Schimbare's Liver Transplant Journey- Part 3

Glad you are home! What was the verdict on the infection?

about the levels of care. There have not really been "levels" at our house. TIPS changed everything. It came with instant, HE. Not always able to be controlled well. One day he is able to participate in his life, has pretty decent energy level for how sick he is. The next,... nothing works for him. No projected pathway.

Themister's abilities, both mentally and physically, are unpredictable due to HE and ridiculous fatigue. The unpredictability is one of the most difficult aspects of this disease for him and me both.

We are pushing 3 years where nothing much resembles our former lives. We hire what we can not muscle through together :) Big Hugs

I'm so sorry you're having to deal with this for so long. I had HE for 4 years, but not as seriously. At least I was aware of my problem and with the help of xifaxin and 5-6 bottles of lactulose each month, was able to function somewhat.

Thanks Friends.

I was in Sinai from Sunday to Wednesday, and now it is Tuesday and the pain got so bad that the NYC Hep suggested I get evaluated at my local-yokle hospital.

So I am done now in the ER. We are doing great on time! The blood tests, ekg and x-rays are all done, and there is fluid building up in my lungs again. Sigh.

Sinai does not pay much attention to the ammonia level, but they took it here, and it is 14. Which I don't understand, because I definitely feel loopy, forgetful and somewhat dizzy. So whatever.

I await an answer from Ochsner as to when I should travel down. I've been waiting since last Thursday for the powers that be to make a decision as to whether I should wait until my meld goes a little higher before traveling.

If the nurse does not get this IV out soon, I will remove it myself. No, just kidding

Susan,

I am so sorry to hear you have had yet another ER visit. Did they drain you or just find the fluid???

Let us know ASAP if you make the move.

I'm in CT this week. Weather has been beautiful but for some rain today...what a change from 98 in FL every day.

Hugs,

Carol

Oh gosh! Things have been busy around here. And I mean busy for a woman who has about 6 good hours of wakefulness a day.

There is no way to deal with life on only 6 hours a day.

I am sorry I did not report about my quicky visit to the local-yokel hospital. I got out after about three hours. That place scares me. It is a wonder they don't kill more people. However this time it was not busy, and the ER physician was probably the best I have ever had in all my visits to that ER (I have a "frequent visitor" card that entitles me to a free cup to get water out of the tap!).

No need to admit - not that I would have stayed there. I was only there for an eval, and the MD was gracious about my using their ER for such a thing. Of course, there was always the chance that something dire was going on, so I can justify going there. It was an emergency and I sure as hell wasn't going back to NYC unless it was found that I had no choice due to the severity of whatever was giving me so much pain and weakness.

OK, long story short, in the end, it was gas. Along with my right thoracic (pleural?) cavity already filling up at the bottom.

Sooooooo, I got the blood test results, calculated the MELD and I WENT UP TO 21!! Ochsner was able to grab it, so now I am at 21 with them. Whoooo Hoooo.

I am still waiting to hear if and when I should travel, but darn, I think I should get my sorry butt down there now. If I start losing liver offers because I am up here I will lose my mind.

I feel better. NYC doc is on board with everything, and I am keeping an eye on my breathing in case I need to have my chest sucked again.

Good News all around. Too bad I feel like total crap warmed over.

xoxo
Schimbare

I am going to complain here a little bit. I really like and respect the people at Ochsner. But I am becoming apoplectic that they are not getting back to me in regard to when I should travel.

I understand (I assume) they are overwhelmed. They are, as I am told, transplanting non-stop. i understand that sick people who are going under the knife hold much more importance at this time, than me. I have no problem with that. If I was having a liver transplant, I would want the medical people to focus on me, and not some chick calling on the phone from NY.

But I fear this delay in decision making could result in my having an adverse, critical event - like an infection or pneumonia, as time is passing without a definitive medical opinion as to whether it is better to travel or not. I don't want to make critical decisions based on the level of busy-ness of the physicians.

This makes me crazy. I admit it. Lack of control (whether real or imagined) makes me fall into a depression. I don't want to do anything except keep checking my email and the patient portal over and over again. This is not a good use of my time. It is a poor use of my time, that only shoots me down the abyss of depression and massive anxiety.

I have a lot of people I can turn to to get me out of my own head. I have playlists of upbeat, empowering music. I have a shrink, and I have Paul.

But darn, I suck at utilizing my resources when I am just too sad, lethargic and anxious to do anything but stare into space and watch House Hunters International on HGTV, or sleep.

Grrrr.

I actually am better already, because i got up, swept the thousands of half eaten acorns off the front area, and had so much fun taking to Paul. Plus he made a special trip to the frozen yogurt store and brought back a mix of vanilla and chocolate froyo, with heath bar pieces, peanut butter cup pieces, mango and some other candy thing. The candy hurt my mouth but I soldiered through the pain.

He also picked up a little single serve package of a piece of NY cheesecake, and a piece of chocolate cheesecake with a chocolate cake crust. OMG, I cannot eat chocolate, because it kills my mouth, but for some reason, it was GOOD last night.

OK I must go to bed. I miss my kid. He is out east in the Hamptons visiting a friend. I miss him already. Sigh.

Thanks for listening. It really means a great deal to know that there are people out there going through the same thing, who care enough to share their experience.

Thanks again
Schimbare.

Post Edited (schimbare) : 8/14/2015 6:43:03 AM (GMT-6)

Awesome. My thoughts and prayers are with you

Sorry to be so quiet. It is because I feel so crappy.

I'm totally swollen again. It hurts. I had blood drawn yesterday here at Ochsner, and today an apt the the transplant Hep.

I feel all over awful. I fall asleep randomly. My brain is the worst it has been. I am miserable.

sorry not many details. I must sleep.

xoxo

Susan...How did your appointment go Thurs? I know travel for transplant must be tough when you are so sick. Check in and let us know you are ok. Big Hugs

I am so glad to hear everything is going ok. Sorry you are feeling so sick. Did you find out where you are on the list? You said #1-5 and I figure you will get "the call" anytime. Wishing only the very best for you as you move forward. Did you get some permanent housing for the duration? Take good care, Big Hugs

Awesome, Imbb. Why do you raise ducks?

I am so fortunate that the person taking care of the chickens adores them as much as I do.

Susan

Thanks for sharing the duck story, imbb. I don't thing my town allows raising ducks - just chickens, no roosters, and no more than 6. Which is fine with me.


Today we will get out to look at apartments. We have decided to rent in a neighborhood just outside the official French Quarter. We figure we'll probably never live in NOLA again, so we may as well live where the action is! I'm excited!

Paul did amazing research, and he took a drive to scope out the area, so now we are ready.

I had to buy larger clothes, as my stomach is so distended. At least I like shopping. Oh, and my sandals are cutting in to my skin. I may have to get some of those plastic shoes - uggs, or glucks - I cannot recall the name.

My stomach hurts, I feel nauseated, I am weak, tippy and cannot remember things. Things like taking a shower or going to dip my feet in the pool seem like impossible tasks. When I must go out, I have to be very careful not to overdo, and when I get home I must go right to sleep.

We are in good spirits. Today my dear William turns 16. I miss him so much.

That is all for now
later potatoes
Susan