Spouse didn't tell me he was diagnosed

[Rainbow]

There is no way I can tell how much damage a person has by their symptoms.  However, studies have shown that people that complain of severe fatigue tend to have higher viral loads. 

Fatigue can be so subjective though.  I once went to a Hep C conference and one of the Hepatologists who was lecturing, said, "Raise your hand if at this very moment you DO NOT feel tired".......

And nobody raised their hand......LOL

star

[willy]

There are also medical professionals who are infected.  They may have become infected decades ago before the medical profession was aware of the hazards.  All of my contacts with doctors have been largely positive.  If they are truely up to speed on HCV they won't treat you any differently than anyone else; maybe even a bit more compassionately when you tell them.  When I told my dentist they just kind of shrugged and thanked me.  It wasn't going to affect the type of care they gave me.  Indeed, they actually have to assume that ALL of their patients have blood borne diseases since most of us that have HCV are undiagnosed and unaware of their condition.  In not telling people about our condition we sheild ourselves from 2 groups of people; those who might hurt us or judge us....... we also sheild ourselves from those who support us and who can help us.

Just as it was theraputic to be able to share some of your questions or share your feelings being able to actually start taking some steps to solve some of them will make you feel much better.

Best,
Willy

[Hank's mom]

Naomi Judd is one of the most well known health professional who got infected as an nurse, ER if my memory serves. Checking out her web site might be another door for you hubby to go thru for reassurance as well as yourself. She's been a great advocate for awareness and open-minded kindness for those who are infected.
momxfive

[willy]

He wants to wait until I am out of nursing school less than a year and working so that we will have group insurance.

But even then I don't know if it will make a difference on coverage. I just want him to be treated if needed or know where we stand.

I am scared to wait any longer in case it may hurt his chance of recovery or quality of life.

We have a family doctor but that doctor doesn't know. I think we should tell him and see where he wants to go with it. He will probabley refer us to someone.
There is a doctor in town who treats Hepatitis. I have heard good things.

This is a slow moving disease.  You may very well have some time to wait before treating.  That doesn't suggest that you also wait to find out one's status.  Spend some time and find a good doctor you are comfortable with.  Reading in boards such as this one you may also become a little more critical in your assessment of doctors; they are not all alike.  Some are clearly better than others, particularly where treating HCV is concerned.

I guess I was tested for hepatiits upon entering nursing school. I am so in shock I am not thinking clearly.

We can't do anything without answers. And to get those he needs to see a doctor and have tests.

I agree.  I also agree that the likelihood of transmission to you was always slim and perhaps even moreso since he became aware of his HCV positive status.

Do the symptoms tell you anything or do you prefer not to comment? I understand. I just wanted to be prepared. I know it is hard to answer based on subjective information.

It is a really difficult disease with many different variables. It is hard to understand. You hear it can't be cured and then it can.  That it can be mild or potentialy  fatal.  Every case is different and no one can answer until tests are done.

I feel better tonight at this moment than at any other.

NO, the symptoms are not a good indicator of liver damage and disease progression.  Liver function tests (LFT's) can only give you an idea, and viral load will not indicate liver damage.  A biopsy is considered the best method.  There are also a fibrotest (Google or board search "Fibrosure") that is a simple blood draw, cost about 300 dollars and results may be within a week.  It's not as effective a determinator as biopsy but sometimes considered about 85% accurate as one.

Being a nurse comes a great responsibility. You have the power to assure a person just by the title. I was reassured just by you telling me you were a nurse and were going to answer my questions. Somehow hearing from you and the way you took charge and broke everything down has really helped me to be calmer and get my thoughts in order. I will always try and remember that.

I am going to bed now and get some sleep, hug my husband and count my blessings.  

star gave great answers and we are fortunate that she lends her expertise here.  (Thanks, star!)

Willy

[dlynn]

Thanks, Willy. Hope you had a great birthday.
Thanks to all of you. Those that posted, read and prayed. And especially those that didn't post, for I am sure some of you wanted to tell me to get over it and help my poor husband. (some did actually in a gentler way).  I thank God for all of you.
Things have really improved since I last posted. I finally had a heart to heart with my husband. All the things each of you have posted were things he expressed that he was feeling and concerned with. I am glad I had the board to help me the past few days so I could understand things he shared and I was able to share things I have learned here.
I underestimated his research and knowledge. He hasn't other than diet and supplements. I was actually more informed than he was. He has been trying to put it out of his mind and believing for the best.
How alone he must have felt. I' m done with anger towards him. Now angry with disease. Much better. I have forgiven him for not telling me and understand more why he did what he did. He was scared of his position, what people would say. All the things everyone here has told me. I thought because he councels with people  he should know better. Sadly it was this reason that he was afraid. He knows first hand from them how they have been treated and hurt. He also didn't want to put me under more stress with school,  threat of finances, insurance.......all the many, many things that we are all aware of now. And really doesn't seem to matter so much anymore. Just getting him well. I feel so bad for him, but it will be okay. The future looks better. The only thing to fear is the fear itself. Once something is tangible and out in the open we can deal.  The keeping it inside and unspoken is so much worse. I just can't tell you how much help this board has been. I told him about it. Don't want him to read my feelings just yet. Maybe later. He's glad I have people to talk to and that I am researching options.  Main thing is we are talking with each other about it together.
Maybe some one else is reading my post and they haven't been able to share with someone they love and this will help them.

[Rainbow]

Willy...

"star gave great answers and we are fortunate that she lends her expertise here.  (Thanks, star!)"

I'm lucky too Willy.  To have found a team where I "fit".

star

[Ella]

Dlynn - I'm so glad the situation seems to be sorting out.  Sometimes the calm after the chaos is better than before - hope you both find the necessary strength in each other to go ahead as a unit to face this thing.  Your first reaction was natural, and now you've found the courage to forgive.  God bless you both.

[Rainbow]

dlynn....

Before talking to your doctor about getting a biopsy, make sure that a VIRAL LOAD test was done.  That will confirm that he has the virus and didn't clear it on his own.

Recently, I met someone at another board who had been told that he had Hepatitis C and he said the test "had been repeated several times by two different doctors."  He had read about the symptoms of Hepatitis C and had made a list and highlighted all the symptoms he had. 

He obtained copies of all his labwork since getting diagnosed with Hep C and when I reviewed it, not only was all of it normal (platelets, albumin, liver enzymes, etc) but a viral load was never done.

When he finally had one done, it showed that he had no virus......he had cleared it on his own.  He had gone YEARS thinking that he had Hepatitis C.  He truly believed that he had all the symptoms.

The mind is a funny thing.  I'm sure being in nursing it has happened to you.  I graduated from nursing school when I was 20.  When we studied GI, I was sure i had an ulcer.  When we studied oncology, I was sure I had colon cancer....LOL  When I developed a sore throat, I thought for sure it was Diphtheria.  It's a wonder I lived through nursing school.....LOL

Many doctors are not familiar with hepatitis C or the tests needed.

How do you find a good doctor?

You ask the people that know them well......the nurses.

star





   

[eskimogirl]

Hi Dlynn,
Just wanted to add my 2 cents.
This board is always full of good people and good advice.
My ex husband and kids are clear of this disease and still are healthy.
No need to worry til you get your tests back.
I have always been told by people here to ask questions.Ask as many as you need to.
You WILL be ok!
Keep comin back!
Cheryl

[Helen]

dlynn,
 Im so glad to hear things are going better, guess he just needed to get over the shock that you finally knew what was going on. Your relationship may just come out better for it as long as you both keep communicating. I hope that you will continue to visit and keep us posted we will be here to support you and your husband in any way we can.
 

 Take care, Helen 

[dlynn]

Thank you all. I am having the original test results mailed to us. The Dr. that called my husband and told him over the phone has moved and the clinic is mailing them on Friday. We don't have any idea what is in the records or what was done. I know a liver panel test was done prior to that and then a routine visit revealed something. So I think that was two different alerts. It was over seven years. I'm trying to find out more information. I read on some advice Willy gave me and found out there are labs you can purchase and are confidential such as the one Sylvia suggested (Viral Load Test). I will see what is in his medical records, should have them on Monday. I'm surprised she didn't have to talk to my husband, have a consent form or anything, just said she'd mail them.
But I don't care I just want to see what they did and what he charted. Scary though. Definite no-no.

[19Dragon52]

(((dlynn)))

I am so very happy to read, hear and see how much better & together you are sounding since your first post.  As Helen mentioned...we are here for you & your husband and you both have all our Support and much Love.  Please keep us updated not matter WHAT.

God's Blessings.....

       

[robin]

DLynn...just a quick note here but your medical records are exactly that. Your husband has a right to have access to any and all his medical records and he can list on the HIPPA form anyone else who may have access to his records. I'm also a nurse...worked ER and then went to Pediatrics. I found out while I was at work that I had Hep C. I didn't try to hide it but found that I had a great need to talk about it and so I did. I work on a hep-C street team and pass out postcards...give dragon pins away and wear a tee-shirt with the known modes of transmission on the back of it. Most people are curious and even my doctor said he was surprised that someone would wear a shirt that pretty much said...I have Hep C. My response was ignorance is no excuse and that being a health care professional...he should be aware of that. Transmission routes are so tricky but many people just automatically assume it was from drug use. My "ex" and my hubby are both negative...that's a hard thing to call your ex that you don't like and have to tell them, but both my children who were born by C-Section are all negative. We have shared razors and personal items but that was out of ignorance...we didn't know any better. You are doing the best thing for yourself you can do right now and that is finding out facts about the disease. I do believe that your husband should have been more upfront about the Hep but for every 5 people with hep...2 don't know (or I've read that statistic). You have seven years invested in this man, who outside of having the hep, seems like a pretty good catch. No one is perfect and even many members of my family won't admit that I have hep...they just say liver disease. There are stages for grief and I hope y'all can have a heart to heart conversation and find out where his head was and what he felt he had to lose or gain if he had told you. If you had known that he had hep...would you have married him? So sorry this has happened to you...life isn't fair. I do wish y'all the best of luck and keep in touch. Also think...would you be better off without him in your life? Keep your spirits high...robin