Share this:
tim
@tlopez

Posts: 2
Joined: Aug 05, 2017

meld score is a 12 ?

Posted by @tlopez, Aug 4, 2017

so i barely understand this meld score thing and it scares me to my bones , so when i need a transplant this number is my ticket to one? if i need one . but see thats my question. am i just right to live 4 awhile till im older then im gonna need one right basically im in denial that i cant live on my liver 4 ever .and the anxiety and just everything gits me thinking im goin crazy and dumb 4 not taking this disease or sickness more serious i wish there were more programs where im from (stockton, california) 4 young people i was only 25 when yhey told me my liver was bad i been struggling ever .since .im 31 years old i now have varices that bleeded out i had to get bans on them .in December ,thats what it took for me to realize that i am sick and i might REALLY die. sorry i got side tracked .but i cant see myself basically waiting to see if i get better or not at my next blood test .when i look up information on the net,its all different i need some FACTS some answers to my questions like is it better to move out of California for a better chace at getting a liver? or protein is good for your liver and malnutrition but is hard on the liver? can i get hepatitis from having cirrhosis? symptons and ?s about HE? i have kaiser permanente .and my dietitian was a joke
that i think is my biggest concern now is getting the right nutrition i was 450 in dec.16 im 340 now i feel good but this news git me feelin like i did when i first found out. i would love any feedbacks or info web sites etc.. peace

REPLY

@tlopez Let me welcome you to Mayo Clinic Connect! I am really sorry for all the fears and anxieties your situation is creating. I am confident many other transplant members including @contentandwell will have thoughts for you.

If I understand you correctly, you lost over 100 pounds, is that right?

@lisalucier

@tlopez Let me welcome you to Mayo Clinic Connect! I am really sorry for all the fears and anxieties your situation is creating. I am confident many other transplant members including @contentandwell will have thoughts for you.

If I understand you correctly, you lost over 100 pounds, is that right?

Jump to this post

yes 120 thanks .yeah i gave up red meat in January and healthy but i also had a gastric bypass when i was 17 i was almost 500 lbs but got to 280 then got sick and so fourth .yea crazy life in this 31 years of life

@tlopez, Welcome to Mayo Clinic Connect. I can hear the fear and panic in your words. I want to share 2 web sites that will provide you with the data that you are looking for.
United Network for Organ Sharing (UNOS): http://www.unos.org
Transplant Living: http://www.transplantliving.org

Tim, I am old enough to be your mom, and my first word of advice to you is, “Take a deep breath, and try to calm down”. Panic mode will not do any good for you. You made reference to labs, so I assume that you are under care of a medical professional. That is a good thing. Patience! Patience! Patience! Remember that your condition did not come on suddenly; your labs most likely will not change suddenly, either.

Good for you with regard to you concern for the weight issue. I do believe that you and your doctor need to discuss what kind of nutritional needs that are best for you.
Let me know if I can be of further assistance.
Sending you hugs and hope,
Rosemary

@tlopez, @rosemarya is one of the wise mentors on these groups and as always she is right. You do need to try to not panic, despite how scary this all is. Try to live your life as well as you can and to do all you can to be healthy. Observe those things and don’t dwell on the negative. I know from experience, easier said than done, but living the best life you can really is the best way to not let this get the better of you.

When you get a MELD score that will help you in putting things in perspective and be some indication of how long you might have to wait for a transplant. For me, it’s always better to know things than to be in the dark. If you are really miserably sick you may want to consider double listing in a region where transplants happen at a lower MELD than in CA. My center was in Boston which historically transplants on the higher side of MELD scores but I thankfully was transplanted at 28, probably because I am blood type B. Initially I had considered double listing in CA because our son lives there and we could be with him, but when I heard that CA would not be any better than Boston I did not of course.

I was apprehensive about transplant and considering not going through with it until that last six weeks or so. Things got bad then so when I happily got that call, months sooner than anticipated, we were both speechless, and off we went. At that point neither my husband felt the least bit nervous, we both basically felt relief.
So hang in there, do your best and try to be positive. That’s all the advice I can give you.
JK

Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful. My work has me out of Phoenix at the time which is a blessing as it has me next to Mayo. What I have learned in the past year since being diagnosed:
1. Mayo Hospital is the leader on Transplants
2. California has a longer wait for livers. As they only will do low-risk transplants.
3. Mayo is very strict when it comes to following the rules for patients.
4. Mayo has many classes that you have to go through, complete and pass.
5. The Meld score is how you are evaluated for a transplant (Mine is 26).
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
7. They will not accept a paid care giver source and prefer a family member. They also need to go through a care giver class.
8. The post prescriptions can run thousands each month.
Best Wishes to you!
Dave

Hi Tim, I’m just checking in to see how you are doing? JK, Rosemary and David have offered quite a bit of very useful information. I know that this can be a confusing time. I’m just wondering if you might have more questions for us.

In the meantime, you might wish to read more from Connect’s Transplant page and blog here: https://connect.mayoclinic.org/page/transplant/

Let us know if you have more questions. It’s quite a journey that you’re on and I’m sure you’ll have questions now and more in the future.

Liked by tim

@davidgenebarnes

Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful. My work has me out of Phoenix at the time which is a blessing as it has me next to Mayo. What I have learned in the past year since being diagnosed:
1. Mayo Hospital is the leader on Transplants
2. California has a longer wait for livers. As they only will do low-risk transplants.
3. Mayo is very strict when it comes to following the rules for patients.
4. Mayo has many classes that you have to go through, complete and pass.
5. The Meld score is how you are evaluated for a transplant (Mine is 26).
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
7. They will not accept a paid care giver source and prefer a family member. They also need to go through a care giver class.
8. The post prescriptions can run thousands each month.
Best Wishes to you!
Dave

Jump to this post

@davebarnes @tlopez

I found Dave’s post interesting:
2. California has a longer wait for livers. As they only will do low-risk transplants.
I think the fact that some places only do low risk causes the SRTR stats to be a bit unreliable because if a center only does low risk it
will of course appear to have better outcomes vs a transplant center that takes higher risk candidates. I used MGH and they are
fabulous but do not look as good as some others on that database.

6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
Hmm, I do not recall that being a requirement at MGH. Maybe it was discussed initially though and I just forgot.

8. The post prescriptions can run thousands each month.
Really? I am very fortunate in that we pay very little, thankfully, and I was not aware that they were so expensive. The only
pharmaceutical that has been that costly for me was xifaxan, prior to transplant.

Good info, Dave. I would have loved to double list in southern CA since my son lives there but when I found out that the wait there was worse than Boston I did not bother. If I had double listed it would have been at Mayo, they were very encouraging.

JK

Liked by tim

@davidgenebarnes

Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful. My work has me out of Phoenix at the time which is a blessing as it has me next to Mayo. What I have learned in the past year since being diagnosed:
1. Mayo Hospital is the leader on Transplants
2. California has a longer wait for livers. As they only will do low-risk transplants.
3. Mayo is very strict when it comes to following the rules for patients.
4. Mayo has many classes that you have to go through, complete and pass.
5. The Meld score is how you are evaluated for a transplant (Mine is 26).
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
7. They will not accept a paid care giver source and prefer a family member. They also need to go through a care giver class.
8. The post prescriptions can run thousands each month.
Best Wishes to you!
Dave

Jump to this post

@contentandwell This is a very good point. Thankfully SRTR has a risk-adjustment model that takes into account donor and recipient characteristics. When looking at SRTR graft or patient survival outcomes it’s important to look at the percentage that is listed for, “Expected probability of surviving…” which will say, “(adjusted for patient and donor characteristics)” beneath it. This means that the percentage takes into account the unique characteristics of that center’s transplant patients. For example, Mayo Clinic often takes on high-risk cases that other centers turn away and this is accounted for in SRTR’s expected probability percentages but is not accounted for in SRTR’s estimated probability percentages.

We know this can be a bit confusing so in our recent blog post on” Using the Scientific Registry of Transplant Recipients” we walk through a specific example of this from one of our campuses, if you are interested take a look at #5 in the post: https://connect.mayoclinic.org/newsfeed-post/transplant-resource-using-the-scientific-registry-of-transplant-recipients/

@davidgenebarnes

Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful. My work has me out of Phoenix at the time which is a blessing as it has me next to Mayo. What I have learned in the past year since being diagnosed:
1. Mayo Hospital is the leader on Transplants
2. California has a longer wait for livers. As they only will do low-risk transplants.
3. Mayo is very strict when it comes to following the rules for patients.
4. Mayo has many classes that you have to go through, complete and pass.
5. The Meld score is how you are evaluated for a transplant (Mine is 26).
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
7. They will not accept a paid care giver source and prefer a family member. They also need to go through a care giver class.
8. The post prescriptions can run thousands each month.
Best Wishes to you!
Dave

Jump to this post

@NatalieR, Thank you for the explanation. This does get confusing. Rosemary

@davidgenebarnes

Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful. My work has me out of Phoenix at the time which is a blessing as it has me next to Mayo. What I have learned in the past year since being diagnosed:
1. Mayo Hospital is the leader on Transplants
2. California has a longer wait for livers. As they only will do low-risk transplants.
3. Mayo is very strict when it comes to following the rules for patients.
4. Mayo has many classes that you have to go through, complete and pass.
5. The Meld score is how you are evaluated for a transplant (Mine is 26).
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
7. They will not accept a paid care giver source and prefer a family member. They also need to go through a care giver class.
8. The post prescriptions can run thousands each month.
Best Wishes to you!
Dave

Jump to this post

My MELD score is now 23 and I am told not to worry about the score. I am number 4 on the O type blood list and am told to expect a liver within one to six months. Good Luck to you.

@davidgenebarnes

Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful. My work has me out of Phoenix at the time which is a blessing as it has me next to Mayo. What I have learned in the past year since being diagnosed:
1. Mayo Hospital is the leader on Transplants
2. California has a longer wait for livers. As they only will do low-risk transplants.
3. Mayo is very strict when it comes to following the rules for patients.
4. Mayo has many classes that you have to go through, complete and pass.
5. The Meld score is how you are evaluated for a transplant (Mine is 26).
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
7. They will not accept a paid care giver source and prefer a family member. They also need to go through a care giver class.
8. The post prescriptions can run thousands each month.
Best Wishes to you!
Dave

Jump to this post

@davebarnes

Thanks for the regular updates – always good to hear about your progress!

Teresa

@davidgenebarnes

Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful. My work has me out of Phoenix at the time which is a blessing as it has me next to Mayo. What I have learned in the past year since being diagnosed:
1. Mayo Hospital is the leader on Transplants
2. California has a longer wait for livers. As they only will do low-risk transplants.
3. Mayo is very strict when it comes to following the rules for patients.
4. Mayo has many classes that you have to go through, complete and pass.
5. The Meld score is how you are evaluated for a transplant (Mine is 26).
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
7. They will not accept a paid care giver source and prefer a family member. They also need to go through a care giver class.
8. The post prescriptions can run thousands each month.
Best Wishes to you!
Dave

Jump to this post

@davebarnes Dave, that sounds very positive. That is a low MELD for them to tell you to expect a live so soon. May I ask where your transplant center is?
I am just so thankful that I got mine sooner than anticipated because I had suddenly started going downhill fast.
JK

@davidgenebarnes

Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful. My work has me out of Phoenix at the time which is a blessing as it has me next to Mayo. What I have learned in the past year since being diagnosed:
1. Mayo Hospital is the leader on Transplants
2. California has a longer wait for livers. As they only will do low-risk transplants.
3. Mayo is very strict when it comes to following the rules for patients.
4. Mayo has many classes that you have to go through, complete and pass.
5. The Meld score is how you are evaluated for a transplant (Mine is 26).
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
7. They will not accept a paid care giver source and prefer a family member. They also need to go through a care giver class.
8. The post prescriptions can run thousands each month.
Best Wishes to you!
Dave

Jump to this post

Good morning JK. I am in Phoenix going through Mayo. I was told my MELD score was right in the middle. However being a large man (6,4″) and having a common blood type my chances of a quick transplant are quicker. I have been feeling downhill for well over a year now.

@davidgenebarnes

Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful. My work has me out of Phoenix at the time which is a blessing as it has me next to Mayo. What I have learned in the past year since being diagnosed:
1. Mayo Hospital is the leader on Transplants
2. California has a longer wait for livers. As they only will do low-risk transplants.
3. Mayo is very strict when it comes to following the rules for patients.
4. Mayo has many classes that you have to go through, complete and pass.
5. The Meld score is how you are evaluated for a transplant (Mine is 26).
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
7. They will not accept a paid care giver source and prefer a family member. They also need to go through a care giver class.
8. The post prescriptions can run thousands each month.
Best Wishes to you!
Dave

Jump to this post

@davebarnes Dave, you surely are in good hands at Mayo. I am curious though, are you anticipating a live donor from an unknown donor or from someone you know? I believe most living donors are family or friends of the person needing a transplant but it sounds as if there may be donors there who just do this out of a tremendous sense of giving, which is great. I can understand why having a common blood type helps in the living donor situation.
I hope this all comes through for you. I know how it is to feel pretty well and then to have things go downhill. I was very fortunate in not feeling that unwell until fairly close to when my transplant came through.
JK

@davidgenebarnes

Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful. My work has me out of Phoenix at the time which is a blessing as it has me next to Mayo. What I have learned in the past year since being diagnosed:
1. Mayo Hospital is the leader on Transplants
2. California has a longer wait for livers. As they only will do low-risk transplants.
3. Mayo is very strict when it comes to following the rules for patients.
4. Mayo has many classes that you have to go through, complete and pass.
5. The Meld score is how you are evaluated for a transplant (Mine is 26).
6. You need one primary care giver (24/7) with you at all times for the first few months after the surgery. Two back up caregivers are also needed.
7. They will not accept a paid care giver source and prefer a family member. They also need to go through a care giver class.
8. The post prescriptions can run thousands each month.
Best Wishes to you!
Dave

Jump to this post

I am not receiving a liver from a living donor (at least not family). My health and energy are greatly reduced. However, I have to maintain my job and daily functions so I can keep my insurance.
Thanks JK.
Dave

Please login or register to post a reply.