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

@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

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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

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@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

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Liked by v1crew65

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@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

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

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@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

@rosemarya

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

Jim

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@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

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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

20170502_112009

20170502_112009

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@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

@v1crew

Too true. Life does just keep coming at us. For me, sometimes I can handle the hits and keep going. Other times, it’s not so easy. I become more depressed and sit in my recliner most of the day, rather than doing something from the very long list of things that need to be done.

How do you find the ability to press ahead when the hits keep coming?

Jim

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@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

@v1crew -Hi Craig. I am sorry to hear of this complication that you are facing. will you be going to Mayo Jacksonville for this? I will be thinking of you on 29th. You are often in my thoughts because of your liver issues.
Thanks for the picture of your precious Saoirse! I know you and she are good for each other.
Have you seen the new discussion about animals that is going on? I will send you the link when I get back on my computer next week.
Rosemary

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@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

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@v1crew -Hi Craig, I’m home, and back at the computer – I was in Rocky Mountain National Park for some hiking and outdoor sights.

I remember that I did not feel much like making conversation when I was waiting for transplant, with all the health miseries that occurred. But I would like to share these new discussions about animals that you might enjoy just reading. I imagine that you might feel a smile or enjoy a moment of diversion as you read and enjoy them.

What Pets Can Do: Health and Healing
https://connect.mayoclinic.org/discussion/what-pets-can-do-health-and-healing/
The Value of an Animal
https://connect.mayoclinic.org/discussion/the-value-of-an-animal/
Sending good thoughts and wishes for the 29th.
Give Saoirse a pat on the head for me,
Rosemary

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@rosemarya

Is that a Mayo Clinic tattoo? on you?

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@v1crew First, where is this picture, I don’t see it on any posts?
It definitely sounds like you are still under consideration if testing and appointments continue. I understand your concern though. I too wondered if I would ever get up there high enough to be a legitimate candidate for transplant. My transplant was in Boston which is an area where MELDs tend to be higher to get transplanted but being a B blood type I was fortunate and was transplanted at MELD 28. It was so much sooner than I anticipated, we were stunned when we got the call and really not totally ready but I pulled almost everything together quickly and off we went, to my future, and it’s been the greatest gift ever, for which I am thankful every day.
I wish you luck in not having terrible symptoms and in having a very timely transplant.
Try to get as much exercise as you can tolerate. I was told that really helps in recuperation and I think it did. At one point I was told that because I had lost weight and had really gotten in shape (as much as possible at my age considering I was never in shape before) my hospital stay could be as short as 4 nights. The last month though things went downhill and I got no exercise so I did end up in for six days.
JK

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