My partner has Hep C2a and is doing nothing about

[yobimmbo]

 :'(Hi....I really don't know what I think this is going to do.  But I just really need to kind of talk or express or something.  

I have been with this man for 16 years, he's been my bestfriend for 20, now all we do is argue.  The distance between us grows all of the time, not from my end of the relationship....  

I cannot see myself going through life without him....but he seems to not want to even try to fight this.  Is this normal?  His viral load was 4 million five months ago.  His so called doctor told him to stop smoking so he could treat him.  And then sent him away saying he could get treatment or not, it was his choice.  He has lost his appetite and is losing weight.  Now I notice that he is jaudice.  They did a scan on his liver and saw no damage.  But that was 5 months ago.  I am so afraid for him ( and myself,  I cannot see me without him).  What can I give him or what should I feed him.  I've cut out a lot of fried food, and I give him alot of non- animal protein, plus alot of fresh veggies and fruit, plus Ensure.  For a while he was eating 3500 calories a day and maintained his weight, but now he barely eats because he says he isn't hungry.  

He's the most wonderful person.  How can I help him?  And me?  I am so afraid and depressed.  I do not let him know that I feel this,  but I cannot sleep because of worrying about this.  

Any input will be greatly appreciated.

Claudia

[willy]

Hi and welcome Claudia.

When I first found out that I had HCV....... I stumbled onto this site because I had experienced help thru another 12 step group; Al-Anon.  I first came to Al-Anon because I was in a failing relationship.  My wife was spiraling down in alcoholism and other confusing and self destructive behaviors.  I felt as if it had become my job to do many things that pertained to keeping her "on track".  Those might be trying to control her intake and social activities that might impact on her intake, and the variety of other things that were crumbling around her disease.  It's been 5 years since we have separated and ultimately divorced....... and she still drinks.  I want you to be aware of the first step in dealing with this problem that you are experiencing....... is that you are powerless over other people, including and especially your mate.      There's no argument or question....... we may know what's best for them....... but we have to draw that line for ourselves....... we can only help them so far; it's ultimately their life and their decision.  

I have a problem with Al-Anon....... they were created ONLY for helping the loved ones of people that are affected by anothers drinking.  I occasionally volunteer to speak at a local substance abuse clinic..... to speak to the families of those that are in treatment....to convey to them that Al-Anon is available to them.  We end up telling people that Al-Anon is for the families of alcoholics...... but that it might be also helpful for those with other substance abuse issues.  You see..... the dynamic is exactly the same.  When a person loses control over their life due to whatever form of substance abuse....... the effects are very similar; they can have problems at work, at home, with their extended families, they can have finacial problems, marital problems, incarceration problems........ there are commonalities with the forms of dependancies.  The effects are all pretty similar on their loved ones.  If you broaden it further..... from substance abuse to dependancies of other types....... it is still the same thing, and still the same result for the loved ones.  The spouse of someone that is dying from overeating......or anorexia......they are both going thru many the same problems as the spouse of the chronic alcoholic or heroin user.  Where do you fit in here...... I am aluding to the fact that your loved one is not taking care of himself. that he is faltering......failing before you.....and that he is not taking the apparent actions (that would be treatment or cutting back on his smoking, or maintaining his eating) that could save his life.  Does he ever drink?  You are probably qualified to go to a few al-anon meetings.  I would consider going even if you are not qualified.  You don't even have to say anything in a meeting; just go and listen.  I will warn you in advance..... the program is not to help you figure out how to help your loved one with the hand that he is dealt.  It exists to help you figure out the hand that you were dealt.

So far as his HCV....... I don't understand several things.

If I am to understand that he is a genotype 2....... he should just bite the bullet and treat.  He can probably beat the virus.  Genotype 2's are the shortest and more successful treat.  I believe that they are about 85% successful.  

Next....... I don't understand what the smoking has to do with whether he treats or not.  Many smokers do treatment.  While smoking is bad for you.....and it may ulimately cause him health problems down the line...... I'm not aware that it seriously effects the outcomes of treatment.

Juandice...... I'm not sure why he has jaundice..... but it merits medical attention.  People don't turn yellow for no reason.  It is an important event if that is happening.  The ultrasound that was given is not a conclusive form of evaluation of liver damage.  I would think in the presence of jaundice that you would also be getting a biopsy and frequent liver function tests or a fibrosure test (this is a simple blood test to evaluate liver damage) at the very least.

I also wonder if your loved one is seeing a hepatologist or gastro.  I'm no doctor.....it sounds to me as if the doctor is cutting him loose a little.  Doctors too have to detach....... they can't always make their patients do what is best for them.

Well.....I've rattled on long enough.  I hope that some of this helps.  Feel free to ask questions.  Of course, he is welcome here too.

Best wishes.....
Willy

[countrygirl]

Hello Claudia,

Sorry to hear about the situation you are in, but glad  you found us and feel comfortable enough to share your feelings and concerns. Sometimes just venting helps to lift the load and allows us to see things more clearly and calmly.

At times doctors do have to detach, as Willy wrote. Once a doctor has presented all the information and options available, it is ultimately our own decision whether we treat or not. A frightening decision to make, especially at the beginning when we are innundated with statistics, possible side effects, financial concerns, as well as the progression of our disease.

That's why boards such as this can be so helpful in trying to decipher all the info, as well as hear from others that have walked in our shoes.

On the other hand, if you feel your doctor was giving your mate the brush off and not providing him with enough support to get him through this initial confusing time, seek another opinion...or two. Our docs are going to be our partners in health for a long time, and we need to have an ongoing and open relationship with them for the duration.

Your partner sounds like he may be depressed about his diagnosis right now. That is a very normal reaction to "the news". At first it can seem like a death sentence, but it isn't. It's a call to action, to become our own  advocate and plan a course of action to preserve our health. For some that may take the form of treament, yet others choose to make changes in their life style and try alternatives until a better treatment becomes available.

I would encourage him to see a doctor he trusts about his jaundice and weight loss. These are things that should be followed up on in a timely manner. So many symptoms those of us with HCV may have can mimic those of other illnesses but jaundice is one that is of hepatic origin.

What can you do to help him? You're doing a great job of it from what you've written. Being there for him, encouraging him to eat and helping him make healthy choices as far as diet, even tho he has no appetite. We should all be so lucky. But ultimately, the next step is up to him.

In the meantime, your health and well being is of equal importance, and I hope that you will some back as often as you need for support and encouragement.

It's a good place to hang out wth others that care.

Keeping you and your man in my thoughts and prayers.

Pam

[willy]

I've got one more little addition.  I was in a teeny hurry this morning.  I also try to tread a little lightly about suggesting it, but there is just a hint of wondering if your hubs is seeing a GP or someone that is not used to HCV.  If he is experiencing jaundice he should probably be seeing a specialist.  I just couldn't tell from the post whether the doctor didn't know, couldn't tell, etc....... or whether they were "done" laying it all out for hubby and the next move was his.  

Best,
Willy

[robin]

Just want to add an additional thought or two...a viral count of 4 million is not considered to be high and if your partner isn't having adequate fluid intake with liver problems, he can appear more jaundiced than if he were well hydrated. The foods you eat can also give you a jaundiced appearance but it doesn't appear he is eating much. I second or third the idea of finding either a gastroenterologist that is experienced with hepatitis patients or a hepatologist (usually at a larger facility) and get some current labs and whatever tests the doc indicates and then schedule an appointment to do nothing but go in and discuss the labs. Do your research so you will know what normals are and what different enzymes will be affected. The good thing...the virus moves slow. Keep your spirits high...robin     

[Hank's mom]

Hi. Sorry about your struggle. Loving someonee can be hard under the best of circumstances. If he know you care, which even a lovesick fool can hear from your letter, that is the best you can offer. But, without having been there at the doctor's office with him to know exactly what conversation took place, my doctor gave me the same choice. Treatment, even for the mildest cases requires a commitment, requires a choice to make that commitment. My doc also told me ways to make myself stronger so that I'd be beeter able to deal with the treatments including stopping smoking. Though my husband and children decided to be supportive of me, he has had days when he had to take off from home to work extended overnight shifts, (which with winter coming, he plows for the state and has pulled forty hour shifts, we can look forward to more of those) or taking time off to relax with his friends or my kids just needed to get out and be kids, I still had to honor my commitment to get well. when your husband decided to deal with his disease he will or may decide he can't do it. Your support, in all honesty, will have to respect that. Its kind of like a health care proxy - do we sign on as the person that will honor those wishes or not. That is your choice. Be gentle with yourself and good luck.
momxfive

[jody13]

Sounds just like me. I was really down for a while but decided to fight it and I am. My load was over 5 mil. Had all the test and a bioi of the liver, nothing. Only my opinion, I'm not a doctor thank God. But the Max milk thistle , vitamin c and a few other herbs that people have been talking about seem to work . I feel better an and the itching has gone away, For how long?? But it is a start. You can't force any body to take care of them selves but it sure would help if he tried. There is no need to give uip There was a whole group of people that put down what they were taking and they are doing ok as far as I knowThe interfuron might work , I'm not on it and hope not to get on it. . Good luck 

[Rainbow]

Willy....smoking does impact treatment.  It raises liver enzymes.  But it is unrealistic to expect someone to quit cold turkey.  I tell people to at least try to cut down during treatment.

One other thing.  Liver transplants are denied to people who smoke. 

star

[Al]

Liver transplants are denied to people who smoke.

What if you're just "smoldering?"

[19Dragon52]

Hey Al!

*Thumbs Up!*
(couldn't find the "thumbs-up" emotican)

*May you have Good Reflections for this Special Day.

Later.....

[Rainbow]

"Smoldering" can have different meanings to different people....LOL

If you smoke at all Willy, you'll be disqualified.  Because smoking can cause many problems with blood vessels/circulation ]which can cause your transplant to fail.  They want to give a new liver to someone who is going to take good care of it.  I've heard of some Transplant Centers that check urine tests for nicotine.

star 

[willy]

...........
Next....... I don't understand what the smoking has to do with whether he treats or not.  Many smokers do treatment.  While smoking is bad for you.....and it may ulimately cause him health problems down the line...... I'm not aware that it seriously effects the outcomes of treatment.

LOl.....good one Al.       This thread is nearly a year and a half old.  We just got the one post from the origionating member.  Too bad we never heard the outcome.  I hope that it helped them.

I never heard whether or not they needed a transplant or not; just that they had jaundice. 

star, I've just never seen a study on the effects of smoking on outcomes of TX so I was "winging it"     No doubt it's bad for anyone treating for a number of reasons.  We've seen that smoking pot is being linked to an increase in fibrosis but they really have to smoke a lot of pot each day.  Some of the same effects of smoking (tobacco that is) could have similar effects but I've just not seen them.  I have deciding to quit might be tough during TX  because it is already a very difficult time.  On the other hand It seems that I've heard that some people found it an excellent time to cut back or quit smoking since they already felt like crap anyway.  Interesting mechanism but I would imagine that most people who smoke or drink probably do much less of each when they have the flu; make sense?

Transplants and being rejected for not taking care of yourself?  It's an awesome responsibilty to decide who gets the "gift of life" and who gets passed over.  It's just the way the numbers shake out.  There are way too many people who need a transplant;the demand far exceeds the supply.  I sure understand why they need to give it to the most deserving person.  One story I read on the net was about a guy that was waiting for a transplant who decided that he'd smoke a little pot.  Of course...... if you need a transplant the stuff is going to stay in your system a long time.  The board detected the presence of THC and bumped him from his place on the list for 6 months.  By the time that he was placed back on the list and ready for a donor liver he had died.  People need to understand how strict the rules are and how their own actions can affect their lives.

best,
Willy

[Rainbow]

I don't think there are any studies on the effect of smoking on treatment.  But smoking does increase liver enzymes.  It's just one of those things I deeply believe in but have nothing to back it up with.....LOL.  However, I would never suggest to anybody that they stop smoking at the same time as they do treatment.  I agree with you.  The stress from treatment is more than enough.  Why add more to it.

Re: marijuana use during treatment.  A couple of studies done by Dr Diana Sylvestre showed a 12 % increase in success rate.

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