Philzone.org Discussion Board: Archive 2004: Hep C Archive: You wanna what?

Something has been weighing heavy lately and I figure this is a place to take stuff sometimes. Ok, yeah I know, no making babys while on therapy and the Rx manufacturors say wait six months post Tx. My Doc has told me that the six months is a standard generic precaution and that for men a much shorter period of time, one month, would be adequate to clear the drugs since they're water soluable and the half-life of interferons is known and because of the way men make their baby batter. I was shocked that he would say that but maybe he knows, ya know? This shit scares me. I mean I've never had any kids and it's bad enough that they're gonna have to share my genes anyway! Does anyone here know of people who have had children post Tx or have yourselves. I know, the simple answer is just wait the six months and I agree but my fiancee will be 38 by the end of Tx and has made it clear that every month is critical etc, etc...

38 is not that big of a deal anymore.
i say wait each and every day of that 6 months.
Better safe than sorry. This stuff is poison and new poison at that. Second. We are talking about children here. What is 6 months out of their life time and yours. To be as sure as you can be that you did everything in your control to have healthy children?? 6 months is not long. If it is the norm, the we know this new shit needs at least that.

Wise counsel, Carol...better safe...

Jeff,

This crap--I mean great medicine put me in the rubber duck ward for a week-end about two months after I stopped taking it. I have a ten year old daughter who I think the moon and stars revolve around. For the childs sake, please wait. Learn from my mistake, please.

Please.

Jim

Yes, and thanks, and I totally agree. I just put it out there because it was stuck in my head (from the PEG?). Guess I'm kinda at the same point Ceilidh is when she desrcibes her situation and attitudes on the 'lab messed up' thread. There is so much inconsistency, differing views and opinions and on&on. Kind of feel like "hey, I'm gonna put my life on hold for a year and a half? well you "professionals" damn well better get it right and tell me something I can believe in" beacause lately its's all too much to deal with and...well things are overwhelming. I'll get viral load results in a couple of weeks and maybe I'm winning that battle, but right now I know this stuff is slowly defeating me in every other way.

My phriends,

Labs fuck up. Doctors fuck up. PEOPLE fuck up. It was said to me once that no one cares about your health as much as you do. That I learned the hard way. After trusting and waiting and believing calls would be returned and waiting some more - I took charge of my own health. I filled up voice mails. I showed up in person. I also put on the lab slips in BIG letters: COPY TO PT. Then I'd walk in the next day and was handed my results. I am the one that told my doc I cleared the virus. He STILL has yet to call me about the last and final one and that was three weeks ago. But he probably knows by now that I grab what I can as soon as I can.

And as far as other tests e.g. radiology, insist on a 'WET READ'. That means your doc will get an abbreviated answer to your test the same day. In most cases, as soon as the test is over. A Wet Read means for instance, if you had an ultrasound to see how much damage your liver shows. The wet read would say to your MD: Yes, some damage to right front, everything else normal. Then, when the radiologist dictates his formal letter to your doc, he gets specific w/all the phancy medical terminology, etc. But the Wet Read will give you an answer ASAP. Insist on it.

I have NEVER been an assertive person as far as doctors go. I was too intimitated and didn't want to piss them off. But when I got Hep C, that all changed. I wasn't content w/being "just another patient". Because not all patients have this frickin' virus. It's not just a sore throat or a stubbed toe. It's about life and death.

So get out there and be a nuisance! Cram those phone lines! Call at night when you get their voice mail and fill it up with Dead music until they call back! Trust me: I got results every time the very next morning. We gotta do what we gotta do. And no one hates me - no one lost their job - and no one ignores me anymore.

With love,

Judith Ann

Hi phriends,

okay it's another day.......Jeff - listen to Carol and Jim, wise people.

JA you are truly an inspiration, I think I best recreate myself and rearrange my doc's attitude.I don't really want to change doc's as he is definitely the go to guy available to me and I do believe he probably has the smarts just not a collabortive worker. Maybe I will go to my reg doc and get him to work with me and "heap big doc" can continue to play God in the sporty fashion he is accustomed to! Maybe that's a cop out??

Ceilidh,

Please, I am just a fool with experience.

Do tell your doc to get those tests done. He can try to cry cheap all he wants, but they are a medical necessity. I don't know much about the system up there in the great white north, but those two words should open many doors.

Keep fighting,

Jim

How does an ultrasound differ in its detail level of results as opposed to a biopsy? When is an ultrasound ordered? What about MRI and liver disease detection? Are these methods used more on people with transplant issues or super advanced disease? Just dont know.and after my crappy biopsy results, somehow, I want to know how that slab o organ is doing right now..at week 22, and of course Ill wonder more at week 49.......overthinking? overtesting?..somehow when it works, the docs and labs deliver competency as well as compassion.....I feel better...when THEY DON"T...watchhhhhhhhhhhh out!

I do not know much about Ultra Sound Had one my doctor was optimistic with results. Liver specialist at group and member said oh..Ultra
Sound is cancer causer(what isn't). I thought oh really then why do you people have it done with our children in us? Now Monay I get an MRI at my request. Last Friday had biopsy. Nasty little trick that they use ultra sound with!
I also demamded my ALT and protein done since it was missing twice...Labs!
I also told my Nurse Practioner that I wanted another virus count. Since I have been off alcohol, doing So beach and extra vitamins..I want to see where I am at before this treatment. No Pharmaceutical Company should get credit for my bringing my count down thru herbs and juices.
She said it is very expensive..Well so is my monthly premiums and I am paying for them to have every d____ test done before I go thru this evil treatment! I go for immuniztions Monday after MRI and I am showing them all the TX info from here you all have provided. And I am telling them I want my count a new so I can see from day one where I am so I can see that I am winning.
I am also reminding them to get the vitamins I can take. In fact I am contacting Pegasys also.
If I must be a lab rat it will be on my terms!

Hey Jeff....

One of the things I remember the most when I did tx the first time ( back in 2001), was those words on the box of meds they sent. It went something along these lines;
"Do not let pregnant women touch this medication!"

That alone scared the "freakin" crap out of me!! I was thinking to myself, "What the heck am I putting into my body?" If something is so strong that they don't want a pregnant woman to even touch it, it's got to be some strong stuff, eh? Kinda made me feel like I was putting rat poison or something like that into my body. I know that sounds rather harsh......but this crap ( I mean this wonderful medicine) is some potent mixture of meds. If it can kill a dragon you know it's big stuff (LOL)!! Anyway...... you heard it from everyone, so I didn't mean to belabor the point.....but just to re-iterate it.

......Matt,
Not sure what the big diff. is between biopsy and ultrasound is, but I would be interested myself. Maybe someone ( these smart pholks around here) will fill us in, eh? I know I just had an ultrasound done in July, but I never got the results. I'm going to request it, when I go for my next follow-up session in Jan.
I really believe however, that a biopsy does tell them a little more about the actual condition of the disease in us though, because when you think about it......that is an actual piece of our liver, and they are testing it to see the condition of our liver, and how prevalent the virus is in us! An ultrasound on the other hand.....is just an actual picture of our liver, and while I'm sure it is most helpful for certain things, I wouldn't think it would tell us that much in terms of the actual content of what is in us!
Does any of this make sense? Just my logic trying to figure it all out.....certainly not any real medical facts. Hope it helped a little, and I think I'm on the right track.......Hmmmmmmm!

you can have a sonogram or ultrasound. pretty much the same thing. OR you can have an ultrasound biopsy. This means instead of a blind stick the person doing the procedure will look at your liver with an ultrasound machine as he pokes the needle in the liver. My first biopsy was blind stick. Then I had an ultrasound each year for the next 7-8 years. This would have shown "growths" on the liver but not stage of liver disease. The last biopsy I had was ultrasound guided. Biopsy is the only way to tell degree of disease. They are not too bad. Anticipation is the worse.

carol, my doc has not done a liver biopsy. only a blood test and that. we are going to start the tx and have another blood test done in 2 weeks. most people think my doc is wacked but i did not want this done. no needles in my gutt! if it can be avoided.

Rose,

If your doc has not done a biopsy, what is he basing his decision to treat upon? One thing that the heap big doc told me last week is that if there is no sign of scarring or other major problem there is no real need to treat. In fact, 70% of hep-c virus bearers do not ever have any related liver problems. He said that the true indicators of need are shown in a biopsy.

I understand your reluctance to have a biopsy, but they are necessary. All you feel is an instantaneous pinch, and the liver is the fastest organ in the human body to heal. Please consider having this done.

Jim

I must agree with Jim, You should get all the tests done. This gives you a better idea of what you are fighting. Also get all your medical information, it is your right to have it. If you have questions then go to the sites that are posted to HepC Awareness. I did. I want to know all the info before the treatment starts, I want to know what is going on in my body so I can see my progress. I was so glad to find this site, reading the threads of those who have started this before me...helps me know that we can fight together and support each other. I am sure everyone here has had the profiles done...talk with family physician, tell them concerns, talk to gastro, and ask family physician to recommend
a good liver man in area. If you go thru all this and they have you on this evil TX without knowing everything going on in your body and mind...Fire the Doctor and get a better one.
Liver Foundation can recommend some. I fired the first one for not knowing me and making insinuations. I was a bone marrow donor..he tried to trace it back to 60"s...I have a great Set of Docotrs including Heart. I even have a standby shrink...You are paying for Coverage one way or another...You owe yourself a Winning Chance. I may have everything okay but the Dragon, I still intend to get rid of that. I am around children of all ages and animals too much to want to be the one spreading this disease like I was. Sorry for the Pulpit sermon...but we are all fighting for Quality of Life...as much as the quantity!