My IVF/PGD - got AF! Lupron in T-21 days!

hello everyone!

I might be a little premature in starting my journal since DH and I wont start our IVF medications until February, but i figured since we have SO MUCH to do before then to prepare for the PGD, i might as well keep a journal starting now!

History:
I am 29 years old and DH is 29. I have an inherited disease which i have a 50/50 chance of passing on to my children. My mother has the disease, and my brother and i have it. my youngest brother does not.

the disease is Hypokalemic periodic paralysis - which very few people in the world have. it's autosomal dominant. Women are more carriers of the disease while males actually have symptoms of the disease.

my brother who has it woke up one morning when he was 14 and he was completely paralyzed. we rushed him to the hospital and he was given intravenous potassium and he was able to move again. the disease disrupts the sodium potassium pump in your cells and can cause brief paralysis if your not on the rights medications and your not watching your diet.

my brother is ok bc he monitors the disease, but DH and i have decided that since we have a 50% chance of giving this to our children, that we would do PGD.

9/21/09:
Had my first IVF consultation with Dr Hershlag at Center for Human Reproduction at NSUH. Here, he explained the IVF procedure. he told me that my bloodwork (blood was taken on CD3 from me) showed high FSH. he wants to redo my bloodwork next cycle. in the meantime, we have a PGD consultation this Friday and i have to make appointments to see genetic counselors and to have a full genetic mapping done. so it begins!

9/23/09:
HORRIBLE day! i spent the entire day trying to get appointments for my genetic counseling. then, my insurance company called and said that they won't cover ANYTHING (IVF or PGD) since i dont have a diagnosed fertility problem. They would cover 50K over my lifetime for IVF if i had a fertility problem, but since i dont have that diagnosis, they won't cover anything! i have EMpire (govt. plan). now, i have to fight with the insurance to make them realize if they dont pay, then i cannot have children!


9/25/09:
so DH and I went today for our PGD consultation with Dr. Hershlag - we were so upset about being denied by our insurance, that Dr. Hershlag reviewed my past medical history and is going to make an appeal to my insurance company! hopefully, this time around, they realize that this is something i HAVE to do. i am keeping my fingers crossed that they come to their senses! The PGD process is a long one, but it is so interesting and i am so excited to be able to do this for my children. i have another genetics appointment on Tuesday where they will draw a bunch of blood and do a full genetic mapping of my disease. once that is done, they send it to the lab, the lab does a DNA test on me, they make a "probe" for my disease, and once all that is done, i can start the IVF process! it should take a few months, but i am so excited to get the ball rolling. hopefully i hear from insurance soon and hopefully they decide to cover me! thanks again to everyone - you have no idea how much you have helped me. you're all such incredibly strong, amazing women - thank you

9/26/09:
So, possibly TMI, but on 9/14 i got what i thought was my period. i had excruciating cramps and had very light bleeding for three days. then it stopped. so, on CD 3 i got my bloodwork done and that's when it came back with high FSH (10). BUT, on 9/24, i started feeling AF cramps! i couldnt understand it. then, that night, i got AF! AGAIN! since i have a history of ovarian cysts, maybe the first time i thought i got AF i had a burst cyst? i told Dr Hershlag about getting AF for the second time, and he told me to go for Bloowork today to have the CD 3 bloods drawn again to see if my FSH was lower (he said if it was taken at the wrong time, it would have been higher midcycle). so, i got the blood drawn again and i am hoping for better FSH results!!

9/29/09:
met with a geneticist today and mapped out my entire family tree and talked to them about who had the disease and who didn't in my family. i also told them that i had DNA testing done about ten years ago and they isolated my gene in my family. it was their opinion to try to have those records pulled instead of going through an entirely new genetic testing now. so, we sent a records release form to mass General in Boston (where i had my testing) and hopefully they find my records and hopefully they have what the lab needs to make my "probe" for my PGD! i am keeping my fingers crossed that i dont have to go through all of that testing again!
Also,have been calling EVERYDAY for the results of my bloodwork taken last Saturday. the results are there but no one will read them to me over the phone! Dr Hershlag has to review them first! it is driving me insane bc i want to know if my FSH went down and no one can tell me!!
Still no word on if insurance will change their mind - my doctor has my previous medical records with my previous history and now it's up to the insurance company to get it and cover me! i am keeping my fingers crossed for that too!

sorry so much info - thanks for reading!!!

10/1/09:
got my FSH results and now they are a 9. still on the high side. i am kinda sad about this bc i was hoping it would be lower, but i think everything should be ok. still waiting on insurance!

10/7/09:
insurance authorized my IVF Cycles!!! i cannot tell you how happy i am. i have been so sad the past few days thinking about the possibility of not be able to do this. they will cover 80% of my IVF since i go to a doctor that is out of network but that's SO much better than nothing! yay!!!!

10/19/09:
Brief update - i finally got my Buccal swabs from the lab! I swabbed myself, my two brothers, my parents, and DH and sent them all in a little package back to the lab to be analyzed. Once they get the swabs, they can start making my genetic "probe" and once that is done, i can start the IVF meds!!!! i am getting really excited! although it takes about 6-10 weeks to make the probe, it still feels like it's getting so close! but these next couple weeks are going to be torture waiting for the phone call that the probe is done!!

10/30/09

Today I had my Hysterosonogram and thankfully, everything was normal!

next appointment is nov 9 for a "trial transfer" to make sure everything is ok for when i do the real transfer!!


12/29/09

got AF today! Now i have to wait 21 days and i can start Lupron! i cannot believe it's so soon! I am also starting acupuncture twice a week! yay!

Message edited 12/31/2009 11:28:42 PM.

Re: My IVF/PGD Journal

best of luck to you!! i will be looking forward to reading your journal!

Re: My IVF/PGD Journal

I wish you all the very best of luck!!!

Re: My IVF/PGD Journal

Best of luck to you!!!!

Re: My IVF/PGD Journal

best of luck to you! i look forward to reading about your journey

Re: My IVF/PGD Journal

Best of luck to you!

Re: My IVF/PGD Journal

Good luck to you!!!!

Re: My IVF/PGD Journal

Good Luck to you!!! I hope your stay is short!!!

I also did IVF with PGD, so if you have any questions and if I can help out in any way, just let me know!

Re: My IVF/PGD Journal

Posted by CarlieJLD7

Good Luck to you!!! I hope your stay is short!!!

I also did IVF with PGD, so if you have any questions and if I can help out in any way, just let me know!

Re: My IVF/PGD Journal

Good luck!

Re: My IVF/PGD Journal UPDATE 9/23

updated

Re: My IVF/PGD Journal UPDATE 9/23

Well, perhaps high fsh levels and any other things that show up in a workup on DH will show fertility issues that the insurance will recognize. You never actually WANT to have IF, but perhaps you can explain the situation to the RE and see if they will run tests that prove no IF issues or the presence of IF issues for you or DH.

I am sorry to hear your struggle with insurance. You may want to search "grants" to see information girls have shared about using them to pay for IVF.

Re: My IVF/PGD Journal UPDATE 9/23

I am sorry that you insurance company is giving you a problem, but I agree with the above poster, maybe your RE can run some more test. Good Luck!!

Re: My IVF/PGD Journal UPDATE 9/23

I too have Empire- gov't plan - 50K max

I called up and asked about coverage for the center of excellence, they sent me out a booklet and gave me a case number- I never was asked for a diagnosis
I just called up LI-IVF and no problem with the insurance at all

sometime seems very wrong to me
call them back

Re: My IVF/PGD Journal UPDATE 9/23

I have empire plan too. The person did ask me what our IF problem was (husband had vasectomy). But she took that answer and nothing more was made of it.

Re: My IVF/PGD Journal UPDATE 9/23

did your husband get tested? Make sure they do a sperm analysis on him. That is how DH and I got coverage for our PGD/IVF.

Well, the IVF was covered by my insurance (GHI) and the PGD was covered under GHI and my secondary (BCBS, which is my husbands).

Make sure you ask the company for their inferility policy, or look for it online. In BCBS's policy they state that they will cover the PGD aspect regardless of IVF coverage if you meet the criteria (carrier of a genetic disorder on a sex chromosome).

If you have any questions, don't hesitate to ask.

Re: My IVF/PGD Journal UPDATE 9/23

thank you EVERYONE for all of your help - you have no idea how much you have all made me feel better!

I am calling my RE today and i am going to have them call my insurance and have another talk with them. i have Empire BCBS (govt plan) and it seems like it is a GREAT plan, they just have these caveats all over the place before they pay

it seems like Empire BCBS (the regular one i guess, not the govt one) is much better! i have heard that you dont need a diagnosed fertility problem and they cover PGD?! i wonder if i can switch or pay a little bit more to get that coverage?

this literally kept me up all night last night - thank you everyone or all of your help, you really made me feel so much better and now i can definitely have a more intelligent conversation with my RE and my insurance company!

Re: My IVF/PGD Journal UPDATE 9/23

Do you have Empire BC/BS for hospitalization or for doctors? I have Empire plan and have BC/BS for hospitalization and United Healthcare for office visits.

I have also done IVF with PGD in the past. If you have questions about that, please don't hesitate to ask.

If you are going to LI IVF, ask Karen Roach, the head nurse, about getting Empire to pay for PGD. She has had several patients with real issues get PGD paid for through them!!

Re: My IVF/PGD Journal UPDATE 9/23

I'm so sorry. Can you ask your RE's office to help? I'm sure they can send a report showing that IVF is necessary. DH's insurance is the Empire plan. I hope we don't have any problems when we start IVF.

Re: My IVF/PGD Journal UPDATE 9/23

Re: My IVF/PGD Journal UPDATE 9/23

Ditto on calling Karen Roach if you are working with LI IVF. She seems to be a wealth of information as well as a key mover and shaker there. I just get this feeling that somehow this will work out for you. Just sorry that you will probably have to log more phone/office time to make it happen. Keep posting bc you never know when someone's advice might help you.

Re: My IVF/PGD Journal UPDATE 9/26

update

Re: My IVF/PGD Journal UPDATE 9/26

i hope insurance covers it!!

Re: My IVF/PGD Journal UPDATE 9/26

I hope your doctor's words prove to your insurance company to cover your treatment. Good luck!

Re: My IVF/PGD Journal UPDATE 9/26

hope that insuranse coves it