So we had our consult with RE #4 over a week ago. With all the flurry with the new baby coming, I haven't had a chance to post.
I was a little angry that RE #4 asked us to come in and the first thing she said was that she didn't have all the results back yet. WTF? Seriously...weird but anyway. I guess she wanted to get a feel to which way we were leaning because if we wanted to be very thorough, she'd have to order more tests anyways. Who knew?
I am posting my results to help others like me:
Thrombophilia Panel:
1.) Factor V: normal
2.) MTHFR C677T Mutation Detection: Heterozygous mutated
3.) Prothrombin Gene Analysis: Normal
4.) PAI-1 4G/5G Gene Polymorphism: Homozygous mutated
5.) Factor XIII V34L: Normal
6.) MTHFR A1298C Gene Polymorphism: Heterozygous mutated
T-Regulatory cells: 1.2 (normal)
NK Assay (% Killed)
NK cells (50:1 = 18.3) (25:1 = 15.4) (12.5:1 = 13.1)
CD3: 85
CD19: 5.9
CD56: 4.1
DC19,CD5: 27.1
Anit-DNA Histones: all negative
Anti-phospholipid antibodies: negative
LAD: negative
TH1:TH2: 25.9 (tnf) and 12.6 (ifn)
T-reg: 1.2
So at this initial meeting she wanted to get a feel for where she should turn next. She said NK weren't elevated. To me, they seem a little high but for the Beer Center, they're fine - anything under 20% is OK, but other reproductive immunologists want the NK cells lower <15%. Anyway, she disregarded that and moved on to the LAD negative result. This means that I don't have enough of these antibodies in my blood and the therapy used is no longer legal in the US. We would have to go to Mexico and we're not willing to go that far just yet. She said she didn't think the LAD negative result was all that troubling because my T-reg cells were normal. Also good news was that my APAs were not elevated. Given that we weren't prepared to do the LIT therapy in Mexico, she said she didn't think I needed any other immune related testing - apparently those 18 vials were just the tip of the iceberg.
There were a few red flags on the thrombophilia panel though. I am compound heterozygous for MTHFR which means I will need to add Folgard to my protocol - this is basically extra folic acid, b6 and b12 vitamins because my body doesn't process these things well enough. She also suggested baby aspirin - there were enough red flags on the thrombophilia panel that she requested I do more blood work to see if I also needed to add Lovenox to my protocol.
So in the end, she concluded that she didn't think my issues were necessarily immune related. She did think the blood clotting could be an issue, but the major change we would need to make is to change the protocol and add ICSI which my other RE had already suggested. She doesn't really see the need to do the endometrial biopsy either because my NK cells weren't elevated in her opinion.
I did do the additional blood work she requested that day (another 12 vials - sheesh) and I have the results of those back too, but I will post more on that tomorrow.
So we walked out of there ready to move on to another IVF with the current clinic, hoping to get a RX for the Folgard and to get more guidance on if Lovenox is needed.
I've read all your magazines, drunk all your tea, sat in all of your uncomfortable chairs and wondered about all the others waiting alongside me...finally not waiting anymore for our little one but back on the road for another.
Monday, March 26, 2012
Sunday, March 25, 2012
My Namesake
The new little one in the family has my name! Well, my first name is her middle name but same difference. This was very unexpected and very special. I can't explain why, but the minute I saw her photo, all my feelings toward my sister disappeared.
I am still a little jealous of course, but not like I used to be. What I want most in this world is to be there and hold my new niece. I feel so much love towards her, it's unreal that I could have felt so terrible during the pregnancy. I honestly can't describe this sudden change of heart but it was instantaneous upon seeing her picture and I absolutely cannot wait to hold her. I miss her already and I've never met her - strange, huh?
Maybe it's because I know somehow, some way - and some day, we'll have our own. And that day is getting close, I can just feel it.
I am still a little jealous of course, but not like I used to be. What I want most in this world is to be there and hold my new niece. I feel so much love towards her, it's unreal that I could have felt so terrible during the pregnancy. I honestly can't describe this sudden change of heart but it was instantaneous upon seeing her picture and I absolutely cannot wait to hold her. I miss her already and I've never met her - strange, huh?
Maybe it's because I know somehow, some way - and some day, we'll have our own. And that day is getting close, I can just feel it.
Wednesday, March 21, 2012
My New Niece is Here
I stopped crying yesterday long enough to get the news that the little one had arrived safe and sound. Still no word on her name yet - my sis and brother-in-law are still trying to decide between 3 names and 2 middle names. This kid better have a name before they leave the hospital! The baby is adorable and I've already gotten word my mom and sis thinks she looks like me. I'm very flattered.
This whole experience is very bittersweet as I'm sure many of you have experienced.
As for me... I have updates on immune issues and next cycle plans which I'm working on posting. But the short of it is RE #4 doesn't really think I have immune issues, I still haven't gotten my period, we aren't going to do the endometrial biopsy and I'm already on BCPs for an April IVF. Phew - that was a lot but I'll post more later.
This whole experience is very bittersweet as I'm sure many of you have experienced.
As for me... I have updates on immune issues and next cycle plans which I'm working on posting. But the short of it is RE #4 doesn't really think I have immune issues, I still haven't gotten my period, we aren't going to do the endometrial biopsy and I'm already on BCPs for an April IVF. Phew - that was a lot but I'll post more later.
Tuesday, March 20, 2012
She's in Labor...and I Can't Stop Crying
My younger sister went into labor this morning pretty early so by the end of the day we may have a baby. She was due this coming Friday but a few days early is still pretty close. I am praying that everything goes smoothly and I think I'm in need of some prayers myself. Every time I stop to think about my new niece, I break down in tears. Dear God, please help me get through today.
Wednesday, March 14, 2012
AF is a No Show
Here we are on CD 40 and still no flow. I had to call RE #4's office to check on the immune system testing bills that I've been charged so I brought up my current AF dilemma. They want me to come in for BW and US tomorrow morning. I was going to go to my previous clinic, but the new doc will want to see the results anyway. I just figured it's probably easier to go to the new place even though I'm comfortable with the old. Ahhh - so many docs.
Also, as soon as my nurse heard it was me on the phone, she was like, "Oh, good. I've been meaning to call you. Dr. RE #4 has reviewed your blood work results on the immune testing and wants you to come in for a consult!" I was not expecting that at all. I'm glad the results are in, but when we first spoke, RE #4 said she'd just call if she got the results in. So now that she wants us to come in, I'm prepared for the worst - even though I have no idea what the "worst" looks like. I was able to get in for the consult on Friday so I'm hoping to have some answers then. Will let you know everything I find out.
Oh and the kicker - the nurse actually suggested we might be pregnant right now. I explained that we have had intercourse about 3 times in the last 40 days and every time we've used a condom per instructions from the doc. She said she's seen stranger things happen.... I'm pissed she got my hopes up.
Also, as soon as my nurse heard it was me on the phone, she was like, "Oh, good. I've been meaning to call you. Dr. RE #4 has reviewed your blood work results on the immune testing and wants you to come in for a consult!" I was not expecting that at all. I'm glad the results are in, but when we first spoke, RE #4 said she'd just call if she got the results in. So now that she wants us to come in, I'm prepared for the worst - even though I have no idea what the "worst" looks like. I was able to get in for the consult on Friday so I'm hoping to have some answers then. Will let you know everything I find out.
Oh and the kicker - the nurse actually suggested we might be pregnant right now. I explained that we have had intercourse about 3 times in the last 40 days and every time we've used a condom per instructions from the doc. She said she's seen stranger things happen.... I'm pissed she got my hopes up.
Monday, March 12, 2012
CD 38
This is a long and never ending cycle. I know many of you have dealt with cycles much longer than this. I honestly don't know how you do it. This is incredible unusual for me - I've never gone more that 35 days, but then again I've never had a chemical pregnancy before either. I'm annoyed that this cycle is dragging out because then that delays my biopsy, which delays the results, which delays our plans! UGH so frustrated.
I called RE#3's office today and they said if I don't get my period by Wednesday that I should call and come in for blood work and an US on Thursday morning. They are going to check to see where I am in my cycle and they might give me Provera. Never had it so I have no idea what to expect. I've never missed a period since I started getting them. Anyway, if they decide I need Provera, I'll have to call RE #4 (the one who'd doing my immune testing) to make sure taking the Provera won't screw anything else up.
My parents are visiting this weekend and it made me sad to think that if we were still pregnant, this would be the weekend we'd tell them the news. I can't believe how much this stuff sucks sometimes.
I called RE#3's office today and they said if I don't get my period by Wednesday that I should call and come in for blood work and an US on Thursday morning. They are going to check to see where I am in my cycle and they might give me Provera. Never had it so I have no idea what to expect. I've never missed a period since I started getting them. Anyway, if they decide I need Provera, I'll have to call RE #4 (the one who'd doing my immune testing) to make sure taking the Provera won't screw anything else up.
My parents are visiting this weekend and it made me sad to think that if we were still pregnant, this would be the weekend we'd tell them the news. I can't believe how much this stuff sucks sometimes.
Saturday, March 10, 2012
March Madness
Coming to you live from my living room where I have spent so much of this late winter - soon-to-be spring, huddled on the couch yelling my brains out. I am a HUGE college basketball fan. My alma mater is (read = was) a big force in the Big East Conference. I thoroughly enjoy a good game and plan to spend the rest of March and early April drinking beer and continuing to yell at the television.
It hit me today, I feel as if I'm living my very own March Madness....I hate waiting. I wish I was doing IVF right now but instead I'm awaiting the results of my very expensive (more on that later) immune testing results and my period (still not here, WTF) so I can schedule my endometrial biopsy. It's maddening- this process, the waiting, the bills, the roller coaster.
It hit me today, I feel as if I'm living my very own March Madness....I hate waiting. I wish I was doing IVF right now but instead I'm awaiting the results of my very expensive (more on that later) immune testing results and my period (still not here, WTF) so I can schedule my endometrial biopsy. It's maddening- this process, the waiting, the bills, the roller coaster.
Wednesday, March 7, 2012
Waiting for AF
I am anxiously awaiting the arrival of AF so I can schedule my endometrial biopsy - step 2 in the immune workup. Today is CD 33. My longest cycle has been 34 days so if I don't get my period by the weekend, something is up. I have never skipped a period but then again, I've never been pregnant before so I am not sure what my body is doing. I will be really pissed if my body tries to drag this process out even longer than I had thought.
Also, E and I did end up getting an invite to my pregnant, engaged friend's wedding in May. E doesn't want to go (he's already on the hook for 2 other weddings this year and just can't take time off from work), but my mom and dad will be there so I might just go alone. I don't think I'll bend over backwards to try to attend this out-of-state affair, but if I can make it, and flights aren't terrible, I'll suck it up and go. There will be champagne I'm sure so that's a plus.
Also, E and I did end up getting an invite to my pregnant, engaged friend's wedding in May. E doesn't want to go (he's already on the hook for 2 other weddings this year and just can't take time off from work), but my mom and dad will be there so I might just go alone. I don't think I'll bend over backwards to try to attend this out-of-state affair, but if I can make it, and flights aren't terrible, I'll suck it up and go. There will be champagne I'm sure so that's a plus.
Tuesday, March 6, 2012
Today's Bloodwork
Mark my words, I will never ever ever again complain about getting blood draws for fertility or other purposes. Piece of cake compared to the horrible experience I had this morning giving my blood for the immune work-up.
First of all...this quick little in and out appointment that the nurse said we'd encounter - not so quick. But she hands me my vials so I can go get my blood drawn on the bottom floor and there were 18 vials. Yes, 18 vials folks! I counted. E had 4. I had about 6 that were jumbo, 6 that were regular size and 6 that were small.
So she starts drawing blood from my right arm. Quick prick and we're pumping - no problem. About 4 jumbo vials in and 3 whole mins of blood flow...my arms starts to tingle and I am getting a little warm. The nurse says that because there's so many vials, they will likely have to use both arms because my blood will start to clot. Sure enough, 4 vials later - blood stops coming.
At this point, I think I'm going to faint. I've never fainted before but the warm, nauseous, sweaty, tingly feeling I had was spot on I'm told. She pricked me again on the left arm....I managed to make it through the rest but I thought I was going to vomit all over the white floor.
I am a blood-giving champion today and I so hope this testing allows us to make a better decision with treatment moving forward.
First of all...this quick little in and out appointment that the nurse said we'd encounter - not so quick. But she hands me my vials so I can go get my blood drawn on the bottom floor and there were 18 vials. Yes, 18 vials folks! I counted. E had 4. I had about 6 that were jumbo, 6 that were regular size and 6 that were small.
So she starts drawing blood from my right arm. Quick prick and we're pumping - no problem. About 4 jumbo vials in and 3 whole mins of blood flow...my arms starts to tingle and I am getting a little warm. The nurse says that because there's so many vials, they will likely have to use both arms because my blood will start to clot. Sure enough, 4 vials later - blood stops coming.
At this point, I think I'm going to faint. I've never fainted before but the warm, nauseous, sweaty, tingly feeling I had was spot on I'm told. She pricked me again on the left arm....I managed to make it through the rest but I thought I was going to vomit all over the white floor.
I am a blood-giving champion today and I so hope this testing allows us to make a better decision with treatment moving forward.
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