keep staring at a blank screen mostly wishing I could sleep at night.  I feel like Christmas is creeping up much too fast and I’m not getting to enjoy the season.  I’m even still decorating.  Every since we have moved it feels like the days fly by and I’m not sure why.  Time moves faster 50 minutes south I guess.

We finally got word on Ki’s blood tests from the Monday after his last hospital stay.  The cortisone seems to be working very well and is upping and maintaining his sodium levels.  This is both good and bad.  Good for obvious reasons but the bittersweetness comes from the fact that when the sodium meld scores kick in in January he may not get as many additional points as he would have previously.  It is my understanding that he should still get some as he’s still under the normal range but I’m not entirely sure how it all works.  We are going to have to ask the transplant hepatologist. I’m just ready for him to get offered a liver.  The sodium being added to the meld gave me some hope of an end in sight… Will have to wait and see what the dr has to say about it all.

Speaking of that, next Monday.  I hate driving down there but it is a much easier drive now that we do live 50 minutes further south.  It will be a long day though… Both transplant hepatologist and TIPS check.  So blood work, dr office, ultrasound, dr office.  It is very wearing emotionally more than anything.  I hope we will both have enough energy to do something afterwards to make it feel like we weren’t there just for medical stuff… There’s a florist next to trader joes that decorated for Christmas I hope we can stop by.  And maybe if we’re both still in a good mood I’ll drive alllll the way to the other end of 86th street and go to the Asian and Indian grocery.  

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.