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Confused and waiting for results
by Debbiedoo, Jul 07, 2005 12:00AM
I'm still waiting to see a specialist.
The doctors that foung the Hep C, informed me that my
quantity was less the 50 million. He rushed me off the phone and that was that. What the heck does that mean?
Debbiedoo2
The doctors that foung the Hep C, informed me that my
quantity was less the 50 million. He rushed me off the phone and that was that. What the heck does that mean?
Debbiedoo2
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I just received a copy of my blood work today, it's a mess.
My Lyme is reactive (again), My Rheumatoid levels are sky high (I have RH), and my thyriod was also sky high (I also have Hypothyroidism). My Hemocrit is off, does that mean anything?
I am so clueless. I've had this pain is my left side for over a year,and now that I know what it is I'm freaked out!
I 35 almost 36 (3 weeks) female a mom.....
Debbiedoo2
c-quest: I'm on week 13 of treatment and have been on this forum the entire time...NEVER will you feel bad or annoying asking questions. The people here are the most understanding, insightful, helpful, and SMART people I have ever met. I've asked the same thing over; just whined sometimes when depressed; and they have always done their best to answer with facts, figures, and listen endlessly to me complain and still express love and understanding. We're all in same boat; all fighting the same disease...Please stay here - I come every day, don't always post but always read and i've become very well informed...
debbie: as jmjm said you need your viral load; geno type; and enzyme levels. Then b4 deciding on treatment; a liver biopsy is a must...good luck...keep asking questions.
I can't say enough the people here are the best!
btw: that receptionist/nurse was completely insensitive!
be well and good luck
<3 michelle
The important numbers you want are: (1) Exact viral load; (2) genotype; (3)liver enzyme levels.
Get these numbers by calling your doctor's office and asking them for copies of your blood tests. If they haven't done all of them, I'm sure your specialist will.
In addition, if you have Hepatitis C, you will most probably want a biopsy prior to making any treatment decisions.
Keep us informed and keep asking questions.
-- Jim
IN A POST SOME WEEKS BACK TRHEPGUY POSTED QUESTIONS TO ASK, FIND THEM, PRINT OUT AND TAKE WITH YOU, IT REALLY HELP ME.
GOOD LUCK.MOEY FEMALE, 50, GENO TYPE 1A VL 5 MIL. DX 3.5 YEARS AGO.
just sharing a story.
<3 chelle
Btw, urq pain is the "quad"rant. Also they didn't test the blood in 1980 for Hep c, as a matter of fact they didn'tknow it was hep c it was called "non A non B"
Thank you for clearing up the confusion with the pain in my side, now I just have to find out what the heck that is.
I'll post later.Thanks again.
Deb
About your husband -- mine has not been tested and has not wanted me to treat. I want him to be tested now, not when his next dr apt is. Yesterday when he came home from work I was on this site. I finally got him to sit down and look at some stuff. I showed him my biopsy post (07/03) and the explanatory pictures that Willing linked to me on that post. Yesterday was the first time I could tell he could see my concerns about further liver damage. Yesterday was the first time that he was receptive to treating, and even thinks now may be the proper time. Good luck with your husband. Educating him is the only way for him to become involved. I can see that personally.
My viral load is very low. I do not need treatment at this time. I was re-tested today to make sure. It appears I've had HCV for sometime but my body has been fighting it itself...it that possible????
I still have to see the GI, (I think I need a biopsy but), I feel like I can breath again.
The last three weeks this Forum has been one of the only places I've wanted to be. Everyone here has helped me feel safe. I have been afraid to tell people about the hep c,for fear of being judged, and I think I was in some cases. I will continue to check on this site. I'll keep everyone in my prayer everyday for the rest of my life. It's amazing how I felt so much love and care from people I don't know. Thank you so very much! God bless you all with health, bravery, hope, and inner-peace.
Debbiedoo2
*I'll let you all know the results from my biopsy
I am sure you have read on these posts that low VL is not particularly indicitive of no liver damage. Push for the biopsy. Then you will have a true starting point. I can understand wanting to keep a lid on it and the judging. I even went so far as to take a vacation day for my biopsy - told them I was working on my kitchen remodel. In fact that remodel has been a good cover for a lot of things. ( i would like to have a kitchen again, but it has come in handy). I think it was Cuteous who said on one of these posts, having hep c is not a cause for confession. Let it out here, but forget the rest - or just tell them it was a blood transfusion.
hopefully he'll get the test; my kids did and it put ALL our minds at ease.
tc
chelle
Deb
Cin
I am totally confused and extremly scared.
Take a deep breath, hold for a few seconds, and release slowly. Repeat as needed. You have a lot of questions; let’s take them one at a time, and see what we can do to help you feel a little better.
Right from the start, your genotype 2 truly is good news. Of the 4 genotypes typical to North America, genotype 2 is the one that is most responsive to therapy (75% to 85% clear the virus on their first attempt). That along with the fact that the current treatment algorithm only requires 24 weeks treatment is great news. (Recent studies are beginning to show that under certain conditions even less treatment time may be indicated). I say this because genotype 1 patients only clear 45% to 50% of the time, and treat for a minimum of 48 weeks. Some treat for years. If you’ve got to have Hep C, (HCV) genotype 2 is the way to go.
As far as the doctor wait time, it’s frustrating; however, August 2 is 22 days out, and many of us wait months, so that’s actually quite reasonable. I think you’ll find as you get further into this that it seems to take forever for things to get started. It’s just the nature of the beast, and we all go through it, unfortunately.
Somewhat odd that they didn’t perform a viral load test along with the genotyping, but try not to be concerned about VL right now. In the overall picture it’s not that important until when/if you decide to treat for this. Viral load does not predict the amount of liver damage you might have sustained due to this virus, and therefore is not really predictive of how “sick” one is from this disease.
This brings us to the subject of liver biopsy. Biopsy, not viral load, is the only way to accurately ascertain damage to the liver. Stay with me here now, this is important: Many docs now feel that because genotype 2 patients respond so well to treatment, that a biopsy may not necessary. However; if you insist on a biopsy, and the results show little to no damage, you might want to postpone treatment until more ‘friendly’ medications become available. Many folks have adopted a “watch and wait” attitude, which may make sense. Discuss this with your doctor and get his thoughts on this.
The fact that you’re not feeling any symptoms is understandable. The majority of HCV patients are asymptomatic for many years. I’ve personally had this for 30+ years, and only in the last few years have I begun to feel some fatigue.
Again, the decision to treat for this disease is a personal one that involves many factors: The current medication is somewhat toxic, and the side effects are highly individualized. Most people experience some form of effects from the meds, ranging from slight fatigue to downright head-in-the-toilet sick. Most go on with their lives basically intact, many continue to work, maintain the house, etc. The vast majority of the folks that post in here have chosen to endure treatment in order to achieve SVR (Sustained Viral Response). This is basically what is accepted as a cure.
Although some in here may disagree, for the most part, HCV is basically a slow moving disease; you most likely have time to approach this calmly and rationally. Your fears are well understood by all of us in here, but as you go along and educate yourself, you’ll come to understand that it’s not as bad as it first seems.
This is a really great forum, with a lot of very wise folks that are happy to help with support and information. I’m glad you found us. If you want to educate yourself further, you might take a look at this site - easy to navigate and full of info dedicated to Hep C. Here’s the address:
http://janis7hepc.com/
In the mean time, try to relax: stress is bad stuff for the body, stay away from it if you can. Hopefully others will be along soon with some other thoughts,
Best of luck, and keep us informed,
Bill
Best,
Bill
little more about myself. I am 38 yrs old and have probably had this for 20 yrs. I was told back in 86 when I was 19 and pregnant with my second child that I had had hep at some point in time but It was nothing to worry about but I could never donate blood. So, I didn't worry about it. I had a recent surgical procedure that made me inquire more in depht to the hep.
That's when I found out it was hep c. My gyn still said it was nothing to worry about and didn't suggest further testing. My
primary Dr. didn't know much about it so he referred me to the
G.I. I saw his P.A. who then ordered the next blood test. She said I didn't need to have my husband or children tested but I read in here last night where one woman did indeed pass it on to 2 of her children. I've had 6 children and have a healthy sexual
relationship with my husband. Am I being misinformed? Plus the fact that I have had this for 20 yrs, should I then not really wait to treat? A liver biopsy scares the **** out of me. Is it really painful? I am really trying to slow down and take a deep breath but am not having much luck. I have a full time job and 2 little ones still at home. One age 5 (girl-Haley) and one age 6(boy-Hunter with down syndrome),will I be able to work and deal
with my children during treatment. I've read the side effects of the drugs and again am scared to death. I've written to much, let me stop now. Sorry
Judy aka ladyfhattcatt
I continue to be amazed at the ignorance of some doctors. This disease can kill, and is the leading cause for liver transplant in the US. For a doctor to say not to be concerned is criminally negligent in my opinion. That said, with your new awareness, you should do just fine. Because the liver is called a ‘silent organ’, many people don’t know they are afflicted until major damage has occurred. By the time end stage liver disease comes around, some are to sick for treatment, and succumb waiting for transplant.
The incidence for perinatal transmission is low; I think the statistics are about 5% or so. However, as you noticed above, it’s not impossible; so for peace of mind, you should probably get everyone in the immediate family checked. HCV is transmitted via blood -to-blood, so don’t concern yourself with hugging, kissing, and for the most part, sexual activity. The CDC does not recommend the use of condoms for monogamous couples, and the risk for passing it this way appears to be very low. I was married to my now ex-wife for twenty years, and she recently tested negative.
As far as the decision to treat, there are many factors involved; age and gender are in your favor, however the most important info you need will come from the biopsy results. If for some reason you can’t get a biopsy, there are blood tests out recently that attempt to replace needle biopsy. One that comes to mind is the FibroSure test; however, the consensus so far seems to be that the results are not as accurate as needle biopsy. There is some info available for FibroSure at this address:
http://www.labcorp.com/pdf/HCVFibroSureLabFacets.pdf
Does the needle biopsy hurt? Everyone is different. I experienced some pain, kind of a mmpffff sensation; but by the time it registers, they’re done. Some people compare it to a bee sting. Typically, they numb you up with a local anesthetic, then give IV meds such as Fentanyl and Versed. Kind of like a twelve pack of beer; if it hurts a little, you don’t much care. The info from the results is what’s important here.
It does sound as if you have your hands full at home, especially with a special needs child. Your not alone here, others that post here are treating under similar circumstances.
As I mentioned before, the side effects of treatment vary widely from person to person, you could possibly need a little extra help from time to time.
A hint about posting here - we are only allowed 6 or 7 new posts a day, then they shut us off. To post a new question, try to post about 9:00 to 11:00 AM Eastern, or feel free to jump into an existing thread. If you do, however, try to use a post near the top; otherwise it might not get the attention it deserves.
Stay in touch, this is a good place to be!
Best,
Bill
Just wanted to let you know that I got a call from the male nurse at my G.I."s office (whom I've never met) today. He said he spoke to the doctor last week but just hadn't had time to call me until now. The doctor wants me to come in and see the nurse practioner and he definantly wants to treat. When I asked again about viral levels and liver biopsy's he could not answer me. I told him I was stressed to the max and I needed answers from the DOCTOR not a nurse practioner and I needed them before 8/2. So he put me on hold, when he came back he said I could come in 7/20 and actully see the doctor. I mean, whats up? Does the doctor just not want to deal with the hep c patients. On my first visit I saw a p.a not the doc and here he is trying to pawn me off on a nurse practioner. I am not happy. Also not feeling very well today. Don't know if it is just me stressing too much or something more than that. Feeling pretty down, can't seem to turn off the tears. Just wanted to thank everyone for listening to me. It's good to find other people who truly understand.
Judy
I know that feeling of being "pawned off".
Everyone on this site kept telling me to assert myself, ask questions. I think people (health care workers), can sometimes forget how scary this is. I went as far as to say to a nurse, "how would you feel if these were your test results?". I think it ok to insist to speak with your Doctor, but they may want to see you in person due to all the Hipa stuff. Good luck,hang in there! It's ok to be scared, but try not to consume yourself in all of this. (easier said than done.)
Deb
I am sorry I didn't see this post yesterday, & it's only because of Debbiedoo that I saw it.. (because I am waiting on some news from her so every time I see her post I go read it, thinking she is trying to slip it past me)
Judy, How are you doing today, have you found out anything further? I'll call ya if you like, let me know... or at least talk to Ivette, she's very level headed & straight forward, & has kept me grounded MULTIPLE Times... she's kind of like my Guardian Angel, & I can always coun't on her honest opinions!
Hang in there Judy... we WILL get thru this... & please find comfort in knowing that I am praying for you!
Sending you great big hugs.... I am here anytime you want to talk!
:(
Vicki
Sorry if it was me and I didn't get back to you. You know, I have a serious case of CRS.heheh
Let me know. I posted some results to everyone earlier. I do have news.
Hope all is well with you. Deb
Thanks again to everyone in here. At this point in time here is the only place I am finding any comfort. You are all so understanding and helpful because you all know exactly how I am feeling. Not even my husband can totally understand. I am feeling alittle better this evening. Last night after I posted in here I just layed down and crapped out. Didn't want to get up this morning and go to work but I made myself. I get to finally see the doctor 7/20 and this is just going to feel like the longest 8 days of my life.
Debbie, I have been reading your post for a couple of days and I see you have experienced some of the same treatment I am getting. Maybe it really is just the doctor is so busy with all his patients that he tends to forget that we are individual lives with individual feelings and needs. Kind of forgets how to be personal. But I don't think I want a doctor that can't remember that we are human beings and not just a paycheck.
Vickie, I think this is the first post I have read from you but again 7/9 was my first night on this sight or any sight having to do wit hep. I would appreciate talking to anyone via eamil or phone but I haven't seen where anyone has given out personal info such as phone#'s. How does that work. I don't have a problem with it I just don't want to break any rules or anyhting. Let me know. I could use a second family and it certainlt seems like you are all family in here.
Judy
I'm new to all this too and shell shocked still but it IS getting better. I wanted to let you know that I have the same fears and concerns that you have about taking care of my kids - esp the youngest one. I also have a special needs child, one of my 2 that has been diagnosed with this, and though he is older, he still requires care especially now. He has been through so much and now this. He and his sister are going to have liver biopsies soon and we'll know more. Thats what is so scary the unknown. But it sure sounds like you have a good chance of recovery, I have a feeling that you'll be fine.
Congratulations! Now I'm waiting on news from debbiedo 1.....
I have to watch you two... if I don't pay close attention, I get ya'll confused.... LoL
cquest
I know exactly what you mean... I tell everyone two... it's a great shock effect..... of-course not everybody can do that because of the stigma. I just have nothing to loose by telling anybody, so I take advantage of it.
And yeah I had a bad feeling to when I was getting my one & only unit of blood in 82 due to hemoraging from a miscarrage (miscarriage), & the whole time I was getting it a girlfriend was there spooking me out about aids... it was wierd... but I never even knew what hep c was until I was diagnosed Oct 03!
That's why I got so mad about the ingnorance on that Cenimax site... those folks are just trying to lay more stigma.... & they are just stupid!
Lady,
Hang in there... you are in good company!
:)
Go to a post by Poolcue, dated 7/11/05, entitled 'personal profiles' - A number of members are listing their personal info, as well as e-mail addresses. This should help you communicate with others here,
Bill
That goes for Vicki and Debbie and anyone else who just wants to talk.
I just filled out my profile as well, despite my tendency to procrastinate. Feel perfectly free to contact me as well, just use HCV in the subject line if you will. Thanks for your response,
Bill
TRIED TO EMAIL YOU BUT IT WAS RETURNED TO ME. SEND ME A TEST EMAIL AT ***@****, THAT IS IF YOU DON'T MIND ME EMAILING. WOULD LOVE TO TALK MORE WITH YOU.
JUDY