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10/26/2010 08:43 PM

Feeling Kinda Sad

fredsmith3
fredsmith3  
Posts: 37
Member

I went with Fred today to the Transplant clinic, which we go to now about every two weeks. We have been going there for the past 4 years.

Today the doctor told us Fred may have to start dialysis soon. Because the ascites and edema is getting a lot worse, and she doesn't want to increase the diuretics he may have to start dialysis.

She basically said without a live donor, he will get worse, and worse, and will die waiting for a liver transplant.

We knew this already, but with her saying it, it really hit home. I am sad today.

Does anybody have anything to say about dialysis? I don't know much about it.

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10/26/2010 09:02 PM
bjlvls
bjlvls  
Posts: 1013
Senior Member

I'm so sorry that Fred is in this situation. You didn't mention which kind of dialysis he's going to undergo. Liver or kidney? When would he begin the treatments? Either kidney or liver dialysis should bump him up on the list. Is that what you've been told at your center? I can only imagine how sad you must be. I'll be hoping and praying for good news for you both very soon.

Hugs,

Bobbi


10/26/2010 09:19 PM
fredsmith3
fredsmith3  
Posts: 37
Member

Hi Bobbi

It's liver dialysis. We are told his kidneys are still working fairly good. The Dr didn't say anything about moving him up on the list.

Since the three tests for MELD score are not affected.

# Bilirubin,

# INR

# Creatinine,

Don't yet know when dialysis would start. We are just seeing how it goes for now. We go back in two weeks.

His meld score is only 18 right now. The nurse at the transplant center told me they are taking donor organs for Fred's blood type right now for people with Meld scores in the 30's.

Thanks for your prayers.


10/26/2010 10:01 PM
mikealpha1
mikealpha1  
Posts: 2286
Group Leader

Liver dialysis, that's a new one to me, how does that work?

10/26/2010 10:09 PM
fredsmith3
fredsmith3  
Posts: 37
Member

Here is something I found on liver dialysis:

"Liver dialysis is a process which removes toxins from the liver in order to sustain patients until a liver transplant can be done. Unlike kidney dialysis, which can keep patients alive for months or years, liver dialysis is considered a very temporary solution for chronic liver failure. The act of liver filtration can be effective at removing toxins from the liver for several weeks to a few months, taking some of the strain off the ailing organ.

Although liver dialysis treatments are still being developed and improved upon, they has been approved for use in patients with chronic hepatitis C, as well as other severe liver disease. Patients who have to undergo this procedure have generally exhausted all other options other than a liver transplant. The outlook for dialysis patients is fair if a donor is found quickly enough. Unfortunately, it is often difficult to find a donor liver."

I was hoping someone on this site knew something about it.


10/27/2010 08:38 AM
bjlvls
bjlvls  
Posts: 1013
Senior Member

Fredsmith3, I've been looking for articles more recent regarding liver dialysis and have found a peer-reviewed medical journal that reviewed the procedure and published in April of this year. Unfortunately, the article doesn't offer much more than what you already know. It seems that the procedure effectively removes toxins, but is unable to replicate the liver's hormone production, thus affecting the bodies abilities in the areas of blood clotting and glucose regulation, among others. For those interested, here's the link:

http://www.rxpgnews.com/liver/ Extracorporeal_liver_support_therapy_shows_promise_for_sever ely_ill_patients_393126.shtml

This serves as a reminder to us all the importance of spreading the word about organ donation. dmanflan, (Dennis) has some links to organ donation information and here is a link provided to me by my transplant center:

http://www.donatelife.net/


10/27/2010 09:01 AM
dmanflan
dmanflan  
Posts: 1734
Group Leader
I'm an Advocate

Susie,

I'm so sorry to hear about Fred's condition. I really hope that a donor is found soon! Please know that my thoughts are with you and Fred during these terrible days!

You also need to take care of yourself! You are a vital part of Fred's care team, without YOU Fred would have to manage everything himself. You already realize that his condition would prevent him from completing the things that you do for him. Talk to his medical team about your feelings and see what they can do for you. Believe me, they care about you too!

As for the liver dialysis, I have two things to bring to the table:

  1. On the Mayo Clinic's MELD Model Calculator that I have always used, there is a check box (button actually if you want to get technicalSideways ) to indicate if the patient has "had dialysis at least twice in the past week". It doesn't delineate what type of dialysis. From what you have said, it sounds to me like Fred may reach this threshold at some point. I believe this is what Bobbi was referring to.
  2. Chris Klug, the Olympic snowboarding medalist, is a liver transplant recipient whose native liver failed due to primary sclerosing cholangitis (PSC). In his biography (To the Edge and Back, an excellent read BTW Cool ) he describes having a procedure performed to drain his liver. I never really associated the procedure with dialysis, but that is really what it is. In his case the liver was retaining fluid (bile? I don't remember specifically) and causing his other symptoms to flair while bringing on a life threatening situation in itself. At first the procedure was administered very infrequently with months in between. As his liver continued to fail, the frequency of how often the procedure was done increased. Chris has continued to complete in the Olympics, which gives you a measure of how well his new liver is functioning.

I hope this helps! Hang in there!

Dennis


10/27/2010 05:53 PM
fredsmith3
fredsmith3  
Posts: 37
Member

Dennis

Thanks for the info on the MELD calculator. From what I can tell, if he has dialysis twice in a week, and the little box is checked, it bumps his meld from 18 to 28. Maybe there is hope for him to get a donor liver.

All of you are so knowledgeable, and I appreciate all of the information you give.

Thanks again!

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