Hep C treatment

[Evanna]

My husband has just started a 48 week course of interferon and other meds for Hep C and i am really struggling to cope with the whole idea. He seems to be determined just to get on with it and i am all over the place. He is the one got to go through it yet i seem to be the one having to come to terms with it. I feel totally overwhelmed and completely selfish for being like this. I know that he knows that i am struggling with the whole thing and i notice he goes out of his way to make sure i am okay. It is madness really that he is the one being ill yet i am the one being looked after!

Leading up to the whole Hep C treatment thing i was incredibly angry with him. Angry that he had made the decision to go ahead with treatment and be sick. He was just getting well after all those years in addiction! Enough already. At the same time as being mad i wanted to be supportive. Some of my other friends are now being diagnosed with Hep C related liver cancer so i understood on an intellectual level that this had to be done. Still didnt stop me being mad though.

Then when he started his first meds and had interferon shot he had a really horrible reaction shaking and hurting all night and i came to realise just how aggressive the treatment is. I stopped being mad with him and started to love him fiercely and started being mad with the hospital. I mean what were they playing at! You dont take a seemingly well person and make them sick ffs! Whats that all about!!! And even though i am starting to realise that the medical community might have been right to make such a fuss about Hep C i still dont trust them and their treatments. However this isnt my decision. My husband made the decision to hand over to the experts and i have to respect that. He also says that the hospital havent made him ill....it has been his choice to undergo treatment. That makes a kind of sense to me.

Now as the week has gone on i have been overwhelmed by incredible sadness. And i am struggling to hold my head above water. I feel on the edge of sinking into deepest depression. I hate seeing my husband weak and cold.
I am finding it hard to keep this in the day and see the next year stretching out in front like a big bleak place. I have no idea how a person can cope with being ill like this all the time on a mental level.

I am also very afraid. In some ways the weakness and illness reminds me of the using. I remember shaking ill in bed after dirty hits and the feebleness of being strung out. And we have drugs in the fridge again and a sharps disposal bin. Not the same i know but it brings back the feelings somehow. Over the years i have seen a lot of people not handle this treatment and go back using. I always thought that it was just an excuse to use. But watching this week unfold i realised that i had no clue what these people were going through. How easy it must be for the sanity and choices to go when you are hurting, tired, ill and depressed over an extended period of time. How on earth does one make oneself take that interferon hit over and over. That must take more strength than i can ever begin to comprehend.

I am very proud of my husband for his whole determined attitude towards this. He clearly feels like cr@p but is determined to try and knuckle down continuing to function for the family as best he can. I know that i need to find release from some of the feelings i have around this if i am to be able to be supportive. I really want to 'get over myself' so i can truly be there for him unimpeded by the mixture of anger, fear and sadness i am currently letting rule.

Thanks for letting me woffle on.

[Evanna]

Are there any of partner's of people undergoing or having undergone this treatment out there? Or people being treated for Hep C that have partner's reacting strangely. Or people in different situations that have thrown up similar feelings? I would be interested to hear your experiences. Thank-you.

[snowwhite]

Evanna,

I am not that much support when it comes to "knowledge" about this particular treatment, but I wanted to let you know that I do feel for you and I do understand your feelings! Don't be so hard on yourself, as it's very hard on you to take care of someone you love and also to watch him suffer as you sit by having to watch him undergo all of this torture; meanwhile, you have so many unanswered questions of "what-if's" and if this is the right choice. In your head, you know that 48 weeks is going to be a long haul and it's only begun...and in your mind, you know you've only seen a touch of his illness. This is very scary for you and you will be suffering also because you love him. I took care of my daughter similarly and had all the emotions you are having...anger, sadness, disbelief, etc., and there was nothing I could do about it except let the medical profession tell me what was best for my child, and then I would have to go from there. And I was the one who had to make these medical decisions which some did cause her to suffer because I felt I had no other choice to reach a good outcome, but at least this was your husband's choice, so that burden of guilt is already lifted from your shoulders. Still, it was so utterly frustrating and so depressing and never seemed to end. Treatments that are so extensive like this can really drain a person who is the "caregiver" and who is emotionally attached, such as you. I know that there seems to be no end in sight. But hopefully over time this will be worth it and will help your husband, so always try to think about the advantages in the end that this treatment can have for your husband. And since you feel the need, do extensive research...there's certainly advantages to that...as you can help direct him about what is medically best for him. Always remember that eventually the 48 weeks will be over, and hopefully you will be so glad and grateful and will look back and wonder how you two made it through all this. And then you will be so elated that this is all over and you've finished this particular battle.

Again, sorry if I butted in with my lack of knowledge about the usefulness of this treatment, but I just wanted to reiterate that you, too, have a right to feel the mental stress from this that you are feeling. It's only because you are so involved and have so much love for your husband. I wish I had answers for you though.

I hope that it all goes well for you both! You will be in my thoughts and prayers.

Love,
Snow

[Buzz Kilowatt]

Evanna,

I wish I could offer you some comfort from experience, but unfortunately I can't. It would be wise to seek some psychological counseling for yourself because not only can it help you deal with fear and anger, but it can help you to support your husband during this difficult treatment.

I doubt most people are aware but the quality of healthcare in the U.S. runs the gamut of a bell curve. Some institutions do very well and others the opposite; most places fall somewhere on the hump.

The challenge is to find the places that offer the best care for Hep C. Institutions are rated and graded on their success rate but this info is not readily available to lay people.

One of my clients is an endocrinologist who has done cutting-edge research on medicine that prevents scarring. The scarring process causes a dysfunctional liver and likely gives rise to carcinoma as well. Prevent the scarring, and you protect the liver.

Most health care practitioners are unaware of the strides made in scar reduction therapies. It is well worth investigating with your doctors.

Good luck to you both.

Buzz

[Evanna]

Originally Posted by snowwhite

Evanna,

Again, sorry if I butted in with my lack of knowledge about the usefulness of this treatment, but I just wanted to reiterate that you, too, have a right to feel the mental stress from this that you are feeling.

Oh Snow, you didnt butt in! You reply to me was perfect. The treatment is really my husband's choice so its usefulness or otherwise is out of my control anyway (although i will do some research as you suggest as i think that is good idea). What i really needed here and what you gave me was someone who understood the feelings. In talking about your experiences with your daughter you put into words some of the things i had been feeling but couldnt verbalise. I also really needed to hear the main message of your words too which read to me that the confusion i am undergoing isnt because i am a bad self-obsessed person, it is because i really care about someone else and it is normal. Thank-you so much!

[Evanna]

Originally Posted by Buzz Kilowatt

One of my clients is an endocrinologist who has done cutting-edge research on medicine that prevents scarring. The scarring process causes a dysfunctional liver and likely gives rise to carcinoma as well. Prevent the scarring, and you protect the liver.

Most health care practitioners are unaware of the strides made in scar reduction therapies. It is well worth investigating with your doctors.

Good luck to you both.

Buzz

Hi Buzz,
It really helps to know you took time to read and give me your thoughts. Thank-you!

I am in the UK so i think our health care service is set up a little differently. From what i have read on these boards we are extremely priviledged in the UK with our free health service. I have never heard of the scar reduction therapies before and they certainly havent been mentioned at the hospital appointments he has had. Maybe they havent reached over here yet? I dont know i will do some internet research and ask about it at the next hospital appointment. Thanks again.

[woops]

Hello Evanna,
This thread caught my eye as a very good friend has just finished her year long chemotherapy for treatment of HepC.
Maybe I could just tell you a little..............
We are in the UK.
Now - this friend contracted HepC while giving birth some years ago now. She needed a transfusion. The government already knew about the contamination of the blood in the early 80s - but were not telling........................ horrible bit of politics!!!! Apparently - blood only needed to be treated with heat to kill the HepC virus. They chose not to reveal that and used contaminated blood for about 4 years before making all samples treated with heat before transfusion. Shocking?? The law - it has all been run thro the Courts - admissions made by government and settlements made to haemophiliacs and people who contracted the disease by govt allowing transfussions of contaminated blood. HepC is called "the silent epidemic" as there are thousands and thousands of people out there who do not know that they have been infected.
My g/f only found out when she went along to the blood transfusion unit to donate blood......................... and it was diagnosced then. She got such a shock. So - she has been carrying it unknowingly for the last 22 years. Never had any symptoms.
After the initial shock - she was assessed over the next couple of years and the type of HepC was properly diagnosced and classified - there are several types - it turns out that she has a slightly rarer form than many - but she is now in contact by email and phone with others with the same..................Self help groups. I know she is on the phone to someone in the US with the same type - and she feels she is getting extremely good treatment here in the UK - and for no cost - unlike other countries. Could you just imagine the costs? Anyway................. I dont think there is a medical service anywhere in the world that can beat the UK in this. (Just hope Blair doesn't manage to destroy what should be something treasured - our NHS.)
Now - she has a full time professional job - very much in the public eye...................... etc. The family had to decide if they wanted to be tested too for HepC. Her husband decided not to - for the obvious reasons that come with the territory - like refusal of insurance for all sorts of things - like travel etc!! Her daughter has not been officially tested - she is also entering one of the professions - but on all applications these days there is a question: "have you ever been tested for HepC" "And why?" Looking behind the question etc. I think they have thought it all through very carefully................... Unofficially - her daughter (who really wanted and needed to know) just went along to give blood at the blood transfusion unit - and she was accepted as a donor!!! So she knows she does not have HepC. This way she can answer all those questions with a clear conscience................. Not daft? A very very good idea? There are such implications if you are diagnosced with HepC - from insurance all the way thro to how you are treated in society/accepted into the medical field to work etc. She has not told everybody about her illness - but her close friends and colleagues know.
But now - if she wants to travel outwith UK she simply cannot get insurance. The family were regular visitors to US - she can still go there but only uninsured!!!! Not a good situation. Europe is better - with reciprocal arrangements between many European countries. So - I would advise you to think carefully how you handle this diagnosis and who you chose to tell about it. You might want to be tested yourself? But have a good think before you do? Maybe going along to the Blood Transfusion Service would be a good way for you too - for if you have HepC it will show up immediately and they will not accept you as a donor. Anyway - its well worth thinking the whole thing through really thoroughly before deciding anything?? There are agencies that your local GP can put you in touch with - and as far as I hear - the GPs are pretty good at dealing with this - and putting you in touch with whoever...........
I suspect that you have already had a chat with your GP? Keep in touch with him/her - he has access to so much information....

Back to my friend. The treatement was pretty brutal. She lost weight, hair etc and suffered terribly from itching - all over her body. She had tremendous fatigue. Her cognitive skills suffered to and she would frequently forget the most obvious facts. She lasted the first couple of months at work - but then had to go off on "the sick" for about 8 months. She did have a lot of side-effects - but it never got so bad that she couldnt function - but she did do a huge amount of reading while lying on the couch!! But she had been well warned as to possible effects and she knew she had to just give in for the year.........
She was never on any other medication during this time - her contact in the US was put on anti-depressants as is routinely done with most patients in the US........... apparently that is not done here. She never felt she wanted to do that anyway - but the docs didnt suggest it. Thank goodness - or she would be facing a taper off those now. No - she knew what was coming and bore it with the knowledge it would only last a year - and it might very well clear the virus. (She did of course give up all alcohol - to help her liver as much as possible - she said that was the worst part of it all!! No booze!!! LOLOL)
The treatment is over - and she now has to wait for 6 months to find out if it has been successful. Her energy levels are coming back up and she will start back to work next month. She is eating well, exercising etc now - after what was for her a very difficult year. She is in good spirits! And she tries to keep herself very busy/occupied.
She will have to wait until the end of this year to find out if the treatment has worked.
Mind you - she tells me that there are now cases of people clearing the virus themselves spontaineously - so there is now a very much better outlook than previously thought. And the treatements with interferon + cocktails of drugs is forever being adjusted and refined etc - a humungous amount of research going on in this field just now.
So - Evanna - I have said far too much here - this will be long and boring to read. But give me a shout if you want to ask anything that I might be able to get answered - I will certainly be able to ask my friend directly if you want any more information. Well - I can at least try?
I suspect you will have to actually get yourself a little more used to the idea of his treatment etc. Its a difficult position that you find yourself in - and it affects everyone in the family - and can be awkward socially too.
But once you are more used to the situation and the treatment, I think you will find that you can go ahead and deal with this coming year - with lots of good information and lots of support and advice from your GP, the practice nurse and other fellow sufferers. He will benefit from speaking to other sufferers?
As to the question - why make him sick when he isnt? I can only too well understand that. Friend's husband took that view in the beginning - arguing that she had never had any symptoms - "so why make yourself so ill on purpose" when you might never ever develop the full HepC condition? Its a tough question? But friend decided that - given the chance by her doctor - she would rather have a go at the virus now - while she has a good chance - than wait another 20 years - when indeed nothing might have happened - but on the other hand - she could be facing liver cancer and liver transplant - and she would be considerably older.
So - hopefully she will have cleared the virus now and have a great outlook.
Wishing you all the best in this.........
woops

[Lbad]

Hi Evanna,
I just wanted to share that my BF did the treatment. He finished a year ago or so. It was hard. He did get very sick. He had the difficult to treat genotype. I think 3. Anyway, I guess I just wanted to share some hope. It worked for him. He is "cured". Without it he would have died of hepatitis. I am so grateful today that he did it. It was so scary. Good luck. My thoughts are with you both.

[Buzz Kilowatt]

More info:

A company called Collgard plans to do a phase 1 study on a anti-scarring agent on Hep C patients in Bari, Italy beginning this year.

Again, it's cutting-edge stuff, so I wouldn't expect it to be publicized at this point.

Nonetheless, perhaps your doc can try to contat them to see if your husband is a candidate for the clinical trial.

Worth a shot, I suppose.

Buzz

[Evanna]

Originally Posted by woops

You might want to be tested yourself?.........
Mind you - she tells me that there are now cases of people clearing the virus themselves spontaineously -

Hi Woop,
Thanks for taking time to reply at length. I liked reading what you had to say. I am a recovering addict and was diagnosed with Hep C antibodies in 1993 (no virus test carried out at that time). I was tested virus positive in 1998. Then this year i decided it was time to address the whole issue and asked to be referred to specialist. My doctor took more bloods and they came back as unable to detect virus! This blood test was repeated and confirmed so it appears that i am one of the fortunate people to spontaneously clear. From what i understand around 20% of people clear unassisted but i think that my clearance may have been quite unusual in that it happened years after the initial infection. I had been an IV user since 1982 so it is unknowable how long i had the virus before 1993.

I hope that your friend's battle has been successful and she is given the all clear.

Thanks again
Evanna.

[Evanna]

Originally Posted by lbadeker

Hi Evanna,
I just wanted to share that my BF did the treatment. He finished a year ago or so. It was hard. He did get very sick. He had the difficult to treat genotype. I think 3. Anyway, I guess I just wanted to share some hope. It worked for him. He is "cured". Without it he would have died of hepatitis. I am so grateful today that he did it. It was so scary. Good luck. My thoughts are with you both.

Thanks for that Ibadeker. It is encouraging to hear success stories. My husband is genotype 1 i believe. From what i have read this is also difficult one to treat. So your news of your boyfriend's clearance gives hope that all this will have a purpose.

[Evanna]

Originally Posted by Buzz Kilowatt

More info:

A company called Collgard plans to do a phase 1 study on a anti-scarring agent on Hep C patients in Bari, Italy beginning this year.

Again, it's cutting-edge stuff, so I wouldn't expect it to be publicized at this point.

Nonetheless, perhaps your doc can try to contat them to see if your husband is a candidate for the clinical trial.

Worth a shot, I suppose.

Buzz

Thanks for the info Buzz.

[woops]

Hello Evanna
You obviously have lots of info and understanding of the virus...................... and what a smashing result - to have cleared the virus by yourself!!
I am going to tell my g/f - as she needs all the moral support she can get just now! Horrible illness - and even nastier treatment?
Hopefully your husband will get thro this year - and come out the other end - just fine.
Look forward to following your news!!
woops

[Evanna]

Cheers Woops. I am loving your avatar.

[angelgirl]

Oh Evanna,,

Know that you and your husband will be in my prayers. I am sorry that you are having to go through all of this. It's difficult, when you get your life on track, and you get socked wiht something like this. It's also tough to watch, as you said, our strong husbands get sick, and weak, and seem so frail. It's scary.
You have every right to be afraid. It is scary. It's scary to put our lives into the hands of the medical community.

But have faith.. I do believe that they know what they are doing. Do you know how many people this hospital has given this treatment to? Has it been alot? Did they give you a sucess rate? Because after reading lbadekers post to you, that was really, really hopeful Evanna.. If this treamtent can cure your husband, if that is the case, then these months will be worth while, if they can tell you that this WILL cure him..

We love ya Evanna.. Please, just keep on posting.. Get all the crap out of your head. Don't you ever worry that you are complaining, or anything liek that. You do not need to be strong all the time. That's what we are here for. You have helped me so many times. Please,, keep posting, and keep getting it all out. We wil listen. We are here for you..

Prayers to you and your husband..
Love ya
Becky

[Evanna]

Becky, thank you so much! Your post left me feeling all weepy, but in a good way if that makes sense.

You hit the nail on the head it is scary. It is so damn scary on every level. My husband has this quiet, dependable unchanging kind of strength that i rarely acknowledge. And he has seemed so fragile this week that i could weep to see it. Today he seems slightly stronger but still is weaker than normal and rather clammy. Then on Wednesday he has to do that interferon shot again and over it will start.

This would be much easier if i could find it in me to believe that the medical community know what they are doing. But i really struggle with that one. I am pretty convinced that i am the only person who knows what is best for me and my family most of the time. However, my husband has rightly made his own decisions. He has chosen for all intents and purposes to voluntarily and temporarily disable himself each week. I guess that to hold his head above water he will need to believe this is all for a reason. But i feel like i have to try and find some faith in the treatment from somewhere or else i will be undermining his choices and driving myself insane.

My closest friend is also undergoing treatment for cancer and since the hospital got their hands on her she looks ten times worst and very old. I am not sure if this is a result of active progression of cancer or their intervention. Again i have to try to believe that they know what they are doing and this will be for the best in the long run. But i dont. Try as i will i dont believe it.

It is also hard with our son. He is 13 now and has been through so much with addicts for parents. The Hep C is a consequence of addiction and so neither of us want our sons life to be affected by this treatment. However the reality is that this will affect his life. He is asking for things that Dad simply cant give right now. He just isnt physically able to go cross country mountain biking with him or play squash etc right now. We have had to explain to him a bit because if he were to come across the paraphanelia surrounding the treatment without explanation he might think that we had gone back to using which would be dreadful. But he doesnt fully understand. I dont think kids do understand their parents being ill for more than half hour and i dont think he should have to understand. Still it remains undeniable that dad cannot continue to do the things with him that he usually would.

I liked what you said about asking questions of the hospital. So far i have not accompanied my husband to his appointments. Again this has been his choice because he reckoned i would be unable to butt out and not interfere. He was right too! But yesterday he said that he thinks it is important to both of us that i come to future appointments if i wish to. So i willl go and find a way to ask my questions without being pushy and taking over. That was really helpful Becky. If i heard what the hospital had to say direct then maybe i would be persuaded by their reasoning. I am 'just maybe' prepared to acknowledge that whilst i am terribly smart i am not a 'perhaps' not a medical expert.

Thanks for allowing me a space to woffle on Becky. I kind of needed someone to give me permission to do that if that makes any sense.