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Maybe someday I'll get to post Happy News.......but not today.
Long story...beyond devastated.. But I need opinions from anyone that may have had similar experience.
Been TTC for close to 7 years. PG on my own in 2010; lost it at 7 weeks ...no heartbeat. Had D&C, testing found 1 extra chromosome.
In the middle of all this I have done countless IUI's. Taken breaks, tried on my own. Met with a half a dozen different RE's, nothing worked. Went gluten free for a year. Decided to finally give IVF a chance and had my first cycle this April. Ended up pregnant with twins. Around what was supposed to be 6 weeks baby A had a heartbeat. Baby B didn't yet. At 7 weeks baby A had no heartbeat and baby B did. At today's Sono no heartbeats detected. Babies both measured about 6 weeks 1 day.
Since the day I found out I was pregnant I've been nothing but a nervous wreck. Praying everything is OK. Sono apps were the worst bc I was beyond scared And nervous that something would be wrong. And it seems I had a reason to be.
My question is I still need answers. I saw Braverman in 2009 & he ran his tests. Had elevated NK and c677 mutation but wasn't too concerned with mutation because it wasn't a big issue according to him b/c I think it was one copy I had?? Was on Prednisone and Intralipids for 3 months and still didn't get pregnant so I left Braverman. My fertility doctor this time around (LIIVF/Kreiner) refused to continue me on Prednisone. I was on low dose (10mg) per day because I begged him. When script ran out at 5 weeks he refused for me to continue. So I need to find out if these embryos were genetically normal. If not, I need to figure out why I keep making abnormal embryos?? Three embryos transferred....two were Grade AA 8 cell and the third was 7 cell all transferred on Day 3.
The only doctors left that I basically have yet to see is Zapantis and Kofinas. Kofinas wants to charge $1200 for consult. Is either one better. I do know one is an RE and the other is not.
For the past 7 years I've tried to be my own doctor when I wasn't getting answers from anyone else. Now I'm starting this all over Again. Just when I had. Glimmer of hope that I was so past all this. And now I'm not as my fears and my nitemares have come true. I have three frozen embies left and refuse to do an FET until I get answers and protocols.....and possibly a vacation!
I'm 38 If that matters and all along have been diagnosed with Unexplained. No PCOS. No severe endo. Bloods have always been normal.
In your opinion, who do I see next? Zapantis? Kofinas? Braverman again? Anyone else???? I'd also love to hear you true honest opinions as I know so many on here are so helpful. I will probably repost this on the Miscarriage board as well just in case.
Thank you!!!!!!!!!!!!
Message edited 6/12/2014 6:12:08 PM.
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Posted 6/12/14 6:08 PM  |
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Long Island Weddings
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MrsB612
LIF Adolescent
Member since 12/12 784 total posts
Name:
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Maybe someday I'll get to post Happy News.......but not today.
I'm sorry you've gone through all this. My thoughts are with you. One way you can check if it's an embryo issue is PGD. Have you tried this yet? It could be a quality issue, an immunity issue or both. Have you met with Dr. T at SIRM. They treat immunity issues and will do PGD.
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| Posted 6/12/14 6:34 PM |
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Lillies
Grateful for my babies!
Member since 2/12 4571 total posts
Name:
<3
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Re: Maybe someday I'll get to post Happy News.......but not today.
It seems like you make great embryos if you are getting that kind of quality.
If I were you, I would either do another consult with Braverman or see Dr. Tortoriello from SIRM. Dr. T worked with Dr. B and follows many immune issue protocols. He is very successful with unexplained IF.
I would not go to Dr. Z just bc he does not explore outside the box situations like possible immune issues. I researched him looking for another RE.
I know how you feel and I'm so sorry you are going through this. I have been where you have been and consulted with so many different Drs and unfortunately many do not look outside general protocol.
Things that are going for you are that you make great embryos and you have some frozen! That's half the battle!
Are they able to test these babies to see if it was chromosomal? PGD can help to screen for this.
Take some time and rest your body. You have been through so much.
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| Posted 6/12/14 7:15 PM |
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ANewDayHasCome
Love multiplies, not divides
Member since 11/12 14481 total posts
Name:
Me
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Maybe someday I'll get to post Happy News.......but not today.
I'm so so sorry you're going through this. Have you discussed pgd? If it's a chromosome issue then they would know that ahead of time before transfer.
I saw dr. Mukherjee at RMA in the city. He's amazing.
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| Posted 6/12/14 7:58 PM |
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babydreams21
LIF Adult
Member since 12/12 3656 total posts
Name:
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Maybe someday I'll get to post Happy News.......but not today.
SO so sorry. I am finally pregnant after IVF #3. I did 6 IUIs before moving to IVF. I too was diagnosed with unexplained IF. I had 2 chemical pregnancies from IVF and knew there was more to my story. My RE who you mentioned, Dr. Zapantis, does not believe in immune issues so I decided to go to Dr. T at SIRM. I did really like Dr. Zapantis but after a year with him and countless procedures I knew I needed someone who thought outside of the box. I got immune testing at SIRM. It showed a partial DQ alpha match with my DH. My protocol was a little different and I used Lupron at the beginning of the cycle. I was on prednisone 10mg until the end of week 10. I also do intralipds every 3 weeks and will continue until 16 weeks. Switching REs and seeking out answers was the best thing I could have done.
I also considered Braverman but he doesn't take my insurance. I would say go to braverman or SIRM. You need someone who thinks outside of the box. SIRM also offered other tests I could have done too.
I hope you get some answers soon. DON't do a FET until you have answers!
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| Posted 6/12/14 8:42 PM |
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Maybe someday I'll get to post Happy News.......but not today.
I am so sorry. I recommend Kofinas and Braverman. They gave me my miracle!
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| Posted 6/12/14 8:56 PM |
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Re: Maybe someday I'll get to post Happy News.......but not today.
Thanks guys for replying.
I did 1/2 ICSI but no PGD. I also was on. Lupron for a good month before I started anything. So how would that work? They would do PGD on the embryos the day I decide to do the transfer?? Anyone know how much extra that would cost.
I did meet with Dr. T in October. But being I hadn't done IVF Yet he said there wasn't much for him to go by. Was a bit disappointed. But I guess since. I have accomplished a somewhat failed cycle I guess I can call him again. Just wanted to avoid numerous trips to the city if I had the choice. But if he's my only answer then I have to consider him.
So what is Kofinas used for? Would he be a Waste?
Oh and to answer Lillies....yes I have them to test babies for chromosomal issues. Monday is the D&C.
Message edited 6/12/2014 9:02:13 PM.
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| Posted 6/12/14 8:57 PM |
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Maybe someday I'll get to post Happy News.......but not today.
I am 39 and pregnant with twins courtesy of Dr Zapantis. That being said, if you are 100% sure you have immune issues, I recommend Dr T at SIRM. We were dealing with implantation issues and MFI so we stuck with Dr Z.
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| Posted 6/12/14 8:59 PM |
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ANewDayHasCome
Love multiplies, not divides
Member since 11/12 14481 total posts
Name:
Me
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Maybe someday I'll get to post Happy News.......but not today.
The Lupron has nothing to do with pgd. After retrieval and the from embryos they will do the pgd testing to make sure there are no chromosome abnormalities.
A lot of first Ivfs don't work, doesn't mean they won't. Mine didn't work, but my second one resulted in dd.
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| Posted 6/12/14 9:07 PM |
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cowgirlkate
Twins times TWO!
Member since 1/11 1197 total posts
Name:
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Re: Maybe someday I'll get to post Happy News.......but not today.
First, 
Second, I didnt do it but I think PGD was $5000 at RSNY.
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| Posted 6/12/14 9:29 PM |
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Lillies
Grateful for my babies!
Member since 2/12 4571 total posts
Name:
<3
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Re: Maybe someday I'll get to post Happy News.......but not today.
With SIRM, PGD is around $5000. I couldn't afford it and my egg quality was so ******, it wouldn't have benefited me.
I agree with the pp that eventhough this IVF didn't work, doesn't mean the next won't. I agree with doing some heavy duty consults before transferring those frosties.
Why did your RE take you off of the prednisone so early? You should have stayed on that for a few more weeks.
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| Posted 6/12/14 9:41 PM |
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Re: Maybe someday I'll get to post Happy News.......but not today.
Posted by Lillies
With SIRM, PGD is around $5000. I couldn't afford it and my egg quality was so ******, it wouldn't have benefited me.
I agree with the pp that eventhough this IVF didn't work, doesn't mean the next won't. I agree with doing some heavy duty consults before transferring those frosties.
Why did your RE take you off of the prednisone so early? You should have stayed on that for a few more weeks.
Because he doesn't believe in immune. Once I was pregnant he would not renew a script for me. I had a hard time convincing him to give me a script prior to the cycle and he finally gave in. But wouldn't budge once I was pregnant. I knew this would haunt me. And it makes me hate him more!
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| Posted 6/12/14 10:09 PM |
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prunepie
LIF Adult
Member since 7/06 4357 total posts
Name:
jennifer
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Re: Maybe someday I'll get to post Happy News.......but not today.
kofinas will check for any and all issues...genetic...hormonal...immune ...the works!!!!!! I used braverman and kofinas....at this point....with all you have been through its time to get completely checked out before you continue ( inbetwwen I saw and used other re's as well...and none of them pushed for answers or were out of the box enough for me)
I know some people that even though they weren't pg yet..but had multiple mcs...saw kofinas for a work up...and voila...babies!!!
andi am so very sorry hugs to you xoxox
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| Posted 6/12/14 10:13 PM |
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JSDB
<3
Member since 1/13 1329 total posts
Name:
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Re: Maybe someday I'll get to post Happy News.......but not today.
I am so so so sorry for your loss :(
After 3 losses last year I decided to be proactive and see dr kofinas. He takes a very aggressive approach but I decided I would rather look back and wonder if I really needed everything than if they would have prevented another loss. Per kofinas I was told I had mild pcos, heterozygous mthfr c, elevated immune panel, low progesterone/short LP. I also have Crohn's disease (autoimmune). I ended up taking a low dose of metformin for about 8-9 weeks, progesterone supps for 11 weeks, prednisone (20mg) for 12 weeks then tapered for 2 more weeks, intralipids every other week until 18 weeks and will be doing one more, lovenox the whole pregnancy, various vitamins etc. Also did acu. I will be 22 weeks tomorrow. I don't know if his protocol was the difference but maybe it was. Especially with the immune issues. I was also monitored very closely which I really appreciated because I was so so scared.
Do you have out of network coverage? I too was scared about the cost of seeing kofinas but once you meet your deductible they only charge you a copay not your coinsurance amount.
Message me if you want to talk more about any of the above
Message edited 6/12/2014 10:53:28 PM.
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| Posted 6/12/14 10:50 PM |
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Re: Maybe someday I'll get to post Happy News.......but not today.
Thanks for your response. No im in network only. So i would have to come up with $1200 & then I have no idea how much his follow ups are. Its crazy to me the amount of $$$ these Dr's charge.
Well I guess my question is how is Kofinas different from Braverman & Dr Tortoriello if they all think outside the box sorta speak?? Because this is most likely where I have to make my decision. Is Kofinas more aggressive than Dr. T??
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| Posted 6/13/14 4:59 AM |
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PennyCat
Just call me mommy :)
Member since 7/08 19084 total posts
Name:
Jib
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Re: Maybe someday I'll get to post Happy News.......but not today.
I went to dr Kofinas but you should know, the dr Kofinas you and everyone here are referring to is not an RE. He's a perinatologist and fantastic for once you already are pregnant- or those who are trying without such an extensive history, have miscarriages after a number of naturally conceived pregnancies,etc- but at your stage of the game with 7 years down and just one natural pregnancy , I would absolutely not see someone who is not capable of performing IVF. Yes, the losses you had could be immune related- but it could be related to a host of other things as well and I'd want someone to look at my embryology report, etc. to rule things out.
I highly beyond highly recommend Dr. Tortoriello at SIRM. Now that you have a round of IVF under your belt, he would have more to work with. I started seeing dr Kofinas back when I was still with dr Braverman because I wanted to develop a plan for once I got pregnant- which is something you may consider- but above all, in your case with 7 years down and a history like you described, I would definitely put myself in the hands of an actual RE and save Dr. Kofinas for later.
Eta- To answer your question, Kofinas is not more aggressive than Dr.T, he's a completely different type of doctor. They do run comparable bloodwork though. Between my panel from dr b and dr Kofinas, I did not need to do a RPL panel with Dr. T bc be had all the info be needed.
After several years down, failed IUIs, IVF, pregnancy losses, surrogacy, etc. my son is a result of IVF/PGD with Dr.T.
Message edited 6/13/2014 6:18:26 AM.
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| Posted 6/13/14 6:00 AM |
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MrsM429
Mama x2 <3
Member since 12/10 4946 total posts
Name:
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Re: Maybe someday I'll get to post Happy News.......but not today.
I'm so sorry
I hope you get the answers you're looking for and are able to come up with a new plan. Sending many prayers your way 
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| Posted 6/13/14 7:11 AM |
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Summergirl08
LIF Infant
Member since 3/14 76 total posts
Name:
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Maybe someday I'll get to post Happy News.......but not today.
First off sorry for your lost. I always hear good things about Dr T and a couple girls from my group therapy use him and are pg so I would give him a shot. Good luck with your decision I know $$ is an issue but the end reward is greater than any bills I'm also paying oop too and I am a patient of dr b.
Message edited 6/13/2014 9:10:08 AM.
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| Posted 6/13/14 9:09 AM |
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NYCGirl80
I love my kiddies!
Member since 5/11 10413 total posts
Name:
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Re: Maybe someday I'll get to post Happy News.......but not today.
Just wanted to say I'm so sorry for what you're going through.
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| Posted 6/13/14 9:42 AM |
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TooSoontoTell
LIF Adolescent
Member since 11/11 501 total posts
Name:
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Re: Maybe someday I'll get to post Happy News.......but not today.
I am so sorry for your loss, how devastating.
FMing you. But I strongly believe in my heart your story is NOT over and this failure is far from the end! Clinic and their lab quality plays a large role in many failures. FM
Message edited 6/13/2014 5:30:45 PM.
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| Posted 6/13/14 5:30 PM |
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dms
LIF Infant
Member since 2/13 173 total posts
Name:
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Maybe someday I'll get to post Happy News.......but not today.
I am so sorry you are going through all this. I don't know anything about those drs but I did opt for PGD testing after ttc for 3 years with 2 miscarriages and 1 chemical.
Message edited 6/13/2014 7:11:48 PM.
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| Posted 6/13/14 7:09 PM |
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keepingsecrets
ridiculously blessed!!
Member since 7/09 1912 total posts
Name:
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Re: Maybe someday I'll get to post Happy News.......but not today.
Posted by PennyCat
I went to dr Kofinas but you should know, the dr Kofinas you and everyone here are referring to is not an RE. He's a perinatologist and fantastic for once you already are pregnant- or those who are trying without such an extensive history, have miscarriages after a number of naturally conceived pregnancies,etc- but at your stage of the game with 7 years down and just one natural pregnancy , I would absolutely not see someone who is not capable of performing IVF. Yes, the losses you had could be immune related- but it could be related to a host of other things as well and I'd want someone to look at my embryology report, etc. to rule things out.
I highly beyond highly recommend Dr. Tortoriello at SIRM. Now that you have a round of IVF under your belt, he would have more to work with. I started seeing dr Kofinas back when I was still with dr Braverman because I wanted to develop a plan for once I got pregnant- which is something you may consider- but above all, in your case with 7 years down and a history like you described, I would definitely put myself in the hands of an actual RE and save Dr. Kofinas for later.
Eta- To answer your question, Kofinas is not more aggressive than Dr.T, he's a completely different type of doctor. They do run comparable bloodwork though. Between my panel from dr b and dr Kofinas, I did not need to do a RPL panel with Dr. T bc be had all the info be needed.
After several years down, failed IUIs, IVF, pregnancy losses, surrogacy, etc. my son is a result of IVF/PGD with Dr.T.
just wanted to echo everything Pennycat says here. after 4 years and 3 losses, my son is a result of the great team at SIRM (i happened to see Dr. Wang) and Dr. Kofinas once i was pregnant.
hang in there
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| Posted 6/14/14 11:34 AM |
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MissMeliss
Love my kids
Member since 11/08 1424 total posts
Name:
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Re: Maybe someday I'll get to post Happy News.......but not today.
I'm so sorry
Dr. Kofinas doesn't do IVF/IUI, but does prescribe femara and will monitor you. He also does immune/thrombo work-up and treatment.
For IVF, SIRM sounds great. A lot of people have had success with them. If that's not a possibility then I would go back to Dr. Braverman.
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| Posted 6/15/14 7:56 AM |
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JME78
LIF Adult
Member since 11/09 3672 total posts
Name:
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Re: Maybe someday I'll get to post Happy News.......but not today.
Another vote for SIRM - I saw Dr. Wang, he is wonderful.
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| Posted 6/15/14 6:07 PM |
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jellybean78
:)
Member since 8/06 13103 total posts
Name:
Mommy
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Maybe someday I'll get to post Happy News.......but not today.
I'm so so sorry for your losses I put another vote in for SIRM....Dr. T is awesome.
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| Posted 6/15/14 11:18 PM |
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