Hep C Discussion Forum

Hello to all!

I am finally starting to get my energy back.  It will be four month post tx beginning of Feb.  I have had 2 pcr's and both were still undetected I guess the really important one will be in April or is it a year? Fingers shall remain crossed! I continued to lose weight after tx until about a week ago now it seems to have leveled out. 

I do notice I am still rather spacey at times but my backaches, headaches, fatigue and generally crappy feeling have pretty much gone.  Much to the delight of my family.  I know towards the end of tx I was unbearable to be around luckily my husband was a trooper and was understanding.

Well it is always nice to get back on here and catch up.  I wish everyone the best without all the support here things would have been much worse going through this tx.

Oh and my hair has finally slowed down from falling out however it seems to me that all my new growth is gray!!!  Ug I hardly had any gray before tx.  However if tx works I feel that is a small price to pay.

Hugs to all,

Mary

Welcome Becca,

Great to have you here.

Hugs Greg

Just a big hello to you Post tx'ers.  I'll be joining your ranks next week!  I just want to say how much I appreciate the post on how you're recovering after tx. 

David, I really like that you posted the time line of how you have been feeling.  It gives me something realistic and comprehensive to aspire to.  We all know that we will recover at different rates, and wonder about lingering sx. Like, when is my hair going to start coming back in... When can I ride my bicycle....When will I stop forgetting peoples names at work...Will I ever be "normal" again......

Anyway, thanks to all of you for your honest post about how you have been feeling.....Jill, Aaron, Wander, Randy, Morgan, Greg.......

Hello everyone i am new to this forum,a medical graduate and on 11 shots yet,,i joined this forum as i am alone here so plz give me advise.

i have to ask you a question that due  to tx i m confused,fatigued and on antidepressants but still trying to manage SE...i had my exam that was before my tx but result came when i was on ist month of tx(WHICH I FAILED)....now i was thinking whether i will be able to handle three more months to go and get good score if i will appear my exam in may (april will be last month of my tx).will it be a good choice.

if i will not write my exam in april i will have option in fall where i will be lil healthy and can do well in exams...exams are really tough for residency position or should i completely relax during tx and exams once tx finishes...

...like will i be having energy to do that?or how about body overall condition..does it gets worse or same as im having...still my blood works are so far ok...but mildly down...

....this question can be answered by who is either on smae month of my tx or who have done tx....plz i need ur advise as i am already mentally no organized...

Crazy as a loon!! I honestly forgot what I was like before tx. Its difficult finding the medium..

Thanks Randy! I really enjoyed your reading your posts and got a lot of support through reading them and seeing you progress through treatment.

I'm glad you're doing well . . . . I actually gained weight on treatment . . . go figure! Probably from being better hydrated . . . . Yeah, that must be it!

Good to hear from you too!

Regards,

David

I did the 24 week triple therapy (Telaprevir); finished the third week of October.

I started feeling better physically within a few weeks, the shortness of breath was gone, fatigue left pretty quickly. Within a month I was feeling markedly better physically.

Second month continued to feel better physically, but still very moody and "flat" emotionally. I had some days of feeling almost normal emotionally (what an eye-opener, when I had a "normal" day, it made me realize how low the treatment had gotten me). Was still feeling mentally "foggy", and still had little patience, nor any interest in email, forums, social stuff. I did notice my hair seemed to have stopped thinning during this time.

Now, a few weeks away from the 3 month-mark, I feel wonderful physically. My workouts are even stronger than before treatment. Emotionally, I feel MUCH better, and the mental fog has mostly left, although I still have some short-term memory lapses (usually with names), and they are fewer and further in between. I feel much happier, and feel more inclined to socialize. Hair seems to be back to normal.

I think after a few more weeks (which will be 3 months total) if this continues, I should feel pretty much back to normal emotionally and mentally.

To summarize my experience on treatment- I spent the months before treatment eating only real food, no junk. I exercised regularly (cardio, yoga, body-weight exercises) I continued to exercise as much as possible during treatment, and I think it really helped. The treatment was easier physically than I expected, but harder mentally and emotionally; in fact, that was the most difficult part (I did not take any anti-anxiety meds or anti-depressants, perhaps that was a mistake).

In any event, things are very nearly normal now, and I am very happy I did the treatment, and am thankful for the support I found here in this forum.

Best to All . . . Keep moving forward, the last 12 weeks seemed to go by much faster than the first 12, and when you get off the Telaprevir, most fo the unpleasant bowel stuff is over, and you may become less anemic (your Hemoglobin may go up a point or two).  Hang in there, and best of luck!

Regards,

David

Hi! I'm not in treatment just yet, but will be in early November. I just wanted to thank all of you for sharing your experiences us. I'm very fatigued all the time and get sick for months multiple times a year. I have to push very hard to get through a whole work day. So hearing all these positive things about how your already feeling better then you did before you started treatment is very exciting for me. I wish I could start now, but I have to save up as much money as I can since I work with photographer's shooting architectural and "fancy" houses, I wont be able to work if I am uneasy or unstable at all. Breaking anything in any of those houses would cost more then i've made in my life. Soooo, all in all thank you all for contributing. I'm quite excited to get on my way to feeling better finally! And you all are here to help give hope to one another. Which is great. Thanks all of you.

- Derek

Hi there VinegarJoe, well done for still being UND, and it`s good to hear you are doing well 2 yrs post tx. 

I finished tx 6 mnths ago and am feeling pretty good too, have to wait a few more weeks though for my next appt and blood test.  I know what you mean about the age thing, I`m nearly 62 and have a few aches and pains that I think must be normal for my age, also memory and concentration probs.  Feeling much better than I was before tx though.

Keep well, love from Jill xxx 

Thanks Jill, I suppose part of the appetitte thing has to do with expending more energy as we get better too - burning more calories. But yes, I'll try to keep myself in check for a while and allow my body to recouporate from the ordeal. Good advice. I am planning to go back up to my camp this weekend but no working in the plans. Just going to relax... and refill the humming bird feeder. I'll try to get a pic.

Hi Morgan, actually I have noticed a bit of a hack here and there. I haven't smoked in over four years but just in the last week I've had a cough like when I did smoke. Usually in morn and sometimes elsewhere during the day. Sometimes cough up a little flem too. But nothing unbearable so far and hardly worth the mention if you hadn't asked. With me it could just be sleeping in the woods for a week. I'll keep an eye on it and let you know if it gets worse. I had quite a cough and sore throat a couple months into tx and had to go on antibiotics. Glad your doc is on top of this for you and hopefully he'll have it cleared up in short order. Hope you feel better soon and please let us know how it's going.

Take care,
Randy

Hello randy nice to see u posting here,at the mo with me i have this cough cant get rid,being to drs with it.Hes trying everything with me,had a chess xray all clear.Would like to know has any other post tx have it,i dont smoke i got it towarts end of treatment left me came back 2 months later im 3 months post tx now. Its driving me mad im taking lots for it but still here im getting a bit worried at the stage,hope all is well lots of love ,

                                                                                    morgan

Hi Morgan, it`s great to hear from you.    I know what you mean, we imagine once tx is over that`s going to be the end of it, but unfortunately it does take a while for our bodies (and minds) to recover.  But once you start recovering it all seems worthwhile again, doesn`t it?

Lovely to hear that you`re feeling so good now, I know what you mean about age!   I hope you continue to get stronger and have a happy and healthy life. 

All the best to you, and thanks again for letting us all know how it`s going.  Good luck with your next PCR, and with SVR.  Love from Jill xxx

Hi Gail,

Wishing you all the best for Thursday hope it all goes well.

Cheers,

Greg

Jill, it was TWO injections- one at the base of the thumb and the other at the base of the middle finger, injected into the palm side.

It took everything for me not to scream or punch her out with my other hand! My husband was holding my arm down and I wanted to kill him, too! And dang, I messed up the dates, the next traumatic procedure will be on Thursday. Everyone pray I don't go postal in the radiology dept. and kill all the employees. LOL

Cloudguard: SoC is 6mo post tx PCR. Don't go get one, just get on with life and get that PCR in the 6th mo. If you are still SVR, you are considered CLEARED.

As far as my post tx experience? It's been one thing after another- but I tend not to post about it, due to the fact that even though I cleared and am still SVR almost 4 years now and don't catch much in the way of colds or viruses that permeate our lives on this planet- I've got degenerating arthritis and it's not fun.

HCV and treatment can exacerbate underlying conditions. It is common for people to come out of tx without the virus, but that virus does major damage, especially for those of us that had it for 30+ years.

So, I deal with it, see specialists when it is required and try and keep coping with stupid problems that keep arising.

I've been telling my doctor and others for the last year that it felt like my wrist was broken, have had it in a brace for months....... then when my thumb developed "trigger finger", my wrist swelled up and never went back down, I finally saw a hand surgeon.

My wrist is broken (well, duh) and don't ask me how that happened! But there is a chip floating around by the wrist bone, wreaking havoc and a ton of pain.

Tomorrow...... I get to go back for a MRI and they are going to inject dye into the wrist to see how bad the cartilidge is destroyed before she opens the wrist up to get that chip out. I might be in for trigger releases on at least the thumb and middle finger.

She did inject my hand (OMG, IT WAS TORTURE!!!!) with steroids and lidocaine to get the inflammation down, but didn't help the swelling on that wrist. That was extremely painful (the injections) and I left in a state of shock!  Oh man, she will NOT do that again!

Great idea for a thread , Jill, and good to hear that in general we are all feeling so much better than just a short time ago on tx. I am really happy to hear that you are off to Borneo, Dragonfly! I thought you would be going somewhere exotic, though I can't imagine what animals you will find to cuddle there. I fancy a trip down the Nile, or riding a donkey along part of the ancient pilgrim route to Compostella in Spain, I often see people doing this as the route passes through my village. Just a fantasy at the moment, but I might manage 3 days in Paris in the Louvre Museum, somewhere I've never been inside, but always wanted to. If I get time I will visit my favorite cemetery, Pere Lachaise, and say hello to Oscar Wilde and Jim Morrison as well. My thoughts are with all those awaiting their 3 and 6 month post-tx tests, and with Dee and Dragonfly for the hospital appointments coming up soon.

Love Annie xxxxx

Hey how is everyone doing? Hope all is well with everyone sorry havent been around much at all as of late will try and keep in touch more have a good one... And a special HI to my treatment twin :) Jill I hope all is well in your life and that you are coming to a speedy recovery... It all kinda seems so strange to me now that I'm done with treatment time seems to be flying by...

Hi folks, good to hear from you...

Yes thanks Randy I was a bit sore for a couple of days but actually I found it really funny - I was sitting on the ground laughing my head off, for some reason.    Strangely enough, a lot of stupid things are making me laugh lately, it`s either relief to be recovering or I`m losing the plot, lol. 

Thank you Cloudguard, that`s so kind.  Glad you`re improving. This tx and recovery seems to be all about waiting and having patience.  It brings out the worst in us but also shows us our strengths.

Good luck James and Cloud, and all post tx`ers, hope you continue to get stronger.  Take care with your balance probs.

All the very best to you, love, Jill xxx

Hi post tx`ers how are you all doing?  I hope everyone is continuing to improve.

A quick update on my progress - I`m getting more energy so am able to do more and I can feel my body getting stronger which is just such a fantastic thing.  I`m in the middle of spring cleaning my whole flat and changing things round, I feel inspired!  At some point during tx I had to let a lot of things go and now I`m really catching up, as well as getting out and about again.  And my phone is plugged in all the time now, lol.

I`m almost off the AD`s - I waited until the time felt right.  I`m only on 10mg every other day now and should stop them completey by next week.

Still getting days when I`m very tired but I seem to be bouncing back more quickly.  I`m just so pleased I did this tx and wish I`d done it years ago... but this is now and that was then. 

Looking forward to hearing your news folks. Must go, I`ve got cupboards to sort out..... 

Love an hugs to you all, Jill xxx

.

Hi Everyody,

     This is a great idea for a thread, Jill!  I needed all the hope for the future that I could get while I was on tx.  I'm at about eight weeks post-tx and I'm feeling much better since the itching has mostly gone away.  I'm still on a low dose of antihistimines, but compared to how it was I'm doing fine.  My blood numbers from the test last week show that everything except hematocrit is back in the normal range and it is almost there, (37.5%).

     I do go through some of that mental fog, but my mind seems to be improving each day so I assume it will be back to normal in a few months.  I'm not quite sure where normal is these days, but I know it's better than where it was at.

     I'm still building my endurance, but as it gets warmer I naturally get out and do things more.  Because of my age, there were times during tx that I would wonder if I would actually get back to something close to good health, but it seems as if I am getting there.

     I'm glad to hear that we are all getting our lives back and that there is hope after tx.  I do have a few days that are not as good, but those just remind me how much better I feel on the good days.

    You are all in my thoughts.  Take care, ty 

"My mind not only wanders, sometimes it leaves completely."

Go guys

hi everyone,

I'm feeling much better but tired because of the Hep but am able to run 3 times a week.  Iwalk into walk (5k) nearly every day and use the gym a few times a week.  I'm looking forward to a holiday in Borneo in August and generaly enjoying life.  Waiting to see my consultant in July for an update on what comes next.  Hope all are well.

Dragonfly x