This is going to be a very difficult post to write. I don’t even know how to begin as I am so confused and upset. I guess I should just start with the phone call. The one where the head coordinator called to tell me that I am no longer eligible to be a donor. The call where she explained that I tested positive for hepatitis C. The call where she said that they are in talks with legal to see if I am liable for any money that the recipient is out or pocket on. The call where it became completely clear that I will not be getting a baby out of this trip.
The call where I was cancelled.
The day started out pretty good. I got up super early for my blood work and ultrasound. I found out that I had three more follicles than last friday’s scan showed. I had a spring in my step. I was singing to the radio. I was getting ready for acupuncture. And then the phone rang.
Positive for hep c.
I immediately went back to the clinic to get another hep c test, but the results won’t be in until friday. The recipient has already been notified that I am no longer able to be a donor. I can only imagine how she is doing right now. I am in shock. I can not stop crying. I can not stop feeling like I am being punished. I am totally, 100% gutted.
The coordinator explained that maybe I could work out a deal and continue with the IVF, but I would some how have to come up with however many grand to do that. And that is just not something that I can do right now. Mother is home freaking out and volunteering to sell the cars and do whatever it takes. I am going to have to let her fight for me right now as I just don’t have the strength. I am done.
I would be completely comfortable swearing on a bible & telling you that I do not have hep c. I just don’t know how I could. And I know people that have had false positives. I just know I am one of those people. Right?
Fuck. Fuck FUCK.
It’s just fucking wrong for the Universe to do this to me. It is horrible and cruel to get me this fucking close to something this fucking huge and then take it all away. I don’t know how I will ever find faith again.
Edited to add/Change: Thank you all for your comments and for the donations. I am totally raw right now, but know that your actions and words are salve for the wound.
I am going out on a limb and un-protecting the post. I guess since there is no longer a recipient to protect that I can be more open.
I also wanted to clarify that I have had (in all of my epic ttc adventures) many blood tests and of those tests all of the the hep C results were negative. I am the definition of a low risk profile, so this test result is so shocking and freaky. This recent test was an FDA required test (part of a donor panel) that must be done X days before retrieval. So regardless of my negative status that I had when I was accepted as a donor, there was no way that the clinic could have known that this new test would show up positive. This just makes me feel very certain that the result was a false positive.
I have had a draw for a repeat test, but the soonest a result can be had is Friday. Friday is probably also the day that I would have had my egg retrieval.
I am just waiting for the clinic to call me and let me know what their financial people can do as far as me financing my own IVF. I am trying to cry out all of the tears so that I am unwavering on the phone.
But honestly, I can’t even talk on the phone without losing it. I keep thinking about the woman that was almost the recipient and what a shitty day she must be having now. I feel guilty and then immediately hate myself for feeling that way. I feel smited and cursed and vexed and ruined and damaged and destroyed and of course this is all beautifully heightened by the 5 million units of extra hormones that are in me.
I don’t really know if this IVF, my only chance, can be saved, but it means a hell of a lot that so many of you are taking on the cause. It just sucks like nothing else has ever sucked before.
{ 62 comments… read them below or add one }
I can’t believe that they’ll scrap the whole thing without waiting for the results of your 2nd test.
This sucks so fucking bad and I am so sorry you are going through this right now.
Seriously must be a false positive. Crap on a crutch. Ugh wish we were all there holding your hand right now.
Oh god Cali. I don’t even know what to say. If it turns out it’s a false positive, will they let you continue? Can we at least hope for that? Sending all kinds of love your way.
Oh no oh no oh no. This is too cruel. Too fucking mean. Oh honey, I’m so, so sorry. As little as it helps, know that I’m sending heaps & heaps of love your way. How abso-fucking-lutely devestating.
Oh my God, Cali. I am so sorry. This is so fucking unfair. We’ll chip in whatever we can to help, if that helps.
oh my god, i AM SICK OVER THIS FOR YOU, it makes no sense, and it has to be a false positive, wonder if something in the ivf drugs mimics hep c in blood tests, because as you know, sarah-solitaire had a false positive… this is beyond unbelieveable, wish you were closer to syracuse ny, as i would race over and give you a big hug! we will be praying for you, to have a miraculous conclusion to this latest obstacle! ( and we all know that it is a false positive, which makes it that much more unbelievable!)
I’m so sorry, Cali. No matter what the future holds, I am so sorry that you’ve had this horrific day…
xoxo
How absolutely utterly devastating!! I am also SURE that you don’t have Hep C…and given that there are false positives, i can’t believe that they would just drop you given how much everyone has invested in this IVF! Can’t they just wait until Friday? can you just continue on the meds at least til then (i mean, if you’re possible going to have to pay for them anyway)…gawd i pray the universe reverses this gigantic mistake!!
no fucking way. The only realistic way you could have it is if your mom had it when she gave birth to you, if your needles for injects were contaminated, or if (G-d forbid) GM has it, and somehow it’s transpiring to you that way.
But seriously? I bet they fucked up – storm in there, with us on your shoulders, and demand that they do a NEW test.
oh NO Cali! I am so, so, so, so sorry. This actually made me cry a bit.
Oh, I forgot:
*Huuuuuuggggssss*
How the fuck could this be??? HOW COULD THIS BE??? So you have gone in for another test and they can’t rush it!!??? This has to be wrong!!!
I am so sorry you are going through this!!!!!!!!!!!!!!
I am floored by this, and speechless. You know that I am one of those people who tested falsely positive. I’m sure you remember that, but it won’t really help right now when the rug’s been pulled from under you. I am just so so sorry. It’s very, very unfair.
holy crap
what bullshit
I am so sorry. It has to be a false positive.
Fuck. I just can’t swear enough for you.
How horrendous. Even if it was a false positive, this is such a huge blow. You’ll be in my thoughts.
I’m speechless, Calliope. I can’t begin to imagine what you’re going through right now! I’ll be praying that it’s a false positive and that there’s a way for you to continue with this cycle.
OK – it’s a total false positive. I’m UTTERLY convinced.
We will figure this out, we’ll pay for as much of your IVF as we can, Cali. NO ONE deserves it more.
Love you.
Oh God, Cali. Oh babe, I’m so sorry. Yes, it’s a false positive. It’s GOT to be. I’m certain that you’ve been tested for all of this before, I mean, really. Seriously, false positives happen all the time, and they should have gotten a new test read right away.
Any other place you can go (with your new insurance) for a test? I know you’re in a strange place, but I’m sure you can find somewhere to go. This is insane.
You’re in our thoughts and prayers, Cali. We love you. We’re thinking of the recipient, too.
Stunned. Devastated. Sick to my stomach for you. It’s just unbelievable, impossible, wrong. I don’t know what else to say.
Sending love. I wish I could make it better.
I can’t believe they didn’t have this all figured out BEFORE you started. At least that way you could have been retested and I am sure it would have been negative and then moved forward with your cycle. How dare they tell you that you will not be able to be a donor!!!!! I am so pissed off for you!!! I am next to speechless!!! I am so incredibly sorry for you and the recipient. This is just so unfair!!!
cali i am so so so effing sorry. i agree with everyone else…it must be a false + and they will find that out when the the second test come back.
this more than sucks.
Ditto for a false positive, and – I think the clinic is liable to the recipient, not you. They are responsible for screening their candidates and you had no reason to think you would be positive since you have never tested positive before. Stand your guns with the clinic on the liability issue and DO NOT GIVE UP!!!!
I am sooooo sorry you are going through this…. I hope they do find out on Friday they were wrong. How horrible…. Please know we are all out here thinking of you… wishing this would be easier.
Oh Cali. *Hugs*
Did they not test you before the baseline? In our DE cycle they tested us all way back at the start, and my friend/donor again at retrieval.
We are complicated as my DP DOES test +ve for hep C antibodies (but negative for RNA) as he had hep C in his youth (ex-drug addict) though he’s now clear. I think it IS possible to pick up hep C from a sexual partner, as well as via contaminated blood, I really hope you’re clear and it’s a false positive, on every level!
I can’t believe this is happening to you. You mist be beside yourself. Sending you love and strength
xxx
Oh yeah – I totally agree with Jude. It’s on the clinic, not you.
This says there is a 35% false positive rate in low risk populations
http://www.cdc.gov/mmwr/PDF/rr/rr5203.pdf
I don’t know whether you now need a more specific test, like the RNA, rather than just a repeat antibody screen?
xx
THEY ARE WRONG. Dehydrate yourself completely and get your ass in there and DEMAND another test. Don’t you dare let these people and their “human errors” defeat you or crush your dreams. Find that strength…look inside yourself and FIND it. I KNOW you can do it. Get in there. Redo that test. Prove them all wrong. You won’t fail because you’re right… and you’re not alone.
Oh, this made me just sick to read this. I am so sorry, and I truly hope it is a false positive. You so deserve something good to happen to you. Fuck. This just plain sucks. **Hugs**
I’m a lurker….and I am crushed for you. I sincerely hope this all works out.
It has to be a false positive.
This is a nightmare.
Do get your mom to fight for you.
I love you.
Oh god, Cali. Oh fucking hell on a stick.
I agree with the people who say that the clinic should be financially liable, NOT YOU, for any expenses the recipient incurred. The clinic put you on their list, the clinic matched you, the clinic got you started. THEY ARE LIABLE. You didn’t lie your way into it so you didn’t do anything wrong.
I hope it was a false positive and I hope they realize that they shouldn’t put the brakes on something two women have their hearts set on. I hope this is all a bad dream.
I, too, will contribute to your IVF. You can’t stop now, Cali.
*HUG*
What the hell?? There’s just no way this isn’t a false positive. If it weren’t, surely it would have already been seen in all of the bloodwork you’ve already had. Can you get another test asap??
I’m just, I’m flabbergasted by this news.
Cali…..this sucks….no words can express how badly i feel for you. Thoughts and prayers are heading your way that this is a false positive.
I am so sorry. I am speechless. I am incredibly pissed off for you! This is sooooo on the clinic.
Oh Cali,
I’m so sorry this is happening right now. I SERIOUSLY can’t believe they wouldn’t have done all of this before the cycle. Is this a second test for you? Did they do one when you were first accepted into the program, and this is just a routine before transfer, as a pp mentioned happened to them?
Can’t they move forward with the cycle and freeze all the embryos until all this is cleared up?
THEY should have liability on this and not you, and in addition THEY should have liability on putting you through all of this. I seriously would think you’d have a good case to sue them for your expenses to get up there, your time and aggrivation, physical pain of the shots and ultrasounds, and emotional distress on all of this. I’m not one to jump and immediately sue someone, but you HAVE been damaged by this and it’s not your fault. They should have done these tests prior to this point in the cycle, prior to you even starting stims or getting on a plane.
XO XO XO XO
I can’t believe this. I can’t believe how devastated you must feel. OMG. I am so sorry. So, so sorry.
Jesus Christ.
I agree that they are responsible. They should have tested you prior to beginning and never let you get this far… it’s got to be a false +
BASTARDS.
Can you make some version of this public, so that if we direct people here to donate they can see what crap you’re going through?
I just wanted to say that really sucks. I’m sorry. You don’t need that. I hope it works out somehow.
Oh, babe. Fuck. Fuck. Fuck.
Hang tight, honey.
xoxoxox
OMG, we’re both so sorry. And kind of speechless. That’s just… unbelievable!! Rather dramatic of the clinic to just cancel everything without the 2nd test result. Really hope you can carry on with the treatment! Blimey. Hugs. xx
I can’t believe this! My jaw has hit the floor. I am so so sorry and hope that something can be worked out!
This is so incredibly fucked up. And I agree with the multitudes above: this isn’t your fault, and it sucks. I know you’ve been knocked on your ass today, but you have to get back up RIGHT NOW and start fighting. Verify your original screening results; demand a rush on the retesting; make it clear that you will not be held responsible for an oversight/error made my your home clinic; etc.
And if worst comes to worst, see if it’s possible to adjust your stims to the level of an injects cycle (I have no idea if this is possible, just a brainstorm), and do an IUI. I know you’ve done injects before, but if you absolutely, positively cannot do IVF this cycle, it would be better than nothing at all. xoxo
no no no no! oh, Cali. i’m so sorry. i love you and i’m praying for you.
cali ~ this is the most fucked up thing i think i have ever come across… i am swearing and ready to come at the door swinging for you!!! i am having a good talking-to with The Universe about this and the unfairity of it all. [sorry - words get made up when i am mad]
sending you so much love right now…
Oh Cali…I don’t even know what in the hell to say except it can be true. I was so sure this was going to be it for you. Roger gets paid on Friday and you will definitely have a donation from me.
Oh hon, huge huge huge hugs.
Much love,
Shan
I have no words. I am just so, so, so very sorry. I am in a shock – I really am. We are here for you – please know that.
love ya lots,
Wendy and RO
I am SO SORRY Cali you definitely don’t deserve that. I send you hugs and even though I know that you are devastated right now, I hope that it’ll help at least a little…
I have now left the shocked and devastated for you stage and am currently in the enRAGED for you stage. How can they fucking cancel based on what is almost certainly a false positive?! Can they uncancel? What the fuck is wrong with the medical profession when they will cancel based on a test that’s so often falsely positive?! And they can just call and say it like it’s a call they make every day?! What complete and utter BULLSHIT! Don’t they know that two women’s emotional well-being hangs in the balance when they casually make that phone call?! I’m not a litigious person, but I’m with whoever said you should sue them for pain and suffering. Are you supposed to just ovulate?! Unbelievable!
I’m sending a little love your way. I can’t imagine how you feel right now. I only hope you are able to line things up in a way that will still make this work for you.
What the FUCK? It has to be a false positive. False positives are kinda common I hear. Hep C is transmitted in very specific way and if you haven’t pursued said ways then HOW can you have it?? And why hasn’t it showed up before???? This is not right and you do not deserve this hell.
Of course you being you, you worry about the other woman. But let that go. This sounds like a clinic fumble. Not your fault at ALL or hers. And when it is rectified teh clinic shoudl be picking up some of the extra tab here.
Let your mom get as involved as she wants. She is an attorney. Let her throw her weight around.
I am sending love and warm thoughts….
By the way fabforty is me….
There is no way IN HELL those eggs are going to waste. No fucking way. We’ll figure something out. WE WILL.
What the hell!?!? Why can’t they put you on hold until Friday? This is NOT ok! Oh my god, i am shaking right now–i have no idea what to do/think/feel… i swear to you if i had the $$ there would be a Western Union wire headed your way RIGHT NOW.
i give blood all the time, and last year i had a false positive Hep C test that put me out of their system for 6 months. So yes, it is a common mis-diagnosis, and i’m sure you’re just fine.
But how can they just CANCEL a whole cycle until they have the results? i just don’t get it.
I’m late, but I love you.
Saying that I am sorry will surely not comfort you in this abysmal time that you are having to experience. I sit here, like you, in total shock of your news. I pray that all of this is one incredible mistake and that all of the shattered pieces of this puzzle can be put back together.
Sending you love and light,
Rosany
I am so, so sorry this is happening to you. I just know this will turn out to be a false positive.
Ah fuck! I am so sorry sweetie… it is excruciatingly unfair and I will continue to think of you!
I’m so, so sorry too. I’m sending as much karma as I can your way. Hugs.
Oh sweetie – I cannot believe this has happened. LM and I are both dreadfully upset for you that “modern medicine” has let you down this way. I’m just praying my freaking arse off that the next test comes back clear and somehow things are worked out xxx ooo
I am so, so sorry.
Coming from Stirrup Queens to just add my own “THIS SUCKS”! I hope they get this straightened out. I’m glad someone at the clinic is fighting for you so you were able to continue the stims. Good luck!
I’m so sorry this has happened. You have given so much to me just by sharing your journey. I’ve been truly inspired by your bravery and strength and I’m happy to contribute and give some of that back to you. I only wish I had more to give.
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