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v1crew65
@v1crew

Posts: 44
Joined: Jul 05, 2016

getting listed

Posted by @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

REPLY

Congratulations on correcting the issues that needed to be addressed! Being proactive in your treatment is vital. Your Meld score alone is not the sole indicator for listing. I understand your fear and concern over the increase. In my lay person understanding, the Meld indicates something is beginning to happen in your liver. It really depends on what is the cause of the rising meld. But sometimes, medications and treatments can slow that progress. Before I transplanted in 2009, my meld was all over the place while on a gradual upward climb. Also I am not surprised that you have not heard from them; you say that have a scheduled appointment next week. That is when you will be able to have the discussing about possible listing. I encourage you to make a list of your questions. And if possible, take someone with you, an extra set of ears is helpful. I wish the best for you. Let me know how it goes. I’m also ready to answer your questions that you might think of. Rosemary – liver/kidney 2009

Is that a Mayo Clinic tattoo? on you?

@rosemarya

Is that a Mayo Clinic tattoo? on you?

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I am already taking a lot of medicine.the usual list. lasix,aldactone ,xifaxin,pantoprazole ,lactulose, potassium magnisiun etc,etc I was diagnosed 3 years ago and oher than banding and blood transfusion , I guess I am as well as can be expected. I am doing everything I can to stay as healthy as I can, until hopefully this transplant happens. But I am concerned that I am getting to the point where I can no longer be compensated by drug therapy. so I would like to get things moving along. I guess what I am asking is if they are still making appointments for me (MRIs,Echos)would that indicate that I am still under consideration. And Yes it is . They haven’t seen it yet.. Ny Labs came back really well and I know after a transplant you can’t get tattoos. It is the first one I ever got,and probably the only one. I figure they are helping me stay alive, plus only a very few recognize it. This is my fourth appt and they have already told me i will have another one 6 months after this one. If those numbers had not been so bad I wouldn’t worry so much. But it is stuck in my head, But I get them every month and this time there was a big change.

I can honestly tell you that I know what fears and anxiety you are going through. Unknowing and waiting for answers is very difficult. I took lots of meds before my transplant, too. But I do not even remember what they were. All of those tests are giving a picture of what is happening inside you.. Many tests, labs, and scans will create an accurate assessment for your doctors to use in your treatment plan. If you are eligible to move forward to be listed, then you will assigned a pre-transplant nurse (at least this is the way it was at Mayo) and he/she will be able to provide additional support and direction. It sounds like you are headed to Mayo,. Is that right? Believe me, they will adjust your appointments and treatments to match your own medical needs. I hope you will have a better idea of what lies ahead after your appointment.

@rosemarya

I can honestly tell you that I know what fears and anxiety you are going through. Unknowing and waiting for answers is very difficult. I took lots of meds before my transplant, too. But I do not even remember what they were. All of those tests are giving a picture of what is happening inside you.. Many tests, labs, and scans will create an accurate assessment for your doctors to use in your treatment plan. If you are eligible to move forward to be listed, then you will assigned a pre-transplant nurse (at least this is the way it was at Mayo) and he/she will be able to provide additional support and direction. It sounds like you are headed to Mayo,. Is that right? Believe me, they will adjust your appointments and treatments to match your own medical needs. I hope you will have a better idea of what lies ahead after your appointment.

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Yeah, your right,just gotta deal with it, I will know soon enough. Just stress me a little. I have a just get done with it mentality , which is a blessing and a curse! Yes that is where I go. I started at Shands but changed insurance and they said I could go to Mayo, and I knew their reputation, as well as the fact that they transplant at a lower score.so it was a no brainer.After all the hospitials I have been to,they are nonpariel. I do have a pre-transplant nurse,who is excellent at her job and very helpful..The staff is fantastic over there and I am confident in their abilities.I will see her this visit. Just to clarify I have been going there for the last year. I have been through the evaluation and that was the first letter I received. last fall, it said I would be reconsidered after 3 months, and I still haven’t heard. I guess that is why I am getting anxious. Believe me I am doing everything I can! I guess i will know something at my next appt.From what you wrote my situation is better than I though it was. Thanx

@rosemarya

Is that a Mayo Clinic tattoo? on you?

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I put a pic of the kind of puppy i am getting and Colleen thinks I am female! HA! I couldn’t get the one of my tattoo right side up, We will try this one..see if anyone knows what it references.hint it is nothing bad. no cheating. Good night and thanks again!

@rosemarya

Is that a Mayo Clinic tattoo? on you?

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Hi @v1crew, my apologies for the gender mix-up. Craic I know is Irish for “fun and music”, so is it safe to assume that you are someone who likes to share and spread both? (You can’t expect someone with the name Colleen not to recognize the gaelic can you?)

By the way, the discussion here between you and Rosemary has been very informative. So glad you posted your concerns and questions about getting on the transplant list. Welcome to Connect.

@rosemarya

Is that a Mayo Clinic tattoo? on you?

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Thank you, I am not very good with websites and such, so I could be posting things in the wrong places. But one thing about being am sick, I don’t need to be anywhere at 7 am 6 days a week. so I spend most of my time researching and working towards my medical degree from University of Google!

Hi, @v1crew. How are you getting along? I haven’t seen any posts lately by you, and I’m just wondering. Did you get your service dog? (I think I saw somewhere that you hoped to get one). How’s your energy and appetite doing? Rosemary

@rosemarya

Hi, @v1crew. How are you getting along? I haven’t seen any posts lately by you, and I’m just wondering. Did you get your service dog? (I think I saw somewhere that you hoped to get one). How’s your energy and appetite doing? Rosemary

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Just been busy .. Got moved that was a pain, but worth it . Probably wont get my puppy till the end of Nov. Thats ok still have a few payments to go. But it will be worth it. Might be living on water strew for a while.lol I was ot expecting to see this pup ti;ll about Jan ,so I will have to step things up. Going back to Jacksonville in Oct. More tests MRI blood etc. last time I went my score jumped up 5 pts in 3 months, Not good. But thems the breaks , as they say. I will just keep doing what I am doing, try to stay as healthy as I can. Not much of anything else I can do. Got my diet as good as I can and stay on top of medications. I try to get as much exercise as I can tolerate.When I don’t feel good that is none but You know how it goes. Some days chickens,some days feathers lol

@rosemarya

Hi, @v1crew. How are you getting along? I haven’t seen any posts lately by you, and I’m just wondering. Did you get your service dog? (I think I saw somewhere that you hoped to get one). How’s your energy and appetite doing? Rosemary

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Good for you, @v1crew! moving on the best of days is a real pain!! I admire your attitude. It sounds like things are moving along. Congratulations on being proactive in keeping on course with your diet, medications, exercise. I’m sure that you have been told that all of these things will be to your benefit when transplant time finally arrives! It helps with both surgery and recovery (I know that for a fact). You’re bound to be excited about that puppy! Man, you’ve got 2 great things to look toward in your future. I’ll end by sharing what my local GI told me after I was listed and going thru all preliminary things. He said to, “Think of it as preparing for a trip. Right now we are packing the suitcases and loading them in the van. So that when it is time to pull out of the driveway, You’ll be ready.” Hope today is one of your good days. Rosemary

@rosemarya

Hi, @v1crew. How are you getting along? I haven’t seen any posts lately by you, and I’m just wondering. Did you get your service dog? (I think I saw somewhere that you hoped to get one). How’s your energy and appetite doing? Rosemary

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That is an excellent way to put it!

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

@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!

@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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