Need to Vent

[Drarig]

4 years ago when I was diagnosed,I made a personal decision not to share my health probs w/anyone for obvious reasons because of the "stigma & ignorance" attached to HepC.   I was concerned for my children, so informed their pediatrician, to "hand-write" a scrip for them for bloodwork. I told him if they were negative, it wasn't necessary to be permanently etched in their files about "hepC".  I explained NO ONE knew except my husband & my two docs.  I successfully got thru tx the past year (doing Shot #48 this Friday!).  Today my hus took kids for well visits as I had work, & the Pediatrician said they should go for hep c tests again.   He then asked my hus, "who has the hep c, you or your wife?" right in front of my kids who never knew!!!!!! He obviously had it in their files after I specifically instructed him not to. To make matters worse, it's even  printed on their invoices out of the billing office about going to be tested for hep c antibodies!! I am LIVID! My hus was shocked, but just answered his questions instead of changing the subject & requesting to speak w/him privately.  I certainly didn't need my kids to find out at this last stage of the game that I was sick.  I am so hurt & angry as I have managed to keep this away from them & this professional just blurts it out after I specifically told him not to.  Thx for hearing me out. I'm sorry for venting, but you guys all know what I'm going thru.

[Cindy10]

I have not told to many either for this reason, if doctors can't handle how will family and freinds. It is discouraging. I told my best freinds and had to explain it to them, but that was it (and thank god they are true freinds). Never even told my family. Mom suspects something up and questions me all the time, but I know she could not handle it.

Hubby on the other hand told his family and freinds and he says " I dont give s..t what people think".

[Drarig]

NY Girl, I meant to address my comment to you directly, but was so mad yesterday, I didn't pay attention:

How the heck are you? You have been on tx so much longer than me & so many others. Even tho I had a fairly easy tx, I could NEVER do what you have done. You are truly my idol. I remember when I first came to this forum after starting tx & feeling alone & afraid, you were the first one to come to my aid mentally & physically (for the riba rash), & I have never forgotten that. Thx you for helping me & all the others you have helped.

[ladybug52]

I thought the dr wanted them tested to stay on top of their health but instead he's worried about his own. Hasn't he heard of universl precautions? What a jerk! I'm always amazed how people we trust can disappoint us. Hope your workout relieved your stress. I tell no one I work with, did the whole female chemo thing with my  a few co-workers but just to explain why I was always going out for labs or Dr. appts. I don't feel compelled to tell or educate anyone. Wish I were braver but that's not who I am right now. Good luck with the last week.
Bug

[Drarig]

Sorry, for some reason I cannot see your comment or any other comments to the thread.  Not sure if it's a technical issue or not.  

[Cindy10]

How are we suppose to educate others and expect support when the damn doctors dont get it!

[compulsive]

    OMG.

I read your original post and was just - too mad to think of anything to "say".


I just now read the responses and your last post - and I am still just "sputting mad".  I just can't get over the attitude that your Dr. has about the whole thing.  I mean seriously????  Can they get away with this kind of thing?????

  It's great that your on that final stretch with tx, I hope that after all this you at least get SVR.

[Drarig]

Cindy, Amen!

I know what you mean about the professionals, my hepatologist & I had this same conversation last week.  I told him (another sad story) about my primary doc & he was shocked.  I don't want to go into much detail, because I haven't even gotten over it yet, but my "primary" doctor has NOT personally seen me since being diagnosed 4 yrs ago.  He said "I don't know what to do for you -- I've never had patients with this before"  I understand he has to refer me out to a specialist, but it was his tone...  and he has not ONCE in the past year personally called or checked on me while on tx to see how I'm doing.  It's not worth my health to worry about people like that anymore.  AFter this is over, I'm getting all new doctors.   But THX TO ALL OF YOU, for everything.  I get my vl on Feb 2 & then again in 6 months.  After all this nonsense, I hope I can get SVR.

NY Girl, wow, I'm sorry.  I was so outraged before I didn't take the time to respond to your comment.  How the heck are you?  You have been on this so much longer than me & so many others.  Even tho I had a fairly easy tx, I could NEVER do what you have done.  You are truly my idol.  I remember when I first came to this forum after starting tx & feeling alone & afraid, you were the first one to come to my aid mentally & physically (for the riba rash), & I have never forgotten that.  Thx you for helping me & all the others you have helped.  

[Drarig]

Sorry, was now able to get into the thread. I don't know how I pulled it off without people knowing, but I somehow managed to do it.   I lost alot of inches, so I definitely look skinner, but I only lost about 5 pounds.  I do teach 6 to 7 fitness classes a week, so people probably didn't really think much about it, because they know I exercise.  At my full-time job, nobody really noticed,but I did tell my boss (in the beginning) that I had female probs & would be going thru a mild chemo for about a year.  I only told him that because he's very demanding & I didn't know what to expect, if I'd be able to work or not or be able to deal with him, especially mentally.  Turns out, I didn't need to tell him anything because I got thru it ok, as best as I could.  The biweekly Neupogen shot bothered me more than the Pegasys.  Had about 40% hairloss, but I have extremely thick hair, so people probably thought it looked different or crappy, but not that alot of was gone.  I can't say it was easy, but I was certainly more fortunate than so many others on tx.  It could have been alot worse.  My red counts are now just starting to get low, but my white has been critical the whole tx.  Other than that, I'm ok.  Just hope for SVR.  I'm just sorry my last week is with worry because of this pediatrician blurting it out in front of my kids.

[Drarig]

Yes, I know what you mean.  It's not the easiest thing to do, be on tx while raising a family and working a couple jobs.  I'm going on 47, so not a spring chicken.  But I pushed thru & it's finally almost over!!!  This Hep forum helped me thru through the year. Alot of wonderful people here.  Haven't been on alot recently because I have been so busy w/the kids & work, but it's reassuring to know there are a group of people in this world that share the same aches, pain, grief, tears, smiles, accomplishments, etc.  All of you are great support.

[goldyn]

Sounds like you did well with treatment, but your going to feel sooo much better in few weeks , its just waiting on those post tx pcrs is a pain, i go for my 3 month post tx in a couple of weeks will have results in the middle of feb..... how long do you have to wait for your first one?  

[Drarig]

Well, thx everyone, your comments have helped.  But you'd better all be sitting down when you read this one.  I called him (Pediatrician) today & told him I was upset that it was discussed with my family without me even being present.  I then stated that I was also upset that it was printed on their billing receipts under DIAGNOSIS for my children!   It stated: Hepatitis C w/o mention of hep!  That's what is on their records now!  He said to me, " you didn't tell your children??? I said absolutely not.  It was a personal choice & there was no need to worry them, especially if I cleared.  He said I should have at least told the older one!  I totally disagreed with him & told him it's my choice whom I tell.  He then addressed the bill & said it protects him from malpractice.  He needs to have records that my children had to have HEPC screening.  Wow, what if I said I had herpes or aids, would that be on there too??? I said but they were already tested, negative.  He said, but you could still have it, and they live with you and you could be endangering them & they could endanger me!   I Almost passed out!  I could not believe the words I was hearing from a professional!  I normally love this guy!  I said my reasons for privacy were due to the stigma & ignorance associated with this, which includes just about everyone!  People think we're lepers & it was proven today!  I am so sick to my stomach.  I would never sue or anything like that, but why should my poor children have to have this on their permanent records when they don't even have it????!!!  He did apologize but I was still left with the feeling he thought it was my fault & I should have told them and insurance laws are laws, etc.  OMG, I can't even think right now.  Maybe I don't know about the new insurance laws, but if this is right, they sure as he$# aren't protecting me.   Thank God I have to teach some fitness classes tonight because I have alot of stress to get out!!!  Thx, you guys, I don't even know what else to say right now.

[Cindy10]

I have to agree with Grand Oak, I would say something.
I would be so upset. They need to understand privacy issues.

[nygirl7]

I would be past words I'd be so upset I might crack. Seriously.

I'm so sorry this happened to you - what an absolute nightmare.

God.

[GrandOak]

This sounds like a direct HIPPA violation.

You may consider contacting the doctor to identify this and request that your confidentiality be maintained as they are bound to do by HIPPA regulations. You may also the clinic administration on this as well.

While it will not change the past and possible damage it already has inflicted, it certainly would prevent future occurances as well as possibly aiding other individuals this doctor is treating from encountering the same situation.

[ladybug52]

I do know the drill, they are sooo busy and they can be great face to face but then you get in on a busy day and they have to check the chart to remember who you are. It's nothing personal I know, they have so many patients to deal with. Still, maybe you can ask them to write a big note for the inside of the chart DO NOT DISCUSS HEP C IN FRONT OF KIDS. And let you're dr. know you do not need any retesting unless he is doing bloodwork for something else. Well, I wouldn't have it done again at all but maybe he feels he has to stay on top of their health by testing. Still it's your right as a consumer to say no. When I went to get my biopsy, I was so horrified that everyone kept asking why I was getting a biopsy and then "How did you get Hep C?" Was HIPPA never signed into law? Where's the professionalism? I work in healthcare and have seen hep c dx on charts and I certainly wouldn't ask a patient how they got it or how long they've had it.
Oh, well...Great news, one more week!!! 47 weeks is a long time! Good for you for treating and having a family to raise. I sometimes wonder, is it easier younger or harder because you have more to take care of. I'm thinking much easier being older and my kids are grown. You win!
Bug

[goldyn]

I had all five of my kids tested, the youngest being 2 and a half at the time, and Thank God they all  turned up negative , the doc has never suggested that they be tested again and thats been 4 years ago, how in thw world did you pull  that one off not telling anyone? Just my immediate family knew and a couple of co workers new that i was treating with chemo but didnt know really what for.
Did anyone ever noticed the hair loss or tired look, or loss of energy?

[Drarig]

Thx for your comments as well.  Glad to hear I wasn't the only one in tears in the pediatricians.  When I first approached him after being diagnosed, he was very sympathetic & caring.  He hand-wrote the scrip & said if negative, we won't ever need to talk about it again, not to worry, just for me to get better & wished me luck, etc..  Since then, his practice has grown & he's busier, more successful, you know the drill.  So today when my husband told me the Dr. just blurted out, "so remind me, who has the hepatitis, you or your wife?" that just shellshocked me! He was so compassionate and caring when I originally him approached him & today he completely disregarded our privacy discussion.   You know, I cannot wait for this to be over with already.  One more week,Bug!

[Drarig]

Thx for your quick response.  It's so good to share similar stories/situations.  My 3 children are 7, 13, 16.    Old enough to have been paying attention, but hopefully they weren't this time. I got thru 99% of tx, & in my last week when I should be elated, something like this happens to put a damper on things.  I don't know, maybe it's 47 weeks of pegasys, riba & neupogen flowing thru my body making me defensive?  I just felt my trust/privacy was violated when he openly discussed it in front of the last people in the world I would want to know, after I repeatedly told him "keep it confidential from everyone", including my kids.  As far as prescription, yes, it should be on the scrip for the lab with the diag. code, because the lab bills the insurance company direct.   But I was shocked it was on the well-visit receipt that they're going for hepatitis screening. He doesn't charge for that. Why didn't they put down they were being screened for talasymia, too, which my husband has. The receipt only lists the hepc screenings & nothing else.  Which brings me to the next question - they already tested negative 3 years ago, so why do they have to get retested again so soon?  Is that standard procedure or doesn't he know what he's doing?   I'm not a doctor, but I never thought you had to keep getting tested over and over when they find you negative.   My little one was traumatized from getting the bloodwork last time, it was horrible, but the other two were troopers.  It broke my heart because he's terrified of blood & needles, & I never wanted to put that little guy thru that again until he was older.  

[ladybug52]

I totally understand your need to vent! I first found out in 92 and my 4 kids were 4, 7, 9, and 14. I went to their pediatrician in tears without an appt. He came and talked to me. (probably was quickest way to get rid of hysterical Mom scaring others in the waiting room) He was so good about it, told me it was confidential whatever decision I made re: their testing. I waited because I was ignorant of the disease and didn't want to deal with more info at the time. Fast forward to 2006. I had to tell my 28 yr. old pregnant daughter to get tested last year (negative) and I found it extremely difficult to tell the other 3.  It's a very personal decision when and what to tell your kids, not something your pediatrician should have brought up without your consent. But hey, maybe that means there is less stigma to the disease if he can treat it so lightly. (Trying to find a bright side here) At Christmas, my bro-in-law who didn't know I was dxed and treating talked about an adult we know who died of Hep C a few days earlier. Sheesh! I worry about my kids worrying about me. They are all negative, your dr. must think it's more contagious or your not taking enough precautions. Out of room, Bug

[Alady1620]

How old are your kids?

I have twins that are 2 and I just went through treatment.  I had their pedi order hep c tests and the entire thing was handled very discretely.  Sure, it was on the forms that I handed to billing and it is in their records, but there is nothing we can do about that.  Medical facilities have rules, gov't regulations, and procedures to follow.  We shouldn't expect them to change just because we're embarassed.  

The doc should have been more discreet in front of the kids.  My mom found out I had hep c when I delivered my kids bc the anesthesiologist was a big mouth.  I wasn't happy about it but it turned out for the best.