30 Days Sober!!!

    So, my day started by showing up at the department of labor, I thought they were having
An issue with my unemployment. But it turned out to only be a class about how to get a job. So, that went well. Got home, loaded up the trailer with stuff and headed to the new house and when I get there Scott tells me how his car hardly made it there, transmission is fucked. Well, I say it's fucked, I'd know better than him on that issue. But whatever. So, I pulled strings and favors and in theory, if all works out, I got him a new car...new to him at least. Fingers crossed this works out. In other news, being stranded at Scott's gave me time to get some unpacking and arranging done. See pics.

21 days sober/venting

    I meant to blog yesterday, but I was in so much pain from the paracentesis that I was in a funky mood. Or maybe it wasn't just the pain, I dono, I did a lot of thinking yesterday. I was home alone all day, and I mean like really alone, I don't have pets right now so I was the only living thing here, I was a little surprised how much of a difference that would make. In addition, I spent a lot of time pondering the fact that I am so strangely content with sitting in silence for hours. I had no urge to put on music or watch tv or anything, just stare and think, I'm not all too sure this is healthy, but it is what it is.
    On the bright side as of yesterday I am 20 days sober, with no urges at all, no meds controlling that urge. While I am very proud of myself it still pisses me off that it took damn near dying twice, and put into an ongoing battle to not die. It ills me that now I am as physically weak as I always have been mentally. It seems obvious to me, my hair, eyes, complexion, varices, wrinkley fingertips, sickly skinny arms. But all strangers see is a soon to be new mom, in her 20s, glowing. I get these comments all the time, my mood and the type of person determines my reaction. I mostly contain the snarkey...borderline straight up verbal tear down that I have down to an art. I found that I am not all too good at controlling it at the hospital. When (on more than a few occasions) a tech, or sometimes even an RN, would look at me with that awww you're having a baby look that would always be followed by some comment that would just strike a nerve. First, if I were as prego as I look, I would be in the MATERNITY ward you fucking idiot. Second, at least ACT like you are trying to do your job, and read my fucking chart before coming into my room. Lets just say on more than one occasion, I was given a new nurse. "Oh, but that's so terrible of you Amanda, you're so mean" fuck that, no good deed goes unpunished. To the ones I just say think you, or don't feel like verbally beating someone in the face with a bat, and I play along, "Oh, thank you, I'm due blah blah blah" That would be the "kind" thing to do. Ya, what happens when I run into the presumptuous twat weeks later, how do you think thats gonna go? Not well, Not well at all for anyone involved.
    Since I appear to be on a roll venting and stuff, something else I was thinking about. I was texting with friend of mine who is very upset by my situation and condition was asking how am I doing, basically how am I holding myself together knowing that there is a damn good chance I wont live to see my son go to middle school. I don't remember what I told her, but I'm sure it wasn't the truth. No one can really understand, I will try to explain it, but you'd have to walk a few miles in my shoes to actually understand. I've known, for a long time, that it was going to come to this. I've known I would die young since I was like 16, in many ways and on many occasions I have mourned my own death. This is why I didn't want kids, although I knew I would be a great mom, until I wasn't. I hide all this from him, although I know he suspects something, he doesn't know. It has been suggested to me a few times that I talk to Payton about what is going on with me, and the answer is NO! Somehow some people forget that I went through some similar shit with my mom. But point being, I've known to some degree or another for a damn long time. Hell, I've been working on my own funeral arrangements for years. But this does not mean I am not scared and regretful, I guess I'm just jaded. I stay strong for other people, not so much myself, when I die thats it for me, but everyone else will have that burden to bear.
    Ok, thats enough depressing shit for today. In other news although I was in terrible pain, I had to go to the store to pick up the pain meds my doc FINALLY called in (in his defence, he called me from his house at 6pm to check on me) But anyway, I made dinner with the few cooking supplies left in my apartment. Of course I could only eat a little of it, Scott seemed to enjoy it.
 

   So, I had ANOTHER paracentesis <~click for info I beat my previous record of 3.7 liters, they removed 5.7 liters, that is equal to the amount of blood in my body. I am not a big fan of having this done as outpatient. I mean, I guess it was cool that I was only there for 4 hours, but they would not give me any pain meds. It was like hey let me literally stab you with this ENORMOUS needle in your gut, toss you in a comfy chair with a fancy blowdryer to warm up. Take your blood pressure twice, make you drink some juice, and goodbye. You better get home before the novocaine wears off. So, I can breathe, and my heart is not struggling to beat, but not being healed from the other 3 times I've been stabbed, 3 on one side and once on the other, I am in SO much pain. I have a really high pain tolerance, and I am freakin scared to move. Not to mention the very odd sensation of feeling my organs and guts go back to their original locations after being displaced by 10lbs of fluid. Oh, and the delightful knowledge that I am doing my best to be in denial about, is that I am going to have to do this every week. But on the bright side, it appears that my platelet count has doubled in the last 9 days. I cant give an exact count, because apparently my blood has decided it no longer cares about the anti-coagulate stuff they put in the sample tubes, so it clotted. The lab guy came down and explained that my platelets are at least 35K but likely a bit higher, so thats cool. Well, I took some pics, but I should explain, yes I said 5.7 liters and there are only 5 bottles on the table, they over fill them, so they go by the measurement line on each bottle not by the overall capacity of the bottle.

A new beginning or the beginning of the end.

    The top picture was taken September 30th, the 2nd on the 23rd, and the bottom taken on October 2nd. In the first 2 I felt great, it was trough times, but I was working it out. I was excited to be moving in with Scott, it was like moving into a huge art project. It was a lot of fun until I didn't feel right. I had an enormous amount of fluid in my belly, made it hard to breathe, and for my heart to beat.
     I'm going to start this part of my blog on October 1st, I felt too miserable to drink, so I took my librium and sleeping pills and went to bed. It was just Payton and I that night, Scott didn't get off until 2am so he was going home. Right around 2am I woke suddenly knowing I was about to vomit. I did so with my eyes closed, because I could tell by the smell it was nothing but blood, more blood than I have ever seen in my life in person. I crawled into the shower, sitting in the cold rain to gather my wits. I was bleeding to death from the aortic veins that attach to the esophagus (Click here for more info), and I had to get to the hospital ASAP without letting Payton know anything was wrong. Based on what I had learned the last time this exact thing happened, I knew I had an hour before I would loose consciousness. Luckily Scott was just leaving work, and headed this way, and I went to the hospital.
     When I walked into the ER I recognized the lady, and she knew instantly that I was in a "pass GO" situation and had me in a wheel chair just in time before I fainted. I don't remember being in the ER, getting 2 IVs, or answering questions. I came to my senses at some point in the ICU. I had lost so much blood I was considered in critical condition. Soon I was taken for another EDG <~Click for Info
     Between the EDG and my blood tests it was determined that there was really nothing more they could do, my liver is shot, too much of it has died and it is no longer functioning. My only hope would be to get a liver transplant, or possibly a snowballs chance in hell that it would regenerate enough for me to thrive. The problem would always remain that if I were to fall, or get in a minor car accident, I would most certainly die very quickly. To put things in perspective, most people's platelet count is 150k - 250k, platelets are what make your blood clot, mine is in the 20Ks.
     So the conversation was had with doc after doc, we can't help you, but you are too sick to leave. I started taking selfies, and random pics to pass the time. I feel that some of the pics are not suitable for FB, so I am starting up my blog again so those who want to know, can follow me on this journey, be it a new beginning, or beginning of the end.

So, I got out on the 14th, they were not real happy about it. Word spread fast that I was being released and it felt like half the ICU nurses came down to say farewell, it was nice. I exchanged numbers with a few and am making plans, although most plans are with one church or another, I've become strangely  okay with that.
    I am still sick as hell, and in constant pain that I can do nothing about, but no one said dieing was easy or comfortable. It would help if I wasn't over working myself everyday, but I have too much to do. I really am completely overwhelmed right now, and will be for like the next month. Then I'm sure I'll catch the flu or phnumonia and be down for a month, likely land my ass back  in the hospital.

The coloring book Taureen got me

Where they removed my PICC line. Damn thing was 5 feet long inside of me!!!

Packed and ready to roll.

Paracentesis

     As I mentioned in a earlier post was having fluid in my belly (Paracentesis <~click for info), this got to the point that I had to be on oxygen because my blood oxygen level was very low. So it was decided to perform the risky procedure. It wasn't as bad as it sounds, strangely enough. They got out a gallon of fluid. The next day all the fluid was back, so out of fear of it being blood or infection as feared, so they did another tap and got another gallon. No blood or infection, just another sign of how sick my organs are. But after two taps I was in terrible pain and exhausted from putting on a happy face for friends and family.

 

I guess there is not much to see, but that is where the drain was,

 about 3inches down from my bottom rib on the right side.

So, today started out pretty shitty. I didn't feel well, the nurses were way too busy bodied for 5am. There had been talk about me having another paracentesis <~click for info today, but my blood work came back really bad. Then the doctor had the nerve to stand there and tell me how I should look into hospice care, because I am in endstage liver failure. So, I was a crying mess most of the day. I can assure you I have not smiled once today, I can't even muster up the strength to fake it.  But either way, I took some pics.

Bag of platelets, then cross my fingers that I won't bleed out.

OUTCH!!!!

Amanda brew, just in time for Halloween

moving in more ways than one.

    So, after all the tests, fluids, blood, procedures and being banned from food and water for 6 days I was given the ok to eat/drink fluids, the next soft food, with this I was moved from my room in the ICU (it was big and.fancy) to long term care oncology. The room reminds me of a room on prison but with a nicer bed, and I got my favorite nurse to move in a nice new lazyboy chair for Scott. Oh, and I'd like to thank Avni for getting me flowers.

The view from my ICU room

      

Flowers from Avni

Breakfast, lunch, and dinner in addition to IVs and some food 

The best meatloaf ever.

The crap view from oncology

The wireless stats monitor I got when I moved to oncology.

I'm kicking Scott's ass in cards

Power Picc

      Because I needed blood transfusions, PPF (fresh frozen plasma), saline fluids and clotting meds all at the same time I had 4 IVs. I don't have a good pic of that, it is very hard to take pics when you have those many tubes in your arms, not to mention the BP (blood pressure) cuff, the chest monitor stickers,  the blood oxygen finger thing, and the oxygen tubes in my nose. It was rough, it helped that I didn't move until the day after, not even to use the restroom, I was too sick.

 

It's hard to see, but there are 2VIs and blood ox all on one arm.

This was just the tree on the left of me. They both looked about the same.

                     

                 

Because of all the chaos, and later the fact that they knew I was not going to be leaving anytime soon they decided to instill a PICC Line. It was all kinds of fun.

All procedures are more fun when your blood doesn't clot. 

                                             And I will call them thing one and thing two.

Then there were three