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

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@colleenyoung

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

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Hi. Well I went for another appt on 24 Oct. same is same. MELD still 18. but my PACT score was raised to 2.5 so that was good. I had a strange rash no dermatologist in town could diagnose after 7 visits to different Drs. So I made an appt while I was there and found out I have SCLE, which is awful because I am outside ALL the time. I had to be in the 3 out of 10 cases that were male. Figures. But other than that and a platelet count that is dropping precipitously I am good as can be expected. On another note I am picking up Saoirse in 9 days! Hope everyone has a nice Holiday!

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@colleenyoung

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

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Good to hear from you Crew! So sorry to hear about the new diagnosis of subacute cutaneous lupus erythematosus. You’ll have to be careful with sun protection, but that shouldn’t stop you from being outside. What can you do about the platelet count?

Saoirse is adorable. 9 days and counting!

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@colleenyoung

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

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@v1crew, Will clothing and/or sunscreen work for the SCLE? After transplant you will have to use sun protection. It looks like you will need to get an early start. There is a lot of good sun protective clothing on the market. It is also made to be breathable for hot weather. Some brands are better than others. My hint is to look online at the clearance and end of season sales.
I hope that the platelet drop you mention is not going to be a problem for you.
Your service puppy, Saoirse is cute. Are you involved in any kind of training with your dog?
Rosemary

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@colleenyoung

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

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The platelet count is caused by splenomegaly. really nothing I can do right now. Transfusion is about the only option.As far as the sun goes it is 95 degrees everyday in the summer. And humid. The one thing good that came out of being sick is for some reason for the first time in my life I could go in the sun and not look like a lobster, i would just tan. Haven’t got a sunburn in almost four years. I think the jaundice has something to do with it , I don’t know. Everything got a little weird.I am suprised you didn’t comment on my puppy’s name,lol. Anyway I just keep doing what I have to do.:)

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@colleenyoung

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

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HI!
Yep since I live on almost no money I have become the bargain king! I am going to train her myself while I am still able. Get AKC good citizen certification, etc. She will be with me all the time so I am going to have to spend a lot of time training her as she can go anywhere I do.I know someone who is a professional dog trainer to help with the finer points for almost free. I want her to be able to alert when I might have HE issues or low hemoglobin, etc. She is a bird dog so she has an exceptional nose for even a dog. Also I will train her to find my keys, phone that sort of thing. (as this illness moves along my memory is suffering) As an added bonus I will have an incredibly loyal companion, which I will enjoy as I live alone. So that will improve my well being! In the meantime I am just going to hurry up and wait,lol.

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@colleenyoung

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

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@v1crew, Okay, I did not comment on the puppy’s name, because I did not know what to say. I was thinking it had something to do with a previous Gaelic reference that you and Colleen had made some time ago! So here goes! Where did you get the name? And how do you pronounce it?
I recall having a couple blood transfusions. But I do not remember why. I was in a situation where my kidneys failed and there serious complications, hospitalization, and dialysis.
Jaundice, when it is light, does have that one good feature of a suntan. After transplant, you will need to be real careful of sun, because meds will make skin more sensitive to skin cancer. As far as the heat, humidity, and protective clothing: I am the lady who hikes in the Smokeys in June with the long pants, long sleeve shirt, and wide brimmed hat! I sweat like crazy, but I do that anyway – got it from dad’s side of family. But I do not get ticks, mosquito bites, or poison ivy!!!
How are you feeling these days?
Rosemary

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@colleenyoung

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

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That is absolutely amazing! (not the money thing, but the dog thing). Will you be able to take her to medical appointments with you?
Will you need to take any special precautions after your transplant? I have never been around animals so I just don’t know how to do all that you are planning to do with her. I admire your ‘take charge’ approach to all of this.
Keep putting one foot in front of the other.
Rosemary

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@colleenyoung

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

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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!:)

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@colleenyoung

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

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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

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@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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@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!
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

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