Average wait times by meld score & center

[flyinlynn]

The brother of a coworker has MELD 33 I know I have seen the info somewhere but can't seem to locate it. Is there a list by transplant center of wait times by meld?

We are in Seattle area his brother is at Swedish

Thanks
Lynn

[nan535]

I know what a stressful time this is for you and your sister. From your description, your sister has advanced liver disease as Lynn posted above.
The evaluation for a liver transplant is extensive. Here is a link to an overview of the process:  
http://www.emoryhealthcare.org/transplant-liver/become-patient/evaluation-process.html

Here is a link to the liver transplant report filed by the Medical University of South Carolina in Charleston for the period January 2012-December2013.
It will give a lot of information about their transplant program.
http://www.srtr.org/csr/current/Centers/201406/pdf/SCMUTX1LI201406PNEW.pdf

I hope your sister gets the best care possible and is soon on the road to better health.

Nan

[flyinlynn]

Hi Pam
Welcome so sorry to hear about your sister.

The best way to get more answers to your questions would be to select the orange post a question link at the top right of the page.

That being said I guess for me the first question would be if they know the cause of her cirrhosis. Many if us here have hepatitis c. some did not know and have no know risk factors. Also taking excessive pain meds especially acetaminophen (Tylenol) can lead to liver damage.

http://www.tylenol.com/safety-dosing/overview/get-relief

The fluid they are draining is called ascities whi he is a symptom of advanced liver disease.

That is all I have for the moment please post a new question and I am sure other knowledgable folks will reach out to you tho help

Good luck to you and your sister
Lynn

[Pam4Sis]

I'm new to this, my sister is in NC, I'm in FL.  Trying to keep up with her status as best we can, hard to understand all without being there.   She was in Charleston to get the work up to be put on the liver transplant list - her meld score there was a 29.    They have been taking 8-10 liter off about every 2-3 weeks - I had no idea about  this procedure until I went up to see her and she let the MD discuss her condition with us.   She isn't on the list yet but in the process so I"m not sure if they are still evaluating her health - her meld score or what.   Trying to read as much as I can about this as she is younger and this hasn't been in our family before.   I'm thinking she may have a liver problem due to always complaining about pain over the years, has always been taking some type of pain relief - hard for me to judge as I am blessed so far with pretty good overall health.   I guess my question is -- what do I need to ask.  Thanks all

[Livelife777]

Lynn.  Also I'm sorry to hear of your friend going into Hospice.. Will say tho they are a great support team, and provide comfort and dignity thru tuff times.  May he find peace in the days to come.
...Kim

[HectorSF]

Lynn, I am sorry to hear this very sad news.

I only hope that many others in the future will not have to go through such horrors. The new hepatitis C treatments are helping to prevent people from such a hellish fate.

Every life is precious. Way too many people have had their lives cut short by these cruel diseases.

I wish him, your coworker and all of his loved ones peace.
Hector

[flyinlynn]

Thanks gals

It sounds like he is getting good care at home with his family and a hospice nurse.

May he slip softly into whatever comes after this life and find eternal peace.

[Advocate1955]

So sorry to hear this news Lynn.  Sending up prayers.
Advocate1955

[nan535]

Sad news.  Thanks for the update.
May he and his family find peace.

Nan

[flyinlynn]

Sadly my friend tells me his brother is to ill to stay on the list and has been sent home for hospice care.

He has lost way too much weight and I just heard he has liver cancer as well . I didn't want to pry for details but I think it may have metastisized.

just to update you all

best wishes fellow travelers
Lynn

[Advocate1955]

Hi Lynn,
Of course I don't know the specifics of your co-worker's brother's situation, and I don't know the specifics of Swedish; however, based on my experience at UW Medical Center's transplant center (when I was accompanying another forum member, creewoman, to her appointments there - creewoman passed away of liver failure last summer as she was unable to complete the assessment process to get listed prior to becoming too ill to survive - I miss her dearly), at that time UW Medical Center was transplanting people at MELD = 16, and the average wait time was a month or so after completing the assessments and being listed.  Per the transplant hepatologist there was not a shortage of livers in Washington.  That was in January - June of 2013.  I don't know at this present time.
Advocate1955

[nan535]

Thanks Lynn.

He only has 19 days left on the meds.  We both can't wait for him to end treatment. Unfortunately, its been a very tough road for him.  He really needs a break right now.

We are praying that he will reach SVR but if not that the damage to his liver will be minimal between now and the next treatment.

Please keep positive thoughts and prayers going for him.
Thanks
Nan

[flyinlynn]

Thanks Nan

That is what I remembered seeing before.

I hope you and your husband are doing well and hanging in there

Lynn

[flyinlynn]

Thanks

I dont know what is going on right now. My coworker left early yestedray and won't be back for 10 days I heard. I hope it was the call....

[HectorSF]

Unfortunately his symptoms are common with End-Stage Liver Disease. It can be truly hellish in people with MELD scores in the 30s. As long as he is healthy enough to remain on the list he should get a transplant soon I am sure. If the person becomes too ill for transplant surgery they will be put on temporary hold until they recover their health. Transplant center are very experienced with this. Sometimes the patient will be put in ICU for a period to stabilize them before the surgery.

I am hopeful this nightmare will soon be over for him and he will be on his way to a second chance at life as happened with me.

Be well.
Let's hope for a transplant very soon.
Hector..

[flyinlynn]

Thanks Hector

I will let him know. His brother has had the full work up and is on the list but is in very poor physical condition from what my friend describes.

Sounds like muscle wasting and very weak also vomiting and he is in the hospital getting IV fluids. Also sounds like he has some HE confusion as well as he has a varicial bleed in the recent past.

Thanks
Lynn

[HectorSF]

When any single patient will get a transplant can not be predicted. It depends on many factors not just what MELD scores a transplant center typically transplants at.

The wait list at any transplant center is dynamic and constantly changing depending on who else is on the waiting lists in the region, what donor livers are available at a particular time that are compatible with the recipient (blood type and  the size of the organ), etc. It would also depend if the person has signed up to be eligible to be able to choose from so- called "high risk" livers. Such as a liver infected with hepatitis C, which is reality is not a higher risk for a person who has hepatitis C going into their transplant. A person may also be a backup patient for a organ that the recipient turns down or can't take for some reason and that is how they get their transplant. It can happen in many ways. There are too many dynamic factors to say exactly when a person will get a transplant from a deceased donor. Only a Living Donor Liver Transplant is a scheduled surgery.

A MELD score of 33 for a person with O blood type would probably be near the top of the list in most regions in the country. In the San Francisco Bay Area, which has the largest waiting list in the country they may still need a higher MELD score than 33 most of the time but again would depend on many factors which are unpredictable. They may also have to wait at other locations where the waiting lists are longest such as in New York City and in the LA area. In other parts of the country such as Seattle where there is less demand or more organs available, they should be able to get a transplant with a MELD score of 33 soon typically. If they have a rarer blood type they should also be able to get a transplant sooner as most people waiting for livers are type Os which need a type O liver to be compatible.

When a person starts to get calls to be a backup then they know they are close to the top of the waiting list.

Hector