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Old 04-28-2006, 02:18 PM   #1
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Help my x-husband has Hep C and Cirrhosis

I'm hoping someone out there can give me some advise. My x-husband was diagnosed with Hep C about 1 mo ago. He has drank heavily for many years. He was starting to have pain from bloating in his stomach, when all this began about 2 months ago. He went to the doctor, they drew blood and he was diagnosed with Hep C, with a Geno level of 3. He had a ultrasound done because his PCP thought he might have a lump on his liver. The ultrasound came back o.k. with no lumps. He went yesterday for his first visit to the Hep Clinic and was told he would start treatment for the Hep C. The doctor at the Hep C clinic told him that they would not treat him until he has been dry from alcohol for 6 months. Once he has been for a straight 6 mo, then they will take a biopsy of the liver and at that point will decide what their next move will be and it will either be treating the Hep C or placing his name on a transplant list. Is this normal to wait for 6 mo? Can they not treat the Hep C if he is drinking. I totally support his abstinence from alcohol but I'm concerned for the wait period and just wondered if this is normal. He said his liver level was high (whatever that means). He is kind of burying his head in the sand in hopes it will go away. Even though I'm not married to the guy anymore we share 2 children that I'm very concerned for my children's sake. Thanks, wendy

 
Old 04-28-2006, 09:52 PM   #2
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Re: Help my x-husband has Hep C and Cirrhosis

This whole concept of conforming to their rules just makes me mad.
Are you telling me that they will not treat him till he's dry for 6 months? Are they NOT going to offer him any help with this? Dr.'s are so dang insensitive (and just plain cold-hearted due to the big bucks of insurance companies). Just as my Dr. says for me to quit smoking but NOT offer me the patch and expect me to quit "cold turkey" after I've been smoking for 40 yrs. and am truly addicted to nicotine? Holy chit! Do they really think there is an on/off button we can hit to turn the cravings off? And then he charges me $120 to tell me I must quit smoking, cold turkey, but with no help.
So what are the insurance companies saying? because you have an addiction you cannot be treated till you show us that you are willing to conform to our standards?
What about overweight men and women? Do you not JOG on a daily basis?
Do you OVERCONSUME to many carbohydrates and watch more than 1 hour of TV on a daily basis? How many potato chips do you consume in a day?
OOPS! Wrong answer! How many calories have you burned today?
BBZZT! Your are not meeting our standards. Seek medical attention elsewhere! BTW because you are not exercising up to our standards, and eating low-fat, you are in-eligible for any other health benefits for 6 months till you meet our standards for insurance. Please re-apply, but to keep you health insurance from "lasping" please continue to send the $700 a month needed to keep you covered before entering into "high-risk".
Health insurance needs a make-over big time.

 
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Old 04-30-2006, 03:04 AM   #3
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Re: Help my x-husband has Hep C and Cirrhosis

Abstinence from alcohol for 6 months is considered standard management.Alcohol and interferon therapy are contraindicated. Your husband needs to take this seriously, if he follows the doctor's advice then he stands a good chance of managing the disease. If he continues to drink, he will continue to damge his liver. He might possibly be able to avoid a liver transplant if he does as the doctor says--stop drinking. The biopsy after 6 months of abstinence from alcohol will give the doctor a true picture of the health of your husbands liver and determine the course of treatment.

 
Old 05-01-2006, 05:50 AM   #4
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Re: Help my x-husband has Hep C and Cirrhosis

It's not quite like the doctors are doing nothing. In fact the best thing your ex could do today for his liver is to stop drinking immediately...it will probaly do more for him than the most cutting edge treatment available.

His liver is being destroyed and it's a toss-up as to what's hurting him more, the virus or the booze.

The swelling in his belly is called ascites or dropsy. It's the belly filling with fluid in the end stages of liver disease. I had an uncle who presented with the same symptoms and got the same diagnosis...no cancer, but cirrhosis and hepatitis. That was a Friday and he was dead by Sunday. He typically drank a case of beer and a bottle of whisky every day...I didn't think it was possible to drink that mmuch. He died at age 33 and there were no liver transplants being done back then.

There is the possibility that his doctors have written him off as hopeless and just told you anything to get him out of the hospital/office.

Last edited by Lenin; 05-01-2006 at 05:59 AM.

 
Old 05-02-2006, 06:45 AM   #5
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Re: Help my x-husband has Hep C and Cirrhosis

mari is very right.there is no sense in giving him any sort of actual treatment for his liver problems if he is still drinking.it will not help him at all.the thing is,even if he needs to be placed on the list,he will also have to become a non drinker for like (if I remeber right) at least six months just to be placed,and will also have to abstain if he is actually lucky enough to get a new liver,forever.there are many many people out there in need of livers(my then twelve year old son used to be one of them)and UNOS will not give any organ to someone who is just going to abuse it and lose it when there are others who would be much more willing to do anything and make many changes in their lives just to have it.

unfortunetly,these are the rules when the need far outweighs the amount of organs that are actually availiable.UNOS HAS to be tough and very rigid with the rules as peoples lives are involved.the people who refuse to give up a very destructive lifestyle but somehow expect to get a new organ will not ever get one.unfortunetly,there are just not enough donated organs to go around.the last time I checked(about a month and ahalf ago)there were 89,000 people on the "list' all waiting for new organs.The fact that my son actually got a new liver in just the nick of time(believe me)was a true miracle,totally.he is alive and well after almost seven years with this wonderful gift from a grieving family who had just lost their daughter.

I certainly hope your ex will decide to quit his drinking,for many reasons.but he has to want it,badly.he really needs to get himself into a good treatment program soon and then really practice all the steps and do whatever it takes to maintain his sobriety.I wish you both luck,Marcia

 
Old 05-16-2006, 02:01 PM   #6
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Re: Help my x-husband has Hep C and Cirrhosis

I agree with all the advice given..my husband ( a complete non drinker) also has HepC and cirrhosis. He has probably had the Hep C for 40 years. He also has liver cancer. Because of the cancer, he is now on the waiting list for a transplant. Yes, it does seems cruel to tell your ex to just "stop drinking" cold turkey, but the alcohol is in actuality killing him. The only reason my hubby survived so healthily for so long with Hep C was that he never drank, ever. Even after the transplant (which God willing we will get--we've been on the list 5 months) he will STILL have Hep C and will likely have to go through interferon treatment.
It does seem cruel or maybe heartless the way UNOS decides how organs are allocated to recipients....but it has to be that way because there is such a huge demand and so few donors. My husband is currently #1 on the list at the hospital where he will have his transplant---finally, after 5 stressful months.
So, yeah, it sucks that your ex has to give up the booze for 6 months,(actually, forever) but if he wants any chance at life, he's got to man-up and do it. My husband takes no medications opf any kind, ever, but post-trnasplanthe'll be on striong drugs for the rest of his life. Does he want to do that? Heck no, but he wants to LIVE, for his family and for himself. Good luck!

 
Old 05-18-2006, 07:04 AM   #7
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Re: Help my x-husband has Hep C and Cirrhosis

sorry to hear about your husband liz.just what is your husbands status number?my son had entered the hospital at 3 and within just a couple of weeks was in almost toal and complete liver failure and was shot up to status 1,unbelievably,that very next morning,we got the 'call'.amazing miracle really.i do hope your hubby gets that call soon.

luckily,they are now getting much better and more specialized about the post transplant meds that every recipient has to take to maintain anti rejection status.my son has to take five seperate meds many times a day but from what I have been hearing and from one particular gentleman who posted here not too long ago,(this guy is only taking one med,just one,prograf,which is one of my sons meds too)they are actually getting that normal multiple med thing down to fewer and fewer.so hopefully your hubby wont have to actually take too many.unfortunetly for my son,once you are started on the regimen of the multi meds,you annot go onto the one only med thing as his body is now too used to this combo now.but it does hold much better post transplant med care for future recipients like your hubby and for me when my kidneys start to finally go.



just out of curiousity,where is your hubby listed at (what hosp?)my son had his transplant at the univertsity of MN.what a truely wonderful place it was.they took really great care of him there.his transplant surgeon was a really great caring guy.something i did not actually expect from an actul 'transplant surgeon"ya know whatI mean?the EGOs?please keep me posted on how things go.I will say a little prayer for him.the prayers we recieved from sooo many people,some we didn't even know,really are what got my son thru his nightmare and made that liver availiable in just the nick of time.he truely was down to only having days left.unfortunetly in order to actually get to status one the transplant commitee has to agree that if the organ is not recieved within the next 72 hours the patient will most likely die.not a goodthing,but once my son went national on the list(this comes along with the status one)instead of just regional,thats when he got the new liver from wayyy out of what would have been our actual region.so that move actually saved his life.I hope things will go well and very soon.keep me posted and hang in there,it WILL come.good luck,Marcia

 
Old 05-27-2006, 11:24 AM   #8
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Re: Help my x-husband has Hep C and Cirrhosis

Hi Feel Bad,
My husband is still #1 in his group, and has a MELD score of 22, so he isn't considered critical enough, I guess--Tuesday they'll reimage his tumor, something we had been PROMISED they wouldn't have to do again---(doctors are really idiots sometimes, I mean how could he have looked me right in the eye and said "don't worry, we;ll never get to that point, don't think about it") and we know if his tumor has grown over 2cm's he gets delisted.....which essentially means go home and die. They might possibly try to shirnk the tumor with an alcohol chelation, but the location of the tumor is deep within his thoracic cavity, right next to the vena cava...not a good place to be. We've had two "false" calls--where he was the back up recipient, and that was horrible, in both cases, so unless he gets called in between now and Tuesday at 8 am we have to go through with the new scans. On the upside, the reimaging will automatically up his MELD score to a 25, which is puts him in the more critical group, making a transplant more likely in a shorter period of time.
Our hospital is LDS hospital in SLC, which until very recently, was the only hospital locally to do tranplants..now the U Med Center has begun to do them too. I don't know if that hurts our chances or makes no difference. So far we've only met with our surgeon once and he seemed ok. I know surgeons are generally really cold and kind of clinical and uncaring, and this guy seems to fit that bill, sort of. I'm sure he just can't get personally involved, it'd be too hard. But we sure don;t feel like anybody is looking out for us, which gets distressing.
I'm glad for your son--wow. I don't think my husband will ever be so sick he;ll wind up in the hospital. He'll either get the transplant or he'll just fade away. It's awful to watch him just get a little sicker every day as it is. Our daughter gets married on the 9th of June and we are so mixed..do we want him to get trnasplanted before that or wouold we want him to wait....I want both to be over, personally, as I am hanging on the last tiny thread of my sanity! Ironically, my new son in law is in Med School studying to be (of course) a cancer researcher. He's brilliant enough he just might really make a difference in the field...but it will probnably be too late for us!
Hope your son continues well--what a miracle for him! Curitosty makes me wonder where he was transplanted and when?

 
Old 06-12-2006, 06:09 AM   #9
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Re: Help my x-husband has Hep C and Cirrhosis

Wendy,

I feel your pain....my ex-husband who was just 41 passed away on 02June06. We have been toghter since 98 were divorced for 2 weeks but just never got remarried. He was in the hospital in April but when they found out he did not have insurance they discharged him from ICU and told him to see a doctor in 2 weeks......how was he supposed to do that? He could not work due to his illness which was diagnosed as ETOH Hepatitis.......1 week later his fever spiked to 104 and he was admitted to another hospital........and was there for over a month.....the doctors were NEVER straight with me.......every day I was told a different story......I asked point blank if he was going to die and they told me no as long as he quit drinking....well he did and still died. James did not have Hep C but my advise is to get a second opinion....he was sick for many years and NO ONE ever picked up on it

 
Old 08-13-2006, 10:57 AM   #10
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Re: Help my x-husband has Hep C and Cirrhosis

Alchhol acts as fertiliser for hepc virus.I told the Doc I would quit and if I started back I would tell him and he could drop me.A lot of ins co's will pay for treatment because it does'nt work if you use alchahol.Also many over the counter meds make it worse no acetamenaphine(tylenol)ever drink distilled water,Basically you try to cut down on anything that might be filtered thru the liver.Milk thistle is reccomended but I don't use anything.Also get the docter to refer to the treatment as chemotherapy(it is)interfern and ribavarin.It will make you so sick you won't be able to do anything for a day three.It also made me so anemis I almost had to have a blood tranfusion.I could only tolerate 5 weeks of treatment.It also alter's your personality you get very short tempered and over react to things.But it lowered my viral count to a normal level for now

 
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