Father waiting on transplant

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sburrell
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Date Joined Nov 2008
Total Posts : 9
   Posted 11/27/2008 9:50 AM (GMT -7)   
I am looking for some help. My father has Hepatitis C and has been waiting for a liver for a while (years). His MELD score has been up and down, with a high of 27 at one point. In the past 6 months he has had new developments; for instance, an allergic reaction to the antibiotics given to combat the infections he keeps getting. Most recently, he is loosing blood - about a unit a day - though the source of the bleed is unknown and his hemoglobin is 7.9. Is this a typical progression? I am so frustrated with the MELD score serving as the primary means of qualification for a transplant, as it only takes into consideration 3 lab tests, seemingly without regard to any unique manifestations and progression of the disease.. Is there any indication that the MELD score does not account for other conditions caused by end stage liver failure .... conditions that could lead to death when a liver would drastically help?

Thanks for your help,
Seth

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 11/27/2008 11:45 AM (GMT -7)   

Hi, Seth, and welcome to the forum.  I'm so sorry that your father is battling this disease.  I know how concerned you must be about him.

The only thing I know is that the Mayo Clinic DOES take other factors into consideration when evaluating and listing for a liver.  There are conditions that will override a MELD score, if they feel that the patient in question is going to die within a week if he doesn't get a liver.  I'm not sure if other transplant centers have the same exception, or if they go strictly by the MELD score, which (as you know) can go up and down while the patient's symptoms indicate that he is sicker than the MELD score shows.  It is very frustrating, I know, as I've seen many spouses and loved ones here battle with the same things you are.

Since today is a holiday, we may not get many posts.  But check back over the weekend, and I'm sure you will get some input from others.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


sburrell
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Date Joined Nov 2008
Total Posts : 9
   Posted 11/28/2008 11:11 AM (GMT -7)   
Thank yo so much for this information. I will check back later.

JustLookin
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   Posted 11/28/2008 3:50 PM (GMT -7)   
My brother's MELD score was only 15 when he when he was admitted to the Emergency Room with breathing problems stemming from a build up of fluids around his stomach area. He was admitted to ICU the same day, put on a breathing tube the next day, and has been in ICU ever since. I would say that the MELD score is probably a poor indicator of a person's overall condition.

sburrell
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Date Joined Nov 2008
Total Posts : 9
   Posted 11/29/2008 11:34 AM (GMT -7)   
My father has had the fluid drawn off almost weekly now for 6 months. However his breathing problems did not start until later on relative to to the whole 10 years he has been dealing with this. It is apparent that this disease manifests differently in individual cases.

Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 11/30/2008 7:54 AM (GMT -7)   
Seth, I wanted to take the time to welcome you to the forum. I am so sorry that your father is dealing with this disease. You are right. This disease is different in every individual. It can be a very frustrating disease. I agree with the others regarding the MELD score. I really don't think it is a true indicator of how sick a person really is.
Butterflythree
 
There is always hope!


sburrell
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Date Joined Nov 2008
Total Posts : 9
   Posted 12/1/2008 3:19 PM (GMT -7)   
If so many people feel that the MELD score only represents a small number of people that progress in the disease state as expected, then why don't they change it? I imagine they have thought of many reasons why the current system is in place but I was just not sure why they can't evaluate individual cases. UNOS could send a member to evaluate or even compare what the transplant teams advise. I am just worried about my father becoming a a bad candidate after years of being extremely healthy overall except his liver.
Thanks

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 12/1/2008 9:07 PM (GMT -7)   

Seth, I suppose they think it's the most equitable way to assure that the sickest patients get listed and get livers.  Perhaps one day they will rethink this particular method, but for now it's all we have.  As I mentioned previously, if your dad gets really, really ill--death being imminent--then he could possibly be moved to the top of the list.  The very fact that he is listed is a good thing.  Also, the fact that he is generally healthy except for the liver sequellae, is also in his favor as far as being accepted for transplant and surviving it.

Have they found the source of the bleed yet?


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


sburrell
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Date Joined Nov 2008
Total Posts : 9
   Posted 12/2/2008 10:42 AM (GMT -7)   
Actually my father had been at the top of the list on 3 separate occasions. The bleed...well they scoped the colon and stomach and found only some enlarged tortuous blood vessels in the stomach. They did the stomach first, then the colon. They ruled out a bleed form the stomach initially pending something found in colon. This is all very frustrating considering he had a fluid drained off his abdomen once by a young doctor in training that hurt my father and then the bleed happened afterward. Then it took them a while to test the fluid for blood after we asked them to. But anyway, they gave him blood over the holiday and he wanted a steak when he was finally out so he was in excellent spirits. By the way how long have some people waited for a liver? We have been at this for 10 years...he has been really bad for the past 5 years with score fluctuating from 18 to 27. He pretty much stays at 21 to 22.
Thanks

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 12/2/2008 11:33 AM (GMT -7)   

Did you get your dad that steak?   smilewinkgrin    Glad the transfusion helped him.

Do you mean how long have people been listed w/o getting a liver?  That's one I'll have to leave up to those who have been there, or are currently going through that.  The fact that your dad is generally above 20 is good.  What transplant center is he using?  I do know that Mayo has the shortest wait time in the country for a liver--about 2 1/2 months.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


sburrell
New Member


Date Joined Nov 2008
Total Posts : 9
   Posted 12/2/2008 12:28 PM (GMT -7)   
Yeah, he got his steak. :-)
Yes my question was regarding the length of time some have to wait. He is in the St. Louis university system for the transplant.
Thanks,
Seth

mer
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Date Joined Aug 2008
Total Posts : 613
   Posted 12/2/2008 4:03 PM (GMT -7)   
Seth-

Welcome to the forum! I am so sorry you are having to watch your dad go through this. It's so rough! My husband is on the transplant list ( his MELD droped to an 8 this last time) , and here is what I can tell you from the perspective of the area we are in. I may be way off base on some of this information, so please don't take it as a "set in stone" rules to go by. The current MELD system we have is to ensure that the most critical patients get organs first. This was changed some years ago. When we went for our tranplant evaluation last year, we were told that in the region we are in, patients are typically transplanted when the MELD is around 20 or so and the average wait time is about 11-13 months. ......but that has ALOT to do with the organs available, matches, etc. Not only do they go by blood type, they go by height/weight, chest cavity size, etc....they are pretty precise. I have been told there are some areas of the country where patients do not get transplanted until their MELD is in the 30-40 range, when in that case they are usually near death. However, I also know there are exceptions to the rules. So, with your father being at the top of the list several times, it could be that they did not find a perfect match. Also, ask the transplant team if they are taking livers with some flaws in them (I cannot remember the terminology). But, I know in some HepC cases, they have taken a HepC liver and transplanted it to a HepC patient and then followed w/ interfuron treatments. But, again, that probably depends on the health of the patient. Has he actually been listed on the transplant list for 10 years, or sick with liverr disease for 10 years? Sorry to be so wordy, but I do think that the waiting time varies from region to region......hope I have not misinformed you.....just going by what our transplant center told us...I am in TX. You hang in there....I will pray that a liver become available SOON!

Mer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/2/2008 4:13 PM (GMT -7)   
Mer, regarding the donor livers with flaws, I've seen them referred to in Mayo material as "less than optimal."

Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 12/2/2008 5:22 PM (GMT -7)   
Hi Seth and welcome to the forum. My husband is also going to SLU. He was diagnosed with cirrhosis 2 years ago but has not been placed on the transplant list. His MELD score had remained between 9 and 11 until a week ago from Sunday. He had a massive bleed from varices in his stomach. He almost died. The bleeding stopped on its own. He stayed in the hospital until Thanksgiving day. His MELD score jumped to 17. That was the first time the transplant list was ever mentioned to us. We were told if his MELD score remained 15 or above they would do the work up to get him on the list, but they expect the score to go back down after he has recovered from this incident. The doctors also told us that transplants there usually occur when the MELD score is in the 20's. My husband has to have the TIPS procedure to help prevent future bleeds. My son has the same questions as you. He wants to donate part of his liver to his dad, but my husband refuses. He doesn't want to put his son in harms way. This disease is so horrible and unpredictable. I'm so sorry that your family is going through it. You will be in my prayers.
Butterflythree
 
There is always hope!


sburrell
New Member


Date Joined Nov 2008
Total Posts : 9
   Posted 12/2/2008 8:04 PM (GMT -7)   
Butterflythree

Thanks for the reply. This disease manifests so different in different individuals. My father has been dealing with this for 10 years and just now when his score is in the low 20s he has bleeding and your husband has bleeding after 2 years and a score of 17. My advice to you is for your son and husband is that waiting for the liver is probably the best option. I tried the same thing with my father and he refused. Besides they really don't do that procedure of partial liver transplant and I think it would only buy some time plus put your son in much harm. My father had the tips shunt too and it was great for 2 years and now 4 years after that procedure is back to getting a paracentesis weekly, draining 5 to 7 liters each time. The TIPS shunt is definitely a good thing to help out with the portal hypertension. I would highly suggest some alternative therapies for your husband. I happen to be in medical school for naturopathic medicine and I try and try to get him to eat well but it never works. The thing they never really (and I mean really) help a patient with cirrhosis with is optimal nutrition. The liver can regenerate. It is too late for my father but your husband could probably really benefit from a naturopath. In the midwest they aren't really known but in the northwest where I am going to school, it is huge and may people use naturopaths for their general practitioners and their insurance covers it. One more piece of advice to that you should also seek help for your self as a care giver. I am still not sure who is suffering more sometimes...my mother or my father. Good luck.
Seth

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 12/3/2008 7:06 PM (GMT -7)   
Welcome to HealingWell Seth , I am sorry about your father. Sounds like he has been through the wringer with this disease. You seem to be very educated about this disease already. You have some very good suggestions.......You are so right about the caregivers suffering along with the liver patients.......this disease can be devastating to the entire family. shakehead

As any of our members can tell you.........I am a big advocate for the caregivers to take care of themselves also. It's vital for the caregiver to stay healthy through this bumpy road trip.

Thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 12/4/2008 5:31 PM (GMT -7)   
Seth, Thanks for the suggestions. We have been really worried about the TIPS procedure, because we were told that afterwards his liver would only be filtering 50% of his blood, which would cause his encephalopathy to worsen. They say they have drugs other than Lactulose that will help control it. Did your father seem to have more mental confusion after the procedure? We are going to the doctor Monday for consultation regarding TIPS.

I'm going to look into naturopatic medicines. Thanks again for the info. I'll be praying that your father gets his transplant soon.
Butterflythree
 
There is always hope!


sburrell
New Member


Date Joined Nov 2008
Total Posts : 9
   Posted 12/4/2008 7:21 PM (GMT -7)   
Butterflythree,
My dad did get encephalopathic states now and then. We just had to watch him for signs of encephalopathy before it got bad enough and give him the lactulose which seemed to work well. Now he just uses the lactulose and sometimes he is hospitalized and needs albumin and a lot of lactulose. The TIPS shunt really helped with the fluid though...so I guess you have to weigh the options. You could seek a naturopath...a health care professional that could offer great nutritional advice as well as support other bodily systems.
Hope that helps.
Seth

Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 12/5/2008 5:30 PM (GMT -7)   
Seth, Thanks again for the info. You have really helped alot. It is really thoughtful of you when you and your family are going through so much. Good luck with your studies. You seem like a very intelligent person.
Butterflythree
 
There is always hope!


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 12/5/2008 10:05 PM (GMT -7)   

Seth

I find your post very interesting.  I won't be able to post much tonight as I am very sleep deprived.  My husband is on the transplant list at Vanderbilt Medical Center in Nashville.  His liver Dr. there has made it his mission to study on nutrition.  I totally believe what you are saying.  As for the MELD score being the end all.  You do get extra points for symptoms other then the three you mentioned.  Such as low sodium level.  Also for the fluid in the sack around the lung.  My husbands MELD was an 18 all last year.  He was being drained sometimes twice a week.  They were considering doing a TIPS but his Dr. at Vanderbilt did NOT want to do that.  After reading some of the old posts on this forum I am so glad he didn't.  He did have to take what I would call lethal doses of diuretics that on a few occasions just about destroyed his kidneys.  He finally stabilized in July after a year of in the hospital as much as he was out.  His body is tired putting it mildly.  His MELD went down to a 10 last month but is now starting to creep up agian.  And the swelling is getting bad again.  Her we go on that horrible ride again.  One of those be careful what you wish for.  I feel for you to be going through this for 10 yrs.  And your poor dear Mother.  I am suffering from major burn out so I can not immagine what your Mother must be going through. What do you do.  Just keep going.  We have no choice.  Also we were told that the average time for waiting for a transplant at Vanderbilt is 15 months.  But that is just adverage.  My husbans blood type being O means he will have to be at about a 25 to get to the top of the list.  Also Vanderbilt runs a very strick transplant program.  If you don't follow the rules you can be listed.  That way anyone that is on the list does not have to compete against someone that is not going by the rules.  It totally makes sense.  I'm rambling so I need to try and get some sleep.  My thoughts are with you and your family as they are with all these wonderful people on this forum.  We are all like family.  Please stay with us as everyone here shares their experiences its a tremendous help.

 

JoAnn 


sburrell
New Member


Date Joined Nov 2008
Total Posts : 9
   Posted 12/6/2008 11:03 AM (GMT -7)   
JoAnn
Thanks for the reply. It was very insightful. When I say they handle nutrition, I mean that they stay away from a lot of proteins to avoid the urea build up and of course the sodium. But, they still do this with hospital food at least when he is inpatient. Plus he will beg me a use that sick father trick to get his cinnamon rolls ;-). What I am saying is that there is a whole field of research dedicated to healing through what you eat...and it has always seemed odd to me that hospitals will buy the cheapest, most chemically altered-for-longer-shelf-life-food and serve it to patients even though it has been proven that fresh foods heal. Anyway I will get off my soap box. I am sorry to hear that you are burned out. I cannot identify with it as much as my mother and you of course. I can only identify with it through my mother and I must say that taking care of your self IS taking care of your husband. When he is doing well you have to take advantage and do happy fun things with him or with friends. My mother is very fortunate to be surrounded by an amazing support group.
On the subject of MELD score...it is frustrating for many reasons. We did not know that the doctors were taking into consideration fluid in the lungs or that that would increase a MELD score. We quickly found out that it was us that had to ask the right questions or we would never know these things other that the brochures they give us. Luckily my sister is an amazing nurse that realized the conventional medical system is imperfect and I am in medical school, so we both ask so many questions. Plus my mother (a retired librarian) has become very versed, medically, and knows very much about all that is happening. This has been very useful especially lately. Your comments on the TIPS shunt were very interesting. The doctors pretty much sold us on this as well as the research. It did actually help quite a bit for the 2 years it is said to last. I think we are going on the 5th or 6th year now with it and they have have to "open" it up once with a minor surgery. Plus they think it is the sight of a "smoldering" infection. They did the TIPS procedure thinking that he would get a liver in a couple of years. Now it could be a bad thing...?
Well anyway. Thank you for your comments and good luck.
Seth

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted Today 10:36 PM (GMT -7)   

Seth

I love your post.  You are very articulate and helpfull.  I== like your mother have spent many hours reading and trying to understand this disease.  Not being in the medical field has made it much harder for me.  But I too am surrounded by a great support system of family and friends.  Our adult children do read as much as they have time about this horrible disease.  As I tell our friends it consumes all of my time.  Our world is now all about ESLD.  Its all we now have time for.  That and trips to the ER and Dr.  Not to mention the three hour drive to Vanderbilt every 90 days.  That is until something life threatening happens.  This month we are deep in to blood transfusions.  They are coming every two weeks now and it is taking two to three to get his HCT up so he can at least function.  Next week back to Vanderbilt for a scope.  To try and find the bleeds.  They have told us they may not find any.  I'm not sure if that is good or bad news.  I think his MELD should be rising this month as both legs are swollen to the point of seeping fluid>  Yes, it is horrible.  I do try and take care of myself.  At least the best I can as I watch my best friend suffering so.  Thank you Seth for you imput and I hope you continue to inform us.  I am very interested in the nutrician part of it.  As I have a brother that is a quad.  He was educated at the Univ of Wash. 20 yrs ago when he had his accident. They trained him very will on nutrician.  His life expectancy at that time was 10 yrs.  They did do a good job.

JoAnn

JoAnn

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