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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Jim, Volunteer Mentor | @jimhd | Jan 26, 2017

In reply to @jimhd "@v1crew Hi, Craig. Colleen suggested I check out this conversation, so here I am, not with..." + (show)

@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

gailfaith | @gailfaith | Jan 26, 2017

@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.

Rosemary, Volunteer Mentor | @rosemarya | Mar 10, 2017

@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

Rosemary, Volunteer Mentor | @rosemarya | May 13, 2017

@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

v1crew65 | @v1crew | May 16, 2017

In reply to @rosemarya "@v1crew, Craig, I haven't seen anything posted by you recently. I am worried about not hearing..." + (show)

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

Rosemary, Volunteer Mentor | @rosemarya | May 16, 2017

In reply to @rosemarya "@v1crew, Craig, I haven't seen anything posted by you recently. I am worried about not hearing..." + (show)

Craig, Thanks for the reply. I am happy to hear from you. I can't believe that you sound like me: comparing and explaining lab results! I think it makes us 'fee'l like we have some control!
Is there a treatment for SCLE? other that avoiding sun, do you do anything else? I am glad you are getting it under control. I hope that you continue in that direction.
Thanks for the picture of Saoirse. She is even cuter than last photo. I think the two of you are good for each other.
Keep on talking care of yourself.
Rosemary

Jim, Volunteer Mentor | @jimhd | May 16, 2017

In reply to @rosemarya "@v1crew, Craig, I haven't seen anything posted by you recently. I am worried about not hearing..." + (show)

@v1crew

Rosemary, Volunteer Mentor | @rosemarya | May 17, 2017

In reply to @rosemarya "@v1crew, Craig, I haven't seen anything posted by you recently. I am worried about not hearing..." + (show)

@jimhd, Did you intend to make a reply? Rosemary

Jim, Volunteer Mentor | @jimhd | May 17, 2017

In reply to @rosemarya "@v1crew, Craig, I haven't seen anything posted by you recently. I am worried about not hearing..." + (show)

@rosemarya

I did write a post, but somewhere else. I accidentally clicked on post. My oops.

Jim

v1crew65 | @v1crew | Sep 16, 2017

In reply to @rosemarya "@v1crew, Craig, I haven't seen anything posted by you recently. I am worried about not hearing..." + (show)

SCLE they give you Hydroxocholquine, and stay out of the sun. But now I have a little cancer near my eye that they have to cut out consultation with surgeon is the 29th. The hits just keep on coming,lol,
Craig

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