Philzone.org - Philzone Phansite Community Discussion Board: Hep C Support & Awareness: ARCHIVE 2010: Just got the news, and need some help

In the past week I just learned that I have Hep C. I am waiting on test results to see what stage I am at or it's viral load. Something of that nature. My body has been giving me signals that something wasn't right. I really don't know what to do with myself at this point but to just not think about it. I immediately thought of Phil and his courage and determination. You give me strength Phil in my time of need.
My knees are hurting and swollen for two weeks now, mainly the left knee and I have bad Panic attacks for the past few months now. Is the knee swelling a result of the Hep. ?
I am trying my best to keep my head up and use this as an eye opener and a doorway for change. Drug use in my teen years are catching up to me, I guess I am not as invincible as I thought I was.
I really know nothing of what I can do to help myself. If I need treatments should I go holistic approach or use the nasty chemmy drugs in western Medicine? I need some help here Phans.
I want to dance to my heart song for as long as possible so if anyone has advice for a young Phan on how to do that lemme know.

Welcome aboard Justin.

Bottom line is more people live with Hep-c than die from it. You have plenty of options. Making a treatment path choice is probably premature at this point. Better to have test results first. All forms of treatment continue to improve with time.
Best advice I can offer and the same thing I was told when I got the news is.... don't panic!!! We were all scared as you are.
It takes some time to adapt to your new reality.

Now that you know you have it you can do something about.
Forget any thoughts of doom as odds are your going to be fine.


"I want to dance to my heart song for as long as possible so if anyone has advice for a young Phan on how to do that lemme know."

Try to stay positive... because attitude can influence outcome.


Stick around as this place is here for YOU!

Welcome to the hepperboard, Justin.
Have patience while you're waiting for your results. They'll know what to do with your knees and how to deal with the Hep C, which is known to be able to cause joint pain. Whatever the docs tell you, be sure to get a second or third opinion on the proceedings that are to follow.
There are new treatments on the horizon, the future is brighter now than just a few years back. If your panic attacks are too strong to bear, ask your doc for remedies. I went through that thing many years back, and my answer was alcohol, I don't recommend that.

I'm sure you'll get many answers here. Keep coming back, it's a great place to be. Use the search option here to find threads which deal with your question, or just ask here.

All the best to you.

DON'T PANIC!!!!

First and foremost, don't panic, Hep C is an insidious virus, however it typically does not cause drastic problems all at once.

So first don't panic, second, find a good no, great doctor! However you plan on treating you need to know things only a doctor can determine, the number of critters in your blood is the least of which. You need liver function tests and perhaps an ultrasound of the liver and/or biopsy, once you know the state of your liver you can decide if you want to be holistic or thermal nuclear with conventional treatments.



So, if I didn't mention it don't panic, get a good doctor and learn all you can about your dragon, Geno type, etc. Then you can select your path based on good science.

Let us know when your labs are in Justin, till than listen to the music and chill..

Welcome to the Phamily,

Peace

Ed

Remember...


DO NOT PANIC

because...
it only makes things worse!


THINK POSITIVE PEACEFUL HEALING THOUGHTS!!!

Welcome!!! This is a grate spot and we will walk you through this. Asl questions and tell us how you are feeling. We all know how you feel more or less! You'll be phine so keep on coming back. You are very fortunate to have landed here!
Peace
RTD
Hop on the bus. Always room for another hep kat!

Hi Justin. It's hard not to panic, to organize, to want to plan your path of treatment, your life, but it's ok to wait.

I am here as the spouse/caregiver of Greg who has Hep C. When he was diagnosed it was almost as terrifying as when he was diagnosed with a stage 4 cancer. He isn't ready to treat his Hep C, and has beaten the cancer through very powerful chemotherapy. The treatments now available for Hep C can be very intense and only effective for some people.

Gather information, make lists of questions to ask your doctors, ask us questions, gather more information. You most likely have lots of time to make decisions. Go easy on yourself. You can share the information with the people you want to know, and not with others. When Greg was diagnosed with Hep C we didn't know what to do. I did a lot of internet research, we became educated about it, and found the Phil Zone. This place is the best. Full of supportive people willing to share their info, experience, support, love and music. What more could you ask for at a time like this?

As we say in Oregon, don't panic, go organic.

We are everywhere.

FUCK CANCER!

Welcome. We've all been where you are and we're all still here fighting the good fight. Some brave and lucky warriors have killed hte dargon, some non-responders like myself hang around waiting for a miracle. But none of us has given up. When I got the diagnosis the only information on the internet was "The only treatment is a liver transplant or else you die." Ten years on and probably more than twenty five years after contracting the virus I haven't died and haven't gotten a liver transplant. Hell, two years ago I turned fifty and became a father for the first time. Lots of life left for us yet.

Hey Justin-



Being very young, you've got plenty of time to decide on an approach. As has been suggested, find out your "genotype" and come on back.

.....................




~ Welcome Justin ***


........................

- There is alot of info to call on' in here...and alot of crew in here have stood at the same cross road....((( & some of us are still standing there !

- there is a process to this trip'... you can sort of put in 'point form' ....which may help you gain insight to whats happening & whats not - & get some control on it

- first up -

....find out what your 'Geno type' is - ( checkout the thread here called ...'VIRAL LOAD TEST'

and ask your doctor what your Geno type is ...and what your current 'viral load' is -

and you can start from there * to look at your options for treatment if thats the path 'you' choose ~

eitherway it is a begining * and you will soon get with the 'Lingo' ~ & have a better chance to know whats best for you*

~ Goodluck & I look forward to your posts & updates *




..........................

...no sorry about that Justin ...the thread below is called- " HEP C VIRAL LOAD TESTS " -

I think it may help*

Greetings from PhilLesh.net!

HEPATITIS C
SEARCHING FOR THE CURE!
A PERSONAL HISTORY

After the birth of my first son in 1986 I did the responsible thing and applied for life insurance. The results of my physical indicated that I had a little known liver disease called Hepatitis non A Non B, a viral disease. I had probably been infected in the mid-sixties, and years of hard drinking had aggravated the disease. I took my doctor's advice and gradually cut back on my drinking to the point where I quit completely in 1990.

By the time I was diagnosed with Hep C (when a test was developed in 1991), I was a happily married man, father to two beautiful, healthy sons, and ready to deal with my health. At that time there wasn't much information available, and few treatments with much promise, so I became a vegetarian, sought out alternative methods to strengthen my immune system and exercised daily. I was not in any rush to do a liver biopsy or chemotherapy, and was easily convinced that it was not necessary. I now feel very strongly that it was a mistake not to have seen a hepatologist as well.

As I now know, a liver biopsy is much more informative than blood tests (in fact, my blood tests improved weeks before my liver failed). A GI doctor or a hepatologist will also do regular tests for liver cancer. Hep C increases the risk factor for liver cancer, so it is very important to be screened for it on a regular basis; cancer is much more likely to be deadly when found late.

1995 was a very difficult year for me. Within weeks I lost Jerry and my father-in-law, who died after a brief battle with liver cancer caused from Hepatitis C. My family was racked with grief from these two huge losses. I also had the unpleasant task of dealing with the fact that there was not going to be any touring income to cover the unbelievably large overhead at Grateful Dead Productions. I believe that stress of those times lit the fuse of my hepatitis and allowed the virus to rage. I feel that my major decline started in 1995 and by 1998 I was in end-stage liver disease, and knew I'd have to have a transplant.

It was easy to be in denial about my health during those years; there was so much stress, and I was in my mid-fifties, so I blamed a lot of the symptoms on aging. I was thin and losing muscle but I was still very active. I know now that I had a small internal bleed on the road with The Other Ones, but at the time I thought it was caused by the awful tour food.

In early September 1998, one evening after dinner I suddenly felt horribly ill and then started vomiting copious amounts of blood. I lost a third of my blood that night, and for the next month had periodic internal bleeding and blood transfusions. This was the beginning of what we called crisis mode. Jill didn't leave my side for three months for fear I would hemorrhage; she slept on the floor next to me at the hospital because I was experiencing one crisis after another- she was told three different times that I very likely wouldn't make it through the night.

After a month of emergency room visits and weeks of hospital stays I had a shunt put in to help relieve the pressure on my liver. The shunt helped for awhile and I was able to gain a little weight back. However, within months it clogged up and I was back in a dangerous position. Meanwhile, we did a lot of research on liver transplant centers and decided to list with the Mayo Clinic in Jacksonville, FL. They had an incredible team of doctors that I connected with right away, a short list and a small nurturing hospital for recovery.

I prepared for my surgery with an excellent diet, short walks in the fresh air, meditation and guided imagery. My doctors encouraged me to choose music to play during the operation, and I also had the powerful love and healing energy and prayers of many caring people. I was watching dolphins play in the ocean when my doctor called and told me to come in. My surgery was about 3 1/2 hours and I did really well- I was out of the ICU within 6 hours and actually walking within 12 hours. I was out of the hospital in six days (on Christmas eve), although I had some rejection so I had to go daily for treatment.

Even with a new liver, I will always have Hepatitis C, and have seen it flare up twice since my transplant. The first time was because of the steroids they gave me for the rejection; it took months for the numbers to stabilize. The second time, after the fall 2000 tour, I came home with a sore throat that I couldn't shake, and after a few months we discovered that I had a fungal infection. I am more susceptible to fungus infections because my long-term anti-biotic and anti-rejection medication protocols suppress my immune system. Since it took so long to identify and treat the infection, my immune system was stressed to the point that the virus flared up. A recent liver biopsy showed, however, that now my liver is doing great and my numbers are all back to normal.

I have learned a lot about what I can do to take care of myself and to protect the gifts I have been given. I was blessed to have received the blood of many giving people, and the ultimate gift of a liver; this from a young man who had told his mother that he wanted to be an organ donor only a few months before he died in an accident.

I encourage you all to: Be tested for Hepatitis C.
If you test positive see a Hepatologist (liver specialist) or a Gastroenterologist.
Ask your doctor if you should be screened regularly for liver cancer.
If your doctor suggests a liver biopsy, do it (it doesn't hurt and it is very important).
DON'T DRINK ALCOHOL! (it's like pouring gasoline on a open fire)
Exercise and eat a healthy diet.
Control the stress in your life.
Keep your immune system strong.

I believe that it is very important to be informed. As in most things in life there isn't only one right path; you should learn as much as you can from doctors, books, people who have the disease, the Internet; but only you can choose the right path for you. Many people choose to be treated with interferon/ribivarin, other go the holistic path, others do both. Talk to your doctor about what is right for you.


We are opening up a discussion on Hepatitis C with the hope that the many people who have Hep C or love someone with Hep C can get support and strength from others. Please keep the discussion kind and respectful. Remember that this will not be a medical site but only a support group. Always check any tips with your doctor!! Many doctors are well informed about alternative treatments and will support a treatment that may help and warn you away from something that could do damage.

Hepatitis C is a lifelong challenge and your doctor should be someone you feel comfortable with and will really listen to your concerns.

Please help us support Hepatitis C research; if you can't make our benefit, you can still send a contribution to:

Unbroken Chain Foundation
Hepatitis C Research
PO Box 10188
San Rafael, CA 94912

HEP C is not a death sentence but you must stay informed and try to be as healthy as you can be. I personally took a 48 week pegysis/ribavarin(it was no bed of roses but DOABLE with the help I recieved here on the zone) treatment regimen and I have been undetectable for awhile. This may be your solution or maybe not. I would get the results from a biopsy with a well recommended gastro or heptologist and take it from there! Keep coming back very often!!
Peace
RTD

Thank you all for responding so quickly....Much love to you all. I'll let you know what is up when I hear more.

Welcome Justin,
I'm not here nearly as much as I would like, because Of time contraints...... and it's been a long, tough, and difficult year for me, however I wish you the best.....and will put in some positive thoughts..... and prayers for you in the next few weeks!! I hope all turns out best for you, and your able to make some good strong choices which will turn out best for you over the next few years.

There are a great deal of very loving and caring people at this Hep-C site....... as well as some who are brilliant, with loads of good info., and good info. site places to reccommend that you visit. Remember one thing Justin.......... "Knowledge is our friend, and wisdom is the beginning of knowledge".

I hope to catch you around on the bus.....or at a show somtime. A lot of the coolest and best frineds I have, are people I've met at The PhilZone. I saw "The Dead" in Charlottesville on April 15th this year. I saw "Ratdog" at Innsbrook Pavillion July 7th, and I've seen DSO 2 times as well this year. I still have a few more shows in mind , but more about that later.......

Take care........best regards to you and your loved ones.Peace & Love,
Martin

Welcome Justin,

Please listen to these folks. They know what they are talking about.

All the best to you.

Welcome Justin!

Welcome home Justin.
Pull up a chair and use this place to help. Vent, bitch, ask questions....lots of good people here. And we all understand.

Wellcome aboard Justin...

Welcome, Justin.

Listen to these phine pholks, they have a lot of good info.

The doctors lost my viral load results.....ggggrrrr waiting is the worst part

Sorry to hear that the wait continues, Justin. Were they able to tell you what your genotype is?

That reminds me, Justin - remember to ask the docs for copies of your test results and other written documentation. This is not the first time they screw up.

Aloha Justin,

E Koma Mai from the West Side of the Big Island! As all others have said, don't panic, remember to breathe and explore your options when you have all the info. I am lucky and am a responder, clear of the virus for 6+ years. Medical professionals here in the islands can be a challenge, but there are some good ones. Email me if you want more info. I am assuming you are seeing someone in Hilo.

Malama pono,
Claudia

"The doctors lost my viral load results.....ggggrrrr waiting is the worst part"

"viral load results" in and of themselves are not the most important number to focus on. VL's go up and down as the virus has cycles. Some doctors no longer even test for viral load because one VL test is nothing more than the count of bugs you had that day. Some people have high viral counts yet suffer little impact from them while others can suffer damage with low load numbers. You need all the numbers to get a decent picture.... maybe a biopsy also.


Did you find out your genotype and Alt's/AST numbers?

"Waiting is worst"

lost results!!!
I have been there and done that and by the way I have responded to treatmentThere a light at the end of the tunnel!
welcome to the world of Hep C
Thats OK, they'll get them in the meantime no news is good news. Keep your STRESS down as stress can make anything negative get worse. No sense projecting any gloom and doom You'll be phine
Peace
RTD.

My liver enzymes are completely normal (ALT's,and what not). Liver working fine doc said. Yaya...Still waiting on Genotype. I should hear more in the next day or two..Panic attacks still a big issue, but over all I have a better outlook on all of this new, news

Very good news Justin. I can relate to the attacks when I was first Dx'ed.

They will pass.

All the best to you.

Completely normal is as good as it gets!


Are you getting help with the "panic attack" issue?