getting listed

Posted by v1crew65 @v1crew, Jul 5, 2016

Hi,
I was wondering about trying to get listed after initial denial. I was denied A few months ago .They said I had a couple issues to address, which I took care of. They said I would be reconsidered, but no news. I have another appt coming up next week. My Meld score has jumped 4 points in the last 3 months as my sodium keeps dropping. I am starting to get worried. I was at 14 in April and after my latest labs came in I did a recalculation score of 18 was what I came up with at this rate I am going to deteriorate quickly . Any insights as to why I have heard nothing about my reconsideration for listing.
would be greatly appreciated. Thanks in advance

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@rosemarya

@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

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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.

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

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@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

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@rosemarya

@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

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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:)

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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

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As you see by the above photo she has a spare bed, which is right next to the couch. But she is small yet so we share,lol. I just got my labs back and i think they mixed my blood up with someone else’s. As rotten as I feel they cant be mine. not in 30 days. suddenly everything ih dead center in range? Something is amiss or I was abducted by aliens and got a transplant without knowing it. An investigation is pending,lol. there were only 5 things out of range and not by much could have been someone who wasn’t even sick. I know it seems unlikely, but something isn’t right. I was in ICU for 3 weeks when this first happened, have been banded at least 4 times, two bouts with ascites in the hospital an HE event(though not but grade 2) last mo my platelets were 46k.and have been dropping 10k a month. I get my labs done every 30 days so we will see. Funny they are never the same as they are at Mayo. When I go to the lab there are 50 people there the place is always packed so I could see a mistake being made. One more pain in the butt…. Anyway back to Saoirse. I recommend anyone who is able to get one just like her! She does make this a little easier to take,keeps me distracted, and is good company. shoulda done it sooner! Have a great day!

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@v1crew

As you see by the above photo she has a spare bed, which is right next to the couch. But she is small yet so we share,lol. I just got my labs back and i think they mixed my blood up with someone else’s. As rotten as I feel they cant be mine. not in 30 days. suddenly everything ih dead center in range? Something is amiss or I was abducted by aliens and got a transplant without knowing it. An investigation is pending,lol. there were only 5 things out of range and not by much could have been someone who wasn’t even sick. I know it seems unlikely, but something isn’t right. I was in ICU for 3 weeks when this first happened, have been banded at least 4 times, two bouts with ascites in the hospital an HE event(though not but grade 2) last mo my platelets were 46k.and have been dropping 10k a month. I get my labs done every 30 days so we will see. Funny they are never the same as they are at Mayo. When I go to the lab there are 50 people there the place is always packed so I could see a mistake being made. One more pain in the butt…. Anyway back to Saoirse. I recommend anyone who is able to get one just like her! She does make this a little easier to take,keeps me distracted, and is good company. shoulda done it sooner! Have a great day!

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Those lab results are odd. Especially since you are feeling so poorly. I hope that you can get to the bottom of this mystery pretty easily.
I am impressed with your ‘deal with it’ attitude.
I’ll be checking in on you and Saoirse again! Rosemary

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@v1crew Hi, Craig. Colleen suggested I check out this conversation, so here I am, not with regard to transplant, but service dog. I’ve had a service dog for around 6 years. My first one, Barnabas, died suddenly, without warning, last February. He was a wonderful dog, loved by everyone. He was an Aussie/Border Collie mix, whom I rescued as a puppy. I still mourn his death. A few weeks later, I stopped by the local shelter, and a dog had just been brought in, a 2 year old McNabb. I connected with Sadie in the first 5 minutes.

Sadie is quiet and calm, and very smart. She already had some basic commands down, though I think her trainer wasn’t consistent and used different commands than I do. I have a psychiatric service dog at the recommendation of my therapist, for major depressive disorder, PTSD, anxiety disorder and suicidal ideation. Barnabas was, and Sadie is handler trained, following online research.

ADA guidelines are online at their website. Among other things, certification isn’t required at present, though, as you say, fake service animals could change that; trained dogs can be found – for a substantial price – and a person can find a trainer to train their dog; business owners do have the right to ask only 2 questions: “Is the dog a service animal required because of a disability?” and “What work or task has the dog been trained to perform?” Often, the question I hear is “what kind of service dog do you have?” My reply is that she’s a psychiatric service dog, and that’s as far as it goes. I only say as much as I’m comfortable with. Almost without exception, curiosity is the reason for asking. I’ve only been asked by business owners a few times. Sadie is always with me. In restaurants, I request a booth, and I have a fleece lap blanket that I put down at the back of the booth for her to lie on. The blanket is always with me, as well, and is her stay space.

There are only two reasons for asking a handler to remove the dog: because it’s out of control and the handler can’t control it, or because the dog isn’t housebroken.

The only public building that can choose not to permit access is a church. (The one I attend welcomes Sadie.)

Sorry for writing so much, but I like talking about my dog.

Airlines – some may ask for some paperwork to prove that you have a disability for which you have a service dog. Technically, they aren’t supposed to ask for that, but it’s a good idea to have it with you, just to avoid problems. The only time paperwork that is legally required is in court. I keep it in a file at home, and carry with me a printout of the ADA requirements.

Keeping people from petting Sadie is an ongoing problem, even though it says DO NOT PET on her vest. People will notice the Do not pet patch, say oops, and go on petting. Grrr. The rules I wish everyone knew are Do not touch, do not make eye contact, do not talk to her. Or anything else that moves her attention away from me to another person. I get tired of saying no.

I think my profile picture is Sadie. I recommend that anyone with a disability, for which a dog could perform a legally recognized task, at least consider the idea of a service dog.

Jim

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@colleenyoung

Hi @v1crew, just checking in. How are you doing? I like the new pic.

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FYI Saoirse is Gaelic/Irish for LIBERTY, Bas No Saoirse!

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@rosemarya

@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

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Hi Rosemary IDK how all these msgs got lost,lol

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@colleenyoung

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

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Me I am OK I guess, kinda the same you know up down,up, down Saoirse on the other hand is Awesome! We are working on her training, and she is coming along,. it is hard but It is a good distraction for me. Her being a puppy makes it hard to be out in public with her , paparazzi, you know. But everyone wants to pet her , and that is something you can’t let them do. Makes me feel bad for Saoirse as she is a friendly dog. It is also kinda tough because she has been bred to be a hunter, so she is very curious, but we will get through it.

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