1. < Transplants

meld score is a 12 ?

Posted by tim @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

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 25, 2017
In reply to @davidgenebarnes "Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful...." + (show)
@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

REPLY
JK | @contentandwell | Aug 26, 2017
In reply to @davidgenebarnes "Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful...." + (show)
@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

REPLY
davidgenebarnes | @davidgenebarnes | Aug 28, 2017
In reply to @davidgenebarnes "Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful...." + (show)
@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.

REPLY
1 reply
JK | @contentandwell | Aug 28, 2017
In reply to @davidgenebarnes "Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful...." + (show)
@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

REPLY
davidgenebarnes | @davidgenebarnes | Aug 28, 2017
In reply to @davidgenebarnes "Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful...." + (show)
@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

REPLY
JK | @contentandwell | Aug 28, 2017
In reply to @davidgenebarnes "Hello Tim, I too am from Northern California (San Jose) and am a pre-liver transplant hopeful...." + (show)
@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 Sorry, Dave, I guess I misread your post. I was fortunate also in being blood type B, I am sure that helped in my getting a transplant when I did, sooner than anticipated. I had spoken to Mayo in Rochester and they felt that I could definitely get one at MELD 28 with my blood type so I was preparing to dual list there when a liver came through for me. "Hank" (a neutral gender name for my live) and I get along great so far -- so far, so good.
JK

REPLY
nusscass | @nusscass | Apr 11 12:39pm
In reply to @davidgenebarnes "Good morning JK. I am in Phoenix going through Mayo. I was told my MELD score..." + (show)
@davidgenebarnes

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.

Jump to this post

Out of curiosity how long has your MELD been 12?
I'm stuck on 8 for 4 years. It's being studied, persistently low MELD
Problem is the disease is still marching on.
Im not at Mayo bc of cost above my regular insurance

I've sought help finding anywhere that plans for tjis
My doc at UAB in Birmingham told me when I lost weight that maybe it Shocked my system into stabilizing
That was the last time I saw him bc I may only be a 34 yr veteran critial care nurse ,CRNP. He said I wont need a transplant for 10-15 yrs! I am Decompensated 4 yrs! Im having trouble finding center that fights for the low melds
If I stayed where I was, Id never even make the list
Im so sick Im disabled
Does anyone have experience and know of other hospitals that are trying to get us listed appropriately. My next step is Medically Assisted death. Im not going to have a long, hopeless death bc of my stuck MELD. Please, if anyone knows other hospitals, please! Im only 56
Thanks and good luck to all.
Cassie

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Apr 11 2:31pm
In reply to @nusscass "Out of curiosity how long has your MELD been 12? I'm stuck on 8 for 4..." + (show)
@nusscass

Out of curiosity how long has your MELD been 12?
I'm stuck on 8 for 4 years. It's being studied, persistently low MELD
Problem is the disease is still marching on.
Im not at Mayo bc of cost above my regular insurance

I've sought help finding anywhere that plans for tjis
My doc at UAB in Birmingham told me when I lost weight that maybe it Shocked my system into stabilizing
That was the last time I saw him bc I may only be a 34 yr veteran critial care nurse ,CRNP. He said I wont need a transplant for 10-15 yrs! I am Decompensated 4 yrs! Im having trouble finding center that fights for the low melds
If I stayed where I was, Id never even make the list
Im so sick Im disabled
Does anyone have experience and know of other hospitals that are trying to get us listed appropriately. My next step is Medically Assisted death. Im not going to have a long, hopeless death bc of my stuck MELD. Please, if anyone knows other hospitals, please! Im only 56
Thanks and good luck to all.
Cassie

Jump to this post

@nusscass, I want to reply to your curiousity about MELD Score being stable at 8. As for me, I was diagnosed with a non-curable progressive liver disease, Primary Sclerosing Cholangitis (PSC) nearly 10 years before my MELD reached acceptance to the Liver Transplant Clinic at regional University Medical Center. During those years, my symptoms gradually increased while I was monitored by my local gastroenterologist (GI). My MELD score increased rapidly over the following months along with progressing symptoms. My age was similar tou yours, between 50-60.
When I read your message, I could not see whether you are under the care of a GI or a liver specialist. I can even feel your frustration and your hopelessness.
@nusscass, Out of my curiosity to you- Are you seeing your doctor regularly? Has he/she offered any medical interventions for your 'disabling' symptoms - or whether they are related to your liver?
I would encourage you to get 2nd opinion or even transfer your mdical care elsewhere. Have you considered a 2nd opinion?

REPLY
1 reply
nusscass | @nusscass | Apr 11 3:30pm
In reply to @rosemarya "@nusscass, I want to reply to your curiousity about MELD Score being stable at 8. As..." + (show)
@rosemarya

@nusscass, I want to reply to your curiousity about MELD Score being stable at 8. As for me, I was diagnosed with a non-curable progressive liver disease, Primary Sclerosing Cholangitis (PSC) nearly 10 years before my MELD reached acceptance to the Liver Transplant Clinic at regional University Medical Center. During those years, my symptoms gradually increased while I was monitored by my local gastroenterologist (GI). My MELD score increased rapidly over the following months along with progressing symptoms. My age was similar tou yours, between 50-60.
When I read your message, I could not see whether you are under the care of a GI or a liver specialist. I can even feel your frustration and your hopelessness.
@nusscass, Out of my curiosity to you- Are you seeing your doctor regularly? Has he/she offered any medical interventions for your 'disabling' symptoms - or whether they are related to your liver?
I would encourage you to get 2nd opinion or even transfer your mdical care elsewhere. Have you considered a 2nd opinion?

Jump to this post

I've been under the pre-transplant Hepatoogist, who happens to be the director of their liver transplant program
I have for 4 yrs
I've been under his care
Full shabang every 12 weeks. He admitted he was guessing about why it stopped at 8
They have no contingencies for the Low MELD thT many hospitals are studying like crazy
.y SYMPTOMS labs scans showed every aspect of Decompensation.
As far as 2 d opinions, I've had 5
All agree the disease is marching towards death but number is stuck
Most die before the have a
MELD that isnt showing how sick you really are. Everyone in my family are docs or advanced practices nurse. My father was a big wig for many years here, so they try to cross every T. ut they seem umaware of this phenomenon
Trust me. I advocated just as hard for myself as I have for all patients in 34 yrs. My HE is so profound i can't speak intelligently, typos...Im sorry I sound ignorant. I was ACTUALLY highly intelligent
Seems a long time ago
Lol

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 12 1:55pm
In reply to @nusscass "I've been under the pre-transplant Hepatoogist, who happens to be the director of their liver transplant..." + (show)
@nusscass

I've been under the pre-transplant Hepatoogist, who happens to be the director of their liver transplant program
I have for 4 yrs
I've been under his care
Full shabang every 12 weeks. He admitted he was guessing about why it stopped at 8
They have no contingencies for the Low MELD thT many hospitals are studying like crazy
.y SYMPTOMS labs scans showed every aspect of Decompensation.
As far as 2 d opinions, I've had 5
All agree the disease is marching towards death but number is stuck
Most die before the have a
MELD that isnt showing how sick you really are. Everyone in my family are docs or advanced practices nurse. My father was a big wig for many years here, so they try to cross every T. ut they seem umaware of this phenomenon
Trust me. I advocated just as hard for myself as I have for all patients in 34 yrs. My HE is so profound i can't speak intelligently, typos...Im sorry I sound ignorant. I was ACTUALLY highly intelligent
Seems a long time ago
Lol

Jump to this post

Hi @nusscass, it certainly sounds like you are between a rock and a hard place as they say. I can't imagine not being able to get listed. I understand that you've tried to get listed at multiple transplant centers, been advocating on your own behalf and had support from family members who are also clinicians.

Is a living donor transplant an option for you? I found this blog that talks about low MELD scores:
- Living Donor Liver Transplant: Is it Appropriate for Patients in Critical Need? https://connect.mayoclinic.org/blog/transplant/newsfeed-post/living-donor-liver-transplant-is-it-appropriate-for-patients-in-critical-need/

EXCERPT
"While the MELD score is used to identify patients who are sick and need a transplant sooner, they sometimes don’t accurately reflect the patient’s need for a liver transplant. Examples include patients needing frequent tap or removal of ascites fluid or patients with frequent hospital admissions for confusion. These complications often do not raise the MELD score but still depict a greater need for transplant. ..."

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