Tuesday, September 23, 2014

Did I Mention I Hate Waiting?

After my surgery, I decided my body needed a detox from hormones, needles, meds etc. before cycling again. This was great foresight but not it's driving me nuts because I have no idea when AF will come!  If I had gone on the pill, I'd know she'd be here in almost exactly 10 days. But nooooo. I am hormone free so I just have to hope my body doesn't do something crazy and go for a super long cycle.  I want to get this next FET in before Thanksgiving. I'm ready to go...and I hate the uncertainty of not knowing when AF will really come. 

I updated by annual blood work for the clinic yesterday so that's off the list. No more needles for at least 6 more weeks. Is it strange that I miss injecting myself with drugs?!?!

I've been reading more about endo, hydro and IVF these days and found something interesting on Dr. Sher's blog about secondary infertility and endo:

"Only IVF, which involves extracting eggs before they are released (ovulated) into the “toxic peritoneal environment,” can circumvent this problem. This explains why a woman with endometriosis who is lucky enough to become pregnant on her own or following the use of fertility drugs (with or without intrauterine insemination), often experiences secondary infertility later in her reproductive years. It also explains why normally ovulating women with endometriosis and patent Fallopian tubes do not benefit significantly from intrauterine insemination, with or without the use of fertility drugs, or from surgery to remove endometriotic lesions (since many endometriotic deposits are non-pigmented, thus invisible to the naked eye and cannot be removed surgically). In such cases only IVF will improve the odds of a successful conception. Simply put…. if a normally ovulating woman who has mild to moderate endometriosis conceives following IUI, surgery or the use of fertility drugs, it is probably IN SPITE OF, rather than due to such treatments."

I know we used IVF for C, but it's also interesting that women with endo who conceive on their own then subsequently have secondary infertility because of it. I guess there's another reason that I should have trusted my instincts earlier on and gotten the HSG - OR rather, my RE should have tried to figure it out.

In other news, I'm sifting through Halloween costume ideas for C.  I wanted him to wear something adorable and snuggly - after all he's still my baby. Well we tried a few on including a very cute total body puppy costume and cue FREAK OUT.  Hahha, he looked adorable but kept yelling, "Puppy off! Puppy off!" with his red little face and jumpy little feet. So I think he's going to be a fireman instead. A little more grown up but I think a coat and hat won't freak him out. We'll see though. The costume should be here in a few days. 

Thursday, September 18, 2014

The Plan

Yesterday morning I had my post-op with my surgeon. He confirmed that both tubes were non-functional. I looked at a few pictures and he pointed to swollen tubes.  I had a light period this time around because he scraped my lining during the hysteroscopy - but my uterus looked great. I should get my period like I normally would. This surgery should greatly improve our IVF chances. And then I hopped off the table and left.

I didn't ask too many more questions for a number of reasons. The tubes are gone, nothing can be done to change that at this point. If they were sorta bad, really bad, or horribly bad doesn't matter. They were bad enough to be removed. The other reason I didn't ask more questions - I am FREAKING TIRED OF ASKING QUESTIONS!  Research, planning etc. is exhausting and I think I'm nearing my limit this time around. I'm ready for something to go right again.

I also had a consult with the local RE I consulted with previously - the only one in the area who is a "believer" in immune systems issues. I wanted another check after my conversation with Dr. Braverman.  I was in her office for less than 10 mins. She sees no real reason to retest me for immune issues. She confirmed what my RE and SIRM said - that hydro is a significant barrier to IVF success.  I should simply transfer again and hope for the best...keep the protocol the same. There's no reason to think I have anything else going on since I tested negative 2 years prior. So there you. She concluded that she was sure I'd be pregnant soon.  Ugh those words are hard to hear sometimes when you know medically they're right, but it's just not working out that way in reality. 

So I will cycle when I can my period. We'll kick things off with one shot of Lupron and birth control pills. The Lupron was discussed earlier and I asked if we could still use it with the cycle just to be safe in "resetting" my lining.  We'll be going with steroids but no Lovenox. My RE said that  there's too much risk for little reward given the surgical findings. So we're a no on that which is what I expected him to say. He sees no need to do the endo biopsy again which I'm thankful for. And no need to adjust timing of  the transfer. So it's going to be a pretty straightforward FET this fall. Looking at a calendar, I'm guessing transfer will be sometime around Thanksgiving. It seems awfully far away, but I'm hoping it will fly by.

Friday, September 12, 2014

My Son Found My Tattoo

"Butterfly, mamma, butterfly!"

These are the words my son exclaimed this morning as I was getting dressed. It took me a few seconds to look around the room but then I realized my litttle guy was pointing to the small-ish butterfly tattoo I have on my lower right back/tush. I often forget I even have a tattoo. You know, the one I got to impress a guy when I was 19 yet convinced myself at the time it was all for me. Well, at least I had the sense to get it where 99% of folks can't see it-even in a bikini. 

But C saw it today so now I think we have begun the "do as I say not as I do" parenting. Happy Friday! 

Thursday, September 11, 2014

Updating the Blogroll

For the last 6 months, I've really been trying to figure out what to do with my blogroll.  Some of the blogs I followed in my quest for C haven't been updated in over a year.  Yet, I don't have the heart to delete them from the list as I felt/feel such a kinship with many of them.  They helped me through such a difficult time in my life and in the off chance they update their blogs, I surely don't want to miss that.

I wonder what they're up to sometimes. I wondering if they're still trying, moved on, or gave birth to #2. I wonder if they're content with #1 and how come I can't seem to find my peace as well.

I have been increasingly trying to find blogs from writers who struggled for #1 and who are also in the trenches for #2.  After all, misery loves company, right?  This is a more difficult population of bloggers to find as many who are currently mothers just don't seem to have the time to blog, or have lost interest.  Should I leave them up and keep hoping they'll come back, or should I turn the page?

Wednesday, September 10, 2014

May the Odds Be Ever in Your Favor

Just skip on over this post if you're not a crazy obsessed person like I am.  When I start to freak out about infertility, facts help to ground me so here's yet another installment of infertility statistics gang.

What are the odds?

  • Each of my FETs had a 50% chance of success
  • My last PGS cycle had a 70% chance of success
  • The hydrosalpinx reduced the pregnancy rate by 50% 
  • All percentages were quoted by my current RE
The Math:

For each of FET #s 1 through 4:
True chance of success was really only 25% (50% x 50%) and failure 75%

Cumulative chance of success with FETs #s 1-4:
1 - (.75 x .75 x .75 x .75) = 68% chance that at least one of those should have worked. Still that's decent odds over time.  

Now the PGS cycle true odds reduced by hydro = 70% x 50% = 35% chance of success and 65% failure

Over the course of the 5 transfers, the odds that at least one of those would be successful =
1 - (.75 x .75 x .75 x .75 x .65) = 80% chance that at least one of those transfers should have worked. Even with the hydrosalpinx! Yikes, those are even more depressing odds that things haven't worked out.

As I feel the hope starting to rumble down in my heart for our next transfer, I'm brought back to the facts. With all these transfers, we still had a really decent shot at success and yet we still failed. The next transfer could definitely epically fail despite finding what I have hoped is the smoking gun to our compounding fertility issues.  So that brings me back to more math.

A new PGS cycle with pregnancy rates restored due to removed tubes should bring our chances for this cycle back to 70%.  And the cumulative rate of success over 6 cycles you ask? Well it's 94% chance that at least one of those transfers should work.  And if we get to transfer the last embryo...it's 98% chance.  If we get that far folks, I think we might have to wake up and listen to the math, just not meant to beat the odds.

Tuesday, September 9, 2014

More Questions Than Answers - yet another consult

So yesterday afternoon I had my phone consult with the great and powerful Dr. Braverman.  I guess I sorta picture him like the Wizard of Oz.  Anyway, my impression was less than stellar really.

I called on time...they put me on hold to wait for him. After 2 mins I noticed that the line had hung up. So I called back...and was then on hold for about 10 more minutes while I waited for him.  He started off by saying he was sorry he was late but was glad I had called back after hanging up. I told him I hadn't hung up at all and was disconnected, probably by his staff but I didn't say that part. He launches into some chit chat about football that was entirely uninteresting before diving in. I guess he was trying to be friendly but I was more interested in his medical opinion. 

I don't think he read much of what I had filled out in that questionnaire that took me over an hour to complete.  I have to do the recap in bullets or else I'll get confused, so here goes:

  • He said that because I had endo, then I absolutely have immune issues going on.  No matter that I already have C.  No matter that the hydro was found.
  • He said that even with PGS normal embryos, there are other things going on. Endometriosis affects the quality of the embryos and even though they look good, they' really could be bad.  I should consider having the endo removed...yet another laparoscopy at one of his specialists.
  • All the immune testing I had done before was worthless and I would need to repeat it all.
  • He couldn't even begin to recommend treatment without getting all the blood tests in. 
It was a bit of a surreal conversation after that. I told him that I've got these two normal embryos left and I'm not inclined to do another surgery any time soon. He agreed that perhaps the easier course of action was to do the immune workup, treat for issues and then use the existing embryos.

I wanted to talk about the hydro and my surgery.  When I told him the HSG revealed a hydro, he said it could have been a false positive (superficial I think were the words he used) and a hydro should have shown up in an US.  To which I replied that I've already had the lap and my tubes were shot to hell and virtually "unrecognizable." No tubal issues were ever noticeable on any of my 100s of ultrasounds in the past year.  He skimmed right over this HUGE glaring issue in my background. One that the entire RE and OB community supports - that hydrosalpinx, especially billateral ones, significantly decrease your pregnancy chances - the quote is 50% success reduction. This is where I call BS if he's giving no weight to a huge, researched, documented fertility issue.

Now I've done the math (which I'll post about later) and accounting for the hydro and the PGS normal embryo, over the course of the last 5 transfers, there was still an 80% chance that at least 1 embryo would stick.   But we ended up in the 20%, so there could be something else going on of course which is why I kept the consult but to completely dismiss the hydro was whacky to me.  

I'm not sure what I expected him to say, after all reproductive immunology is his bread and butter.  So of course he's inclined to say that's the issue.  It just made him feel unbelievable to me to gloss over and not address a documented anatomical issue agreed upon by the greater medical community. 

What was also annoying was that doctors talk in hypotheticals all the time and he could absolutely have given me a preview of the immune treatments he uses. It's not like there's that many out there and even Dr. Peters from SIRM told me the course of action he'd follow if any markers came up.  Again, I didn't get a good feeling from Dr. Braverman because of this. While part of me wanted to believe that he would be objective, I didn't get that feeling at all and was really in it to take my money, test me for everything under the sun and then charge a boat load for it.

Also, we didn't really have time to go over it in the short phone call, but I'm not sure how he'd explain the fact that I conceived before via IVF with a documented case of stage 4 endo.  Aside from steroids, baby aspirin and folgard...nothing else was added to my successful protocol. These simple things I have already been using in all my subsequent FETs and IVFs so, I'm really not sure how he'd be able to explain how my endo is absolutely the thing that's causing our failures.  Besides, as E pointed out - any doctor that is THAT sure of himself without doing a comprehensive exam on the patient and of their past medical records might be a little too cocky.  

The kicker was my email from the finance lady.  Get this...
  •  When you register as a management patient, they process one fee of $3,000 for the entire first phase of care.  This will include ordering specific immune testing, completing our analysis and interpretative reports on your immune test results, having a complete consultation where Dr Braverman will discuss your testing, medical history, make a correct diagnosis and finally, design your immune protocol. 
  • In the event your testing indicate there are no immune findings, you will receive a credit for $2,000.  You will only be charge for the service that are rendered.  
I really wonder how often this happens. Even fertile women have immune markers that's why the field is so controversial.  I think they just put this in there to make you feel better about spending so much money.  So I guess I got what I paid for...nothing for nothing.

Disclaimer:  I am sure that Dr. Braverman has helped many women, he's just not the right doc for me. 

Monday, September 8, 2014

Hypothetical Deadlines

So you know how, as an infertile, you make up hypothetical deadlines for when you hope to be pregnant:

"Surely, by next (insert holiday, birthday, milestone etc.) we'll be pregnant!"
"Of course I'll be pregnant before (insert your 25 yr old co-worker who just got married)."
"Please dear God, let me be pregnant before (insert annoyingly fertile friend) has her second baby!"
"Ugh, it's sorta gonna suck if (insert infertile friend) has her #2 before me too!"

Well one of my deadlines which I was 99% sure I was gonna make, just got blown up during my morning commute - another Royal baby on the way! It took all my energy not to throw up in the car as soon as I heard the news. WTF, Prince George was born 6 months after C! I thought I had at least another 6 months before I had to worry about this hypothetical deadline.  Today is just a bad day and I am so not happy about all the freaking people in this world who can just get pregnant when they want to.

My cousin is hugely pregnant right now so that's all anyone talks about at family gatherings...not to mention my sister is pregnant as well. I think I'm going to have to skip a few Sunday dinners because it's just too much right now especially after having my tubes removed.

I'm still super pissed that I'm being drug through the infertility mud for a second go round. It seriously feels like a cruel cruel joke that now I've uncovered a completely NEW fertility road block in our quest for baby #2. I won't ask what more could be thrown at me right now - because I seriously don't feel like tempting fate any further.   

Thursday, September 4, 2014

Permanently Infertile

They're gone...they took them both on Tuesday. My tubes, that is.  I will never have a miracle pregnancy but I suppose on the bright side, I'll never need birth control again. It's a very strange feeling waking up to having less body parts, especially those which are so important to a woman of reproductive age. I had an appendectomy a few years ago, but no one needs their appendix for anything so that didn't phase me at all.

Surgery went pretty much on schedule. I didn't sign the consent forms until I had spoken directly with my OB because I wanted to be clear about saving the other tube if it looked OK. He of course agreed. I woke up about 2 hours later in the first recovery area.  I vaguely remember being wheeled down the hall by 2 nurses, one discussing her toddler. I think that's what they were talking about or else I was having a dream.  I was really out of it for the first 10 mins but I was anxious to know what had happened in the OR. No one had told me yet!  I recall hearing the time and it didn't make sense - It was much later than what I thought it would be. Surgery was only supposed to go 60-90 mins. It was 2.5 hours later in reality which made me think there was a lot more going on in there than we had originally thought.  I managed to eak out a few words to my nurse to ask if one of both tubes were gone. She said she didn't know the outcome of the surgery unfortunately but she was sure my doc had spoken to my husband who would tell me the results.

I swear the next 30 minutes might as well have been 3 hours. I was so anxious to hear what had happened to me!  All I wanted to do was go back to sleep but I know they wouldn't release me to the other recovery area unless I was more alert. I mustered up all my energy and finally was able to be transferred. E came in a few minutes later and I asked him what happened before he could even sit down.  He was a little shocked too that no one had given me an update at least.

E relayed the news from my OB - both tubes were removed. They were virtually unidentifiable and were totally swollen. There was a little bit of scar tissue that was removed as well. Uterus looked fine though.  So there we go...permanently infertile. I asked then if my OB was going to come back in and talk with me, but he wasn't able to. They called him for me and we chatted very briefly over the phone. There was going to be absolutely 0% of getting pregnant on my own with tubes looking like that. They had to go.  Of course, I spend the next hour feeling a combination of pissed off, sick to my stomach, and sorry for myself.

I was/am angry that I had to be the one to push my RE into looking for more answers.  I am not the one with the medical degree. He should have found this...someone should have found this.  I guess I'm somewhat grateful my RE scheduled the HSG before the hysteroscopy I requested, otherwise I could have been under for the hysteroscopy when the hyrosalpinx was discovered and had to have the lap at a later date. I guess he saved us a small bit of time, pain and suffering but nothing compared to the last year of 5 failed transfers!

So now I'm recovering pretty well. I need to check in with my RE here about what he wants to do for next steps. I'm still not convinced we need to move doctors but we'll see. I am keeping the consult I have for immune related testing just in case. That's next week.