Hep C Discussion Forum

Brian1412 · Guru

RE: New Just found out

Huey · Guru

In my case and with the insurance I have, I choose a Specialist that was in the same Network as my primary. I chose Dr. Nav Grandhi who is not only a board certified GI Dr, But also has a masters in micro=biology. It is this that caused me to choose him, I know that he would understand the complex chemical reactions that can take place in the human body. You don't need a Doctor like that unless something biggrin goes wrong. and if it does,you won't someone who know what they are doing .

Brian1412 · Guru

Yes, I am discovering if I have smaller meals more often, it is better .

I am getting close to a Dr hopefully, and I guess I have to do tests again etc, as my original Drs were not interested based on my insurance . So I still have no idea of what kind etc. I guess it doesn't matter unil I get the Dr

I am very encouraged by the number of treatment advances that have been made. Now that I have an idea of what has made me so tired, I can adjust that some.. so far so good

Huey · Guru

HI,, It is going to work best if you eat 6 vary small amounts a day VS larger amounts only 3 times. stay away from sugar for the first two or three weeks of Tx/ and take lots of Fiber every day,, This will help/

Brian1412 · Guru

One other thing. It seems that my liver area gets painful if I do not eat at regular times.. Is not normal to this?

Brian1412 · Guru

Thank you.. When they told me about the Hep, I was astounded that nobody ever thought about anything but the gall bladder. When they kept saying my AST's were " elevated" I specifically asked them if it could be some form of hep, as I travel a lot in the past.. Answer was always no.

I did have A and B shots about 5-6 years ago.. again for overseas travel

I am reading as much as I can, and also trying to just go on with life.. I will make sure I get all the results and post them .

I have some close friends, experts from the cancer days who are finding a expert for me in this deal . They will find the right Dr so that is a relief

I appreciate your post very much. I am focused on the solutions

Tig · Admin

Hi Ben,

I experienced a number of strange symptoms and feelings over the years I was dealing with HCV. I had several trips to the ER for abdominal pain that was also written off to gall bladder problems. I eventually had it removed which helped some but the HCV continued to do its damage as well. It's a very pervasive disease and affects so many systems. I think once you understand that, just knowing it affects so many things negatively, helps you get a grasp of the problems it causes. That understanding helped me build the determination it took to finish treatment and begin recovering.

It is widely agreed that it's important to receive the vaccinations for HAV and HBV. Your Primary Care or Hepatologist can do that for you. Just let them know you haven't had them done next time you visit the office, it may take 2 or 3 visits to complete. It's a good idea to gain the extra protection. As far as your caloric intake, I would concentrate on a balanced diet, not one that is high or low in any specific item. One thing to keep in mind is to limit any iron supplementation, because it's difficult for the HCV affected liver to process.

Good luck next week. If you can think of any other questions, please let us know. There are a lot of good, qualified doctors out there. I'm sure you'll find the right one for you, just don't get discouraged by the actions of the few narrow minded sour grapes out there!

Tig

Brian1412 · Guru

The only possible way I could have picked this up was either during cancer surgeries years ago, or a spine surgery also about 8 years ago. In both I had blood and "new parts" put in from donors .. I also wonder if a exposure to raw sewage in a rehab project in which the whole sewar system backed up into my shower big time . It was nasty surprise

I was fine energy wise until about 6 months ago when my energy level drastically changed to no energy . I thought it was allergies or massive mold in the building rehab

Brian1412 · Guru

DR who treated me in ER ( I almost died because of blood loss from bleeding ulcers) and where and when I found out about the hep, now refuses to see me or give me the results type etc, because of my insurance , which is provided by the same Health care system where I was diagnosed. Go figure...

That is par for the course at this place.. She even said when she first told me that I could just go get a transplant... Really?

So, I have been reaching out to Drs who are experts at this and have phone consultations on Monday.. I will find someone .

I am still feeling totally wiped out, bizzare pains etc.. Is there anything that this may be indicating something? Or is it just normal to having Hep C?

I have been reading the studies on the various new treatments and am highly encouraged by what I see. I also see something we all can do to help others. The cancer I had was the same one at the same time as the now discredited Tour de France Champ ( now aka cheater) and we formed what became the yellow wrist band Cancer advocate Organization . Despite of his cheating, the organization has done much to help cancer fighters and continues to do so and thrive.

My point to that disclosure is I am seeing where the cost of these new, promising treatments are a roadblock in a sense to people getting them. I guess I have found my new cause , which is good as I will feel like I am doing something . We can change this.

I am also limited my work schedule, as I just don't have the energy and feel spacey most of the time . I go full tilt on finding a Dr on Monday . I knew the one at the hospital was not the right one .

One last question. I read somewhere that I should get shots for Hep A and B.. Is that correct? Also, Because of the "gall bladder" disgnoses, I have been practicing a low fat diet for quiet some time .. Should I continue that? I have seen somewhere on here that limiting calories is something to practice... Is that right.

Again, I thank all of you for listening and your posts.. I am just trying to get as much info as I can .

Thanks again,

Ben

Loopy Lisa · Guru

Brian1412 wrote:
Hi Lisa,

I am in the USA.. I am not doom and despair. cancer taught me that lesson long ago. The right information and the right Drs I am sure as vital with this as it was with cancer.. I am lucky in the sense that I have thru my cancer days, relationships with some of the best Drs in the world, and they have been referring me to experts in the treatment of this so I can find the best Dr in my area. The ones I was assigned , I am not comfortable with in any fashion . So today I see an expert a DR friend arraigned.

It all just came as a shock, as again, I have on multiple occasions presented to the ER and would get the diagnosis of a gall bladder issue.. So this has been going on for some time, but really hit me as to energy level about 6 months ago. I was wiped out, so I have no idea when this started beyond the G-Bladder visits. It has to be related .
I applied for a state grant for financial aide and I received approval this morning so I guess I am good for a year of financial assistance. That is a huge relief

I appreciate the response and positive words

Hi Brian,

I'm glad you have wrapped your head around it. A lot of us presented with symptoms that were misdiagnosed. I went through several tests feeling that something was wrong being told I'm fine. I'm sorry about your cancer and then to face this, seems ike you have been dealt a tough hand. There is another lady on this site that was diagnosed with cancer and HCV at the same time. it often astounds me the strength and humour people find in difficult time.

Keep us posted :)

Huey · Guru

Brian1412 wrote:
Hi Lisa,

I am in the USA.. I am not doom and despair. cancer taught me that lesson long ago. The right information and the right Drs I am sure as vital with this as it was with cancer.. I am lucky in the sense that I have thru my cancer days, relationships with some of the best Drs in the world, and they have been referring me to experts in the treatment of this so I can find the best Dr in my area. The ones I was assigned , I am not comfortable with in any fashion . So today I see an expert a DR friend arraigned.

It all just came as a shock, as again, I have on multiple occasions presented to the ER and would get the diagnosis of a gall bladder issue.. So this has been going on for some time, but really hit me as to energy level about 6 months ago. I was wiped out, so I have no idea when this started beyond the G-Bladder visits. It has to be related .
I applied for a state grant for financial aide and I received approval this morning so I guess I am good for a year of financial assistance. That is a huge relief

I appreciate the response and positive words

I looked at my network providers web site and found a Dr. with not only is a gastrologist but also a microbiologist . I knew he would be the "Go To" guy in my area for this kind of thing. And he Is, I think the Dr's that are curing us should get a trophy for each one of us cured. I can't wate to give my Dr. His.

-- Edited by Huey on Friday 20th of June 2014 04:37:00 PM

Brian1412 · Guru

Thanks Rob,

I am trying to get a hold of them today. They should have all the particulars by now . I will post them when I get them . I am ready to do what is needed to wipe this out... I will stay in touch and certainly PM you. Thank you for the offer. I am not doom and gloom. I understand the bottom line is I have to deal with a health problem. I know of the studies etc, and advancement in treatment . I will get to the right drs in very short time.

I am all over it.

Brian1412 · Guru

Hi Lisa,

I am in the USA.. I am not doom and despair. cancer taught me that lesson long ago. The right information and the right Drs I am sure as vital with this as it was with cancer.. I am lucky in the sense that I have thru my cancer days, relationships with some of the best Drs in the world, and they have been referring me to experts in the treatment of this so I can find the best Dr in my area. The ones I was assigned , I am not comfortable with in any fashion . So today I see an expert a DR friend arraigned.

It all just came as a shock, as again, I have on multiple occasions presented to the ER and would get the diagnosis of a gall bladder issue.. So this has been going on for some time, but really hit me as to energy level about 6 months ago. I was wiped out, so I have no idea when this started beyond the G-Bladder visits. It has to be related .

I applied for a state grant for financial aide and I received approval this morning so I guess I am good for a year of financial assistance. That is a huge relief

I appreciate the response and positive words

Cinnamon Girl · Guru

Hi there Brian, welcome from me too.

I`m sure it must have come as quite a shock to you to get the diagnosis of Hep C, and I think most of us here can relate to that, but as the others have said, it really isn`t as scary as you think. This is a very treatable disease nowadays especially with the new treatment drugs that are now available in the U.S. and with more coming along in the pipeline.

The most important thing at this stage is to take it one step at a time and try not to be scared. Once you know your genotype you`ll be able to discuss the most suitable treatment options available to you and you can take it from there. Side effects vary from person to person and according to which treatment you`ll be doing, but this is quite likely not going to be such a battle as you think it will be.

I`m glad you found us, you`ve come to the right place and you`ll get all the support you need here. smile

Fireman Rob · Senior Member

Brian,

First, welcome to the forum! Second, like you, I was devastated by my diagnosis this year and thanks to new treatment options and the great folks on this forum, life is looking up.

Your family doc will likely refer you to a specialist and from there you can discuss treatment options. Try to narrow down the date you were likely infected if possible? For me, it was likely a commercial tattoo from 2004. Remember, it takes years, sometimes decades for this virus to cause irreversible liver damage. However, it will and does change the quality of life as it sounds like already has for you (fatigue). Get treated at your earliest Opportunity. IMO. That said, if you're Genotype 1 like me, October is the month to watch for a new and almost perfect treatment option.

Yes, the costs are extremely high for these new treatments but just work through your insurance and apply for assistance if needed. Your doctor should have this info readily available and "should" help you with all of it.

Next, after finding out your genotype and viral load, get back to us here because some doctors aren't up on all available treatment options. It will likely take a couple of weeks to get the results from your blood work after seeing a specialist. This will give you plenty of time to arm yourself with the information needed to make good decisions and converse with your specialist. Furermore, don't expect this to be a fast process to treatment. It usually takes at least a couple of months to get all of your information and approvals organized.

I know it's a rough discovery but hang in there man! I just started treatment and things are now going great. Feel free to PM me anytime with further questions.

Oh, and tell no one that absolutely doesn't need to know. I wish I wouldn't have told anyone but my wife and those here.

Best, Rob

Marypetrecz · Senior Member

I'm kinda new and learning...the people here are great....very helpful, supportive and knowledgable. I had a regular doc appt and mammo....they found breast cancer and hep c all at once....whew....we all have stories,....

i found my doctors through a very well known and cutting edge hospital....I'm lucky enough to be close.....my family doc ran the bloodwork and then sent the info....my first bout of treatments were terrible and I couldn't do them after halfway....interferon is rough...I thought it was worse then chemo....but that's just me....so I quit treatment and waited until I saw all the work being done with sovalde...then. I jumped....my family doc sent the paper work, the hep docs set the appt...and I'm off and running, half wy through very easy treatments and looking at being cured.

So do your homework, consult your family doc....figure out where you want to go and the docs will help you through everything,

as far as what people think?....I agree....pass the info on a need to share...or need to know until yu knows what's going on and are comfortable enough to talk about it. I have no problem talking about it......hep has a stigma....but it's what it is....I never did iv drugs, or drank, or had promiscus sex....and I have it....it did have blood transfusions, and i did run on an ambulance back in the scoop and run days...no gloves....I am more than happy to educate the ignorant masses....lol

it is scary...and it can be tough physically to handle...but you are in a wonderful time, the docs and meds are amazing.....they can CURE a virus. It isn't a death sentence....I heard that 3 out of 10 people have it and don't know it....I don't know if those numbers are true, but there are a lot of people with this disease.

hang tight....it'll be all right....

Isiscat2011 · Guru

Hi Brian:

This may not be quite the battle you think it will due to the new hepc treatments that are coming out. The first thing to do is find the best doc you can. Hepatologists who work in teaching hospitals and university settings tend to have the most hepc experience particularly when they have clinical trial experience. Once you find a good doc the next thing will be to have your liver damage assessed.

You will, of course, need to know your genotype before you can know the best treatment option for you. The doc that diagnosed you may already have done the necessary blood work for that. At this point it is best to just take it one day at a time. I would tell people on a need to know basis until you have had some time to digest it yourself and regain your equilibrium.

We will be here for you.

Loopy Lisa · Guru

Hi Brian,

Firstly welcome to the forum. Where are you from - country?

There is a lot of out-of-date information on the net that really can put the fear of god up you. I was diagnosed over a year ago and the first thing I did was scour the net - BAD MISTAKE. Most of the personal accounts are the worst of the worst, and it left me half dead with fear.

I am a hep sufferer and once i began to learn about the condition and therapies out there (past/present) it gave me a better perspective. I have pain in my side too and I don't have any liver damage. It can be that your liver swells and the membrane surrounding it is giving pain signals. Please don't panic until they have finished their tests.

There are a lot of new therapies now that are non chemo, at the moment it is a postcode lottery, but this will change in the next year or so when prices drop.

We have many people with Hep on here from cleared of the virus, waiting for therapy, failed TX and non-responders. Some have level 4 damage and cirrhosis, and others post-transplant. Once you know it means it is not a death sentence. It is those that never find out that have the biggest consequences, how can you treat what you don't know about?

When I first came on the site, I was full of gloom and almost desperate, everyone eased me in and supported me and made me comfortable with my diagnoses. So you are not alone.

All the best,

Lisa

-- Edited by Loopy Lisa on Thursday 19th of June 2014 10:45:57 PM

-- Edited by Loopy Lisa on Thursday 19th of June 2014 10:47:18 PM

Huey · Guru

Hi,, WoW, what a story,, Everybody here has a story each in itself unique . At this point you have to determine a few things, first whare are you, that not only is relevant to what kind of Hep c you have most likely but availability of treatment. If you can get a all oral Tx. the side effects will be mild for the most part depending on your genotype and viral load.

"Four out of Five Voices in my Head say 'Go for It!'"

Get Test done

Go to www.gilead.com/.../support%20path%20for%20sovaldi

I am working a full time job in a factory setting. I sleep a lot and have taken a FMLA benefit available to me in the USA as a precaution, it has been a wise choice.

-- Edited by Huey on Thursday 19th of June 2014 10:47:38 PM

Brian1412 · Guru

Hi All,

I just found out I have Hep C and not the gall bladder issue they thought it was.. I found out when I had to go to ER for Gall Bladder.. This was kind of the beginning of a whirlwind for me ( and I am sure others). I am not sure which type or damage etc etc. I do NOT like my Drs. They seem totally disinterested in anything but the discovery and the possibility I was IV drug user ( Never) or other statistical infor they like so much.

It all made sense when I found out. I have been complaining for some years about my " gall bladder" and side. My AST's were always " slightly elevated" but caused no concern to them . About 2 months ago, I had a bleeding ulcer and my AST were greatly elevated and I was very tired.

Here we are. I had TC cancer 17 years ago, so I know a battle when I see one. I also know and understand the value of a support group. I will need you and am sure I will often. I have been researching about Hep C. I am not sure what type etc I have but will see the Dr shortly, fire her, and find a good one . I know this is treatable, but at a terrible cost and conditions. Chemo was also but this frightens me more.

How do I explain how wiped out I will be from treatments? How do I find the right Drs? It was always true that friends and such were scared of my cancer.. Are my friends and such going to be the same way ?

Am I going to be able to continue to work? I am exhausted now, but just made it on a 16 city tour, but only made it by sheer determination .. No way was I going to miss playing Bonaroo

But now time to deal with this full force. I will read thru the site tonight, but I am open to any suggestions and directions to what I really need to be aware of.. I don't drink or anything like that, have been watching my diet as to the " gall bladder" issue etc.

I guess I need to know now, where to start.

Any help, suggestions treatment options etc would be greatly appreciated.

Thank you

Benji1412

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