For Chevy and all: Are you telling people about your HCV infection, yet?

[Amerabrit]

Hi chevy, I hope you're having a good day today and feeling well.  I'm sorry you feel the need to isolate yourself from your friends:(  I have started telling those people directly involved in my life about my HCV infection and the responses have been so supportive and kind that I feel a little guilty about not having enough faith to confide sooner.  I thought a lot about why I didn't want to share the information and had difficulty coming up with the right reason. I wasn't embarrassed, I wasn't ashamed and I definitely felt strongly that anyone who rejected me wasn't someone I needed in my life anyway so that wasn't a problem. Since I have always been the strong one, the one people come to when they need help, I finally realised my problem was that I felt inadequate because my body didn't fight off the illness itself.  I wanted to be that strong, I wanted to be one of those people strong enough to fight off the virus without any help from anyone or anything.  Wake up call!  I wasn't that strong, my body needed help!  Once I had accepted that, I felt a sense of peace about it all and I also learned that family and friends want to help me in any way they can and sometimes they need to feel they are helping me.  While I am still telling only those more closely involved in my life, (why worry my 75 yr old mother in England?), if it's at all possible, my relationships are stronger and better than ever. Don't shut out your friends and family Chevy, try harder..  Try to let your friends in, they care about you and love you and want to help you.  
Any one other stories to share?

[cuteus]

"why worry my 75 yr old mother?"  
Only my supervisor at work and two coworkers know.  Mostly because I needed someone to drive me home from the biopsy.
My daughters and my BF were also included.
I feel this is on the need to know basis and,like you,I felt no need to tell my mom, since she is out of state and would worry sick.  I told my parents recently, after 40+ wk in tx, and I think my mom was a little hurt that I did not tell her before. Now that she knows she has called me twice in two weeks(a record).  I have no intention of telling anyone else.  
My medical providers also know(dentist,pcp,etc.)

[Fubarcat]

I work in a  small law firm that I have worked for the past 9 years.  I love everyone I work with and I consider them family.  However, when I found out about my diagnosis, I was determined to keep it to myself for fear of what they would think.  Ultimately, after starting treatment, my work began to suffer (fatigue, brain fog, etc., etc.)  I finally went to my bosses and told them I was having problems and didn't think I could keep up the pace.  They were SO SUPPORTIVE that I was ashamed of myself for doubting that they would be there for me.  They have agreed to modify my hours if need be (I don't take advantage of that) and although they don't ask on a daily basis, they routinely inquire about my health and are truly concerned.  I am blessed to have such good employers, but more blessed because they are my friends and they are concerned.  It is a relief to know that I can count on them when I need to!  I agree with you.  True friends and close family should be relied upon in a time of need; they are a blessing.

[Honey15637]

I have found some people to be very supportive and caring and others seem awkward and don't say anything.  People that are close to me know but I haven't told everyone because one reason,,,is,,,I don't want alot of people worrying unnecessarily.  I mean at this point,,,there is not alot one  could do unless they want to take my meds or clean my house LOL  My best friend,,,When I told her,,,And of course,,,I had just found out and was very upset and she says "oh thats not that big of deal" Other people have that and its not like you are going to die tomorrow and we all die of something.  Ok,,,,True statement BUT....Maybe NOT what you want to hear when you are feeling so down at that point!  Now,,,When she calls,,,,She never asks me about it and has never looked up anything about it or showed an interest soooooo.....Now,,,You guys know why I'm here alot! LOL And of course others have been total support like family but, I hate at times to bog them down with my stuff because I know they worry,,,

[nolee]

After the initital shock wore off and I began educating myself, I'm kind of like revenire, I'll be more than happy to inform anyone that will listen. I've become somewhat of an advocate for educating the masses of this impending health problem that will affect the country financially, Medicare, health care costs for at least 4 million Americans that don't have a clue that they are carrying and possibly spreading the virus. Recently during a trip to San Antonio Texas I saw a HUGE billboard offering free HCV testing to all. Past Surgeon General C. Everett Koop refers to HCV as being the next national health dilemma since polio. I also confide in family and friends and to date haven't felt any negativity directed to me or anyone else with the disease. 1 out of every 2 people I confide in either know someone or has a relative that is infected or going through tx. I also don't really care what others think of me personally and to those who don't like it, I have no use for. I will be at 11/24 tonite and can't wait to finish with SVR.

[woodbeegood]

i told most people i associate with fairly quickly-right after dr called-lol-i work at a sawmill (hence the name)& it's a one woman office (me)-so they had to be prepared for the days i had to miss (appts. bx etc)everyone has been really great & supportive-fortunatly they had already dealt with hep c (a family member of the owner also has it & won't treat)so i didn't face alot of ?'s and "looks". was alittle hesitant to tell my dad since we lost mom just a few yrs ago to the other "C" & didn't want to cause him unnecessary worry-but then i realized that wasn't fair to him. to shut him out of my life when we are we have left-now he even goes with me to all my dr visits

[new-sojourn]

I'm very open about it.  And, the fun thing, almost universally, everyone knows a friend or relation that has hep c.  I'm very proud I fin'd tx and cl'd.  And by everyone, that includes my 80+yr old friends of my mother, the college kids in town, everyone except the 'country club' set.  Maybe b/c my infection was by transfusion during emerg c-sec, I feel no shame-a little anger, b/no shame.  I'm as casual about discussing my dietary changes as others are about their 'low carb' diets.  We joke bout the pre-dx, pre-tx 'fuzzy days' (encepalopathy) and the dramatic post-tx changes-mentally, emotionally, and physically.

The only way hep c will become 'acceptable' to talk about is to talk about it as casually as we do diabetes or erectial disfunction or live colostomies on tv.

[Amerabrit]

Thanks for the input all: Chevy;  I did misunderstand your earlier statement - thanks for posting; you sound good:)
Cuteous: Why do we need to tell our dentists?  I thought about it but what is he going to do?  Wear two pairs of rubber gloves; two face masks or perhaps even sterilize his equipment after he treats me?  Are you perhaps thinking about excessive bleeding resulting from our tx sx?  Because if we were at risk, we would  know that beforehand and not schedule an appointment?  If I sound defensive, I'm truly not, it's just that Dentists would be informed on all blood borne diseases anyway and I don't see the gain in sharing my personal experience with my dentist; what am I missing here?  Thanks:)

[cuteus]

lol...they should all be using universal precautions, no doubt.  my dentist likes to shake hands and I've had open slits in mine and because they wash their hands so often they have sores..why take a chance?
when there is  blood in my mouth and they spray the water  in it,  it can become airborne(blood in the water particles). I have felt it on my face and other surfaces, they might too...i just feel they should be aware since there is so much blood involved.
I did not shake hands with him when my hands were tending to bleed as a precaution. He would not have understood if he did not know of the hcv.
All drs ask what meds you are on anyway when taking your medical history, so they are bound to ask what the meds are for also.

[lookin-up]

I've been very open about hcv, and everyone is supportive BUT the majority of the people don't have a clue about what it is....I should hand out flyers or something.  
I did have one woman slooowly back away from me as I was explaining it to friends, and made her escape.

[DonL]

My wife and grown stepchildren and my brother and sister know, but I haven't told my mother or father (78 & 84). At work, all five employees know and are supportive. My personal friends know since I talk about it a lot. I have an email list of friends who I write to about tx.

I have not told the people I do business as a policy. Early in tx, I told a partnership I've known for 15 years and they were both supportive in person, but stopped returning my emails. It would be nice to tell some people in order to explain the brain fog, but I don't even want to talk about tx anymore, except here. I just want to do the rest of my time without losing too much more of my brainpower.

[AK - Hepper]

I had to break down and finally tell my boss on a previous job. They were pressuring me to work a bunch more overtime than I could handle.
I told him: "I'd love to, but this hepatitis is kicking my ass pretty hard these days."

He jumped back about 6 feet in one hop and yelled:

"YOU GOT HEPATITIS, THAT'S CONTAGIOUS AS HELL!!!!!!"

So I had to explain about the blood to blood thing and he calmed down a little, then he rushed off to the office to tell the big boss.
They decided I didn't have to work 7 days a week after all :-}
Everybody was really cool about the whole thing, couple of guys shared stories about their friends that went through tx, one of them was the superintendent.


On another note, I'm pretty sure I've relapsed. They checked my enzymes at 3 months post tx... 276/110  :-(
Pretty discouraging, but I made a point of not getting my hopes up too high, so I'm not all that devastated.
Nurse tried to say maybe it's from the fatty liver but I'm not buying it. She also said maybe it's from the 3 times I drank after tx but that was 2 weeks before the labs.
Where's all the new magic bullets, I think I'm gonna need one, y'all.

[cindee]

I think everyone I know ....knows I have hep c. The day I was diagnoised...I rev'd a call @ work from my primary care doctor, and he wanted to talk to me ASAP. So I left work and went to see him. I was so "dumb" about hep c. I left the doctor office and went by my parents house only about 2 miles away. I told them, and then I thought I could go back to work. So I did. My 1st cousin had become my boss @ the time, she saw the tears in my eyes. We went into the ladies room and I told her then. We both broke down and cried alot. She had just lost her Mother to cancer and I think she was afraid she was going to lose me too. I did work for about 2 more hours and she went in, w/ my permission and told our general manager. He insisted that I go home and take a couple of days off, to let it all "sink" in. (we had a very small group in our office, @ we were very close.)

I took the 2 days off from work studying all the info I could gather from the internet. It helped me alot. I was also given pamplets @ doctor's office, and shared them w/ my parents, other family members @ co-workers. After I started tx. I had a very rough time w/ the meds. So I was able to work for about 7 wks and then I took the "family medical leave". I rested the whole time I was off from work...and then it snowed....work was called off for another 3 days. I slept so much of that whole time...and I never felt rested at all. Also I worked for a co. that located underground utilities and you had to be 100% at all times. I was not. The brain fog rolled in, and I was afraid I would give the wrong info to a tech. That could have caused someone bodily harm or even death. We located gas, power, phone @ cable TV. Everything but the cable TV could have caused harm or death. So I never returned to work after that.

I agree w/ all the above as far as telling everyone I knew about hep c and how NOT to get it. My Mother never wanted to talk about it, until I relapsed. 48wks plus 4 months!!!! She was definately in denial that I was sick w/ hep c. I mean she could see how bad I looked..it really took a toll on me. But she still never talked about it. I know she prayed for me day @ nite, that's just how she handled it. As for my "close" co-workers, and my cousin...they maybe have called a total of 3 times, since Feb. 2002. That has "hurt" me most of all. I used to call them, but I stopped about a yr ago. They did send me flowers on my b.day last yr. "BIG WHOOP"!!! LOL Since my hubby works there they do ask him how I am doing, but it has long passed...Pissed him off. The contractors I worked closely with call me, and e-mail me all the time. I do have one true friend who I worked w/. He was a supervisor for the techs. (he doesn't work there anymore) but he still comes to check on me 2 or 3 times a wk.

So I think it's up to each individual to decide who to tell or not. My neighbors have been great....w/ all the hours my hubby works...my 78 yr old (man) neighbor cuts our grass and weed eats. He will not take a dime..even for the gas. But we try to repay him in other ways. His wife who cooked for us alot, was just diagnoised w/ cancer this past wk. This has been devastating to us all.(it's already in her liver)...We are praying for a miracle!!!  And then I also have an 80 yr old lady neighbor who cooked for us when I was so sick @ times, and she comes to check on me 2 or 3 X's a day. Her son was just diagnoised w/ hep c about 2 months ago. So from being w/ me she knows first hand all about our disease. God works in mysterious ways...doesn't he?

Well I'll stop rattling on and on.....just wanted to tell you my life history....LOL....w/ hep c!!!!! You are in my prayers as well as everyone here. Much love @ MANY PRAYERS, Cindee

[LvdByGod]

CHEVY, I HOPE YOU GET THIS...I'M SO OUT OF THE LOOP!!! i'm so sorry i did not get back to you on the question of the little sweetheart..."HONEY PUMKIN"....and i hope and pray this note finds you in great condition...i have not been able to keep up with the posts...I HAVE BECOME "QUAD MOM"!!!

"HONEY PUMKIN", would be a perrrrfect choice for you...adorable,sweet,calm,not a fusser,his color is so cute literally a "honey pumkin" color...he has a "peace" about him...he definately is a honey!!! he just opened his eyes a few days ago and is starting to learn to walk around...i must get his picture for you on "hot heps"....but, be warned you will fall in love!!!! i'll try to do this asap...oh God help me have a few moments...with out being so exhausted...

i am "researving" him for you cause people are starting to ask about them....but, i realize you have NOT told me you are taking him or not....i just wanted to make sure if you did want him...he could be yours...

i have been so busy with these kittens i almost forgot i had hepc!!! quadruplet kittens...8 hour job,no kidding....they will be weaned and litter trained on thier 7th-8th week old...i believe...my last group of kittens were...

i will be so thankful...i love them all...but it's "WORK" when they are this little...afterwards thier very easy to care for...just change litter and feed...so simple...but, you obviously know that...our prayer and hope is that they will go to homes that will keep them as "indoor" kitties...

me and bob have already decided to keep at least one or two or...???

...but,we already have 5 cats!!!!...so this is getting silly!!!



chev, if you did want him let me know and we can arrange a meeting place and date...IT'S COMMING UP IN JULY...i will drive to Indiana, no problem, to give this "honey pumkin" to your loving arms...

i could think of no better home than with the sweet caring chevy girl...i am tearing up now... better go...they have already stolen my heart...

adoption to the right home is so important...because bottle raised babies are soooo...special!!! well, all kittens are...

Dear God, please help people spay and neuter thier cats...and keep them indoors, where they are safe and sound...amen

chev, i'll check in soon to see if you got this...thanks...


i hope EVERYONE here is doing well,i do keep praying for the prayer request posts...thank you tonyz for starting the last one...

[Honey15637]

I'm sorry to hear you think you may have relapsed! Had your enzymes gone down to normal during tx and after just completing?  I really don't think having the drinks would do that this long after either so don't buy that one.  As far as rest...if this could be true and you maybe jumping the gun here also,,,,What did your bx show in beginning and viral load and you did the 48 weeks right?  Magic Bullet,,,Yep we are all lined up for that one and I pray you don't need it.  Let us know what you find out!  (((hugs))))

LvdbyGod,,,There you are! I have been wondering how you have been doing and how you are feeling lately?  I knew you were playing mama cat over there LOL  and yes,,,I love cats and have some myself!

[LvdByGod]

AK HEPPER,i'm so sorry you relapsed...oh my gosh, that is so sad...i just heard...you are and will be in my prayers...MAY GOD WATCH OVER YOU AND HEAL YOU AND KEEP YOU CLOSE...love,sandi

HONEY,thanks for the encouragement...CHEVY may be interested in the kitty i named after you....wouldn't that be so cute...HOW ARE YOU? i'm livin...pain has somewhat "normalized" again due to drs increase of hypo meds,it was so intense for awhile...thank God!!!!

LOVE YOU HONEY...sandi

[cindee]

Hey girl, I just wanted to take a few minutes to say hello. It's been awhile since we have chatted. I don't know if you saw my post, but Chev told me you ahd named a kitty after me!!!! That was so sweet! And can you believe as soon as I read her post, I had no idea of where you had posted the names you had given them. When I went to read another post...there is was! I know in my heart GOD took me there. Nothing just happens!!!! It was so sweet what you said about me and why you had named one after me! I do think of you often. Sorry to hear you're so tired...I know exactly where you are coming from. My "new" doctor's sec. called today and I will be having my bx. on Tues. June 8th, @ 1pm, so please say a prayer for me!!!! I know you will.

Also my neighbor who was diagnoised w/ cancer Monday, I think it was...came home from hospital today!!!! It was so good to see her. Her hubby tricked me...I knew they were having new carpet put in due to a water heater problem. He met me outside and said come look @ our new carpet. So I walked over and there she was...sitting in "her" chair and working word find puzzles!!!! I was so happy to see her of course I cried tears of joy. We are praying for a miracle. She has a very rare cancer, tumors inher stomach, and it's already in her liver. The doctor said she's probably had it for 5 or 6 yrs. So sned some more prayers up fpr her and her family.

I hope you get some well deserved rest this holiday week-end. I love you very very much...you are one special lady!!!! Love @ Prayers, Cindee (aka) Sleeping Beauty LOL Right!!!!!

[AK - Hepper]

WOW, so many questions :-}     Enzymes never did get down to normal. The lowest was 4 weeks post tx...99/57.

I did 52 weeks, but I was not on the full dose the majority of the time due to low wbc's. I averaged a little over 80%.

My biopsy in 2000 showed minimal damage with fatty liver.
Viral load was 376,000 IU.

Not scheduled for a PCR till August, don't even really see the point of one anymore. Sure don't want to go through all that **** again any time soon if I can help it.

[AK - Hepper]

Thanks, but it's not official or anything, just a hunch from the enzyme counts.

[Honey15637]

Hey,,,I don't blame ya as its no picnic.  I want to do this once and don't know if I could sign up for 2nd round.  The fatty liver,,,,have you changed up your diet for that?  You definitely have a low viral load,,,I guess your dr cut back on meds for wbc for ya instead of giving you something.  Hopefully,,,it won't be back and like your nurse said,,,maybe due to fatty liver. Keep us posted!

[doll face]

I am so sorry to hear about your possible relapse also. Have you seen the doc yet are you even considering a second round?

I too relapsed after 2months post tx and am now on my second time around. It is much easier on me this time. My prayers are with you as with everyone here. Good Luck to you and keep us posted.

Cindee- Prayers are with you and your neighbor also. It is a horrible thing to see a friend go through anything like that but God does work miracles and we have to wait and see.

I watched my dad go through tx for hep c and now he is 2 years undetected. My step mother go through cancer treatments 2 times now (relapsed once already) just finished second round of chemo. Good Luck to you and your friend.You are a great friend, she is lucky to have you.

[Honey15637]

Dollface,,,I pray that this tx works like a charm for you and you will be done! Looks like you and your family have had your share lately and you guys need a much needed break! God Bless!

Chevy,,,If I lived closer to Sandi,,,Black Chevy would be mine! Me and you have been through alot together and this disease can bring a closeness and understanding,,,,I would be honored to have Black Chevy! We are going to have to find a "special home" for her!  Hey,,,,hope everything is ok,,,,The board has been kinda quiet lately and been missing ya! ((((Hugs))))

[snook_man]

I have not told many people about my infection.. My family all know, my wifes family, but that is about it.. I let my boss know ahead of time, so that she would have heads up to keep my stores under control..My friends are unaware.. Scared to tell them.. I do not want people to feel sorry for me, or treat me any differently than normal.. It is something I know that I must deal with..I will tell my best friend, as we have been through alot together..And you are all right, as people assume your a drug addict.. Wish everyone the best!!

[cindee]

dollface....TY for your kind words....I've been studying my neighbor's type of cancer...it is Signet Ring Adenocarcinoma...she says it's avery rare type of cancer, what I have found is that it is linked to long time diabetes..which she had had for a very long time..it says the outcome is 100% fatal, but I do believe in miracles...like the ones you and I will recieve w/ our second go-round of tx. (by the way) what tx are you doing this time, are you in a study..like I will be? I wish you the best...and did I see your pics on another forum???? If it is you...I know why your nick-name is dollface...the pics I saw where of a very BEAUTIFUL lady!!!!!! Even if it wasn't you....you have a very beautiful heart to go along with your name!!!! We WILL make it this time...I KNOW WE WILL!!!!!! Much Love @ Many Many Prayers to YOU, Cindee

Honey, hey there girl!!!! About the kitty..did you ever think of having it shipped to you by plane? That would work and that kitty sure would be happy to have YOU meet it @ the airport and rescue it from a trip of "flying". That kitty would be in love with you from day one, and I  bet it would never leave your side!!!!

I wish I could have a kitty, but I don't think our doggie "Choco" would like it very much. He is so spoiled rotten, we all have a dish of ice-cream each nite before bedtime. And yes he has to have his bowl as well. It's funny because after he eats it...he runs to the sofa and gets under my heated wrap...shivering all the while.

I've been teaching him some tricks...and the other nite all was quiet...hubby was asleep..g.daughter was @ my Mother and Dad's....I was teaching him to "speak"...well he got it down pat in just a few times, giving him a treat of course..after each accomplishment.

I went back to computer and he came to me....and "kept Speaking"!!!!! LOL That little boy thought that I would reward him w/ more treats!!!!! I laughed so hard..I'm not sure if it was me or doggie that woke hubby!!!! and then hubby had to stay up and give him some more treats...before he would stop "speaking".!!! It was so funny!!!!! Now I guess I need to teach him "to be quiet"!!! LOL Hope you are feeling good and having a great holiday week-end. I was so fatiqued, I didn't make it out today w/ hubby and 2 girls to a movie and to eat out. Oh well, there will be GOOD times to come.  Say welcome to hubby from me and let him know I always think of the two of you. MUCH LOVE, Cindee

[Honey15637]

haha That is so cute about you teaching your dog new tricks! Wow and do they ever learn fast when treats are involved! lol  
Actually,,,I'm laughing at you and Rev's other post about the showdown with the cop! LOL  You are both too funny and I would love to have had both situations on video call it "The Riba Dare"  lol those meds can be powerful!  Hubby says Hi and says you are one brave Lady and always so uplifting to everyone!  And of course I'm nodding and saying yes,,,,She is the greatest!! I sure am sorry to hear that you have been so tired lately and even missed out today on movie and dinner! I know you said before your last tx,,,you were tired all the time also.  I'm sooooo ready for you to get started so we can get you well and back on your feet!!!  Love ya!

[doll face]

Thank you both for your kind words.

I do belive in miracles also. If we didn't then what would be the point in even trying all these horrible drugs, not just once but twice.

I am on pegasys and copegus now. I was on Pegintron and Rebitrol the first time.What a difference.Some times it makes me wonder if this stuff is as stong since the sides are so much milder. Not that I am complaining mind you lol. Only 6 more months to go.

Yes that is me you saw in the picture. Thank you.I am just the proudest grandma alive, (by the way there are new pics :-)  

Have a woderful holiday weekend.


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