Oh My Fucking Gawd

I am one of those people. I made the 5%. Satistics were my friend for once.

The blood tests were negative!!!!!

No virus, no antibodies, normal liver tests. It was a false positive. I do not have hepatitis C. All that worry and angst over the damn positive test for nothing.

I am SO relieved. Can't even begin to tell you how relieved. More than fucking relieved. I am utterly dumbstruck and amazed. My cholesterol was sky high, though, so he wants me to try dietary/exercise modifications and go back in a month when we will retest the hep C just to make sure and retest the cholesterol again to decide whether I need treatment.

Thank you God.

4 more days

4 more days until I know the Hep C situation.

Not that anyone's counting, of course. Me? Obsess? Never!

In food/healthy living news, though, I lost 2lbs last week! Score!

And my aunt loved her M-day flowers, so that worked out well. In fact, she positively gushed about them, so that made me feel better, and I managed to avoid pretty much all mention of the day by not turning the TV on, and not socializing, so I didn't dwell too much on things.

All in all, apart from the 4 more days thing, it's been a pretty good start to the week.

Public Service Announcement

Wow, thanks to Marie Baguette. She found a site that I didn't find, and I've been googling fairly obsessively. It is here. Thank you, thank you blogosphere, for your support and information. First of all, it is a more recent study than those I found, and while I was finding things that said "as many as 10% of patients with hepatitis C have no known risk factors", or "10-15% of patients have no known risk factors", this one says that 20-40% of patients have no known risk factors. 20-40%! And look at all those things that people did in the year they got infected - surgery, intravenous drips, intramuscular injections, acupuncture, manicures and pedicures. Wow. It recommends that this information is made more widely available.

Uh, yeah. That would have been nice. Who knew? I certainly didn't. I thought that Hep C was like HIV. That you'd have to pretty much know where you got it from - intravenous drug use, sex, etc. Not that you could have a small puncture wound with a presumably sterile needle and then somehow pick it up. Would it have stopped me doing IVF? No, probably not. It may have given me pause before doing acupuncture, I guess, given that that was really an unnecessary addition. Can't say I've had any manis/pedis in the last couple of years (pedis always made me a bit squeamish) but I can say I'm not going back again for a pedicure at least.

I wish they would make this information more available. It makes me want to start telling everyone to be careful out there. That, you know, infertility treatment isn't just hard on your wallet, your hormones and your emotions. It could open you up to other problems. Injectable medications aren't a no-brainer. Acupuncture may not be entirely safe. An IV drip for egg retrieval? Is it worth it all?

So, anyway, I am moving more towards acceptance. I am moving on from denial. I figure I have it, that this was not a false positive test. And strangely, the need to know where I got it from is abating. Could be the donor sperm, could be the IVF itself, could be the acupuncture. Could be something unrelated. I'll never know. Or at least, never be able to prove anything for certain. I can live with that uncertainty. It just means that life has dealt me a shit hand. Before infertility I'd probably have been more angry and more needy about figuring out where the infection came from. But now that I've been dealt the shit infertility hand, I've already gone through the "why me?" angst and I don't have the strength to go through it all again. Why me is just because sometimes shit happens. There's no rhyme or reason. Life just sucks major ass sometimes. Of course, maybe I just haven't hit the anger stage, or whatever the stages of grief are that you have to go through.

But, whatever, in two weeks I will know. I had my appointment with the internist yesterday, and he seemed like a nice guy. He is running a shit load of tests on me, some of which I'm sure have no bearing on hepatitis but he seems to be running them because he can. Or maybe he just wants every tiny piece of information possible before deciding on what treatment to give me, and wants to know if I am healthy enough to cope with the treatment, which is pretty nasty, let's face it.

So I have a different type of two week wait now. Not the two week wait for pregnancy test results but nasty disease test results. I'm sure I'll be every bit as anxious and distracted as I am before a beta test. I've already been mentally rehearsing the conversation with the big boss at work where I ask for reduced hours for interferon treatment, but let's hope it doesn't come to that, eh. I'd much rather do another IVF than waste more than 6 months injecting myself with really nasty drugs. At least I have the injection techniques down pat though, so that will help I suppose.

58.9

58.9

That's the number that is going around in my head today. That is the number that will spell doom and gloom for at least the next few weeks, possibly for the rest of my life.

58.9

I got a copy of my lab report sent by Big New Clinic, and it arrived in the mail yesterday. This is the value for my hep C test. Less than 1 is negative. I'd been reading how less than 3.5 is very often a false positive, whereas over 9.9 is 95% certain to be a true positive. So of course, I assumed that my result would be 3.4, or heck, maybe 5.6 or something. You know, something nice and low that would reassure me that this would just be a silly false positive. Because how can I have hep C? I have done NOTHING risky since the last two negative tests. NOTHING. N.O.T.H.I.N.G.

But it came back at 58.9. There go all my hopes of it being a false positive. Well, I can hope to be in that 5% but really, since when have statistics gone my way lately?

Fuck.

Tomorrow, tomorrow, I wuv ya tomorrow

OK, so exactly how long do your liver enzymes stay affected after drinking too much alcohol?

I decided last night that a glass of wine with dinner would be very nice. After all, if I'm about to get a diagnosis of a chronic liver disease, I may as well make hay while the sun shines. Of course, of course, I have a little self-restraint issue when it comes to red wine so one glass turned into three. And I am not stingy on the pour, so I am feeling a little worse for wear this morning.

And wouldn't you know it, the internist's office called to say they needed to reschedule Monday's appointment. My heart sank when they said that, because I was imagining another three weeks delay. But no, they are going to fit me in tomorrrow at 3pm. So there go all my plans of having a non-alcoholic weekend so that my liver is in tip-top condition for the tests just in case. And the secretary casually mentioned that I need to fast for 4 hours before coming in, so there also go my plans for a nice Friday lunch.

But, eek! I'm going to see the doctor tomorrow!

On a related note, I did a pubmed search for hep c and ivf, and found this:

Impaired ovarian stimulation during in vitro fertilization in women who are seropositive for hepatitis C virus and seronegative for human immunodeficiency virus.

OBJECTIVE: To analyze the impact of seropositivity with hepatitis C virus (HCV) on in vitro fertilization (IVF) outcomes. DESIGN: Retrospective, case-controlled study. SETTING: Fertility clinic of academic hospital. PATIENT(S): 42 IVF/intracytoplasmic sperm injection cycles in HCV-seropositive women and 84 matched control cycles. INTERVENTION(S): IVF/intracytoplasmic sperm injection treatment for infertility. MAIN OUTCOME MEASURE(S): Ovarian response to stimulation, laboratory findings, and implantation and pregnancy rates. RESULT(S): Absence of ovarian response was statistically significantly higher for HCV-seropositive women compared with controls (10/42 vs 5/84 cycles, respectively). For cycles with oocyte retrieval, HCV-seropositive women required more gonadotropin units compared with controls. The maximum estradiol levels and number of collected oocytes were similar, but HCV-seropositive women had statistically significantly fewer embryos available compared with controls. Embryo morphologic features, number of transferred embryos, and rates of implantation and pregnancy were similar for HCV-seropositive women and controls. CONCLUSION(S): When compared with matched uninfected controls, HCV-seropositive women display a decreased ovarian response.

Doesn't that just put the icing on the cake? I know, I should be grateful that they do IVF on hep C positive people. I know that. But as someone who is already diagnosed as a poor responder this kind of ratchets up the fear a bit - what if I go through all this, do the IVF and then have no response at all? And given that my last negative hep C test was the same month as my first IVF, I don't think that I could blame the previous poor responses on hep C.

Fog bound

I feel like today I might be emerging from the fog.

All of a sudden I feel like I might be able to cycle again, and it might be OK, even if I do end up having antibodies to Hepatitis C. The cyst might go down, and I might stim just fine. Of course, July/August is still an awfully long time away but whatever. It is what it is, and no amount of whining and carrying on is going to change that.

I feel like I'm able to think a bit more clearly today, and I feel like I'm no longer going around in circles in the fog, concentrating on the fact that I may have a chronic disease. If I have it, I have to accept that fact and figure out what to do about treatment, if any, I have to do, or what lifestyle changes I have to make. If I don't have it, I will thank my lucky stars.

I do still feel like this postponement has pushed me closer to doing just one last cycle at Big New Clinic, rather than possibly doing two last cycles, so I guess I've ratcheted up the pressure on myself. But I'm going to try to cross each bridge as I come to it, and not make premature decisions. If the cycle fails, that will be the time to decide about another one, not now.

I sent an email to Dr. S. asking him about the Hep C and exactly what this means as far as cycling at Big New Clinic. I also asked for a list of exactly which tests they want me to have run in order to cycle again, and what the plan for the cyst is. I hope he responds and gives me some useful information. If not, at least I tried. I think that's going to be the motto of my life - at least I tried.

ETA: Well, bless his heart, he already responded. Not that I understand exactly what the email says. It talks about "getting cleared" for the Hep C. What's "getting cleared"? Proving that I don't have it, or proving that it's not affecting me?

you need to get cleared for the hepatitis c by the internist they can determine what testing you need to clear you for treatment and pregnancy
After that then we can proceed with IVF
the cyst is not a big deal; we will determine what to do with it once you are cleared
call me after your internist has cleared you and we can determine what to do

good luck

Adventures in Therapyland

Well, I have my very first therapy appointment tomorrow at 6pm. I'd made an appointment already for May 2nd, as that was the first "evening" appointment the therapist had. Mind you, the May 2nd appointment is for 5pm which is practically mid-afternoon to me and doesn't qualify in my book as "evening" especially as she's not in my city so I'd have to leave work at 4pm. But a cancellation opened up for tomorrow at 6, so she's fitting me in early. I'm not quite sure what to expect. I mean, I think it will be helpful to work through everything but I'm not sure whether to expect that this is going to be a lengthy process, or whether I'll end up going for 4 sessions or something and have enough tools to help me deal with the disappointments. We shall see. We shall see if I even like her. I must admit, she's kind of annoyed me on the phone already but hey, you can't have everything in life. She was highly recommended by both acus, and at least I'm trying.

In hep C news, I was trying to tell my aunt that I really may have this. They've already done the back-up test that is supposed to be the definitive this-is-not-a-false-positive test. And she's having none of it, saying that if I've caught it from doing nothing, then everybody would have it. So it MUST be a false positive. Which is true, I try to think that too, but most doctors are going to look at the test and stop there. She wants me to demand that the new doctor rerun the diagnostic test at not one, but two labs. Which I think I will, even though he'll think I'm crazy and I'll have to pay cash for at least some of the testing I'm sure, as only one lab is covered by my insurance. But if I have it I would still want her and the rest of the family to get tested. I think she's in denial because I basically insinuated that if I really have it, my cousin is suspect #1 as he's who I've shared towels and bathrooms with most. She also wanted me to call the RE to see if he could tell me if we can test the vial of frozen sperm I have in storage to see if I got it from the sperm. Um, yeah, they test the guy's blood for the antibody and the actual virus before they let him donate, and then they retest his blood every 3 months for the antibody. I think we'd know by now if he had it. And I don't think they can test sperm for it.

Sulking

I went to the acupuncturists yesterday morning and told them about the cancellation. I dissolved into tears. I seem to do that a lot at the acupuncturists. I said I was unhappy that we didn't seem to be getting anywhere, that I read in The Infertility Cure of women who seemed to be "fixed" within 6 weeks and I have now been doing acupuncture for 2 years. 2 looong years. I wailed about my unhappiness about potentially having hepatitis C. I wailed about having a cyst when I haven't taken meds for months and months and I was getting frustrated with the constant reply I get from them that my body is still recovering from the last IVF. Which was at the beginning of December, so I feel like I damn well should be recovered from it.

I am worrying more and more about the hep C result, in case it is a real positive and not a false positive. I did some googling, and hep C is remarkably easy to catch. In 10-15% of cases they have no clue how the person got hep C. No clue at all. You don't have to be doing any risky behavior to catch it. Now, I have been living a fairly monk-like existence ever since I started trying to conceive. Sure, I may have shared a towel with my cousin when washing my hands. I may have hugged someone with the disease who didn't know they had it. And that's it. No needle sharing, no razor sharing, no toothbrush sharing. Definitely no sex or full on kissing. But I keep thinking, what if? What if I really have it? It could be a real positive. And then I'm going to have to tell all my friends and family to get tested because I couldn't bear the thought of them having caught it from me. Or vice versa, if I'm being honest. It's just so depressing. AND it would mean no more alcohol, ever. Ever. Ever. Can you bear the thought of never having another glass of wine again, for no reason? For some random reason that one day you had a little cut on your hand that you didn't notice and shared a towel with someone who didn't know they had a disease? That's it, no more vino. It's a cruel and unusual punishment.

And I don't know if anyone would prevent me from cycling or adopting with hep C. I haven't been told that or read it anywhere. But why test for it then? If medical people are supposed to assume that everyone has HIV and be careful of their blood, and if the real main difference with hep C is to require a C-section or something, why test if you are a fertility clinic? Unless you want to refuse treatment? And of course, now I'm worrying about getting deported too. Before I get my green card I have to prove that I have no communicable diseases. Haha, I bet hep C is on the list. I bet I'll have caught it in the States, and the States will throw me out back to England for having it so that the National Health Service will have to foot the bill.

Anyway, back to the acupuncturist. I ended up in a meeting with both the assistant acu (who I heart) and the main acu (who I don't heart). As usual, the main acu made me feel bad because she implied that I'm looking for a child to fill a void in my life, that my life is devoid of joy and that I have to change that first before a child will choose to come into my life. I said she was judging me unfairly, that the fact that I was miserable as sin was no reflection on me as a person. That I'd been pretty damn upbeat and positive most of last week. But it always cuts like a knife, because in a way she's right. I don't have the most joyous life. I don't have a wide circle of friends. I don't know how to have fun really without drinking or going out late at night, and I've cut all that out, partly because of TTC'ing and partly because of moving to the States where you have to drive everywhere. And I'm not into drinking and driving. I mean, don't get me wrong, I have friends. I go out occasionally. I do stuff. I try to find joy in walking along the beach, or looking at the flowers. I really do. But I feel trapped in my job, so there's a lot of angst too. But, I feel that she judges me because I'm single. I don't think she'd do this to me if I was partnered. Which pisses me off mightily. She said her intention wasn't to judge, but really it all just leaves me more depressed.

Anyway, I could go on. But they recommended a therapist who works a lot with infertility patients and who went through infertility herself. So I'm going to go and see her if I can, because after all, therapy is about the one thing I haven't tried yet. We'll see if it will help.

And finally, to wrap up the litany of woe, I checked the schedule of Big New Clinic, and of course if I wait two months the lab will be closed. So it will definitely be 3 months. Which means I won't be cycling until July/August. Which makes me want to scream in frustration. And hit things. But mostly makes me leak tears. I am doing a lot of that. Leaking. Oozing. With an occasional sob thrown in for good measure. Even Rescue Remedy isn't helping much this weekend.

What's the bloody point, eh?

I don't know if someone can enlighten me, but I've spent the night wondering what the bloody point of life is if you can't have kids. I just don't see it.

I'm very down. This is hitting me, in some ways, harder than the previous IVF failures. Even though it's not a failure - it's a postponement, I hope. But it could be a permanent postponement. And even if it is just a short hiatus, is it in fact a sign that I shouldn't be trying this at all. Why do I have roadblock after roadblock put up in front of me? Is the universe trying to get a message through my thick skull?

I just don't see the point any more. If I'm not meant to have kids, what on earth am I supposed to do with my life? Oh sure, Mother Theresa led a great, giving life. But I am not Mother Theresa. Far from it. I'm not sure what I could contribute to the world without providing children. I have always had a desire to have children. To reproduce, if we're going to get basic. I don't have that much of a desire to nurture. Especially not other people who are not related to me. I'm not an earth mother that wants to take in children to love them. I want my own children. Yes, I know it's terribly politically uncorrect to say that. Adopted children are the adopted parents own, because they were meant to be together. I get that intellectually. I don't get it viscerally. I want my own, biologically, genetically related children. To me, adoption IS a second best option. I am not one of the wonderful people that naturally turn to adoption. And I don't know if I ever could. Would I always be wondering that I'm giving a child, who deserves to be someone's first option, a second class chance at life, if I try to adopt as a consolation prize? People tell me I'd be a great mother, that I'd love any child, that I wouldn't have a problem loving an adopted child. But in order to get to that point, I have years worth of grieving to get through. Grieving the lost opportunity to have a child from my eggs. It's not something I can turn to easily.

But anyway, that is all academic musing. Because if I really have Hep C I doubt whether any adoption agency in the land would allow me to adopt. And I doubt any IVF clinic in the country would allow me to do IVF, or to do DE. So I'd be done. Forever. Childless. Barren. Pointless.

See, I'm back to pointless. I don't see the point of life without having children. I really don't. Any life without children in my future is a shadow life. A hanging on until death. Biding time. What's the fucking point?

Wait, it gets worse...

So, a nurse from Big New Clinic called me this morning, to say they'd got the ultrasound report and were waiting for the bloodwork before making a decision on the cyst. And incidentally they said they hadn't received my repeat HIV and nasty disease testing. I said I'd had all that stuff drawn in early March and gave them the name of the testing company. The nurse said she'd get the testing company to fax the results over.

I just got a call from a doctor at Big New Clinic. An actual doctor. You know it's bad when a doctor calls. Not only do I have a cyst, which they want to do nothing about and delay me for two months. Yes, two. One month before I repeat the ultrasound to see if the cyst is gone, and then I can start on the estrogen and ganirelix the following month. If it's gone. And of course, Big New Clinic closes its lab down periodically for cleaning, and I've got a sneaking suspicion that waiting two cycles will put me right into the period of time that the lab is closed. So I may even be benched for 3 cycles.

But here's the icing on the cake - my hepatitis C test came back positive. So I can't proceed with IVF at all until I can get that sorted out. They said that often these tests give a false positive, and that my prior tests showed that I was negative. So it's more likely than not a false positive, but I have to go to a doctor and get more tests, including liver function tests, so I can prove to Big New Clinic that I don't have hepatitis C.

Benched, benched, benched. Fuck.

I'm not actually worried about the hep C, as I have not taken part in any dangerous behaviors since the last negative test, nor have I had any blood transfusions. But still, it's a pain in the proverbial to have to retest everything. And of course I suppose there is always a small posibility that it is a real positive but slim. And if they'd followed up on these tests when they first asked for them, I'd have known this in March and got it sorted out by now. So it's pretty darn annoying.

And I don't even have a regular doctor, so now I have to find one.