Hi Ya-all..I am not on Tx yet,But always seem to have a throbbing in my mid back-

[Kit-c]

I Have gone to Back doctors,,Massage theaphy,
accupuncure,,and more ,,they always say they can't find
anything,,,(wrong with my back)-
but this was befor I got informed that I have my hitck-

hiker,(Hep-C),,,///

But lately it seems to be really throb-throbbing,,,a heating pat seems to help---

anyone  with this ,,,I know it's liver pain.,.,although
alot of doctors says your liver has No pain--hhmmmmm.....

What do you guys think,.???

See ya,,,,,,,,,,Gale,,,,,,,,,,,,,,,,,,,,,,,,,kit

[ChrisDDD]

Thank you for letting me vent and not getting on me for being bitter.  This really is just so frustrating!  Kit-C, I was so touched by your having asked about me on a prior page, so I may repeat part of what I'm going to say here under your thread as well.

I did go in really pissed and quiet, like rude, even when the doc came in, but realized before I went for the appointment that he's the one who's been keeping me on disability, so maybe I should TRY to behave myself.

The doc filled out my disability form and then spent an hour with me just talking and comforting me, asking about a locket I wear to honor my little sister who suffered for two and a half long years and then died of untreated cancer when she was 7 and I was 8.  We were raised in Christian Science.  I stopped believing in it the day she died.  My little sister's courage has kept me going all these years.  This doc has never listened to me like that before.

Anyway, my doctor was able to make it clear to me that he could never live with himself personally nor professionally if he put me on interferon ever again and I lost my eyesight as a result.  That, I could accept.  He prescribed no further tests nor blood work and explained to me in a little more detail how PROVE 3 will run, with a safety coordinator at each site from Duke University ruling on trial protocol deviations.  He said most of them are granted and that mine probably would be, and he seemed optimistic that I would get into the PROVE 3 trial in this large city.  He gave me an example of a doctor asking for a protocol deviation for a patient screening for PROVE 3 who had tried to jump off a bridge the last time they were on interferon as being definitely excluded, but that someone like me who developed a problem that 47% of patients on interferon develop, which is called interferon-related retinopathy, would likely be granted the deviation, especially because we now know it's an issue and that I am willing to submit to as many retinal exams as they wish and because when I had the retinopathy, I also had untreated high blood pressure.  My blood pressure is now under control with medication, plus I was on Peg in 2000 and never had ANY retinal problems.  I don't need glasses at all except for fine needle work like cross-stitching.

Anyway, I know many people who live where I do who have been given six weeks to live by local doctors for various conditions, and they head down to this big city I'm talking about.  Ten years later, they're alive and well.  It's just the database, brilliance and expertise available in this big city that makes the difference.  So that's where I'm headed.  I have an appointment with this brilliant doctor there in early June and am No. 4 on the list for PROVE 3.  I hope so much to get in.  I'll do anything they ask.  Otherwise, my belief is that within five years I'll develop cirrhosis and end up on a transplant list, yada-yada-yada.  No thanks.

[Kit-c]

Wow,,
I know how much heavy duty drugs my Brother was on,,
and you have plus the TX drugs,.,.,yikes-

You are a strong cookie,,,,,and things are looking up too,,,
--Thats so great,,,

good on ya,,,take care,,Gale

[wyntre9]

That is such AMAAAAZING NEWS!

After everything else you have been through I bet the current TX is a piece of cake.

Geez, I learn so much from people on Forum about how to put stuff in perspective.  

[BThompson4]

I got hep c in the army in 1974.  Never did drugs, but was around many Vietnam vets that did.  Could have been air gun shots, trip the the barber shop, etc.  Had coma episode in 1999, so probably had cirrhosis by then.  Did not get tested for hep c until 1999.

Did really well for about a year and a half after transplant in 2001, with viral load staying under 200,000 and as low as 60,000 checked every three months after transplant.  The virus hit with a vengeance about July 2001, going at least over 3.5 million; limped along at work and went on disability in Jan. 2005.  Treating now in week 39/72, clear since week 22.  Biopsy two weeks ago showed liver fibrosis improved from at least F2 in June 2005 to between zero and one, so tx has been great for my liver.

Hope everyone is well.

[ChrisDDD]

Hey, it's good to hear from you.  I was actually very fortunate in that I had no visual changes at all, just the cotton wool spots and retinal hemorrhaging on retinal examination.

My appointment with my local HepC doc is tomorrow afternoon, and I'm bracing myslf to not cause a scene.  I'm very angry that based on my biopsy of 7/05 showing Stage 2, Grade 3 his advice was, "Needs to consider retreatment."  I was trying to put it off due to many things going on in my personal life, and he responded by saying I didn't have time to wait.  I also wanted to wait for VX-950, and again he said I didn't have time to wait.  So I got to week 9 of Infergen/Riba and he kicks me off, saying he'll never treat me again with any kind of Interferon.  So what am I doing now?  Waiting, and waiting and waiting and waiting.  I was furious to learn that he will be running a PROVE 3 trial right here in my home town and has already scratched me off the list due to the retinal problem on Infergen, during which time I also had untreated high blood pressure.  Blood pressure is now under control with meds, we know to watch the retinal issue closely with as many exams as he wants me to have, but he flatly refuses to treat me, forcing me to drive to a large city two hours away (4-hour commute round trip) where I'm very hopeful about getting into PROVE 3, as the doc there has me as No. 4 on his list for PROVE 3.

I feel like going in tomorrow and asking him why I'm there, why I'm paying him for an exam when he has no intention of ever treating me again.  I feel like telling him that I want him to pay for my expenses of having to commute to this large city for treatment, where I may even rent a flat for the first couple of months until my body adjusts to the meds.  I feel like refusing to undergo the annual ultrasound he orders as well as refusing to get the lab work he'll order.  For what?  So he can sit around at night and throw darts at a dartboard as he gambles on how long it will take for me to progress to cirrhosis?  So he can just sit there and watch each ultrasound get worse as the years go by?

I know I should try to be objective, but I just can't.  I plan to go in stone-faced and unresponsive, and then leave.  I guess it would be in my best interests to comply with any orders for tests so that he can't report my non-compliance to Vertex, as that is an exclusion criteria for PROVE 3.  Otherwise, going to see him just seems like a waste of time and money.  I'd rather sit home and watch paint dry.  As you can tell, I'm pretty pissed.  Sorry.  All my hopes are pinned on the doc in this large city.  My appointment is June 5th, and the hospital there says that's when they'll be screening for PROVE 3.  Sorry.  Wish me luck!  How are you doing?

[BThompson4]

I had very sharp pain in my lower right back everyday for a least a few months before I went into a hepatic coma before my liver transplant.  This occurred after a thirty minute drive mornings to work in a car with bucket seats. There is no doubt in my mind that my damaged, hard liver was pushing into something in my lower back and causing the pain, which always went away after a minute or two of walking.  Your liver can get hard as a rock in late cirrhosis, and for me it was easy to feel an inch or two below my rib cage.

Having said that, your back pain could be caused by lots of things.  I am not trying to say you have cirrhosis!!!  Just that cirrhosis can definitely cause back pain.

[sass_blue]

sounds like you have been to hell and back. how long did you have hcv before it got to cirrohsis?  Is that what caused the cirrohsis?

[ladybug52]

Well, maybe I'm wrong, never heard of it that way. Since I work in therapy dept I always look at most back problems as musculoskeletal.
How are you doing? I watch you watching all the trial stuff! Has your vision returned to normal?
take care,
bug

[rosebud57]

i don't know much about liver, but what others say, swelling pressure, but "no pain" sound right to me.

years ago i was having pain in my lower back, just below the ribcage swear it was kidney pain, was having freq. UTIs so it made sense to me. not a problem anymore.

currently i experience back pain from laying around so much. i am hoping that is about to change. will try to do some form of excercise (i'll probably last 10 minutes).

muscular sounds a possibility. sometimes that can rage on a long time. i have had some really long term stuff just a few years before dx hepc. i was on a three year oddysy suddenly began walking crooked  drs. gave cortosone injection, foot braces, ,  took three years and chiropract. and massage therapy and more and a different chiropractor to figure it out. if i had left it to regular & foot & ankle i would be a cripple. (no offense intended to the disabled).  the problem was likely in my lower back (sacroilliac region).  one day i got the right adjustment and the feet were straight.  strange huh?

[Kit-c]

Thanks all,
The pressure is like a dull ache just under the shoulder blades,,,

I think it is like Chris said,my ultra-sound showed an enlarged liver,

and when my doc pushed and poked me down Below my breast bone,hurt

hurt like poopola---anyways the ups and downs,aches and pains,and getting

older,,yee-ha....

How are you feeling since your Transplant BThmp,???My brother had a

heart transplant years ago,,,,I stayed with him,waited for his beeper to go off,

then the long hours of the operation,not much fun,but it gave him life-

I hope you are doing well,,,

see ya,,,gale,,,,kit

[wyntre9]

Your stories are heartbreaking.  I'm so sorry Chris, that you're going through this.  

You expressed yourself so clearly, so articulately, and you seem so aware of the BS, that I'm sure you'll clear this latest hurdle as well.

It's just a shame that you have to fight so darn hard.

Your explanation  of how you're feeling reminds me of a time I was traveling  2 to 3 hours a day going to a job I hated in a state I can't stand to pay the bills for living in a city i didn't want to be in . . .

The old Catch 22.  I eventually quit the job.  

Sounds like you just gotta hang on though to get your foot in the next door.  The idea of renting a place in the beginning sounds like a smart thing to do.  I hope everything works out.  I'm thinking about you.

LB - what a trooper you are.  And you always have such a great sense of humor. . .

[ladybug52]

I hear you! You know before I started tx I met an infectious disease specialist in private practice and a gastro clinic PA at a university that specializes in hep c. I was careful to weigh one against the other to get the best care. I went with the infectious specialist for convience.  After I started tx and found out I have to drive an hour to get lab reports because they will not give results over the phone or fax me, I got a little discouraged. Then when the nurse refused to ask the dr for a 4 week pcr, and my hgb dropped to 10 without any one telling me, I changed to the P.A. at the gastro clinic.
Now I've seen her once in over three months, it took me two weeks of phone calls to get my meds refilled and I can't get a response to calls about my itching. Why do they take on patients if they can't manage their care? My hgb rose to 13.8 and no orders to stop procrit. I stopped on my own and had to go ask PCP to give me a lab slip for complete blood count to see how the HGB is doing without procrit for 3 weeks. My PCP is so sweet, he threw in an order for another heptamax, I educated him on that test, after it was drilled into me by Jmjm. It's frustrating playing the game. I'm so glad to hear you are getting close to getting in a trial. I couldn't remeber if the visual changes were permanent or a side that got better. Good luck!
Bug

[ladybug52]

I have to agree with madbrad. Doesn't sound like liver pain.Do you have any occupational hazards that could cause this pain? Where are you meaning by mid-back? Between the shoulder blades? Lower?
The liver capsule can become inflamed and cause pain and pressure some say. I don't know what causes it but Right upper quadrant pain is associated with the liver. Tried exercise, stretches, anti-inflammatories?
Good luck.

[ChrisDDD]

For what it's worth, I've had back pain also and it's been related by one doctor to swelling in the liver due to inflammation pushing other organs around and putting pressure on my back, resulting in pain.  Hope this helps.

[madbrad]

I'm not a doctor just a patient..But I do know that your liver is located in the front of your trunk ,on the right .The largest part right next to your diaphram extending to near your stomach....So really I wouldn't think that would be it....But not being a doctor I really wouldn't know...