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

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!

Jump to this post

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

REPLY

@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

REPLY
@colleenyoung

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

Jump to this post

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

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

Jump to this post

Hi Rosemary IDK how all these msgs got lost,lol

REPLY
@colleenyoung

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

Jump to this post

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.

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

Jump to this post

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

Jump to this post

@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

Jump to this post

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

Jump to this post

@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

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

Jump to this post

Rosemary, most of us like animals, and it’s natural to want to interact with them. I’m no exception.

Many people understand the importance of not distracting a service dog, and I appreciate those people. When someone asks if they can pet, I usually thank them for asking. And I always like hearing compliments about Sadie.

With Barnabas, I had a policy that little kids could pet him. He always stood perfectly still, right next to me. But I decided not to do that anymore. (I’m amazed how many parents let their children walk up to a strange dog and start petting them.)

Visiting Hospice patients has been good training, getting used to wheelchairs and walkers. When I found her she was skittish and fearful, but after a year now, she’ll put her head in laps and let a person with a walker touch her. I know that could be confusing, but I’m counting on her high intelligence to pick up the finer points.

My wife has a small rescue dog that was picked up on the streets of San Bernardino, California, and flown to Seattle by a rescue group. Our daughter lived there and saw him at an adoption fair, called us, and we drove up there and brought him home (for a price). Though he’s not a service dog, sometimes he serves me well.

I hope you’re doing well, Rosemary, and I pray for you, @v1crew, Craig, every night. I hope you’re making progress toward your transplant.

Jim

REPLY

@gailfaith here: Enjoyed your input on service animals. I used to train guide dogs for the blind. I was one of the first women if not the first woman to be accepted by an established school years ago now. For 58 years I had smooth collies all related as the first 10 or so years I bred. I showed in breed and obedience as well as agility, tracking, herding etc. All my dogs had at least their CD (Companion Dog title, the first obedience title awarded by AKC.) and yes, the pic posted by CONNECT is a picture of my last smooth, Tani, (“tah-knee”) who I trained to be my service dog when I became disabled due to a Dr.’s mistake.

Tani had all AKC obedience titles, two tracking titles and two rally titles, besides being a breed Champion. I was Dx at Mayo with Myotonic Dystrophy in 2013. With all of his training, didn’t have any problems with him in public, including trains, planes, ships, etc, including a motorcycle ride. He was also a Reading Educational Assistant Dog, a therapy dog, and a hospice dog and when I moved to a retirement community we became crisis response team. We were deployed to the NJ shore after Super Storm Sandy rolled thru there and to a high school when a student drowned over a weekend while on a fishing trip with a family.

When I trained Tani to be my service dog I think he laid awake nights thinking what more he could do for me. He trained himself to do things I wouldn’t have even known how to start to train him. One thing I did train him for was to bring me a cordless phone in the house in case I fell as I needed help to get up. One day I did fall and hit my face on the floor and when I sat up I realized I was bleeding so I didn’t want to use my cell so I asked him to bring me the phone. While still on the floor waiting for help to come, he brought me HIS pillow! I would have never thought to ask for that!

The very last thing Tani did for me in Jan of 2015 was to pick up something that fell out of my pocket without my knowledge and without my asking and handed it to me. As he handed it to me, he collapsed and the the vet and I think he had a stroke and we put him down within two hours. I think he would have been miserable not being able to serve me. So happened that day about 3 hours after he collapsed I had a physical therapy appt. I knew I had about 30 minutes to make that appt so after seriouis thought I asked the vet to put him down. When I said that to the vet, I also said I have a PT appt in 30 minutes. The look I got was one of disbelief at my rapid decision so I explained that my therapist was very special to me and that I knew I’d get the emotional therapy I needed from him.

Service dogs ARE amazing. When I first started to train guide dogs, I was told about people who have pet rats that they keep with them always saying they are service animals. It is a shame how people take advantage of the liberties granted to trained service dogs.

I went back about two weeks later to chat with the vet. I told him why I put him down so fast and he cut in a gave me the answer……..he would have been miserable not being able to to serve me.

REPLY

@v1crew, Craig, I want to drop by and say hi. And to pass on a message that I received last week from a member: I hope you “have a good weekend. And enjoy the sunshine and spring flowers”.
I’ll bet that Saoirse has grown a lot.
I want to share with you a link to Transplant 101: Preparing for your Transplant..
https://connect.mayoclinic.org/discussion/transplant-101-preparing-for-your-journey/
You probably know all of this, but I thought you might enjoy spending some time with others who are going to need transplants.
Colleen and I are registered – Pour a cup of coffee, or tea, or water, and join us !
Rosemary

REPLY

@v1crew, Craig, I haven’t seen anything posted by you recently. I am worried about not hearing from you. I hope that you are okay.
Sending you a virtual hug,
Rosemary

REPLY
@rosemarya

@v1crew, Craig, I haven’t seen anything posted by you recently. I am worried about not hearing from you. I hope that you are okay.
Sending you a virtual hug,
Rosemary

Jump to this post

Just been busy. Had another apt last week sodium went up but I think it was a fluke as it was much lower 2 weeks prior. So things are basically the same. still dealing with the SCLE But hopefully we are getting that under control. Other than that I just continue to work on training Saoirse. It is coming along, albeit slowly. But I guess she is still a puppy (7) mo. Thanks for touching base Craig

17157574_725139707663124_736693599737419778_o

REPLY
Please login or register to post a reply.