getting listed

Good morning! In answer to your question, you are correct. Saoirse (pronounced seer-sha or ser-sha depending on what part of Ireland you are from} and it means liberty,freedom. Been feeling about the same, MELD is staying stable at 18 been there for a long time.Doc. says don't be surprised is things start to deteriorate in the next year or so, drugs can only keep you compensated for so long. it has been 3 yrs. I have already beat the odds. they were talking 6 months when I was in ICU.I am sure that all the lifestyle changes I made helped. Diet,taking all my medicines, and trying to stay as healthy as I can. But I will say I would rather just get this done and over with.The waiting thing sucks. 2 pills a day sounds better than 18,lol Kinda a double edged sword.. Get sicker and feel terrible befor you feel better or muddle through like this. It is starting to get a little worse. Fatigue is getting worse and so is the edema. But on the upside they finally found the little ulcer that was putting me in the hospital every 3 months for transfusions. HGb is finally up to 14 for the first time in 3.5 yrs. so that kinda counteracted the fatigue for a while.. It was getting better before it got worse,lol. But still,I soldier on, Hope tou had a nice holiday and hae a nice weekend!:)

She can go anywhere but the surgical suite! I grew up on 500 acres. we had lots of animals. as far as precautions it is cats you have to avoid. They carry some weird germ or something. ADA says service dogs can go anywhere I go., but you have to make sure they are very well trained. A lot of rotten people are claiming their dogs are service dogs so they can take them places, and the don't behave properly and give real ones a bad name. At this point your dog does not need to be registered but if these jerks keep it up it is only a matter of time before we end up with another bloated govt. dept that makes it hard for the rest of us. Service dogs can even fly in the cabin of airplane fare free. (another reason people fake it) But if you dog is not trained to behave it just pisses off all the passengers. The ADA states they cannot ask what your disability is, which is good butt also makes it easier for fraud.My dog will be awesome! But I am a little biased,lol

@v1crew, It's been more than 9 days since we heard from you. So - How are you feeling? Is that platelet count cooperating? And did you bring Saoirse home yet?
Know that you are in my thoughts. I have a special concern for anyone with liver disease.
Rosemary

HI!
Well feel tired. go figure. Platelets still hanging around 50k. Decided after doing some research that my SCLE maybe caused by long term PPI use. Stopped taking them and is is far less severe. They say could take anywhere from 4-10 months to clear , so to speak. Yes, I went to Kentucky last weekend and picked up Saoirse!!! She is home and a happy handful! Expensive proposition but I am very glad I got her! She already threw me off my couch. Craig

It's clear who is going to rule the roost v1crew 🙂 What an adorable puppy. I hope you get full night sleeps again soon. I assume she is getting you up early or in the night.

Hi v1crew,
How are you? How's that adorable Saoirse?

@v1crew, Hi Craig, You have been in my thoughts recently. This is a particularly emotional time of the year for me as far as my liver history is concerned. Liver disease can be difficult. I sincerely hope that you are doing okay. Rosemary

hi,
well aside from the splenomegaly and hyponatremia, unbearable fatigue and lupus, things are great. I find myself wishing my score would go up so I would be on the hotlist and just get transplanted or not. It gets old. I have been 17-19 for 2 years now. If it is not one thing it is another. first it was bleeding then the spleens swelling,(which can be quite painful btw) now lupus . There is now schedule of events you can at least plan for.Saoirse does help keep me distracted with her training,funny thing is she already knows I am ill. a few days ago I slept through both my alarms (something I never ever do) and was dreaming it was raining. when I woke up she was licking my face and nipping at me and barking.She was worried. But that is what I am training her to do as I live alone.She will be there if I start bleeding out or having an HE episode, she will let me know I need to do something . She is super smart. Which is good because I can tell I am steadily losing IQ points. Ammonia is just high enough to make it hard for me to remember things. Also she is pretty good company, and yes spoiled rotten:)

just a litte spoiled

Craig, There aint nuttin wrong with a little spoiling!! She is worth the extra love that she is getting from you.
I am sorry that you are feeling poorly - but, that is what it is. Liver disease and all the extra stuff is nasty. I know where you are at. Been there; done that. It is no fun getting sick and waiting and wondering. You know you can come to Connect to chat anytime you get too bored.
It does sound like your adorable Saoirse is one smart and loving pooch. I'm happy for you to finally have her. She must surely be enjoyable to watch as she entertains herself. And how heart warming it must be, that she already knows that you are ill and has risen to the occasion of taking care of you.
I do have one good question for you. Earlier you had hinted that she had claimed the couch. When I had that awful fatigue, I literally lived on the couch, so I want to know - you guessed it,- Who gets the couch?
Thinking about you and all of the others who share your situation while waiting for a transplant.
Rosemary