How to cope with post-tx life and hurdles. What is working, what is not?

[DoubleDose]

Maybe a more productive way to look at post-tx issues and how we might best be able to return to a healthy, symptom-free life is this: It might be a good idea to find out what our forum members have been doing to overcome any post-tx problems they have encountered.  Many of us have described problems with depression, pain, mental fogginess, lack of motivation, fatigue, neuropathy, sun sensitivity, rashes, etc. after ending therapy.

Rather than try to assign a specific cause to these problems, which always seems to provoke an uproar, let's just discuss how we might overcome these problems, and begin to regain our health.

If any of our members have experiences that they wish to relate, regarding their post-tx challenges, and how they have coped, or are coping, this would be a great opportunity to share those insights.

This also might provide an opportunity to see a cross section of the forum, and understand how they are feeling and functioning after completing therapy.  Please let us know whether you are SVR, or still have the virus.

Personally, I am trying to avoid lots of direct sun exposure (I now get a Lupus-like reaction).  I use Restasis for the dry and inflamed eyes, and it seems to be working after almost one year of use.  I try to get extra sleep each day, and find I feel somewhat more energetic most of those days.

I still do fall into unexplained bouts of lethargy, not really depression, but just lack of motivation.  I do not feel the drive that I did before tx, or during tx, and often continue to feel spacey.  

Comments welcomed!

DoubleDose

[new-sojourn]

4 plus yrs post tx. my liver quit, I was end stage when I had a massive abominal/esophageal bleed due to varicies.  That was 9-12-01.  dx w/hep c 2wks later.  told to go home and die since I didn't have any insurance.

got a referal to a specialist in the big city 1/2 a state a way.  Found out I was 2b, had never had hep a or b-altho dx w/both in the 70's and 80's.  S-P Commitment to Care paid for meds.  only helper drugs were herbal.  cl'd in 2 wks and fin 24 wks of interferon/riba.

I was just sitting here tonight giving thanks for how wonderful I feel. all in all.

I finally started doing yoga every day-just 10 mins.  after a yr, my mood is good, my flexibility is good for someone 59yrs old.  I sleep well.  I droped a size due to firmer muscles.

I did have alot of dental problems-teeth that just crumbled b/after a lot of dental work using new, non-metalic dental 'spackle', the crumbling finally stopped.

I did have to use the 'next generation' of anti biotics.  Nothing else worked.  I'm sun sensitive.

there is mounting evidence that chemo causes long term brain fog.  I do have short term memomry problems b/don't know if thats tx related or damage that yrs of heptic encephalopathy caused.  or something else.

I guess the brain fog isn't due to marijuana since marijuana actually prevents  Alzheimers.

All in all, I'm in much better shape than 70% of the people my age-59-regardless if they have hep c or not.+

[Lonestar823]

Thanks for that link to brain training.  I even looked up tetris and laughed out loud.  I'm not even close to managing that yet.  I will though.  My short term memory is what was and still is the problem.  I'm dyslexic now too.  Hope it's temporary.  And I used to take after my Gramps who was a math professor for years.  24 weeks into the infergen I had to use my fingers to make simple math.  When people started looking at me funny I devised a new way to count.  I'd push my tongue up against the back of my teeth and used them as an abacus.  Still do nowadays.  After reading some of these posts I count myself quite lucky to be left with hurting hands, feet and short term memory loss.  Some of these posts are heartbreaking.  Oh, and yes, yes, I agree with you.  Our hands tell our story.

[Lonestar823]

Funny, because I was thinking about piano.  I love it and I love jazz.  Might be good for my poor old hands.  Hope you're feeling better every day.

[susan400]

Hi Sandy.  I'm sorry that you're suffering so much.  I've suffered with the sleep thing, too.  I'm 4 months post treatment, (this time).  As you know, I've treated several times.  I still have the itching thing, which is super annoying to me.  I saw Dr. J yesterday.  Nothing to do with me until after I get done with my Mayo appt. He didn't schedule me for a follow-up until I call him after Mayo.  Yesterday was a weird appt. for me.  I just went to a family funeral last week and was carrying around some lingering depressiona and a soul-searching experience.  When I got done with my appt. I was super depressed.  Basically, I feel like I've been wasting a bunch of time the past 10 years with doing all of these treatments, one at a time with periods of off time in between.  Never clearing and it just seems so futile.  I told Dr. J that I'm ambivilent about going into a study because of the fact that I've already tried so many times and been disappointed.  He told me that I really needed to look into a study. The weird thing is that my LFT's were actually slightly better on my last blood test 10 days ago. But, the fact of the matter is that there's still liver damage there and I still have the virus (type 1A + 1B).  I don't know what will happen with Mayo, but I'm just wanting to step off the treatment rollercoaster.  I'm tired.  I want my life to be about something more significant than this illness and my son's illness.  I guess I'm just thinking about this stuff more since my family member just died last week.  For some positive thoughts:  WE CAN MAKE IT, WE'RE STILL HERE!

Susan

[SJL]

I read this forum every day but seldom post unless I think I have some info which might help someone else. After 2 rounds of therapy and to attempts at maintainence dosages, the last one ending on 5/5/06, I still have the disease & feel terrible. I have been diagnosed with Neuropathy of my feet, lower legs & right hand. Also, cryoglobulin and a tumor marker has suddenly appeared. I did have the Neuropathy through out therapy,undiagnosed, but the last go round of Infergen/Riba caused my feet & legs to actually go numb, causing 9 falls. I also drop everything with my right hand which has been diagnosed as carpal tunnel? I take P/T at least one day a week and this has helped my overall strength and produced the ability to get up from a sitting position. (my left leg was not allowing this, w/o incredible pain.) I am still fatigued, aching & sore, eyes killing me,depressed, itching, brain fog, etc. I cannot concentrate fully on any thing, leaving me very frustrated. I see a Psychologist once a week & this has helped also, just to have someone to talk to, who has not gone through the whole thing with me. I have also recently developed bursitis on the left elbow which needs to be drained. All of this is interferon related and I feel that the therapy has caused more problems than I had & I will not treat again, unless something less invasive comes out. I am a 1B, grade3, stage 4, with beginning cirrhosis. I never did drugs, drank very little and have been diagnosed as carrying this disease for over 30 yrs. I cannot begin to tell you in the last ten yrs., how tired and physically drained I was. I was always told by Doctors that I was working to hard & was chemically depressed! I ache so bad right now that I am taking a Hydrocodone pill & trying to sleep. I have terrible insomnia & have tried everything. Currently I am on Restoril and having taken it over 2 hrs. ago, I think I might have to try something else. I never can sleep until 1 or 2 a.m., and I wake at 8 religiously. It is not a good life right now but I pray every night that it gets better not only for me, but for everyone. Sorry for all the doom & gloom, but this is the way I have been left after therapy. I did 132 weeks, between the Peg-Intron & daily Infergen. The last 3+ yrs. of my life has been unbearable & I feel that I have been robbed of this time. I only hope that my liver received some help from the toxic poisioning which we all have been taking. Good luck to everyone.Take care of yourselves and make the right decisions, whatever they are will be right at the time.

Sandy

[cuteus]

that is so terrible, that pain is a daily companion for you.  I hope there is a pain management center in your area that utilizes a combination of therapies from meds to accupuncture that you can access.
one thing I never heard though, is cryoglobulins been tx related, with all due respect, that one is hep c related and it can add to the symptoms left from tx.  The last osteopath I saw stated that he sees people with neuropathy even in early stages of liver damage.  hOpefully, some researcher can come up with a way to test people to identify who might end up with the problems you are experiencing and thus offer the option of not treating with SOC. That is a lot of weeks of exposure to these meds, I guess at stage 4, you must have felt an urgency to try and get rid of the virus.  I so wish that you could have gotten SVR, at least.  I hope someone can help you manage the constant pain.

[DoubleDose]

Here is a thread from another HepC Forum that I found, where they discuss their post-tx experiences after successful therapy.  There are 161 replies, and a number of pages to review, so have fun!  Overall, lots of similar complaints.  I can understand where many of them are coming from!

http://www.ronmetcalfe.com/hepcforum/viewtopic.php?t=2296&postdays=0&postorder=asc&start=0

Take note of the person that only did TWO shots of interferon, and is now dealing with major after-effects!!!!  Pretty odd!

DoubleDose

[FlGuy]

Word jumble, huh?  Let me help in case you did not get the newspaper this morning.  Try this one - time limit: 4 minutes
Ready?

RVS

go...

[Algernon]

I hope I have this one!

Luckily, there are only 5 words in the paper every morning.  Otherwise, I probably wouldn't make it work every day.

[Algernon]

Somethiing about that female Keith Richards (and running from her) brought tears to my eyes.  The same creature has been chasing me.  But, on most days now (18 weeks post), I can outrun her.  Someone oughta make a movie...

Post-TX:  I was finally starting to feel decent until my thyroid started going haywire.  But that should be time-limited--once they figure out whether I'm permanently hyperthyroid or not.  

Except for NO SLEEP, I feel like I may eventually feel as good as I did before TX.  Thankfully, my brain fog seems to have lifted (and I had it BAD).  I try to start my day with the Word Jumble in the local paper.  I hear that playing an instrument (or learning one) and learning a language are other ways to clear the cobwebs from the attic.

Peace to all ya'll (from Texas),
Algie

[FlGuy]

No, your thinking of a power drill, variable speed reversible.  But it's completely understandable, you're only a few days from your last riba.

[Lonestar823]

No Susan.  You're not insane.  You're just a normal human being with a wound unhealed.  Don't lose hope.  You wouldn't be normal if you turned a blind eye.  My heart to yours, don't give up.

[FlGuy]

Thanks.  I don't want to be the last one on this forum.  Sadly, I won't be, there will be many more to follow us.

[cuteus]

I have those old hands too! always have!  I used to think that it is a reflection of my soul age, of the first time I was on Earth as a human. How else can you explain old hands in young people?  ok, maybe genetics. I like the ancient chinese secret better..
another puzzle that is extremely challenging is Tetris. Gosh, that takes a lot of brain power from me!
here is an article on restoring the brain power
http://www.cbsnews.com/stories/2006/01/15/sunday/main1209916.shtml

and some expensive software
http://xrl.us/r732 (Link to www.brain-train.com)

as for the racing, we can pair up and compare the pains.  one thing we CAN'T do, is stop exercising in some form or another, no matter how painful it gets.  That would mean that the full size figure lady sang.  You certainly do not sound like someone having recollection problems.
take care

[DoubleDose]

One additional issue that I have been dealing with after therapy is this 'autoimmune' syndrome that my rheumatologist calls 'unique to interferon therapy'.  It  tests out as an autoimmune problem on blood tests, but is not exactly like either Lupus, RA, Sjogrens, or any other AI illness.  He told me that the profile is consistent with other patients he has treated who have done the interferon therapy.  

I tend to develop red, slightly burning patches on my cheekbones when it flares (often after sun exposure, or heavy stress), and I feel weak, fatigued, uncoordinated, and spacey, along with a burning sensation in my lungs, ribs and spine.  It is also usually accompanied by a batch of mouth and tongue sores, and slightly swollen parotid, and salivary glands.  This is the one most irritating, bothersome, and draining symptom that I regularly experience after ending therapy.  I did not have this syndrome at all before the tx.  I had other sx, but not this!

I have yet to find any method to deal with these flare ups.  Usually it just takes time and more rest than usual, and trying to remove the stress.  

DoubleDose

[jmjm530]

Have you gone to a dermatologist regarding the red, burning patches on your cheeks? I had a similar sounding problem post treatment -- also flared by the sun and maybe stress -- and it was diagnosed as rosacea. It also could be Seborrhoeic Dermatitis or contact dermatitis, possibly even psoriasis. I've had some relief with a good skin care program and topical antibioitcs. Without more research, sometimes all we can do is treat the symptons.

Be well,

-- Jim

[Lonestar823]

Post tx 14 weeks, I think.  The brain fog really got to me and it doesn't seem worth the effort taking my calendar down and turning the pages back. ; ]  I do word games like Cuteous and just love her using her left hand technique.  I'm gonna try it too.  And what's up with this hurting hands thing?  I noticed someone else posted that too.  My hands which I've always loved hurt like crazy.  I've always been that really cute and sweet type looking girl that may possibly be an air head which belies who I am inside.  Sometimes I wish to god I was a mall rat air head instead of who I am.  My hands were the only thing that told the truth.  They're long and thin and have had tiny lines and wrinkles  like a really old soul since I was a small child.  They could do anything and I use them a lot.  They look the same but a million times a day I look down at them and say, "Get going.  What's up with you guys?"  My feet look like that too and I get very upset with them when they first hit the floor from my bed.  I'm off and running though, like a race horse.  Circumstances in my life didn't allow me one moment reflection on the last two years.  My hair is growing back.  It's nice and smooth now, not curly and poked out all over like it was pre tx.  I can stand on one foot out of the shower and dry the toes on the other without fainting.  I've even managed to take all my drains apart and clean them out.  My days are spent running and care taking of others and so I do all my word practice and drain cleaning in the night since I only sleep about 4 hours since tx.  I don't take any pain meds or anti depressants.  I used tylenol throughout tx though.  So, mostly so far I just race.  I'm running as fast as I can, hurting hands and feet or not.  Sometimes I get that eerie feeling someone's just behind me.  If I pause and glance over my shoulder, it's me, the female version of Keith Richards, looking like she's traveled to hell and back again and so I catch my breath and run even faster.

[susan400]

I'm 4 mon. post treatment (this time).  Sleep is only slightly better w/Ambien.  W/O Ambien, don't sleep.  Still get skin itch with heat or exercise.  Feels like it's a burning itch.  It goes away once I cool down and/or drink a bunch of water.  Still battle with depression on/off.  BTW, I am a nonresponder.  Hair is getting in a little bit better situation, but scalp still itchy (no dandruff, just itchy). Weight, normal.  Energy-mostly not good, but have longer periods where I don't have to be a couch potato, so that's good. As always, still exercising.  Ears-still don't feel right, although Dr.'s tell me that they look alright.  They don't feel right.  It's like I feel like I have water in them a lot.  Muscle and bone pain still, but slightly better.  I sometimes get discouraged wondering if I'll ever feel normal again.  What's normal?  I don't know anymore what's normal for me.  I've been doing these different treatments, on and off over the past 11 years.  On for awhile, turn out to be a non-responder again, and I'm taken off.  Then, try something new-per doctors suggestion, non-responder again, taken off again.  Again, and again and again.  I try to stay hopeful, but at times it's very difficult.  I just want to be able to forget all about my liver and Hep C and go out and live my life and let what happens, happen.  Then, I find myself looking at clincial trials, and/or studies.  Am I insane?  Don't know at times....

Susan

[beamishboy]

vsr ?

[2irish]

Way to go!  We will ALL be there SVR SVR SVR!!!!  Been reading your posts and am with you in spirit, wishing you all the best. KNOW you will do it this time.  best of luck

[cuteus]

almost two yrs SVR,(will know for sure next month), and am basically taking the same pain meds I did prior to tx for the herniated discs and carpal tunnel, as well as other aches.  the fog or slowness, has improved. I have been playing word games online, which I did before tx, but not during, and I have been using my left hand for many things (I am right handed).  It is theorized that challenging the brain creates new paths of transmission that will 'replace' the damaged ones.

Web search 'brain retraining" a term brought to my attention by Ina.  I had already started these things, since I had read that it improves memory and averts dementia.  Proof that might be working is today.  I forgot my keys in my PO box 3 or 4 times, maybe more, while on tx and post.  Today, I was walking out of the PO, when my brain told me I needed my keys, before leaving, I looked back, and there they were, hanging from my PO box door.  It felt good to remember.
You have to challenge the brain. again, search 'brain retraining',
other than that, fingernails are growing again, as is the hair, and no more weird intestinal problems.

[desrt]

Hx: Acute hep typeA 1961 5y.o. Acute hep typeB 1973. Third case of acute hep late 1973 - MD said couldn't be A or B since these were resolved and I had antibodies, shrugged it off as 'toxic hep'. 1992 biopsy dx nonA/nonB and presence of A and B antibodies. 2001 biopsy 'no cirrhosis, mild fibrosis' genotype 3e HCV.
Tx: Peg-Intron weight dosed for 220+ lb, 1200 mg riba weeks 1-19, 800 mg wks. 20-24. Oct '02 - Apr. '03.

Post-tx: All labs back to normal and feeling great one month post-tx. One year post-tx started tx for hypertension, insomnia, and pain in hands. No proof any of this is tx-related
All PCRs undetected Jan '03 thru Sept '06.
Use lisinopril for hypertension, recently increased dose from 10 mg twice a day to 20 mg twice a day. Used occasional cortisone shots for pain in hands until 6 mo. ago, then started using OTC glucosamine/chondroitin - gives better, more consistent relief. Have used Ambien, benadryl, and valium (not at the same time) for insomnia - no one thing works for an extended period.
Overall, glad I txd.

[honey11]

Hi Doubledose,   I will be 2 years clear in January this year so over the year and half mark.  For me,,seems like I have allergies which I never did before tx.  I haven't noticed the fatigue as much anymore and that seems to be a thing of the past. Just some days out of the blue,,I am congested. I still am trying to tackle that with a humidifier.  The biggest concern I have at the moment that bothers me and I would love to see that go away is the brain fog still.  I would think by now,,it would be gone! I often have that spaced out feeling.  My hair did not grow back as thick as it was post tx,,I can live with that.  Its the emptiness that I feel at times that bothers me.  Does anyone else experience this still?