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

Interested in more discussions like this? Go to the Transplants Support Group.

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!

REPLY
@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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@jimhd

@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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Hi Jim, I am with you on the no pet thing. People don't get it I am having a tough time already trying to train a llewellin setter into a service dog without extra distractions. I got her to be a medical alert dog for me as I have internal bleeding events and live alone. she is only 4 mo old but already knows I am ill.It is hard taking her to stores and such right now because of her curiosity but it will get better as she gets older. The bus divers gave me grief the other day said she looked like a bird dog not a service dog so I asked him what a service dog looks like..lol .When I ordered her vest I asked for in training patches but the sent me regular patches so I have to order more. Training patches would quell some questions. yes I am going to get another copy of my paperwork from one of my 20 or so Drs to keep with me. I have already printed a copy of the ADA regs. to show anyone if they ask. And I like talking about my dog as well:) Craig

REPLY
@jimhd

@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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@v1crew

I know that my medical issues don't compare to what many others suffer from. I hope that you find some resolution soon, Craig.

I've had a hard time training heel. Sadie is a sniffer, and wants to follow every scent. She does fine in stores and other buildings, but I don't walk outside much because it makes my feet hurt too much. I started using a Halti harness yesterday, and she fought it at first, but she figured out pretty quickly that if she stays with me and doesn't pull or follow a scent, it's not that bad.

I'm a volunteer for Hospice, visiting patients in their homes or hospitals or care centers. Sadie understands that I invite patients to pet her, and I sometimes give a patient some dog treats to give her. That helps Sadie know it's ok to be petted by that person. She's learning that she has to ignore people, even if they're talking to her.

A lot of people think I'm training my dog for someone else. I think that maybe I'll print up a card to show people who want to pet or make over her, that says
I KNOW IT'S HARD, BUT
NO PETTING
NO EYE CONTACT
NO TALKING!
(Cesar, the dog whisperer)

I assume Saoirse is wearing her vest. Better just to have a service dog patch than nothing. I was surprised that the bus driver thought she didn't look like a service dog. Pretty amazing. I see all kinds of dogs, from mini poodle to German Shepherd.

I'm glad that she's already serving you. I know she'll make a difference in your life.

I would post some pics of Sadie and Barnabas if I could figure out how.

Jim

REPLY
@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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Craig, All of your messages have been coming in as far as I can tell. Sometimes my emails are delayed, but the internet Connect are right on time!
Rosemary

REPLY
@jimhd

@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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@jimhd, Thank you for sharing this information about service animals. I was not familiar with the ADA guidelines and requirements. I have always admired watching the dedication and focus that I see in a working service animal. And the unison, kind of a 'marriage of the minds', between handler and the dog is beautiful. I do know that I should not pet or interfere, but if appropriate I like to acknowledge the handler with a smile, nod, or a "beautiful dog" comment.
Wishing you a good day today and tomorrow and the next day, and on and on.
Rosemary

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