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Posted 9/22/2012 12:30 PM (GMT 0)
Ill try to be brief..
58 yr old female, found out 10 yrs ago had hep c. Started treatment 3 wks ago, JUst at stage 2 on biopsy, viral load 12 million group 1. Ultrasound good on liver, kidneys etc..(said I could eat and drink whatever I wanted). Alt, ast one was good and one was slightly elevated. (I'll get better at learning numbers/meanings).

Really healthy, strong. Work out, eat organic and healthy etc...was a runner/bike rider for 25 yrs (then big toes grew shorter, couldn't walk, bone on bone, no cartilage (say what, doc?!!). Anyway, play racquetball, weights etc...

Ive been a "lurker" on forum, reading about tx. Concerned, afraid of symptoms. Assumed dr. would help with those. He missed first appt, gave info. to PA.
Don't do rec drugs, but did 35 yrs. ago in 4yr wild child episode. I said I didn't like weed but loved LSD. Hav a couple of drinks avg 4 nights a week...strict about this. My preferred self medication for stress, joint and back problems.
I have at least 10 bottles of pain meds left over from necks fusion, feet implants, knee surgeries, etc.
I believe in medication, never excess.

I say all this because I think my dr. has an impression of hep c people. I saw him briefly, finally on second appt where he gives 10 min. Speech on dangers of marijuana. (if he had been at first appt he would know I didn't like it anyway). He made it clear only OTC meds. Call if I needed anything else. Call if I got rash

I call I two weeks and tell nurse I got rash, about half covered, blisters, but not crazy itchy. She says she will call back and never does. In 4 days starts easing up and mostly gone, now. Yay!

Yesterday, had dental appt. six front teeth capped, temps removed, gums infected, had to laser off infected tissue, one tooth accessed, counted 20 shots. Oh my goodness!!! Have dental phobia, little shop of horrors. Bad day.

On way home I call nurse and tell her he prescribed 6 antibiotics and Percocet. Can I take them? I said I really, really really needed one of those percocets. She would ask dr. and call back. Never did. Took antibiotics and half of a Percocet (havent needed anymore).

Treatment going better than I imagined. Had some rough days...never taken ani depressants or anxiety pills but really needed them several times. Flu aches, muscle, joint pain bad a couple of days. Had to lay down. No OTC would help what I felt those days but I didn't call. I would like to feel like I could if they happen again, though. I would like to feel like he cared and wasn't assuming things about me.

What do I ask when calling for a new dr? Will their nurse tell me or will I have to make appt to find out? I'm interested in the other dr. In this facility. Shreveport, la.

So much thanks and appreciation for responses. God bless and God speed...hope all find a laughing place!!
Posted 9/22/2012 1:56 PM (GMT 0)
Hi El,

Connie has officially welcomed you, but I'll do the same...welcome aboard the Hepatitis Train! We are a group of patients and caregivers of those affected with liver disease.

I, personally, am very interested in the Hep C treatment posts now that my partner is post translant and having a resurgence of Hep C symptoms...fatigue, high viral load, etc.

They will do the treatment again for Mike, but no 3rd drug, just the pegalated Interferon and Ribavarin. The folks at our transplant center say that the 3rd drug causes undocumented problems with the anti-rejection meds.

We know what you are talking about with doctors who are not responsive. Mike has had two bad experiences. The first was in 2003 when he did the 2 drug combo in a trial. The Doc with the Mercedes and $300 shoes saw him to "sell" the participation...got Mike to sign everything, and then we were tossed off to a NP who was very nice, but her limited authority and HUGE case load overwhelmed her ability to offer adequate care to those during the treatment.

The sides are bad, the cost of some of the drugs used to mitigate the side effects are expensive and rarely covered by insurance. Mike's worst side effects were depression and irritability. He needed psych drugs and he would have needed to ask for them himself. If I called and reported a symptom or side effect ,they paid no attention...but Mike was so out of it, he didn't know how to ask.

He felt like a Mercedes car payment the whole time. He didn't clear and as you said, took a year to feel better.

After treatment we found a wonderful doctor at another hospital who was kind, smart, thorough. He allowed email communication and would answer night or day with a quick recommendation. He was fantastic! Wish we had found him for the treatment time!

Years past and in 2009 he started to fail again, but we had moved and Mike had lost his private insurance and switched to Medicaid. The only GI doc in town who took that insurance was a total " ". I didn't say ,this is a family friendly site. He treated all the Hep C patients like they were convicted felons and didn't realy deserve treatement. Same experience as you are having..littlle regard for Mike's feelings or state of mind and minimum care. Mike went to ER one night wiht a fever after being sort of in a coma for 24 hours...not arrousable. They called the GI doc who would not come in. The hospitalist got someone else to cover, they admitted Mike, who was found to have septic shock and his systems were shutting down. Mike made it through, but that GI Doc was through also.

That's when we went to a Trasplant Center for an initial consultation. They were wonderful. In 2009 it was "too early" to list Mike, but the path he was on was clear. they took over his meds and saw him periodically.

In 2010 when it got really bad, he bacame an active patient. And in 2011 he got his tranplant.

One thing in your email that worried me was the notion that you could drink anything. I have learned that NO alcohol is a key to success and longevity. Evidently Hep C virus thrives in a liver that struggles to process alcohol of any kind.

In retrospect, the second GI guy we didn't like continued to be unkind to Mike so long as Mike's answer to the do you drink alcohol was "YES, socially". He didn't exactly say cut it out totally, he was waiting for Mike to figure that out himself.

The UMiami DOC was really clear...if you continue to drink alcohol, you will die! Within 90 days. Mike was really sick by that time!

When Mike did treatment, he abstained from alcohol for a year. I recommend that change.

Good that you have a healthy life style, it will be your saving grace during this period.

If there is any chance to change docs, I'd so that. Your guy likely has too many patients, is making a bucket load of money off the insurance and not providing the care to his patients that needs to be provided.

We live in difficult times I think. the system reimbursed docs less and less and to make money they are ordering more tests, that drive costs up, and seeing more and more patients to increase revenue. But what is the service?

Best, Carol
Posted 9/22/2012 1:58 PM (GMT 0)
Elgann, welcome again to the forum! Sorry to hear you have hep C. I hope treatment works for you. I was a wild child myself back in the late 60s. Is the doctor you are seeing a hepatologist? Is there one you could see outside of the facility where you are now being seen? You are in for a long ride and need someone who CARES about your diagnosis and treatment. You will not receive any information by phone. You need to meet a new physician face-to-face.

One thing you absolutely need to do is to stop drinking altogether! Alcohol is the worst thing you can do to your liver. It is like pouring gasoline on a fire! I am surprised that your doctor didn't tell you this. If you have trouble quitting, go to AA for support. You are better off taking a Percocet if pain is really pad. You would also be better off if you abstain from red meat. It is the most difficult protein for the liver to digest. For someone with a damaged liver, you are making it work overtime when you eat red meat. However, it's unlikely you will find a doctor who tells you this. Plant and dairy protein are okay, as are fish, chicken, turkey, and pork. You should be taking a multivitamin WITHOUT iron. Also drink a lot of water, preferably distilled or spring water.

There is a very informative topic at the top of the page, entitled Hepatitis Resources. If you haven't read that, please do. If you have any questions, please feel free to ask. Someone will be able to answer. Also, you can use the Search feature in the blue banner at the top of your post. Put in a key word.

Hugs,
Connie
Posted 9/22/2012 2:56 PM (GMT 0)
Listen to what Carol and Connie just told you. They're right on the mark. You need to find a hepatologist ASAP. Too many docs treat Hep C patients like lepers. I have been incredibly lucky, as all my docs have been focused on one thing; getting me well. Again, no alcohol anymore.
Posted 9/22/2012 3:39 PM (GMT 0)
Oops. Let me clarify. I haven't touched alcohol in several months. And sure dont plan on it in the future (just started treatment ) when i spoke of drugs and drinking it was just my history
And if I had a problem I woudnt be able to limit it. I just prefer it to muscle relaxers or pain pills. And I would be taking a ton of Tylenol to do the job of two, just two, drinks... And some days i don't. Avg 4 days a week. In the PAST. Not now. No sir.
Some people prefer weed. My grandmother! Hahaha.
Posted 9/22/2012 3:51 PM (GMT 0)
My dr is highly recommended heptologist. I have been eating healthy, organic for years. Cholesteroleral, triglycerides, wonderful.
Chicken, turkey, milk thistle, no hamburger. An occasional filet
Vitamins, etc. for years. Been drinking excessive amts of water
for 20 years after lythotrypsy for kidney stones.
Really. Really. I don't know everything by a long shot but I do try to find out.
The ONLY thing I have done prior to several months ago is my 2drinks avg 4 nights. Sometimes don't but never go over. I'm really disciplined. Work out etc..
And with family history of heart disease and mildly elevated blood pressure 2 drinks is good for your arteries. I KNOW its not for your liver but I rationalize that I offset it by healthy lifestyle, supplements and not taking Tylenol, pain meds and muscle relaxers that can't be good for liver either.
I wish they had a scale (like calories) in substances so we could see liver impact. A plus for good things and a minus for bad things.
Posted 9/22/2012 3:54 PM (GMT 0)
Thanks so much for the responses, y'all!!
Posted 9/22/2012 6:18 PM (GMT 0)
Elgann, thanks very much for clarifying that the alcohol intake was in the past. This quote is what made us think you are still drinking: "Hav a couple of drinks avg 4 nights a week." That is present tense, not past, though you may have meant "had." I hope that the treatment works for you and you will never need a transplant. But if you ever do, you would probably need 6 mos. of DOCUMENTED sobriety in order to qualify. I believe they would consider 4 nights out of 7 drinking as alcohol abuse. Even if it's not present tense, it seems to be in the not-so-distant past (a couple of months ago.)

Yes, I've read the literature about 1-2 drinks a night being good for the heart/arteries. However, it is absolutely contraindicated in those with liver disease...or in alcoholics, of which I'm a long-time sober one (26+ yrs.) I still wish I could have a hot toddy with rum right about now for some congestion. But I can't and I won't.

Also am glad you are seeing a hepatologist. However, if you feel he is judging you or not communicating with you, you need to see a different one.

You CAN take Tylenol (acetaminophen) in a limited amount--1200 mg a day. In 200 mg. tabs, that would be 6 tabs 3 x a day. You cannot take ibuprofen or other NSAIDs.

Let us know how the treatment goes.

Hugs,
Connie
Posted 9/22/2012 8:59 PM (GMT 0)
Well, one mentions alcohol and thats all anyone focuses on. So much for the whole story and guess I can't quite fault the doctor for not hearing anything else I said. Oh, he never heard anything I said!!! because he sent the PA in on the first appointment and apparently never read my chart and lectured me on marijuana I made clear I never liked. This feels hopeless.
Posted 9/22/2012 9:06 PM (GMT 0)
I'm sorry. I have the biggest weirdest headache I've never had in my life. I need to shut up.
Posted 9/22/2012 10:11 PM (GMT 0)
If you are having a horrendous, worse than you've ever had headache, you should go to the ER. Could be a ruptured blood vessel in your brain. Also take one aspirin.

We understand you. If your doctor doesn't, or seems like he doesn't care, you absolutely should find another one.

Hugs,
Connie
Posted 9/22/2012 10:40 PM (GMT 0)
I never have headaches. Never had a migraine. Thought this was a shot reaction.
Posted 9/23/2012 12:56 AM (GMT 0)
Could be. Do you still have it?

Hugs,
Connie
Posted 9/23/2012 4:16 AM (GMT 0)
Yep. Cant find comfortable position. Not experienced with headaches. Know it's not a migraine though. Light doesn't bother me.
I really need a new dr who will call me back and allow something besides Tylenol ONLY as I need it. I have a ton of pain meds and soma from past surgeries. I don't want to take anything without dr approval. But I want to finish this treatment and I'm having issues with irritability and depression andi know Tylenol doesn't work on that.
I feel scared and abandoned. Who do I call for help when my dr won't call back?!! I've only called twice in a month and the first time because he wanted me to if I got a rash.
Yesterday after bad dental work. He didn't call back so I started antibiotics anyway for abcessed tooth and excised gums. I did take half of a Percocet. But none today.
Oh Father God. I am SO sorry. I range from angry to depressed to so scared. This is not me!!! And I don't like myself at all!!!
Posted 9/23/2012 4:31 AM (GMT 0)
Elgann, you CAN take Percocet. It's oxycodone and acetaminophen (325 mg.) You should not take Soma. I used to take it for sleep and it worked really well. But as soon as I was diagnosed with hep C, my doc took me off of it, as it is harmful to the liver over time.

Whenever you get with a new doctor, ask about an antidepressant. It's very common to experience depression on treatment; therefore, an antidepressant is often started prior to beginning treatment.

If you still have the headache tomorrow, I recommend going to an ER.

Hugs,
Connie
Posted 9/23/2012 4:39 AM (GMT 0)
I know of a couple of board certified hepatologists in Shreveport. If you e-mail me I will let you know who they are.
Posted 9/23/2012 10:57 AM (GMT 0)
Who do I ask if this dr cares or calls back or is willing to help with symptoms? I hav enough left over meds from the past to see me thru a yr but not anxiety or antidepressant and I need something. Just knowing I had someone to call makes it better. Maybe that's why I keep 10 yr old pain meds. Just having them just in case makes me feel better.
Thank you so much guys. It's hard to present myself as a sane in control disciplined person I once was...
Can I mention my drs name here? In case he's one u r thinking of?
Posted 9/23/2012 12:53 PM (GMT 0)
BEst to e each other offline.  YOu can click on email at the left of the post by the envelope.
Posted 9/23/2012 1:19 PM (GMT 0)
Oops. I am not following directions. Not listening apparently. Was trying to email nice person who knew dr in Shreveport and just started pressing buttons at top of envelope. Didn't know the middle button was thumbs down. (eyesight is really poor).
Name was ksport maybe? Can I undo or fix that? So sorry!
Yours truly,
The Professional Apologist
Posted 9/23/2012 3:10 PM (GMT 0)
Hey there E... are you dealing with a chronic pain issue??? I ask that because you said

 "Hav a couple of drinks avg 4 nights a week...strict about this. My preferred self medication for stress, joint and back problems.
I have at least 10 bottles of pain meds left over from necks fusion, feet implants, knee surgeries, etc.
I believe in medication, never excess."

You talk about self medication... for stress, joint and back problems.... 

If you are dealing with chronic pain... it might be a good idea to work with a chronic pain specialist or clinic...

to find ways to deal with the pain rather than self medicating...

congratulations on your sobriety!!

Sandia 

 

Posted 9/23/2012 9:51 PM (GMT 0)
Well I think I'm a hoarder. I have only taken a half of a Percocet in 4 months. I fasted alcohol from oct thru jan praying for one of my kids. I haven't had a drink in several months. I really look forward to a sprite and orange juice with a splash of grenadine in the evening now. I think I like the toddy ritual ...haven't missed the alcohol or anything really.
But I'm having some issues on this tx now and am hating myself. And think I do need help.
That's all I asked was hw to find another dr who returns calls and most of my posts have been explaining my behaviors, beliefs etc.
My neck was fused last year and my c-7 vertebrae is dislocating now. I have implants in my feet, nerve damage in my ulnar nerve that affects my whole forearm and really makes playing an f chord difficult. But I still work out, bike ride, racquetball, work in my garden, take care of 6 grand babies in rotation (oldest is 3) and work full time as a bookkeeper.
But none of the good I do seems to catch anybody's attention. U seem to focus on one thing

I kinda doubt, just since this seems to be everyone's main interest, I will ever drink again but I still believe in moderation it is healthier than taking a bunch of pills. And eating right and working out is important. A relationship with God Is essential.
So long, guys.
Posted 9/23/2012 10:58 PM (GMT 0)
To e-mail another member, simply click on the person's user name to the left of their post. Yes, that person can also post a doctor's name. Apparently, Arneeb did not see that you said it has been several months since you had a drink of alcohol.

Hugs,
Connie
Posted 9/24/2012 1:19 AM (GMT 0)
Elgann , Just to clarify for the folks out there that take this the way you obviously did . We ( all of us ) need to be honest about our medical history and what we are doing in our lives that might conflict with getting ourselves better .
Considering this is a internet forum it does provide a anonymous way for anybody to comfortably tell each other our problems related to this disease . Nobody here reads minds but we do have alot of genuinely concerned people , all of which are in some way tied to this disease . When you type words that is all we have to go on until we know your personality .

You seem to be aware you may have ( or had ) a problem with alcohol , We are trying to get to know you and your honesty is appreciated . There must be more I feel than just " Looking for a doctor in your area " as you posted . You found us so you have to know there are resources available to answer that question . Although ..... looking here is fine if that's just all you need .



A. Ziffle
Posted 9/24/2012 4:23 AM (GMT 0)
To clarify.... I was concerned about your pain level.... and the management of it... sounds like you are doing many things... it's just a pain management clinic can suggest thinks like water therapy... heat therapy.... etc.... I acknowledged your sobriety... but was mostly concerned about the pain...

anyways... glad your talking... Sandia

Posted 9/24/2012 4:45 AM (GMT 0)

I have fixed my profile so you can e-mail me now.  The hepatologists I know of are both at GI Specialists.  I haven't been in a situation where I needed them to call me back so I can't help you with that.  If you have other questions about them, please e-mail me and I will try to help.

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