How do I help my bf

[Midnightskiss]

My bf was diagnosed Hepatitis c positive few weeks ago. He is devasted and all this has been very hard on him. Tomorrow he is having a liver biopsy. I've been sick with flu and a cold for a week so I can't go to his house to visit (he came to mine for a little while yesterday, bc "he missed so much" no hugging, not kissing) he looked a little down and pale. This morning we have been texting and I can feel he is very scared, he tells me he wants me near, but I'm not 100% ok yet, he says he is not eating bc I'm not there with him, and that worries me. He has no one else his only son lives in another city and he hasn't tell him about this. I tell him he needs to be positive and I'm here for him, but I don't know what else to do or say. He is planning on taking the treatment which is 48 weeks bc he is type 1 That was another thing that made him very sad.
How do I help him?

[frijole]

Good to see you here.  It is kind of weird with the standard being either 24 or 28 weeks - 48 at the most.  If you go to my home page there are spread sheets for most of the members who started in 2011.  Besides those there are two quick reference sheets for the two protease inhibitors on the market - Incevik and Victrelis.   These PIs are still so new that there is not any adaption to the protocol.  The stopping rules rule.  If you have VL over 1000 at week 4 or 12 with Incevik you stop.  If you have VL over 100 at week 12 with Vic you stop.  End of story.
frijole

[nygirl7]

I havent bee around much either but had to say hello to my old pal Cuteus too!  :)

[can-do-man]

Always good to see you around here, and yes I am free of Hep c. I was in the last boceprevir trial........ Hope all is well with you.

[cuteus]

thank you for the update and so nice to see you again!! I heard you were out of the hep c woods? I think frijole told me and I was so happy. Is it true?

[can-do-man]

Hi cuteus, nice seeing your name again. And yes eRVR still plays a major role as does other things like being cirrhotic. With telapervir if one is UND at week 4 and 12 and not cirrhotic then it's 24 weeks, anything less it's 48 weeks. If I remember right about 60% become und at week 4 so 48 weeks is still common.

With Boceprevir it's either 28, 36 or 48 weeks depending on response, past tx history and Cirrhosis

[cuteus]

the standard for G1 is 24 weeks? regardless of whether EVR is attained?  I was impressed by that statement and searched the web for the new standard and could not find that all G1 with the three meds get 24 wks.  It looks like it depends on the EVR still. If someone can link to where this new standard is listed, it would be helpful.  
It does seem that if EVR is not attained or RVR, the treatment will be extended. Pretty much as it was 10 years ago, with dual therapy.  It is nice that more choices are available today!

[rk2761]

I was about 6 weeks into a relationship when I found out I had HepC. That was about two years ago - we are still together and I just came off 8 months of treatment.

Before I was on treatment, my boyfriend was helpful by listening to me and letting me talk. In fact, he encouraged me to talk. He wanted to know what I was thinking and feeling. But he also understood when I didn't say much at all.

Things he did that were helpful while I was on treatment - he listened to me, he cooked for me, he held me while I slept, he gave me massages by candlelight, he bought things I could eat and avoided things I couldn't (like spicy foods), he made me laugh, he understood when I said I was too tired to go out. He was pretty amazing. He also continued on with his very active life - which was good for me because I never felt like he was putting his life on hold to look after me. I wouldn't have liked that.  

What can you do? Well everyone is different. For the most part on treatment, I took care of myself. A few times I asked my boyfriend to mow the lawn, but I cleaned house and shopped for groceries. (In hindsight maybe I should have asked for more help. On more than one occasion I left grocery carts mid-aisle and walked out of the store. Either I was too tired or just couldn't stand being around people.)

Take your cues from him. Ask what you can do. Ask him what he needs. I found it helpful to have someone with me at early information sessions, but I didn't take my boyfriend I took a girlfriend. Your guy might want you to go. Everyone is different.

So listen, encourage him to talk, understand when he doesn't, give him help when he asks (when its within reason.)
  
rk

[rambleon40]

The fear around this disease is overblown and the rote, automatic "You've got Hep  C now let's you give interferon combo therapy" mindset is near madness.  

Midnightskiss you or your boyfriend will do whatever, but I so urge you to take a deep breath, lear more about options, and slow down.  

Very knowledgeable, cutting edge Hep C physicians are putting out there that not treating is an utterly rational  option, especially for younger folks, given the potential severity of side effects.  

If you are asking a doctor about side effects and they say, "Oh, flu and fatigue," then run.  You go find a doctor who appreciates the dangers of side effects, who has a protocol for stopping therapy other than what a pharmaceutical rep has told them, and who has time to pay attention.

[pooh55811]

I have given you some information below and it may be helpful to both of you.

When I was looking for a Hepatologist (after I discovered that my treating GI was not exactly competent in assessing and handing side effects), I looked on the internet and looked at Hepatologists from the nearest large metropolitan area. Because Hepatologists are Gastroenterologists with a special expertise in Hepatology, many of them are listed under Gastroenterologists. You can tell if they specialize in Hepatology because there will be something by their names that says specializing in Hepatology or specializing in liver disease. I first looked at doctors who were affiliated with the University Hospital. Because I was in a hurry to transfer to a new doctor (my hemoglobin was dropping) I went with a doctor who was not a University doctor (employed with the University), but he was affiliated with the University. I was able to see him in a month whereas I would have had to wait 2 months to see the University MD. (My old team was planning to cut my Riba dose in half and I did not want to cut the dose that drastically so I needed to find a doc who would give me Procrit instead of drastically cutting my Riba dose.) Anyway, my new Hepatologist turned out to be very knowledgeable and experienced and he was great. So I guess if I were you I would check for Hepatologists who are University affiliated or see if there is one on the list below.

Finding the best doctor for Hep C:

Here is a link to a thread that OrphanedHawk started on "Who is your good doctor?" People have listed their good doctors.

http://www.medhelp.org/posts/Hepatitis-C/Who-is-your-good-doctor-/show/1715783


Also, if you tell us where you or your boyfriend live, general area, then someone may have a doctor in that area whom they may recommend.


Also, OH listed some questions to ask the doctor when you see him/her:

It is always preferable to have a hepatologist, a liver specialist and not simply a GI to help you with treatment. A GP is not trained in liver issues and should be the one to refer you to the specialist.

Questions for the doctor:

How experienced are you in dealing with Hep C ?
Do I need a biopsy before treatment?
How often will I be doing labs during treatment?
What is your protocol for dealing with low wbc or rbc?
What about other side effects?
How often will I be seeing you during treatment?
Who do I contact in an emergency ?
Will I be able to have copies of all my labs and tests ?
Will you be available via phone or email to answer my questions ?

Also this post:

http://www.medhelp.org/posts/Hepatitis-C/Going-back-in/show/1785793#post_8220897

[Midnightskiss]

flcyclist, I'll try to go with him to his Dr's appts. Today I'm here with him for his biopsy. He seems calm and relax. He is having the procedure anytime now.

[Midnightskiss]

ActingBrandNew and Ceanothus thank you for your advices. You tell me to find the best doctor. can you or anyone tell me how do we do that? how to find the best doctors or specialist for Hepatitis c ?

[flcyclist]

If your bf doesn't mind and you are available, it might be good to go with him to his appts, especially when he receives the results of the biopsy and discusses trt options.  This information can be a bit overwhelming and a lot to consume and remember for one person.  Take a list of questions so you don't forget to ask anything with the doc present.  Sometimes not saying anything when alone is better than nervous chatter.  Just being there for your bf will mean a lot.

[Midnightskiss]

flcyclist thank you for welcoming me to this forum, which I'm happy I found.
After reading some threads here and your advices I realized my bf and I don't know anything about Hepatitis c and its treatment and that there's so much to learn.
I wrongly said my bf is planning to do the treatment he told me it will be the 48 weeks, I'm sure his doctor was just giving him info about what can happen, bc he is not scheduled yet and I know his Doc is waiting for more testing and the biopsy results.
And yes he is very anxious and scared. unfortunately I don't know what to help him emotionally or what to never say :-/

[ceanothus]

Welcome to the forum! This is a great place for both info and support! We are pretty much all Hepatitis C patients, either current or former, but there are a number of active members who know more about this stuff than do 99% of the doctors out there, so you can get great info here. Occasionally a less well informed newbie will give an incorrect answer, but they are always corrected pretty quickly by others when that does happen. HCV (Hepatitis C) is just recently being transformed from a lifelong illness to one that is really treatable. I was infected with genotype 1a back around 1984. I underwent treatment in 1990 and failed. In 2004 I was diagnosed with cirrhosis, and I treated again from 2005-2006, but failed again. In fall of 2011 I started my third treatment, this time with a new protease inhibitor added to the interferon and ribavirin. I finished in Sept 2012 and so far the virus is still UND (undetectable). If it stays that way till late March I will be considered cured! For your boyfriend the odds are even much better. If he hasn't developed very much liver damage then treatments are usually only 24 weeks instead of 48, and usually the side effects are not as severe either. If the biopsy shows really minimal damage then he can consider waiting for the approval of the next generation of treatment drugs, which promise even better cure rates with far less side effects. The number one thing to do early on is to make sure he has a very good doctor. A hepatologist is preferred, but he needs at least a gastroenterologist who specializes in liver disease. Believe me, we have heard from many people who learned halfway through treatment that their doctor didn't know much about HCV and was totally screwing up their chances of success. Make sure his doctor is a good one BEFORE starting tx (treatment). Best wishes for both of you!

[Midnightskiss]

Joe congratulations for getting rid of the virus that gives me hope that my bf can also be cure, he is very scared and I forgot to mention he is a pessimist, but I do want to support him in a anyway possible

[ActingBrandNew]

"How do I help him all these 48 weeks"

Well your off to a good start bu joining this forum. I think you will adjust and learn how best you can help him once he starts treatment. Just love him.

One piece of advice I will give you that I learned from this forum is to find a qualified doctor. Not a doctor that says he knows how to treat the virus but one that is currently treating multiple patients with it. A doctor who is up to date with all the information. Ask questions. Ask if he becomes Anemic or his ANC drops, will he use rescue meds. You don't want a doctor that's afraid when things get a little bumpy...because it will. Just research the doctor well.

[flcyclist]

Welcome to the forum.  Your bf sounds very anxious and concerned about what treatment will bring, which is what we all go through.  This is very normal and there's no way to know whether he will breeze through trt or have a rough time.   The unknown can be very scarey.

Before he jumps the gun, he needs to find out the results of the liver biopsy.  Depending on the results, if no damage to the liver at all, he may want to consider waiting for a few years for the new all oral (no interferon) trt.  He needs to discuss this in detail with his doctor.  Hopefully the doc is well qualified and will give good guidance.  

I'm surprised to hear he is scheduled for 48 wk trt.  Even with Genotype 1, the standard is 24 wks with one of the PI's (Incivek or Victrelis).  Is there a reason the doctor is not considering one of the PI's, or is there another reason for the longer trt?  

I was also a genotype 1a and treated for 48 wks, but with only Int/Riba, just prior to the approval of the PI's.  I am now SVR (cured), so just because its the hardest to treat, don't make any assumptions.  Your bf will need your support if he chooses to trt soon since the meds are challenging both mentally and physically.  But he can do it, like many of us have.  Good luck to both of you and read up on HCV.  The more you know the less frightening it is.  

[joemc34606]

Sorry to here about your boyfriend, but it's not the end of the world, I was diagnosed in 2007 and went through one year of treatment with interferon and ribavirin. I was clear the whole time I was on the drugs but it came back within 3 months. In 2011 I went on a 24 weeks treatment of interferon, ribavirin and incevik, I have been cured for over a year now and my life is back to normal. Tell him to read a lot about it and get familiar with hepatitis, long term without treatment can be a killer but they have come a long way in treatment. The treatment is a little rough but everyone takes the side effects differently. I never missed a day of work and continued working out at the gym for about half of the treatment. Also tell him not to dwell on the past and how you got it but think about the future and how your gonna get rid of it. Good luck if you have any questions everyone on this site is awesome and willing to help. Joe

[Midnightskiss]

How do I help him all these 48 weeks?