Hubby finally finished treatment!

[bella]

Hello friends -

My hubby was taken off treatment 2 weeks early, so he had 22 weeks instead of 24.  His doctor seemed really conflicted about whether to have him finish the last 2 weeks, but his liver was starting to fail and he just couldn't take any more.  On a positive note, he tested below detectable levels at week 9 and again 2 weeks after stopping treatment.  He goes back for the three month test in mid-August.  (We're keeping our fingers crossed.)

My question is about all the pain he is still having in his side.  He's had 2 ultrasounds, and no adverse findings.  We are wondering what could be causing this - do you know of anyone with similar symptoms?  At this point we are looking for ideas we can talk to his Dr. about.

His Dr. is also putting him on the transplant list.  Any advice anyone can offer on this is welcome too.

It has been a rough road, but somehow we've made it this far.  I didn't really understand how hard this treatment is until we were in the middle of it.  But I don't want to discourage anyone from seeking treatment.  It has been so worth it to stop the ongoing damage Hep C does.  Like most others who come to this site, I want to encourage people to get tested while they are still healthy.  It is so worth it to avoid all the complications from progressive liver damage if you can.  I also think it is worthwhile to get treatment while still relatively healthy.  Also, for both the patient and caregiver it is essential to find a support network like the one here.  As the caregiver, I can tell you there were times I was just terrified of what the disease and the treatment were doing.  It means a lot to have someplace to go where prople understand and want to help.

Finally, I wanted to say "THANK YOU" to the nice people who provided advice on this site - your kindness made my life easier during treatment.

Bella

[Ann]

Hi Bella!

Fingers, toes, arms, legs and eyes all crossed here! Good luck for an on-going undetectable viral load.

I used to get pains in my right side before and during treatment. Sometimes it went right down into my pelvic region and I'm told this is called referred pain (sometimes aka reflected pain), where you have pain in a part of your body that is actually being caused elsewhere.

This should subside soon, but re-reading your past posts, your husband has a fair degree of cirrhosis, so it may not (sorry). Has he spoken to his doctor about it? It may not have anything to do with his liver directly, so get it checked out. For example, it could be caused by his gall-bladder, given his heartburn and nausea. Get it checked out! I hope it's nothing serious and goes away soon.

While I don't have any personal experience with liver transplant, I know that many people have this done and lead healthy lives afterwards. I hope you get the call soon and that it all goes well. Find out where it will be done - chances are the hospital will have some sort of support service for transplant patients that you can access to find out more. Good luck.

You're right that the treatment isn't easy, but yes, it is very worth it and people should not be afraid to do it. It doesn't last forever and the results are worth it, take it from one who has been there, done that and is now hep C free for just over ten years now. I had my first undetectable viral load result in June 2002 and I'm still undetectable.

Hang in there hun. Give your hubby a big congratulatory hug from me and let him know I'm rooting for him (for both of you). Please keep us posted on the pain as well as the transplant.

Hugs,
Ann
xxx

[Monkey]

Congratulations on the ongoing free viral load test................I have 3 weeks to go.  Did your husband get exhausted alot?   I am so very, very tired all the time, I have trouble breathing when I go up stairs, I have also found my muscle mass is depleting.................is this normal??

[Ann]

Hi Monkey.

I lost a LOT of weight during the treatment, including muscle mass. Yes, it's normal and with exercise and eating right, you should re-gain what you've lost when the treatment is over.

Being tired and having trouble breathing (like you can never get enough oxygen, right? Breathlessness?) is usually caused by anemia during treatment and it is usually caused by the Ribavirin.

Ribavirin can cause problems with your hemoglobin levels (low hemoglobin is called anemia). Hemoglobin is what carries oxygen around the body to the cells, so if you don't have enough hemoglobin doing its job, your body feels (and is) starved of oxygen.

This makes your brain tell your body to breath harder, which doesn't do the trick, so you feel breathless even though you're breathing harder. Breathing harder actually makes it worse because as you're making your lungs and diaphragm work harder, the cells that make up those organs up need more oxygen, so it becomes a viscous circle.

I did the treatment for a total of 52 weeks. (A whole year - April to April. There are actually 13 four week months in a year, but for treatment purposes a year is normally considered 48 weeks. My doctor had me go the extra four weeks "to make sure", as I am [was] coinfected with hiv.)

During the last 4-6 weeks I became extremely breathless. Just getting up out of a chair and walking a few steps across the room was very difficult and left me gasping. Going up stairs took forever. The verdict was that I was dangerously anemic. I dropped one of the five Ribavirin tablets I was taking a day and within a few days of the reduced dose, I felt a lot better. I could at least walk up the stairs without pausing every two steps.

About the only thing you can do about anemia cause by Ribavirin - aside from taking a lower dose - is to move slowly and keep your physical actions to a minimum. Don't over-do it, take it easy. Don't stand up quickly - that can make you get dizzy and fall over or pass out temporarily.

It's unclear from what you wrote whether "I have 3 weeks to go" means that you have three weeks until your first viral load test, or whether you have three weeks to go until you finish the treatment.

If you mean three weeks until your VL test, then talk to your doctor sooner rather than later about having your hemoglobin levels checked to see how anemic you are. You may need a lower daily dose of Ribavirin.

If you mean three weeks until the end of treatment, you can either wait it out or talk to your doctor about being checked for anemia, depending on just how bad and breathless you feel.

Either way, good luck!

Ann

[Monkey]

Hi Ann!!   Yes, I meant 3 weeks to go until the end of treatment (24 weeks).  I am taking eprex every second week and 4 ribavirin a day, along with the interferon once a week.  (I'm Cathy by the way).  I just needed to know about the muscle mass and "old peoples skin" I'm developing. ......such good news that things will go back to relatively normal after treatment ends (tomorrow--Monday marks 2 weeks to go)  My viral load test is showing NO DETECTABLE VIRUS and has been that way since February..............stupid question..................even if the viral load test shows zero six months down the road am I still considered to have Hep C??

[bella]

Hi Monkey -

Congratulations on having come so far with treatment!  You are almost there!  My hubby lost an incredible amount of weight and a lot of it was muscle.  He has started to recover some of it, but given his new healthy eating habits its taking him some effort to gain weight.  His energy is also returning, but during treatment he would just lay on the couch or the bed and only get up for the bathroom.  He was so exhausted all the time and had no energy at all.  He was up and about this weekend and has more energy than I do!  During treatment and especially at the end, his skin started to look like he was a really old man.  But that is reversing too.

Hi doctor gave him some pain pills for the severe pains he was having and they seem to do the trick.  He has stopped complaining about the pain.  I wish we knew for sure what was causing it, but tests don't point to any particular cause.

Monkey, hang in there - you are soooo close to being done!  Best of luck to you, and wishes for sustained good results!

Hugs!

Bella

[Ann]

Cathy - only two more weeks! That's fantastic. I remember getting to that point, it's like seeing the light at the end of a very dark tunnel.

Your question isn't a stupid one, because it's a confusing subject.

While you will always test hep C antibody positive, so long as your VL is undetectable you will NOT be considered to have hep C. Scientists and doctors don't usually talk in terms of being cured, they call it a "sustained response". But for you and I, well, we usually call it a cure if you're still undetectable past six months to a year.

For most people, if you're still undetectable six months after treatment that means you're ok and it's not going to come back. An unlucky few can still have what they call a "viral rebound" after six months. For this reason, it's important to have a hep C viral load test done once a year for at least few years after. Chances are very good that if you don't experience viral rebound in the first six months post-treatment, it isn't going to happen.

One thing you should know - despite no longer having hep C, you will not be able to donate blood or organs. This is to guard against someone unknowingly having a viral rebound.

About the "old people's skin" thing. It's caused by the dehydrating effects of the treatment. Drinking plenty of water and using a good moisturiser (religiously) will do wonders in getting your skin back in shape.

The side-effects do generally reverse themselves and it starts pretty quickly once you've stopped treatment. I remember feeling a LOT better within the first couple weeks.

One thing that never really completely reversed itself for me was hair loss. Within about three weeks after the end, my hair started growing again. (I never lost clumps, but I certainly did lose a lot of hair all over - a thinning effect.) When my hair started growing again, I had loads of really short hairs sticking up all over my head for a few weeks until they got longer and laid down against my head. It looked pretty silly, I can tell you. It didn't bother me, I was just glad it was growing again. However, it never came back as thick as it used to be. Bummer, but I can live with it if it means I no longer have hep C.

Bella, I'm glad your hubby is feeling better!  A protein-rich diet and plenty of exercise will help him regain his muscle mass. He should ease into the exercising, don't let him over-do it until he's regained his strength and stamina.

Onwards and upwards!

Hugs,
Ann