Confused and waiting for results

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

[Debbiedoo]

I have an appointment July 21 with the GI. Tomorrow I see my GP,he's also a friend. I just want him to take a look at my blood work.
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

[cquest]

Well, here I am in this chat room...not a good thing...I have an apt. w/ the gastroenterologist on 7/22 and I understand the frustration with getting information and feeling like you are bothering these people...so far I know my AST is 56,ALT 62, I am genotype 1A, my viral load is 62 million...which is a lot if I understand what I have read so far...I think I have had this cursed disease for at least 25 years...yikes! I am very impatient with waiting for a doctors apt! The girl in the office said 'well, you've waited this long, what's another month?' How insensitive!

[chellski]

You have found the best forum on this great earth after being dx w/hep-c.  
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

[friole]

Debbiedoo - pain on the left side?  Now that you know what it is all about?  Liver is on the right under the rib cage.  You will see it referred to on these posts as URQ (upper right quatrant)(that spelling doesn't look right). So that pain my not be related to hep c at all.

[cquest]

Thank you for being so kind and I know I need to be here if for nothing else than to see what everyone else is going through. I have read everything I can find on this thing and I know a biopsy is the only way to really know what damage has been done...I don't know about anybody else, but I am angry at my family doctor! All these years I have been complaining and he knew I had surgery in 1980 and got 2 pints of blood then but never tested me...of course stupid me, I could have asked but I never thought I needed to, I trusted him to know what to do and I finally insisted on being tested...I have a lot of symptoms, RUQ pain 24/7, severe mid abdominal pain that doubles me over, hypoglycemia, high cholesterol, severe dizzy spells that knock me out for days, so tired I fall asleep at parties,non healing wounds,pain and tingling in my hands and toes...the list goes on...I have been to Neurosurgeons, Endocrinologists, ENT's, you name it...I am just glad to finally find out what is wrong with me and now I know I can rant and rave and it's ok. thanks

[jmjm530]

You don't have enough information for us to help you.
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

[Moeymitt]

WHEN DO YOU GET TO SEE THE SPECIALIST? AND, IF YOUR DOCTOR IS NOT WORKING OUT FOR YOU PLEASE DON;T HESITATE TO FIND ONE YOU CAN WORK WITH. iT TOOK ME THREE TRIES BUT IT WAS WORTH IT. IT MEANT TIME OFF WORK, TRAVELING BUT ITS OK. I LIVE IN A SMALL TOWN AND HAD TO TRAVEL TO SEATTLE TO FIND ONE. I FEEL SO MUCH BETTER KNOWING I HAVE SOMEONE WHO WON;T "RUSH ME" OR CUT ME SHORT. GOOD LUCK AND WHEN YOU GET MORE INFORMATION LET US KNOW AMD WE WILL SHARE OUR EXPERIENCE.

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.

[cuteus]

nice to know it is not in your head like they might want you to think. I almost felt like a hypochondriac. I was not happy to know I had hep c, but was relieved to have an answer to my aches.  Now to aim your anger towards hep c and fight. welcome.

[chellski]

you know, my doctor is a good friend; my husband was dx with hep-c 6 yrs ago and never did anyone think to test me - said transmitting thru partner was "rare".  My husband had many other problems - first and foremost - kidney failure and then a kidney transplant, all while being positive for hep-c. two years after his transplant, the kidney rejected and sepsis set in; he died in apr '03....The point i'm trying to make is that just 5 months ago after a routine physical did my doc notice my liver enzymes were up and said "didn't we ever test you?"  well, no you didn't...anyway **** happens for a reason.  If i was on tx i couldn't have taken care of my husb and enjoyed life so much with him and our kids.  
just sharing a story.
<3 chelle

[giddyup]

Even though we had to go through three doctors before we found the one to treat Giddy...we were told some useful things along the way. One being "have your spouse and siblings tested." Luckily I don't have Hep C, unfortunately one of his brothers does. If all the assumptions are right, Giddy contracted this disease about age 8,(gammaglobulin shot...blood product) so symptoms started showing up around 30 years later....but growing up not knowing he surely shared a razor or two, with a sibling or two....just info to be aware of.
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"

[friole]

That is a sad story.  No wonder the kids have had such problems.   You are right - you had all you could handle without having to do tx or worry about tx when your husband was ill.  You are brave.  I truly hope your test will turn out well

[cquest]

I had a bad feeling about that blood I got in 1980...I tried to refuse it, I cried, I fought the nurses...they brought in one big mean nurse and forced me...I had a sense of impending doom about it and sure enough, I was right...Right now I am trying to convince my husband to be tested, I want him to come with me to my apt. on the 22nd and hopefully the fear of god will get him and he will get tested...The good news is my x-husband doesn't have it...we were married from age 18 to 31 so that's good...How tragic this all is for everyone's families, everyone in my family is chewing their nails and thinking who's next...my 31 year old daughter also has it but she probably got it on her own rather than from me due to past issues she's had. Anyway, I am enjoying this chat room and very glad I found it!

[Debbiedoo]

I'm out the door to see one of my Doctors, loaded with questions I got off this site, and all my blood work.
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

[friole]

That nurse at the doctor's office must be typical of how the medical profession views this disease.  My genotype test was sent to the GI on June28 and my biopsy was sent to him on June 30. I called several days before finally getting the nurse to call me back yesterday about the geno test.  The doctor had still not even looked at the tests and she was not going to give me the results.  I told her I HAD to have it yesterday and she finally gave it to me.

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.

[friole]

Good luck with the doctor today.  Let us know what happens.

[chellski]

hey cool gettin your hubby reading this site - i guess you can teach an old dog new tricks!
hopefully he'll get the test; my kids did and it put ALL our minds at ease.
tc
chelle

[friole]

Deb,
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.

[Debbiedoo]

Wonderful news!
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

[Ladyfhattcatt]

Hello everyone! I am new to this sight and ovbviously do not have enough information. I got the call two days ago from a nurse at my G.I.'s office. He says good news, you are geno type 2 and should only need 6 months of treatment. Of course they can't get me in to see the doctor until 8/2 and I am now about to burst with tons of questions and just total fear. Nothing at all mentioned about viral load or liver biopsys. What exactly was the good news? I haven't figured that out yet. I understand there is 6 types of hep c. Which is the worst and where does geno type 2 fit in? I had an ultrsound of the urq and that was fine. I have no symptons other then being tired and during my initial exam I showed slight discomfort when the doc was pressing on my right side. I don't feel sick. Should I then undergo a treatment that will make me sick?

I am totally confused and extremly scared.

[cquest]

Just a note about confessing you have hep c...I have told as many people as possible...I find it very healing to talk about it...plus I am one of those people that when you look at me, you think I have it all together, nice house, nice car, nice job, nice kids, nice nice nice...bam! MAJOR wake up call! If I can have it so can anybody else so buddy, better go get tested. It is a shocker for everyone and I'm glad, I want to shock them into thinking twice about stereo typing people and realize anybody can get this, it doesn't matter who you are or what you have or haven't done in the past..nobody is safe! I got 2 pints of blood after surgery in 1980 which is where I believe this came from and I am anoyed about that, I didn't CHOOSE to get that blood, I didn't do anything wrong...I just happened to be a victim of circumstances...talking about it helps me release my anger about it...
Cin

[Debbiedoo]

Will do. I have plans to see the GI 7-21, from there I will make my plans for the liver biopsy. I have to admit, I feel so relieved. I know I'm not totally in the clear but I was so worried about the treatment. My heart goes out to everyone going through it. I know the possibility of a relapse....:( but I'm staying positive for now. Thank you again.
Deb

[cquest]

I am newly diagnosed too and have been reading everything I can possibly find on the subject. I am type 1a and apparently there is a 50/50 chance for me, type 2 & 3 is the best, if you are lucky you have 80% chance to be cured, I guess it depends on the stage,viral load, your age,etc etc...the most difficult is 1b and 4...so it doesn't sound too bad for you! I am so glad I found this website, it keeps me busy and not dwelling on the 'what if's'...It looks like there are a lot of people in here that have been dealing with this for a long time and seem to know more than some of the doctors I have been dealing with!

[Bill1954]

Whoa! Don

[Bill1954]

When you speak with your doctor, ask him for your LFT (liver function test) results. Sometimes the ALT/AST biochemical markers are helpful to know.

Best,

Bill

[Ladyfhattcatt]

I just wanted to thank you guys for the info. Let me tell you a
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

[Bill1954]

Hi, Judy:

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

[Ladyfhattcatt]

Hello,
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

[bon_vivant]

I just now caught this post, I am so sorry you are going thru this, & that's **** being treated that way.

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

[Debbiedoo]

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

[Ladyfhattcatt]

Hello everyone,
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

[Debbiedoo]

Are you waiting to hear from me, Debbiedoo2 or Debbiedo1?
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

[dancegirl54]

Dear 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.

[bon_vivant]

Deb
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!

:)

[Bill1954]

Lady:

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

[Ladyfhattcatt]

Thanks for the info, will go to the thread now and post my info. Feel free to email me anytime. Can use all the friends I can get.
That goes  for Vicki and Debbie and anyone else who just wants to talk.

[Bill1954]

Well, you went and shamed me into it! LOL!
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

[Ladyfhattcatt]

HELLO,
   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