Wow. It's been...a while.
I don't think I ever meant to fall off the face of the planet. It's just what "had" to happen in my mind to prevent utter catastrophe. I have had several women contact me over the last 20 months (WUT?!) and ask me questions about my experiences seeking Reproductive Immunology treatment, as well as what my outcome was, so let me give a brief synopsis:
The result of my FET in June of 2016 yielded an uncomplicated, although very medically-heavy, pregnancy of twin girls. They will be 14 months old this week (DOUBLE WUT?!). I can't pinpoint exactly how this happened, and can't really believe it happened either. My last fresh cycle was in February 2016. I think I may have blogged about the utter emotional breakdown I had at my baseline u/s when I only had 3 follicles. Yea, the girls were born exactly a year after that day. It just goes to show how things can be so different in a year...or, in the case of infertility, can be exactly the same year after year, intensifying the pain. That's how Halloween was for me. For some reason, every Halloween that passed where we didn't have kids was a painful reminder of what we didn't have, and honestly, what I thought I would never have.
To recap my cycle briefly: In February 2016 I did a MDLF protocol with human growth hormone (HGH). I was also on prednisone while stimming and a broad-spectrum antibiotic (Augmentin). The best I can assume is that those two things were given to me to decrease any inflammation and fix any infections I may have had that could have impacted my egg quality. I yielded 12 eggs (the most ever), 5 were mature at retrieval (Yay propofol day!!) and 2 matured overnight...giving me 7 eggs. I seriously always get 7. 3 turned into blasts...2 on day 5 and one on day 6. I then went into 3 months of Lupron Depo injections to put me into a medically-induced menopause and "reset" my lining. I began FET prep with letrazole, more antibiotics, prednisone, and eventually lovenox (a combo of my RE's plan and my RI treatment with Dr. KK)....I had blogged about flying out to KK for a lining check, which went well, and transfer was the following week.
And I had a beta that kept increasing. A completely foreign experience.
Working with KK is...intense. I flew out for my initial workup, before transfer, and again at 9 weeks pregnant to check my uterine blood flow. I had a bleed at 8w4d that was found to be a SCH and was put on "couch rest." I took it so seriously that I stayed out of work for 6 weeks. Finances be damned! I was so terribly, terribly afraid. KK required betas every other day until the first ultrasound, after which she required weekly u/s throughout the first tri. Because I also have a metabolic disorder that can impact heart development as well as growth of a fetus, plus a twin pregnancy, I was solely seen by MFM and has u/s every two weeks until 28 weeks, then weekly. KK required blood work every week through 20-something weeks when I finally weaned off estrogen and PIO, and then it was every two weeks. I began IVIG infusions around 9 weeks because KK's theory is that the development of an SCH can be related to an immune process, although my immune levels (NK and Cytokines) were all over the place, but never terribly high. I did IVIG every 2-3 weeks from 9-34 weeks. Insurance covered it but we still were responsible for $540 until we met our OOP max. I also had to adhere to my metabolic protocol which revolved around protein restriction in my diet and protein supplementation drinks that have the amino acid that I can't process correctly removed from it. I also had to do weekly b/w for my phenylalanine level. I wound up making it to my scheduled c/s at 37w4d.
What contributed to my success? I don't know. I did a new protocol, used HGH, was doing an RI treatment, had blasts for the first time ever, and reset my lining plus used antibiotics and primed for the FET with Letrozole, which is thought to improve lining issues.
With so many women reaching out to me, and with me beginning to cycle again, I felt like re-starting this would be helpful for everyone. Infertility doesn't go away, and neither do the deeply ingrained emotions. So, to honor that, and to hopefully help some others...here I am. Again.
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Wednesday, April 4, 2018
Friday, June 24, 2016
Catching Up: The Post- Depot Lupron FET
Hi!
Sorry it's been a while. Life has been absolutely nuts.
Here is how things went down for this long-awaited transfer, 7 months in the making.
Like planned, I had my last DL injection on 5/1. Per Dr. KKs protocol, I started 10mg Prednisone daily on 5/3 (21 days before CD1, or the first day of FET meds). So far, so good.
I was instructed to send in blood work two weeks later. This involved some pretty easy blood panels, like metabolic panels and CBC, but also the Kwak-Kim specific panels like NK cells and Cytokines. So, they needed to be mailed to the Rosalind Franklin University lab. To do this, I called local hospitals to see if they would do what's called a "courtesy draw" for me, where I provide the orders and the vials of blood (which KKs office mails me), they draw the blood and then they mail it for me. Dr KKs office also provides me with a FedEx clinical pak to package the vials and all I have to do is print an overnight shipping label. The phlebotomist then puts my pack o' blood with their FedEx pickup and it arrives in Chicago the next day.
My first results showed that my cytokines, which had been slightly elevated at 35 (normal is less than 30.6) were now very elevated at around 49. My NKs, which had been 4.5%, were now around 16% (anything above 15% is elevated). This led me to the great IVIG debate, which I will write about later.
From there, my Prednisone was increased to 15mg daily. Fine. Other than that, I just kept taking my Synthroid.
On 5/23, I had my baseline. They had a hard time "finding my lining" which I guess was to be expected coming off of the DL - after all, it was supposed to strip my lining and bring back a new, shinier version.
From there, I started my FET prep - this involved 2mg Estradiol three times daily, Augmentin to make sure I didn't have an infection, and Letrozole (Femara) once daily. So far, so good.
On 5/28 (CD 6 of meds), I began a daily lovenox injection (40mg) per Dr. KK for my poor uterine blood flow.
On 5/31, my husband surprised me with a puppy!! Chaos ensues :-)
On 6/2, I flew out to Chicago for a Friday 6/3 appointment at Dr. KKs office to check my uterine blood flow, run some blood levels and meet with Michell, the NP, regarding my plan going forward. I had been super anxious that whole week because I decided not to do IVIG despite having it covered by insurance, but was happy to find out that my uterine blood flow was awesome, my lining looked amazing (in fact, Michelle said it was rare that they see a lining looking this good!), and while my NKs had gone up slightly to 17%, my Cytokines were way down at around 36 I think. I was super excited!!! I was officially cleared to start Progesterone per my RE the next day.
My transfer was scheduled for the 6th day of Prednsone on Thursday 6/9. I scheduled pre/post acupuncture on transfer day and we headed to see Dr. Wang. Luckily, both embryos thawed and continued to expand! I didn't ask about grading because honestly, it wasn't going to matter. Good embryos don't always implant and crappy embryos sometimes make babies.
I was also instructed to stop lovenox 24 hours before transfer and begin it 12 hours after, and starte 200mg prometrium twice daily beginning 48 hours after transfer.
I had a really challenging TWW. My chemical in October had produced pinching sensations and cramps and slight nausea. This time, I didn't feel much of that - some twinges here and there, and some slight dizziness towards beta, but that was it. I always go beta or bust.
At 8dp5dt, I had my first beta. I was a nervous wreck all day and had them call my husband. After a delay in getting the beta (thanks, Quest), it came back at 78! I was elated....and also ridiculously anxious! Beta at 12dp5dt came back at 634 and today, at 14dp5dt came back at 1945! Holy crap!
My symptoms come and go...anything from twinges to cramping to back aching to very very slight nausea. I'm praying that on Monday, my next beta (per Dr KK, who wants betas up until you see a HB), keeps heading in the right direction!
Sorry it's been a while. Life has been absolutely nuts.
Here is how things went down for this long-awaited transfer, 7 months in the making.
Like planned, I had my last DL injection on 5/1. Per Dr. KKs protocol, I started 10mg Prednisone daily on 5/3 (21 days before CD1, or the first day of FET meds). So far, so good.
I was instructed to send in blood work two weeks later. This involved some pretty easy blood panels, like metabolic panels and CBC, but also the Kwak-Kim specific panels like NK cells and Cytokines. So, they needed to be mailed to the Rosalind Franklin University lab. To do this, I called local hospitals to see if they would do what's called a "courtesy draw" for me, where I provide the orders and the vials of blood (which KKs office mails me), they draw the blood and then they mail it for me. Dr KKs office also provides me with a FedEx clinical pak to package the vials and all I have to do is print an overnight shipping label. The phlebotomist then puts my pack o' blood with their FedEx pickup and it arrives in Chicago the next day.
My first results showed that my cytokines, which had been slightly elevated at 35 (normal is less than 30.6) were now very elevated at around 49. My NKs, which had been 4.5%, were now around 16% (anything above 15% is elevated). This led me to the great IVIG debate, which I will write about later.
From there, my Prednisone was increased to 15mg daily. Fine. Other than that, I just kept taking my Synthroid.
On 5/23, I had my baseline. They had a hard time "finding my lining" which I guess was to be expected coming off of the DL - after all, it was supposed to strip my lining and bring back a new, shinier version.
From there, I started my FET prep - this involved 2mg Estradiol three times daily, Augmentin to make sure I didn't have an infection, and Letrozole (Femara) once daily. So far, so good.
On 5/28 (CD 6 of meds), I began a daily lovenox injection (40mg) per Dr. KK for my poor uterine blood flow.
On 5/31, my husband surprised me with a puppy!! Chaos ensues :-)
On 6/2, I flew out to Chicago for a Friday 6/3 appointment at Dr. KKs office to check my uterine blood flow, run some blood levels and meet with Michell, the NP, regarding my plan going forward. I had been super anxious that whole week because I decided not to do IVIG despite having it covered by insurance, but was happy to find out that my uterine blood flow was awesome, my lining looked amazing (in fact, Michelle said it was rare that they see a lining looking this good!), and while my NKs had gone up slightly to 17%, my Cytokines were way down at around 36 I think. I was super excited!!! I was officially cleared to start Progesterone per my RE the next day.
My transfer was scheduled for the 6th day of Prednsone on Thursday 6/9. I scheduled pre/post acupuncture on transfer day and we headed to see Dr. Wang. Luckily, both embryos thawed and continued to expand! I didn't ask about grading because honestly, it wasn't going to matter. Good embryos don't always implant and crappy embryos sometimes make babies.
I was also instructed to stop lovenox 24 hours before transfer and begin it 12 hours after, and starte 200mg prometrium twice daily beginning 48 hours after transfer.
I had a really challenging TWW. My chemical in October had produced pinching sensations and cramps and slight nausea. This time, I didn't feel much of that - some twinges here and there, and some slight dizziness towards beta, but that was it. I always go beta or bust.
At 8dp5dt, I had my first beta. I was a nervous wreck all day and had them call my husband. After a delay in getting the beta (thanks, Quest), it came back at 78! I was elated....and also ridiculously anxious! Beta at 12dp5dt came back at 634 and today, at 14dp5dt came back at 1945! Holy crap!
My symptoms come and go...anything from twinges to cramping to back aching to very very slight nausea. I'm praying that on Monday, my next beta (per Dr KK, who wants betas up until you see a HB), keeps heading in the right direction!
Friday, May 13, 2016
One More Shot
I was made aware of this project and felt that I needed to share it. An infertile couple made a documentary out of their infertility struggle and the 2 minute preview had me crying like, well, a baby.
There is also an 8-minute preview, which I haven't viewed yet. Honestly, the footage I have seen is so raw and so true and I give them so much credit for having the guts to do this, and the desire to lend a voice to infertility.
Check out the trailer and donate so they can finish this puppy and unleash it on the world for fertiles and not-so-fertiles alike!
Friday, May 6, 2016
The Game Plan
My last Depot Lupron injection was May 1st - the last in a series of 3. You can read more about my premature foray into menopause here. While I have been on Lupron injections, I have been working with Dr. Kwak-Kim, a Reproductive Immunologist based out of Chicago, to formulate an immune protocol for my FET. My RE has been out of the country visiting family, and he is now back in action, and together we also came up with a plan. The marriage of this entire preparation is overwhelming.
Here's what we got so far:
5/1 last Depot Lupron injection
5/3 begin Prednisone as part of immune protocol to decrease cytokine level
5/17 blood work for Dr. KK - CBC, metabolic panel, TSH, NK cells and Cytokines (NK and cytokines have to be drawn and then mailed to Dr. KKs lab - a local hospital is willing to do this "courtesy draw" so long as I supply the orders, test tubes, etc - which Dr KKs office supplies me with)
5/23 Baseline u/s for FET...if all goes well I start estrace and Augmentin ( a broad-spectrum antibiotic to r/o endometrial infection)
5/28 Begin Lovenox as part of my immune protocol
5/31 Repeat the blood work panel from 5/17
6/3 Fly to Chicago to have my uterine blood flow checked. I am also due for a lining check for my RE so I plan to have them do it there...if all goes well, I'll start progesterone
6/8-6/10 ****crossing my fingers SO DAMN HARD**** that this will be a transfer of 2 blastocysts.
So many thing are different about this cycle, and these differences bring hope. Hope is a scary thing.
Our prior cycles were antagonist with equal parts Menopur and Gonal F. The only difference between them was the fact that we used estrogen priming for IVF #2. Both yielded 7 usable eggs, of which 4 and 3, respectively, fertilized. Both cycles were 3dts - our first IVF we did an eSET, and our second we transferred two.
This cycle has been a total 180...we did MDLF with estrogen priming, we used a lower total dose of stims, we used a small amount of Menopur instead of equal amounts, we added HGH, we found out that I was heterozygous for MTHFR and began treating that with Methylfolate, we visited the RI who put me on levothyroxine for my thyroid, I took prednisone during stims for my cytokines, I began self-treating cytokines with fish oil and chia seeds, we primed my uterine lining with Depot Lupron for 3 monthly injections, we are doing a FET for the first time, and we have blasts!! Something we have never had before...and, finally, I'll be on lovenox for poor uterine bloodflow and prednisone for my cytokines. If that doesn't work, we will use IVIG, which was somehow, some way, approved by my insurance (but will still be $520/infusion until we hit our OOP max).
Whew...did you keep up with all of that?
These changes excite me, but they also scare the shit out of me because nothing will guarantee that it works. I'm at a point where I feel it is impossible to be pregnant, and I am trying so.damn.hard to keep my chin up, pretend the glass is half-full, keep my eyes on the prize, see the silver lining, and all sorts of other cliché things that people say when you want to crawl in a hole and die over how shitty your life is going.
Time will tell, and for once in this whole shitty journey, I'm really hoping that it is finally MY time.
Wednesday, May 4, 2016
Well, its been a while...Depot Lupron update...
Hey there. I have been pretty MIA for the last couple of months. I would love to say that it's been because I've been traveling the world, or [insert super fun thing here], but I haven't. I have been working, going to my clinical rotations, teaching and doing homework for class. Boo. Oh yea, I've also been in a menopausal state, so that's been pretty awesome.
My life has basically been like this:
Depot Lupron hasn't been that bad for me...luckily. The list of side effects would make your head spin...blood in your stool, muscle pains, bone pain, etc. I've just been hot flashing like hell. I would say I get about 1 an hour...sometimes more or less...it's like a furnace is lit in my body. My legs and arms heat up at rapid speed...then it reaches my face and I start to sweat. It's sexy, trust me.
The hot flashes and I were getting along swell until they fucked with my sleep. I'm a great sleeper usually. Despite being anxious and anal retentive, I can fall asleep on a dime. Once the hot flashes came to town, it's been a never-ending cycle of waking up screaming hot...remove blankets...wake up freezing...put blankets back on...wake up because I am screaming hot again, rinse, wash, repeat.
Needless to say, wearing layers has been my friend.
My brave husband administered my last injection. I'm not sure if I mentioned this before, but the needle is 2" long and made for someone that you would see on TLCs "My 600lb Life," So as of last weekend, there are no more Depot Lupron injections in my foreseeable future which is beyond exciting. I'm ready to have some estrogen back in my life!
My life has basically been like this:
Depot Lupron hasn't been that bad for me...luckily. The list of side effects would make your head spin...blood in your stool, muscle pains, bone pain, etc. I've just been hot flashing like hell. I would say I get about 1 an hour...sometimes more or less...it's like a furnace is lit in my body. My legs and arms heat up at rapid speed...then it reaches my face and I start to sweat. It's sexy, trust me.
The hot flashes and I were getting along swell until they fucked with my sleep. I'm a great sleeper usually. Despite being anxious and anal retentive, I can fall asleep on a dime. Once the hot flashes came to town, it's been a never-ending cycle of waking up screaming hot...remove blankets...wake up freezing...put blankets back on...wake up because I am screaming hot again, rinse, wash, repeat.
Needless to say, wearing layers has been my friend.
My brave husband administered my last injection. I'm not sure if I mentioned this before, but the needle is 2" long and made for someone that you would see on TLCs "My 600lb Life," So as of last weekend, there are no more Depot Lupron injections in my foreseeable future which is beyond exciting. I'm ready to have some estrogen back in my life!
Friday, March 11, 2016
The Stratification of IVF
A couple of weeks ago I was perusing the interwebz for some infertility blogs and came across something that made me particularly stabby. A blogger (I can't remember who or else I would totally call her out) waxed poetic about how painful infertility has been for her. I totally empathized. In fact, I applauded her candor. She spoke about how she was jealous of pregnant friends, the pain of being the odd woman out, and the desperation she felt. She even went so far as to admit that she sometimes wished her friends would miscarry. It's a horrifying thought, but I applauded her bravery in stating that as I think many of us have had those same thoughts - not because we want anything bad to happen, but because misery loves company and sometimes it's satisfying to see someone else struggle so you aren't the only one. I gave her credit for her openness.
She totally had me at 'hello.' until I saw that that bitch got knocked up her first fucking cycle of IVF. What the EVERLOVING FUCK does she know about pain?! Hopelessness? Desperation?
In my opinion - not a damn thing.
She posted that blog entry a couple of years ago, so I immediately clicked to her home page to get the latest updates. And guess what?! She was pregnant AGAIN on her second cycle. Oh bitch please.
She knows nothing about the pain of infertility because she hasn't had a failed cycle. Hell, she hasn't had multiple failed cycles. Until you get to that point, you don't really know the horror of infertility. I'm not trying to be a bitch, and I'm certainly not trying to play the pain Olympics because that doesn't get anyone anywhere, but still.
I've come to realize that for some, IVF is the Golden Ticket. It works all the time, 100% of the time. For others, IVF is the beginning of another long, painful road. And in that realization, I've begun to understand that the pain of infertility is doled out via a stratification system. We can all agree that it sucks badly to get to the point of needing IVF, but I hope we can also agree that it sucks even worse to need three, four, five or more cycles to have a baby compared to those who need one.
What made this particular blogger worse, is that not only has she gotten knocked the fuck up twice in two transfers, but she has enough frozen embryos left over to start a small country. Fuck her. Try being on IVF #3 with fewer embryos to my name over three cycles than she got in her one damn shot.
I'm not trying to minimize anyone's pain, I'm just trying to show that it is different, and likely more painful to be walking down my path. I've also come to realize that people who get pregnant on their first cycle of IVF tend to make me angrier than the "normies" who get pregnant the good ol' fashioned way. I think its because I feel so far removed from the normal procreators that their fertility doesn't offend me as much anymore (unless they make stupid comments about infertility, in which case they get a swift mental punch in the throat from me), yet those doing IVF are on a more even playing field than me and their success just highlights my failures even amongst the infertiles. And if you got pregnant by IUI? Good gracious you are pretty much fertile in my mind.
I was so angry reading that post. I almost felt as if she had no right to feel what she was feeling because she ended up getting what she wanted, and getting it easily. Yet here I am, far deeper down the shit hole than she will ever be, and I haven't gotten my happy ending, and quite frankly, strongly doubt I ever will.
I know I'm inappropriately minimizing the feelings she had that prompted her to write that blog entry, but for that I am not sorry. She got her happy ending. Now where is mine?
IVF #3: The Conclusion
It was the best of time, it was the worst of times. Yes, my latest IVF cycle can be paralleled with the timeless classic, A Tale of Two Cities. Somehow, some way, this cycle managed to be my worst and best.
To get straight to the good stuff, on
Aside from the 5 mature, it looked as if a few more may mature in the lab. Thankfully, two more did. That brought our total to 7. Seven. This is the same number of eggs retrieved for IVF #1 and 2! My ovaries are pre-set apparently.
The Holy Grail of this cycle came in the form of ICSI. This is the first time we did it and 6 of our 7 eggs fertilized! All 6 were still cookin' by day 3, albeit 4 were good and 2 were crapping out. We decided to press on to blast. That was terrifying! Three were blasts on day 5, and one was able to be frozen that day, with the other two frozen on day 6.
Now that I am a few weeks out from stims, in my non-hormonal state, I'm thrilled with this cycle. Three blasts!! 3!!! We have never, ever had a blast before! Yet, in my drug-induced stupor I was a mess. It was so hard for me to reconcile that we had 12 eggs but not all 12 were mature. And I was frustrated with our low blast rate, even though it is an absolutely normal and expected number. I was ungrateful, and hormonal, and bitter. Truthfully, I was having a hard time with the reality that I won't ever make it rain eggs. I won't ever be the girl who gets 25 eggs and 19 embryos and winds up with 10 frosties. And I hate that. I was also feeling a ton of pressure to get many embryos because this cycle was to be followed with depot lupron for three months for my wonky endometrium, after which, I may not stim as well for a while.
On day 6 after retrieval, I got an e-mail from Dr. Wang and he told me the second blast had been frozen but we still had to wait on the third, which, without some growth, wouldn't make the blast cut. I lost my shit. I wrote a long and angry e-mail (not anger directed at him) and he immediately called me. This is why I love him and he's the best ever. He spent thirty minutes talking me off the ledge and, telling me that my cycle went just as expected, explaining why he really felt that depot lupron is the right choice for me and giving me some hope. He made me feel so much better, and I was able to begin to realize how wonderful this cycle went.
We all agreed not to test the embryos at this juncture. I'm praying that we have at least one baby in there. Please, oh please. It's time. It really is. I hope the HGH did it's job and we have some excellent quality pre-babies in there.
As for now, I'm slowly settling into a menopausal state and trying to enjoy a well-deserved break from infertility treatments. Hopefully I can take some time to decompress, relax, focus on school and try to get back into shape for a short period of time before my body is (hopefully!) ruined by a baby.
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