Suppression Check

Well, I am well and truly suppressed, I guess.  Nothing going on at my baseline appointment on Saturday morning.  Of course, after 5 weeks on BCP and over a week on Lupron, I would have been surprised if there was.

I started spotting on Thursday and lo and behold had just about full on AF by yesterday. I was really surprised, I hadn't expected it at all.  I think it's because when I'd been on BCP previously and gone off it, it took a full month before AF came.

So, L and I started the Bravelle injections yesterday.  NOT a fan.  I suppose, who is? It burned....buuurrrned.  For a good 10 minutes afterwards as well.  I'm going to do the Lupron shot first so that after I'm burning I don't have yet another shot to go.  I really hope the next week or so goes by fast because I'm not going to enjoy it.

Last of the 10 Units

I work in an office of primarily men. All are over 45 and all have multiple children, except one. That one told us a week ago that his wife would be giving birth in a week and he’d probably be out for a couple weeks. The GC knew about this but it was the first the rest of us had heard about it.  Guess he’s very private about it.  Too bad women don’t have the same opportunity.

Anyway, his wife gave birth yesterday. Everyone in the office is so excited – it’s the first baby born in this office, as everyone else has adult or nearly-adult children.  I’m very happy for him, and not so jealous for some reason – it may have to do with the fact that he’s over 45 and it’s his first child (although I have no idea how old his wife is, and for all I know, she could be younger than me).  But the carrying on in this office is definitely making me jealous.  They’re calling it “our office’s baby” – which is SO STUPID, considering he didn’t even tell us till last week. He doesn't want it to be THEIRS (ours).

It’s just a little taste of what will happen if and when my coworker/office roomate (the only other one of baby-making age) in this office gets pregnant again quickly. I will have to listen about it from everyone.

And I can’t deny I want that to be me the fuss is made about.

I have my baseline appt. tomorrow morning.  I am really excited today for some reason about it. I hope everything goes well.  Today is my last injection of Lupron at 10 units. Tomorrow, provided my appt. goes well, I will add the second injection, the stims, starting tomorrow until egg retrieval.

I will still be taking the Lupron, but only 5 units from now on (until they tell me otherwise).  Now I need my ovaries to work and produce lots of good-quality eggs!

Difficult

Today is a difficult day.

A difficult day right after yesterday, which was for the most part, an easy day.

It amazes me how quickly it can change.

Today I’m in mourning.

Not for anything or person in particular, just a general sense of grief for what is not happening with my body.
I swear I can feel my ovaries shutting down.  Silly? I don’t know.  Probably. But during my IUI cycles I could always feel them growing, so I don’t think it’s a reach to think I can feel the opposite.

I suppose when stims start and I feel them growing then I might feel better about it, but today I’m in mourning for my body that has been through so much, yet still isn’t good enough for me.

If I look at it objectively, anthromorphizing a body as separate from a person, I truly feel sorry for all that it’s been through.

It’s probably wondering, “Are you ever going to stop abusing me? You stopped my heart, multiple times, you changed my anatomy, you stuck foreign pieces of other animals in me to force me to work more correctly, you’ve pumped me full of numerous hormones and chemicals and such, and now this? How much more do you think I can take?”

When I think of my body separate from who I am, I feel really badly for it.

Which in turn makes me think, why doesn’t God feel badly for me?

I was thinking about this already when I read today’s blog post by Single Infertile Female, which is the only ongoing infertility blog I can find by someone who doesn’t already have a kid or hasn’t been successful yet.

And it’s safe to say, I’m having a crisis of faith.

I’ve been having one for awhile.  It crystallizes every so often, and I feel so very alone. Despite my wonderful husband, I can still feel so very alone.

And I wonder when will it be my turn? With every pregnancy announcement, with every post on FB, or God forbid U/S posted (and SERIOUSLY, I don’t understand why anyone thinks anyone else wants to see their U/S picture) …I just feel more and more alone.

And what did I ever do to deserve it?  Sometimes I think I must have been a very bad person in a previous life, because why else would I have been born with such a serious heart defect?

Believe it or not though, I never actually was self-pitying about my body at all until this infertility journey of mine started.  When I was younger, I was actually PROUD of my body, of my heart, for dealing with so much and still beating away.  But now, years later, I really don’t feel that way anymore.

I’m angry and I’m sad.  I used to feel like God was that Father that would hold me in His arms and tell me everything would be ok and now I just feel hated.  I’m not good enough for him to care about.

It’s so hard for me to stay positive, especially after so long at this.  I’m definitely a glass is half-empty kind of girl, someone who doesn’t want to be TOO positive in case things don’t turn out well. I want to be prepared for the bad news.

But after all this time, I really ought to know, whether I prepare myself or not, I am always DEVASTATED when I get the bad news.  I don’t think it matters whether I’m 100% gung ho or skeptic – it  hurts all the same. Yet I’m afraid to let myself be 100% gung-ho – like that will jinx it or something.

So silly when NOT being 100% gung-ho doesn’t do anything for me either.

Today someone suggested I make a list of all the positive things I’ve learned from undergoing what I have.  It’s so hard, but I think it would be a good exercise. I don’t know if I could come up with much, if anything…but here goes, in no particular order:

1. I have learned how persistent I am – I DO NOT GIVE UP.
2. I have learned that I would not be able to do this without the husband I have.
3. I have learned that I cry an awful lot, but crying actually makes me feel physically better.
4. I have learned how appreciative I will be when I finally hold my child in my arms, and not everyone is.
5. I have learned that it is far better to be allowed to try and get pregnant and be unable to, then not be allowed to try and get pregnant at all.
6. I have learned that there are certain people, not many, but definitely some, who will let me take take take right now, not give as much back, and still love me anyway because they understand that one day, I will be able to give give give to them and WANT to so much.

So, 6, not bad.  More than I would have thought.

I'm All Right

I’m pleasantly surprised.

Four shots down, a bazillion to go, and things are going ok.

So far, I haven’t noticed any side effects (knock on wood).  No hot flashes, no horrible headaches.

Honestly, going on BCP was harder.

But speaking of BCP, last night was my last pill.  It’s Lupron injections only until Saturday when my Bravelle injections (stims) start.  I am hoping that getting off the BCP is easier than the getting on was.  Now THAT caused a lot of headaches.

I’m also starting to worry about oversupression. Why do I Google? It just stresses me out.  Apparently, having been on BCP as long as I was and then taking Lupron can cause the stims to not work as well, which may end in a cycle cancellation.

I think I would die if that happened.

I’m trying to tell myself that I was on BCP for a year before we started trying (before then, the depo shot) and my cycle was textbook perfect as soon as I got off. But that was a different brand, so I don’t know if my body would react the same way.

But my RE knew about it and approved of me taking 5 weeks worth of “white only” BCP, so that must mean he wasn’t concerned.

Anyway, back to the injections.  I barely feel them, except for one that L gave me Saturday night that hurt like a motha for some reason and drew blood. I don’t know what the heck he did, but I am not anxious to repeat the experience. Luckily last night went fine.

And, in unrelated but still awesome news, I had my first facial in 10 years thanks to a birthday gift certificate.  Holy cow, my skin feels soft and supple and hydrated, and just…awesome.  I want to do it again.

No results yet from my b/w from last week. I’m anxious to see what they found, if anything. Hopefully they’ll get back to me soon.

Ok, I’m all over the place today.

Hold Onto Your Hats

Today is the day the fun begins.

I called my new insurance provider to get my preauthorization going and beyond the first hiccup, where she asked me what my diagnosis was, everything went fine.

Because I called for preauthorization for infertility services, and I was like, “Um, my diagnosis is infertility?”
That wasn’t good enough, she needed something more specific, but there is nothing more specific. nothing’s been found to be wrong, except we don’t get pregnant. Or stay pregnant.

So finally I said, “Unexplained infertility, it’s the only thing I can think of.” And that apparently was all she needed.

My IVF benefits are off the hook. I just hope the rest of my medical care doesn’t suffer because of it.

I called IVF Jen to give her the number, and I’m all set to go.

Injection #1, tonight.

Letting Go

As close as I’m going to get to writing about that day:
(From an email to a local newspaper)

I am a 32-year-old woman who’s been married to her high school
sweetheart for a 3.5 years now, and we have been trying to have a baby
for 2 of those years.  We have a diagnosis of unexplained infertility,
and, as no other tests have come back showing that there’s anything
wrong for us, the next test for me to get was a laparascopy to check
out my uterus.  My doctor, [RE], set up my
surgery at St. Peter’s Hospital for December 21st, 2010.

However, in addition to this diagnosis, I also have a repaired
congenital heart defect, so my cardiologist in Boston also sent a
lengthy note to [my RE], who in turn gave it to St. Peter’s
Hospital, about my condition and the fact that I needed cardiac
anesthesia.  In fact, this was the reason for going to St. Peter’s in
the first place, as Albany Memorial, where I was originally scheduled
to go in November 2010, did not have anesthetists with the proper
experience.

On December 16, 2010, I went to pre-op testing at St. Peter’s as
planned. I had bloodwork, an EKG and met with a nurse for a
specialized nursing interview because of my heart condition.  I
personally viewed my cardiologist’s note in her binder and we
discussed my condition.  All in all, I lost about a half day’s work
for this testing.

On Monday, December 20th, I received a phone call from St. Peter’s
informing me that due to my previous blood transfusions in prior heart
surgery, I needed to come in for additional bloodwork for
cross-typing/matching in case I ended up needing a blood transfusion
for this relatively minor procedure. I went to St. Peter’s during my
lunch hour to do the additional bloodwork they needed.

My surgery was scheduled for 1pm on December 21st, 2010. Per the
directions I received, I did not eat or drink anything after midnight,
so as you can imagine, 1pm seemed like forever away.  I arrived right
on time at 11am for my surgery, was brought back with my husband to
the initial surgical room, where a nurse met with me to go over my
records, and inserted an IV.  I had not yet heard anything about my
cardiac anesthetist and it made me extremely nervous, so I kept asking
if I could speak to him/her.

Finally, around 1pm, I said goodbye to my husband and was wheeled up
(without glasses) to PACU, the staging area before surgery.  Blind
without my glasses, I kept asking to speak with the cardiac
anesthetist, because this was to be my first non-cardiac surgery and I
was worried.  I hadn’t signed any consents yet, so I knew I couldn’t
be wheeled in just yet, but without my glasses I felt at such a
disadvantage.

Finally an anesthetist (Dr. Fantuzzi? not sure of spelling) came over
to talk with me, and I asked whether he did cardiac anesthesia or not.
He told me he did not, and I told him I needed someone who did. Once
again I informed him about my condition, and then and only then, did
he disappear somewhere to discuss with other doctors.
45 minutes later, my [RE] told me they would not be doing my
surgery because they did not feel comfortable with their ability to
monitor cardiac anesthesia for a patient with a congenital heart
defect.

I was floored. Here I was, IV in, hairnet over my head, literally 2
minutes away from being wheeled into surgery, it’s now around 2pm and
they NOW determine this? They had had my chart for nearly a month!
What made it worse was a Dr. Desai came to speak to me after [my RE]
 (also dumbfounded with what had happened) and
condescended to tell me that no matter what I told them, they were not
going to do the surgery.

There is NO WAY I would want anyone who doesn’t feel capable of
monitoring my condition doing surgery on me.
But I was furious. This surgery can only be done during a certain time
in my cycle. The hospital not only had caused great emotional distress
for me, I would also need to wait an additional cycle until I could
get in to Albany Med or someplace else to get it done. As someone
who’s been hoping and trying for a baby for so long, the news was
additionally devastating.  As well, I also lost a day and a half (and
my husband a day) of work because of this.

I asked to speak to patient rep. about this and spoke with Kathy
Foley.  She told me she it was completely their fault, she would get
to the bottom of it, and the next day called both myself and my
husband to say they were going to do a QI into the incident.

Of course, we wanted someone held responsible. Because this could have
easily become a tragedy due to the hospital’s inability to read my
chart in advance of my surgery. I’m a young, healthy woman, vocal
enough about my own medical care because I know how easily someone can
fall through the cracks.  What if I’d been an elderly lady without the
energy to constantly be reminding everyone of my condition?

Needless to say, 4 weeks had gone by and I had not heard anything from
St. Peter’s. I called Ms. Foley yesterday to ask what is the status of
the investigation.  She called me back today and said that the review
was done, that there had been a lack of communication by one
anesthesiologist Dr. Phytone, who reviewed my chart weeks ago, but was
out the day of my surgery and my chart was not communicated to anyone
the day of the surgery.She admitted they did not need my needs and
their “lack of communication caused my emotional distress.” She said
they had changed their communication methods, whatever that means.

But honestly, it’s more than just my emotional distress (which
honestly, was the worst thing out of this whole incident but something
you can’t put a price tag on.)  I lost a day and a half from work
because of St. Peter’s.  My husband lost a day.  I told her, “since
you have admitted your fault, and you caused me to go through this
when it was your people who did not read my chart as you should have,
I want to be recompensed for the time we lost.” She told me she needed
to call Ann Martin, a patient rep.  But only 20 minutes later, she
called me back, said she spoke to Sharon Fuld of Risk Managment, and
that they do not that. So, on top of all the emotional distress they
have caused due to THEIR negligence, they won’t even refund the $800
dollars my husband and I have in lost pay.  Given what happened, the
least they could do is try to make me whole that way.

I did everything they asked me to do. Pre-op testing, pre-surgical
preparation, I made sure they had my doctor’s note.  With all that I
went through, they won’t even pay for my lost time? It’s insult on top
of injury, and I’m disgusted.

I will NEVER go to St. Peter’s for anything ever again based on their
treatment of me and my husband.  And I guarantee that they likely
would have made more than $800 if I ever did.

Needles

Should I be afraid that the veins in my arms are going to either blow up or disappear one day?

I think my left arm isn’t very good anymore.  I used to have no problem getting bloodwork done from both arms, but within the last year I’ve had multiple people tell me there’s not much there anymore and a few others try and miserably fail, resulting in two sticks.

My right arm vein is pretty knobby, but I’m guessing there’s a lifespan for everything.
Well yesterday, on my day off from work, DH and I headed downstate  2 hours to Pougkeepsie to do the bloodwork scheduled by my MFM.

That resulted in about 12 tubes of blood being taken.  She tried with a butterfly needle but it kept getting clogged, so she pulled that out and used a straight needle, filling up the rest of tubes. So  each of the tubes got two different sets of blood.

I mean, it’s all my blood and it was only about a minute apart, so that should be ok, right?

Because I’m just waiting for the phone call that tells me they made a mistake, that I need to come down again, that they didn’t take enough, or they lost the tubes they did take. I mean, it’s always something.
And also, I woke up at 5am yesterday in a little pain, probably caused by snowshoeing the day before, and since I was only half lucid, I quickly swallowed two ibuprofen before I thought, “Hmm, shouldn’t have done that.”

Because it was a fasting blood test.

And not that I understand why this bloodwork had to be done on a fasting level, by any means, since it has nothing to do with glucose, but since we’re looking at genes and antibodies and anticoagulation – it strikes me that taking ibuprofen was the wrong thing to do and might mess up my numbers. I mean, you’re not supposed to take aspirin and ibuprofen before surgeries for a reason.

So I’m an idiot.

The Countdown Is On

IVF consent review yesterday morning, followed by a long meeting with our IVF coordinator to go over the schedule.

1 week from yesterday, Lupron starts.  On 1/23, BCP stops (hurray, I canNOT wait to get off it, it makes me feel like crap), then a week later, stims, a week later retrieval, and a few days later than that transfer. Should be done with everything except the Great American Waiting Game by 2/14. I actually think it would be awesome if the transfer took place on Valentine’s Day.

Man, a whole month from today, I will just be entering the 2WW.  I’m so sick of this entire waiting process.
Jen went over how to do injections, which I think made DH feel better.  It’s the mixing of the meds in their little bottles that was worrying me, not the actual injections themselves. We also have a DVD for the finer points of it (getting out air bubbles, etc) so now I think we’ll be ok.

What worries me most is A) OHSS and B) huge bloating. My pants are pretty tight as they are. I actually went out and bought a couple more pairs 2 sizes up at TJ Maxx this week hoping it would help, and yet, they’re not THAT loose on me.  I’m probably wearing the wrong size regularly, sigh….

As for meds, I currently have sitting in my house:

1. Leuprolide Acetate (generic for Lupron) with needles
2. Chorionic Gonadotropin (HCG) with needles
3. Crinone
4. Doxycline Hyclate (for day of retrieval I think)
5. Medrol (steroid, not sure for what)
6. Phernegan (anti-nausea medication)
7. Bravelle (stimulating drugs) with needles.

Are we ready for some fun?

The Box

My box o’ IVF drugs came yesterday.

DH is the one that will be administering them to me, so he delved into it more than I did. It’s nice not having to deal with this part of the stress.

The lab that the MFM doctor wants me to go to is open on MLK day, walk in hours AND takes my insurance. So nice that that is all coming together.

Tomorrow we meet with the RE to go over the IVF consent forms.  One week later, we start.

Fingers crossed.

I Hate Incompetence

If I have to deal with one more incompetent doctor, I might scream. I truly might.
I’ve seen enough incompetence to scare anyone away from seeing a doctor ever again. It’s truly truly frightening.
I spoke with IVF Jen (the name I’m giving to my IVF coordinator – the one who’s personality grates on me the wrong way) last week in my round o’ calls I made. We talked about the meds and starting and such, and after we hung up, she called me back about 2 minutes later.
“You know,” she told me, “in the bloodwork you had done for your [failed] surgery it came back that you have extra antibodies in your blood.”
“Yes, I know,” I told her, completely bored.
I’d heard all this before. It’s due to the two blood transfusions I’ve had during my two different heart surgeries, but mostly from the first one (the horrible one)  when I lost a LOT of blood.  With “foreign” blood entering your body, sometimes it will develop antibodies against it. It doesn’t affect me generally.  But I now need special blood typing every time I have a future surgery. Whenever you have a surgery, they screen your blood for type and stuff, so if you’re O- or whatever, they have something on hand in case you need it.  Well, I’m a plain old O+, which is the most popular blood type out there, and not a big deal, but because of those antibodies I have, I always need a second screening so that I get a more specific bloodtype beyond the O and beyond the +.
I’ve always wondered what would happen in an emergency. It always takes a few days for that second screening – what do you do if you’re in a car accident, God forbid, and need blood in 20 minutes?  Anyway…not that I should be concerned about that right now…
So Jen says to me, “maybe you should meet with Maternal Fetal Medicine to find out if that antibodies could have any affect on a developing fetus? I don’t think you have any clotting factors, and it’s not the same thing, but this way you could feel better knowing for sure going forward.”
I had actually asked a bunch of doctors (my regular OB when we started trying, and even my cardiologist) if those transfusion antibodies could be a problem and everyone said no.  But I thought it was a good idea to talk to a specialist in the area and get some peace of mind, so I went in today.
The MFM had the results of the thrombophilia panel I had done last May under my OB. And today, 8 months later, I learn that I have the MTHFR mutation. I apparently have one copy of the C677T mutation and one copy of the A12980 mutation.  Separately, they mean nothing. Together can be the problem.
In addition to that, as soon as I actually get pregnant (well, maybe not as soon, but at some point in the first trimester) I have to get another titer done.  Because of my transfusion antibodies, I tested positive for Rh(c), whereas most people are RH(a) or (b) apparently. (That’s the more specific bloodtype they’re always testing for).  If the baby is also RH(c), then no problem, but if it’s RH(a) or (b) then I would need additional meds.  Terrific.
I also found out that my OB did not do certain thrombfilia tests – including Factor V Leiden and some others.  Wonderful. I’ve been spinning my wheels for 8 months and now, one week before IVF, find this out?
MFM doctor wants me to go to a very specific lab all the way down in Poughkeepsie to get additional bloodwork done. 2 hours away, ugh. And of course I will do it, because I always do whatever a doctor asks me to do.
But I wish I could stop getting incompetent ones.

Okay, Ready to Deal

I gave myself till after New Year’s to chill about the upcoming cycle.  On BCP for nearly 3 weeks now, there was nothing to do. No temping, no drugs, no injections – so STOP THINKING ABOUT IT.

But of course, best laid plans of mice and men.  Not quite so easy.

It’s past New Years’ now of course. I tried to convince myself to hold out till next week, which will still be a full week before we start, but alas, of course not. So today, I’m making phone calls.

The first to my fertility pharmacy.  I love how there’s a special pharmacy just for this stuff. Just one more thing to make you feel like a freak, but then on the other hand, there’s no…”Can you spell Letrazole out for me?” either.

They’d called me last week to set up shipment for my IVF drugs.  I figured it’s really important I at least have that set up – ’cause not having them could make things disastrous.

Of course, why do they have to list every single drug the RE has called in for me?  It’s just utterly overwhelming and not helpful at all.  Especially because at this point, I have no idea what they are and only a vague understanding of what they do.  I might be an expert at it all before I’m done, but I’m not now, and I’m really hoping I never will be.

So she lists  at least 60 million drugs, all with multiple refills. Some have 3, some have 5, and I’m just sitting there shaking my head going, “Why?”

I’m not sure I have the refrigerator space for all of this.  I still have injectible IUI meds from last month that weren’t used.

Anyway, I’m due to get them next Tuesday, a full week before I should need them. That should satiate my appetite for making sure I have everything in order.

I did ask them to find out what my insurance will cover for all of that though. I’m nervous because I’m switching insurances on 1/20, and the one I currently have doesn’t cover IVF. So why would it cover IVF meds? But I’m hoping that the drugs might have dual purposes that gets them covered under something else. Otherwise, this will be an expensive meds month.

I have a call into the insurance gal at my RE’s office as well to make sure I do everything right so we can hit GO on 1/20.  I have my doubts it will go so smoothly, but I’m going to do my best.

And I am trying to keep myself from calling up my IVF coordinator  to find out Right.Now. what my calendar will look like for the  next month, because I’m thinking I want to schedule a vacation for right after if things don’t work.

Always the planner for worst possible outcome, me.