Aa
Getting sicker
How can your MELD score go up and down but you're continuously getting sicker and sicker. Also, what does it mean to have your name on transplant
list, while getting sicker and sicker MELD score 17, today but can go down to 15, but getting sicker I don't understand the transplant list.
list, while getting sicker and sicker MELD score 17, today but can go down to 15, but getting sicker I don't understand the transplant list.
Flynn did answer effectively....one point though is if you are a transplant list they want you to be within 4-6 hours of the transplant facility.
MELD (creatinine, bilirubin, and INR) go from 0-40...the higher being the worst but your MELD is not the only qualifier...you have to be of the same blood type as the donor and approximately the same size because there are tubes leading from the donor liver to your body that have to be attached. The transplant surgeon makes that decision.
I have cirrhosis , Stage 4 decomp, ESLD, on transplant list...take Xifanan for HE. My MELD goes from 12 -16....my doctor said that the fluctuation is normal. I just came off of the solavdi / riba treatment for 24 weeks...had one month past treatment test...still showing UND...won't breathe a sigh of relief until the next test 3 months from now. Have been on so many medication trails and only a non-responder. Hopefully I have kicked the HCV.
When you get that call you have to be ready to go....ASAP.
MELD (creatinine, bilirubin, and INR) go from 0-40...the higher being the worst but your MELD is not the only qualifier...you have to be of the same blood type as the donor and approximately the same size because there are tubes leading from the donor liver to your body that have to be attached. The transplant surgeon makes that decision.
I have cirrhosis , Stage 4 decomp, ESLD, on transplant list...take Xifanan for HE. My MELD goes from 12 -16....my doctor said that the fluctuation is normal. I just came off of the solavdi / riba treatment for 24 weeks...had one month past treatment test...still showing UND...won't breathe a sigh of relief until the next test 3 months from now. Have been on so many medication trails and only a non-responder. Hopefully I have kicked the HCV.
When you get that call you have to be ready to go....ASAP.
IHi I haven't been in here in awhile, I was reading about your meld score a feeling sicker,, My husband has had everything associated with esld right down to a bleed out may13 2011, They did the tips procedure on him,, Before that his meld score was 18 and right after it went to 15, He went on the transplant list June 2011, His meld score still remains around 18, The meld has to go up to 28 and higher before transplant, My husband has good and bad days from vomiting to sleeping all day, Then there's days he goes shopping with me , All I can say is take care of yourself the best you can, Yes the answer to your question is a person can feel sicker than there meld score, I'm not sure why but my husband has been sicker on and off with a low meld score, Good luck I wish you the best
Nan, you have described the perfect storm for your husband and others who are quite ill with liver disease
The more sick you are, the sooner you will be considered for transplant. And that also depends on where you live and who your medical team is. That's all good and right, I suppose, because we want to save those who need it most but what a nightmare to live through that
I am hoping to hear good news from you in the next few months when we begin the new treatment
Wishing you all the best
The more sick you are, the sooner you will be considered for transplant. And that also depends on where you live and who your medical team is. That's all good and right, I suppose, because we want to save those who need it most but what a nightmare to live through that
I am hoping to hear good news from you in the next few months when we begin the new treatment
Wishing you all the best
Andy, I agree: XIfaxin is a darned MIRACLE drug; I take it concurrently w/Lactulose, but regard it as far superior to Lactulose. Fortunately I do not have to take either on a regular basis...only as needed.
Welcome to the forum. I know exactly where you are in this process and how you feel. My husband and I were where you are four years ago. It took a year and a half after diagnosis (ESLD) to get a liver transplant.
As we live in NYC where you need a MELD score of 30+ to be transplanted (there are many listed and not enough donors), we relocated to North Carolina where patients are transplanted with MELD scores in the mid-20's. Once we relocated, he was transplanted in 4 months.
The Meld scores go up and down based on the INR, billirubin and creatanine.
As your husband is being treated and monitored closely by the best in the field at a transplant center, these numbers will fluctuate often lowering his MELD score. If he gets an infection and his MELD rises to the 30's, his labs will be repeated in 7 days.
So he has a week to get his transplant. If no liver comes through, and his MELD score improves the following week, he is no longer at the top of the list. I know all this because it happened to my husband. That's why we left our home state for North Carolina. Each infection was a life threatening episode and there was no guarantee that a higher MELD score would translate to a transplant. This is why some patients die waiting for their transplant. Another benefit to having a liver transplant at a lower MELD score (20's) is that he will not be as sick as he will be with a MELD score in the 30's.
Andy and Lynn have given you great information and advice so I don't need to repeat it. I'll be happy to share our experience with you if you wish. You may send me a PM or post here.
Best of luck to your both.
Nan
As we live in NYC where you need a MELD score of 30+ to be transplanted (there are many listed and not enough donors), we relocated to North Carolina where patients are transplanted with MELD scores in the mid-20's. Once we relocated, he was transplanted in 4 months.
The Meld scores go up and down based on the INR, billirubin and creatanine.
As your husband is being treated and monitored closely by the best in the field at a transplant center, these numbers will fluctuate often lowering his MELD score. If he gets an infection and his MELD rises to the 30's, his labs will be repeated in 7 days.
So he has a week to get his transplant. If no liver comes through, and his MELD score improves the following week, he is no longer at the top of the list. I know all this because it happened to my husband. That's why we left our home state for North Carolina. Each infection was a life threatening episode and there was no guarantee that a higher MELD score would translate to a transplant. This is why some patients die waiting for their transplant. Another benefit to having a liver transplant at a lower MELD score (20's) is that he will not be as sick as he will be with a MELD score in the 30's.
Andy and Lynn have given you great information and advice so I don't need to repeat it. I'll be happy to share our experience with you if you wish. You may send me a PM or post here.
Best of luck to your both.
Nan
flyinlynn pretty much went right down the text...on the money. with regard to lacutose, I happen to take a ton of it as I suffer from Hepatic Encephalopathy, and was hospitalized a few times for it. I have found a very good mix to be lactulose and Xifaxan. Your doctor should provide a dosing of lactulose to produce 2-3 regular BM per day. The xifaxan, as opposed to neomycin which has side effects, is excellent and even recommended by the mfg to be taken concurrent with Lactulose. The draw-back of Xifaxan is it's price (60 550mg tablets per month [2 a day] in southern California runs about $1,800.00 a month) and you really have to have your doctor lobby hard with your insurance carrier to get them to pay for it instead of neomycin. It has been my experience that the drug is probably the most effective med of my 11 prescription and 5 over the counters. I consider it a miracle... I wish everyone the best... Andy
Sure sorry if I sounded glib there. But really I thing you may want to ask your doctor to clarify why he thinks it is a bad idea.
I did find some info about multiple listings maybe you could discuss with your doctor his thoughts
http://www.transplantliving.org/before-the-transplant/getting-on-the-list/other-options-to-consider/
Multiple Listing
As addressed in the OPTN/UNOS Policy 3.2.2, patients may be listed at more than one transplant center. Being listed at more than one transplant center does not guarantee that an organ will become available faster than if you are listed at one transplant center. In addition, you probably would not benefit from listing at multiple centers in the same local allocation area. This is because waiting time priority is first calculated among candidates at all hospitals within the local donation area, not for each hospital individually.
It's important to note that some transplant programs may not accept multiple-listed patients. Others may set their own requirements for multiple-listed candidates.
If you choose to multiple list, your primary care physician should contact your centers of choice so that you may be evaluated as a transplant candidate, as you did with your primary evaluation. Read a detailed brochure now >
>>>>> I also found this from the university of Wisconsin<<<<<
http://www.uwhealth.org/transplant/uw-health-transplant-multiple-waitlist-listings/27710
Multiple Listing with the UW Health Transplant Program
The UW Health Transplant Program is one of the world's foremost organ transplant programs. UW Health physicians are recognized experts in their field, providing care to patients in our heart, lung, kidney, liver, pancreas, intestine, islet cell and pediatric transplant programs.
It is important for patients to understand their options regarding multiple listing for transplant, and the benefits of being listed at the UW Health Transplant Program.
What is multiple listing?
Multiple listing involves registering on the waitlist at two or more transplant centers. The Organ Procurement and Transplantation Network (OPTN) and the United Network of Organ Sharing (UNOS) allow for multiple listings. Transplant programs have the option of refusing to list a patient for transplant who is already listed with another center. However, UW Health encourages patients to multiple list in different organ donation service areas to increase their chances of receiving an organ offer.
Why should a patient consider multiple listing?
Multiple listing may decrease a patient's waiting time for a transplant. Many factors affect how long a patient might wait for a transplant, including: organ availability, medical urgency and having a "highly sensitized" immune system. (Highly sensitized patients are patients who have a higher likelihood of rejecting a transplanted organ and will match well with only a limited number of donated organs.)
What are the benefits of multiple listing?
Waiting time is the main determining factor for patients waiting for abdominal organs such as kidney and pancreas. Some studies suggest multiple listing can shorten the waiting time of kidney transplant patients by several months. For kidney patients, getting transplanted before the patient requires dialysis greatly improves the transplant outcome. While the heart, liver and lung organs are allocated based upon medical urgency and expected outcomes, the length of time a recipient is on the waiting list is also a determining factor in situations where two patients have identical rankings.
How does a patient list at multiple centers?
A patient should contact the transplant center(s) at which he/ she would like to be listed. Each center will determine if they will accept the patient to their waiting list. Some centers may not accept multiple-listed patients, and some may have special requirements for multiple-listed candidates. You should ask the transplant team how they handle multiple-listing requests.
The patient will have to complete an evaluation at each transplant center and agree to meet any conditions set by that center. It is a good idea for the patient to check with the insurance provider to see if they will reimburse the cost of additional evaluations. The patient should also consider other costs, such as travel and lodging. Patients may be listed at as many centers as they wish and the transplant centers do not have to be within the same geographic region where the patient lives. If a patient lists at multiple centers, the waiting time will start from the date each center adds the patient to their waitlist.
The longest amount of time the patient waited at any center is called primary waiting time. It may be possible to transfer primary waiting time to another center, but patients are not allowed to add or split total waiting time among multiple centers. Any request to switch waiting time must be approved by the transplant center(s) involved. Patients probably would not benefit from listing at multiple transplant centers within the same organ donor service or local allocation area. This is because waiting-time priority is first calculated among candidates at all hospitals within the local allocation area, not for each individual hospital. Patients who wish to be listed at more than one center typically list within two separate allocation areas.
What is a waiting-time transfer?
A waiting time transfer involves ending a patient's listing at one transplant center and transferring it to another center. Primary waiting time can be transferred if the patient coordinates this decision with both transplant centers.
What are the benefits of listing with the UW Health Transplant program?
Patients listed with the UW Health Transplant Program tend to experience shorter than average wait times due to the exceptional efforts and high performance of UW Organ and Tissue Donation, which serves the UW Health Transplant Program.
I did find some info about multiple listings maybe you could discuss with your doctor his thoughts
http://www.transplantliving.org/before-the-transplant/getting-on-the-list/other-options-to-consider/
Multiple Listing
As addressed in the OPTN/UNOS Policy 3.2.2, patients may be listed at more than one transplant center. Being listed at more than one transplant center does not guarantee that an organ will become available faster than if you are listed at one transplant center. In addition, you probably would not benefit from listing at multiple centers in the same local allocation area. This is because waiting time priority is first calculated among candidates at all hospitals within the local donation area, not for each hospital individually.
It's important to note that some transplant programs may not accept multiple-listed patients. Others may set their own requirements for multiple-listed candidates.
If you choose to multiple list, your primary care physician should contact your centers of choice so that you may be evaluated as a transplant candidate, as you did with your primary evaluation. Read a detailed brochure now >
>>>>> I also found this from the university of Wisconsin<<<<<
http://www.uwhealth.org/transplant/uw-health-transplant-multiple-waitlist-listings/27710
Multiple Listing with the UW Health Transplant Program
The UW Health Transplant Program is one of the world's foremost organ transplant programs. UW Health physicians are recognized experts in their field, providing care to patients in our heart, lung, kidney, liver, pancreas, intestine, islet cell and pediatric transplant programs.
It is important for patients to understand their options regarding multiple listing for transplant, and the benefits of being listed at the UW Health Transplant Program.
What is multiple listing?
Multiple listing involves registering on the waitlist at two or more transplant centers. The Organ Procurement and Transplantation Network (OPTN) and the United Network of Organ Sharing (UNOS) allow for multiple listings. Transplant programs have the option of refusing to list a patient for transplant who is already listed with another center. However, UW Health encourages patients to multiple list in different organ donation service areas to increase their chances of receiving an organ offer.
Why should a patient consider multiple listing?
Multiple listing may decrease a patient's waiting time for a transplant. Many factors affect how long a patient might wait for a transplant, including: organ availability, medical urgency and having a "highly sensitized" immune system. (Highly sensitized patients are patients who have a higher likelihood of rejecting a transplanted organ and will match well with only a limited number of donated organs.)
What are the benefits of multiple listing?
Waiting time is the main determining factor for patients waiting for abdominal organs such as kidney and pancreas. Some studies suggest multiple listing can shorten the waiting time of kidney transplant patients by several months. For kidney patients, getting transplanted before the patient requires dialysis greatly improves the transplant outcome. While the heart, liver and lung organs are allocated based upon medical urgency and expected outcomes, the length of time a recipient is on the waiting list is also a determining factor in situations where two patients have identical rankings.
How does a patient list at multiple centers?
A patient should contact the transplant center(s) at which he/ she would like to be listed. Each center will determine if they will accept the patient to their waiting list. Some centers may not accept multiple-listed patients, and some may have special requirements for multiple-listed candidates. You should ask the transplant team how they handle multiple-listing requests.
The patient will have to complete an evaluation at each transplant center and agree to meet any conditions set by that center. It is a good idea for the patient to check with the insurance provider to see if they will reimburse the cost of additional evaluations. The patient should also consider other costs, such as travel and lodging. Patients may be listed at as many centers as they wish and the transplant centers do not have to be within the same geographic region where the patient lives. If a patient lists at multiple centers, the waiting time will start from the date each center adds the patient to their waitlist.
The longest amount of time the patient waited at any center is called primary waiting time. It may be possible to transfer primary waiting time to another center, but patients are not allowed to add or split total waiting time among multiple centers. Any request to switch waiting time must be approved by the transplant center(s) involved. Patients probably would not benefit from listing at multiple transplant centers within the same organ donor service or local allocation area. This is because waiting-time priority is first calculated among candidates at all hospitals within the local allocation area, not for each individual hospital. Patients who wish to be listed at more than one center typically list within two separate allocation areas.
What is a waiting-time transfer?
A waiting time transfer involves ending a patient's listing at one transplant center and transferring it to another center. Primary waiting time can be transferred if the patient coordinates this decision with both transplant centers.
What are the benefits of listing with the UW Health Transplant program?
Patients listed with the UW Health Transplant Program tend to experience shorter than average wait times due to the exceptional efforts and high performance of UW Organ and Tissue Donation, which serves the UW Health Transplant Program.
I didn't want anyone to be a mind reader I was asking if anyone knows of any reasons why a doctor would tell you not to register at any other centers, if anyone had experience with my question.
I have no idea that is how both Steve Jobs and I think Larry Hagman were able to get their livers quickly. HectorSF were in our forum considered it and I think Nan's husband may have as well. You would have to have the ability to get to the other center within a few hours and be able to stay in the area for a time post transplant.
Ask you doctor why he said that I sure can't read his mind and I have no idea.
Ask you doctor why he said that I sure can't read his mind and I have no idea.
Here is a link about liver transplant wait times when you have a chance to take a look hope everything is going ok with your husband
http://www.srtr.org/default.aspx
Good luck
Lynn
http://www.srtr.org/default.aspx
Good luck
Lynn
Hi
MELD score required for transplant varies from center to center. Some centers transplant as high as in the 30's you may want to ask what number is common at your center. Also if you have the means to get to another center you may consider getting listed in an additional center especially in the other center transplants at lower scores.
I have heard the idea with Lactulose is to take as much as required to have 2-3 loose stools a day not just per the dosing if more is required. I am sure his doctor is the best source of medical information about how he should take Lactulose.
Hopefully the ER is associated with his liver transplant hospital some ER's are better than others when dealing with ESLD and HE episodes.
From web MD
How to use lactulose
If you are taking this medication by mouth for liver disease, take it usually 3-4 times a day or as directed by your doctor. To improve the taste, you may mix it into fruit juice, water, milk, or a soft dessert. The goal is to have 2-3 soft stools each day. Dosage is based on your medical condition and response to therapy (i.e., the number of soft stools each day).
If you are taking this medication by mouth for constipation, take it usually once daily or as directed by your doctor.
This medication can also be given rectally as an enema for liver disease. Mix the recommended amount of lactulose with 700 milliliters (24 ounces) of water or normal saline. Give the solution into the rectum and keep the liquid inside for 30-60 minutes as directed by your doctor. If you keep the enema inside for less than 30 minutes, repeat the dose unless directed otherwise.
Use this medication regularly in order to get the most benefit from it. Remember to use it at the same time each day.
When this drug is given rectally for liver disease, an improvement in your mental status may occur in as little as 2 hours, but if you are taking this medication by mouth, it may take up to 24 to 48 hours.
MELD score required for transplant varies from center to center. Some centers transplant as high as in the 30's you may want to ask what number is common at your center. Also if you have the means to get to another center you may consider getting listed in an additional center especially in the other center transplants at lower scores.
I have heard the idea with Lactulose is to take as much as required to have 2-3 loose stools a day not just per the dosing if more is required. I am sure his doctor is the best source of medical information about how he should take Lactulose.
Hopefully the ER is associated with his liver transplant hospital some ER's are better than others when dealing with ESLD and HE episodes.
From web MD
How to use lactulose
If you are taking this medication by mouth for liver disease, take it usually 3-4 times a day or as directed by your doctor. To improve the taste, you may mix it into fruit juice, water, milk, or a soft dessert. The goal is to have 2-3 soft stools each day. Dosage is based on your medical condition and response to therapy (i.e., the number of soft stools each day).
If you are taking this medication by mouth for constipation, take it usually once daily or as directed by your doctor.
This medication can also be given rectally as an enema for liver disease. Mix the recommended amount of lactulose with 700 milliliters (24 ounces) of water or normal saline. Give the solution into the rectum and keep the liquid inside for 30-60 minutes as directed by your doctor. If you keep the enema inside for less than 30 minutes, repeat the dose unless directed otherwise.
Use this medication regularly in order to get the most benefit from it. Remember to use it at the same time each day.
When this drug is given rectally for liver disease, an improvement in your mental status may occur in as little as 2 hours, but if you are taking this medication by mouth, it may take up to 24 to 48 hours.
We (my husband) on the transplant list, keep getting HE, eating all necessary foods, taking lactulose every 2-4 hours as directed, but it will stop working. Off to the hospital.
We (my husband) on the transplant list, keep getting HE, eating all necessary foods, taking lactulose every 2-4 hours as directed, but it will stop working. Off to the hospital.
Sorry to hear you are so sick
Here is something I found on webmd and an excerpt from the link
http://www.m.webmd.com/a-to-z-guides/digestive-diseases-liver-transplantation
Liver Transplantation
How Does the Liver Transplant Waiting List Work?
If you become an active liver transplant candidate, your name will be placed on a waiting list. Patients are listed according to blood type, body size, and medical condition (how ill they are). Each patient is given a priority score based on three simple blood tests (creatinine, bilirubin, and INR). The score is known as the MELD (model of end-stage liver disease) score in adults and PELD (pediatric end-stage liver disease) in children.
Patients with the highest scores are transplanted first. As they become more ill, their scores rise and their priority for transplant increases, allowing for the sickest patients to be transplanted first. A small group of patients who are critically ill from acute liver disease have the highest priority on the waiting list.
It's impossible to predict how long a patient will wait for a liver to become available. Your transplant coordinator is always available to discuss where you are on the waiting list.
Hope that helps
Lynn
Here is something I found on webmd and an excerpt from the link
http://www.m.webmd.com/a-to-z-guides/digestive-diseases-liver-transplantation
Liver Transplantation
How Does the Liver Transplant Waiting List Work?
If you become an active liver transplant candidate, your name will be placed on a waiting list. Patients are listed according to blood type, body size, and medical condition (how ill they are). Each patient is given a priority score based on three simple blood tests (creatinine, bilirubin, and INR). The score is known as the MELD (model of end-stage liver disease) score in adults and PELD (pediatric end-stage liver disease) in children.
Patients with the highest scores are transplanted first. As they become more ill, their scores rise and their priority for transplant increases, allowing for the sickest patients to be transplanted first. A small group of patients who are critically ill from acute liver disease have the highest priority on the waiting list.
It's impossible to predict how long a patient will wait for a liver to become available. Your transplant coordinator is always available to discuss where you are on the waiting list.
Hope that helps
Lynn
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