So tired of all of this...and my re-introduction (long)

So I guess I should re-introduce myself, since I haven't really been around here much lately, and most of "my" IF girls graduated... or moved on. Not sure how much I'll be posting, but when I do it'd be nice if the newer people (ETA: I haven't posted in over a year, so newer isn't necessarily new) actually had some background about me.

DH and I have been trying for over 7 years now, and have nothing but m/c's to show for it. Our most recent was twins, and we thought we were *finally* there. All during my journey I've heard how since I'm young this'll be a piece of cake, even with having PCOS.
Clomid didn't work. Tried some IUIs (saw a positive @ home, very faint, but negative by beta day). Was then told IUI's were too risky b/c of the PCOS- they said they couldn't control me enough. So we moved to IVF. Got pregnant off the first one, but beta's weren't "right". The #'s were too low, even though they continually doubled. Dr. told me other bloodwork levels were concerning them and that I needed methotrexate to abort it. I fought them on it for a few betas and they finally freaked me out enough that I gave in.
BEGGED that dr to do any and all bloodwork b/c after all that we had already gone through I didn't want to experience that ever again. Took the dr a month to get results, and he told me it was a "fluke thing", and it would be fine going forward. Did another cycle, (frozen). Saw positive HPTs at home, but negative by beta day. Tried again with another fresh cycle, and same thing. Maxed out our lifetime IF insurance w/ the same dr between 1 fresh and 1 frozen cycle.

Finally decided it was time to move on from him b/c clearly something more was going on. Emailed another dr and heard back from him that night. Met with him a few weeks later, and he took over 30 vials of blood from me. Came back I have 2 copies of MTHFR, as well as ACE Gene Insertion/Deletion, among other things... Did a cycle with him completely OOP, and didn't get pregnant. Then did a frozen... put 2 back, and got pregnant with twins.

Thought FINALLY we were there. Beta #'s were within range, and then above range, everything was finally right and I was at peace... A few days before we went in to see a heartbeat (weren't sure it was twins yet) I got horrible cramping and saw a lot of blood. The pains were awful. Called the dr and he said there was nothing we could do at this point and I had to wait it out... but not to panic b/c it could be nothing.
DH and I went in for our scheduled appointment to see a heartbeat, and instead saw 2 blobs. It was the longest 5 minutes of my life... the dr told me to give him time to really look around and not to panic, but I just KNEW something was wrong. Bloodwork showed that I was miscarrying, and immunological bloodwork showed elevated NK cells, as well as a high TH1:TH2 ratio and elevated cytokines. Basically, my body attacks and kills off our embryos.
Next time around intralipids were suggested.

Insurance wouldn't cover it so we paid it out of pocket and I had a family friend (a nurse) administer it thru IV for me. Thawed our last 3 embryos we had with that dr, and only 1 survived. Bloodwork 4 days after transfer showed that my body was attacking this embryo, even with the intralipids.
Next IVIg was suggested, but insurance won't cover it, and we couldn't afford it. So we took some time off and came up with enough money to do another cycle... (we've already emptied out my 401K, gone into credit card debt, and exhausted pretty much all other funds we had trying to start our family). In the meantime I've joined immunology boards and get tons of email messages a day trying to figure out our next course of action.

About a month and a half ago Neupogen was suggested to me. I called my dr and he agreed that I'm the perfect candidate. I thought Thank God, we're finally going to be able to move forward. Not so fast... went to see him, asked all my questions, took the paperwork home showing me the study that was done about it and read it... told his office to order my meds. All of my meds arrived, except the Neupogen. Found out Neupogen isn't covered. They want over $9,000 for a 30 day supply! For weeks now I've tried anything and everything to make progress with this...

I'm having one of those days where I'm seriously wondering if someone's trying to tell me I'm just not meant to be a mom. I used to be one of LIF IF's biggest supporters, and I've just lost all my steam. I've watched pretty much every one around me go on to have 1, 2, and in some cases 3 children (and I'm happy for them-- no question! But I'll admit I'm a little green ) Others have moved on in their journey, or ended their journey... and I'm still staggering along, and feeling so incredibly down.

My brother is having his 3rd child within the next 2 weeks. I adore my niece and nephews, and can't wait to meet our newest nephew! I wish I could give them some cousins already, since they ask me from time to time and I'm tired of telling them that I'm hoping God gives us cousins for them. I'm over the moon happy for him & his family, but I can't help but wonder when will it be our turn? I'm sorry- this got really long. I've spent most of my day crying... between making phone calls trying to get this medication covered, and getting no where. I even went to see an oncologist this morning b/c when I explained everything to her staff they told me to come in b/c they were sure she could help me. No such luck.

I just don't know what to do anymore. All day I've felt like just throwing in the towel, but I can feel my heart fighting with my head. I feel like we're SO close... and yet so far. Anyway, that's me in a nutshell (a very long nutshell)...
Those of you who take Neupogen, do you have any idea how your dr got it covered? I hate this... Thanks for reading. Best of luck to all of you.

Message edited 5/18/2011 7:47:11 PM.

Re: So tired of all of this...and my re-introduction (long)

Hi MrsMessina.

After reading your journey, my heart truly breaks for you. I used to be a lurked on this board years ago before I decided to come and post. I remember seeing your name and your posts and always secretly hoped you had that great news to post.

Granted I'm not on this journey as long as you....although rapidly approaching 4 years myself. There is not one day that has passed in all the years trying just praying and hoping AF would STAY AWAY!

The issue with you is...you seem to not have a problem getting PG, just keeping them.

It's so frustrating because when one mystery is solved, another occurs.

All I hope is there will be one day you can say this journey will be worth your while as you kiss the lips of your own baby in your arms.

Thanks for sharing your journey on with us "semi-newbies" if that's even what ya wanna call us. Regardless, we're all here for support and all here for the same blessing as you,

Good Luck!!!

Re: So tired of all of this...and my re-introduction (long)

I am so sorry for all you've been through. You must be an amazingly strong woman, b/c after 2 years of TTC, 4 early m/cs, and 4 IUIs, I am already about to lose my mind. I can't even imagine what you have been going through.

I know nothing about neuprogen, but I'm sure some other ladies on here can help. I just wanted to wish you the best of luck moving forward. The current group of IF ladies are fabulous. You should come to our monthly GTGs - they are fabulous for support and to be with others who really know what you're going through. Feel free to FM any time if you want to talk.

Re: So tired of all of this...and my re-introduction (long)

Wow...you have been through so much. I'm so sorry! Life is so darn unfair at times! I am sending you lots of

Re: So tired of all of this...and my re-introduction (long)

i am sorry for all the hardship i hope you will have a baby soon.
i wanted to add that i have similar issue with immune stuff. my immune system was also attacking pregnancies, and we tried intralipids (cheap option) and they did nothing. I did IVIG about 4 weeks ago ( half dose, but still cost me around $3K including administration) and my tests just came back saying that all my numbers are down, meaning that i responded. now, RE wants to do another round and it is sooooooooo expensive. Maybe you could try IVIG before neuprogen?

good luck!

Re: So tired of all of this...and my re-introduction (long)

I think about you all the time!!!!

Im so sorry that you havent had an easier time since we have last heard from you....

Re: So tired of all of this...and my re-introduction (long)

I am so sorry about the road that you have been on and hope that everything works out with the medications and that you get your miracle soon

Re: So tired of all of this...and my re-introduction (long)

I'm sorry you've been through all this
Somehow we all find the strength to move forward and you will too! As far as the neupogen being covered they didn't have to do anything to get it covered for me so maybe it just depends on which insurance you have? Are you under you or dh's ins? Maybe you can switch?

Re: So tired of all of this...and my re-introduction (long)

So glad to see you came back to post Shannon! I dont know anything about the meds but wanted to let u know i was thinking of you.

YOu have been on a long heartbreaking road and wish you nothing but the best of luck.

Message edited 5/20/2011 5:08:31 AM.

Re: So tired of all of this...and my re-introduction (long)

Hey Shannon Glad to see you around. Just wanted to say I am so sorry for you to have gone through this. have you tried contacting the manufacturer? maybe they will donate the med to you or give you a reduced rate

ETA-check this out:

Link

Yahoo Infertility Support-if you haven't posted there you should

Message edited 5/19/2011 11:43:57 AM.

Re: So tired of all of this...and my re-introduction (long)

I'm so sorry you have been through all of that

Many

Re: So tired of all of this...and my re-introduction (long)

Thanks everyone.

I woke up this morning, put my big girl panties back on, and started making more phone calls. I didn't get anywhere, but it's a start...

I had a pity party night, and am just trying to figure out where to go from here. I'm not one of those people that believes in giving up. I spoke with my dr. yesterday and he flat out told me he didn't think I'd manage to get this coverd. What I don't get is how are other people managing to then?

Re: So tired of all of this...and my re-introduction (long)

Posted by DRMom

Hey Shannon Glad to see you around. Just wanted to say I am so sorry for you to have gone through this. have you tried contacting the manufacturer? maybe they will donate the med to you or give you a reduced rate

ETA-check this out:

Link

Yahoo Infertility Support-if you haven't posted there you should

Re: So tired of all of this...and my re-introduction (long)

Hi Shannon!

I'm so sorry for all that you've been through. You know I am always supporting you!

Re: So tired of all of this...and my re-introduction (long)

"I'm tired of telling them that I'm hoping God gives us cousins for them."

Its so hard when people ask all the time and you just want to say "I'm TRYING!!!!!" I know kids dont understand but adults should get it. Stop Asking all the time! When I finally told a friend of mine about our situation she felt horrible for always bringing it up. I told her not to because she didnt know. But it's true, It's funny once in a while but not all the time.

Re: So tired of all of this...and my re-introduction (long)

I'm so sorry for the long IF journey you have been on. I pray that it ends for you soon with a of your own.

Re: So tired of all of this...and my re-introduction (long)

I have elevated NK cells and other immune issues also. It took 3 IVFs and 3 losses for me to be succesful. (We even begun considering a surrogate.)

I was on lipids for months before and after transfer, I am now 20 weeks and just had my last infusion last night. I was also on a boat load of vitamins/supplements for 3 months prior to my last (and only succesful) transfer.

It is a long and horrible road, and it is so hard to stay positive, but never give up hope. That is about the only thing we DO have control of in this mess. This board is full of strong women here to support you. Also there are many success stories here that will def give you hope.

I know your pain, if I can be of any help whatsoever, please FM me.

Re: So tired of all of this...and my re-introduction (long)

My dear friend. I miss you. I know your road and you and DH deserve your little miracle. I pray and pray for you guys. Lifetime sundaes never expire.

Re: So tired of all of this...and my re-introduction (long)

Hey Shannon ...You have been very missed ! I am so sorry for all you've been through

As much as I don't want to see you back on here (and as much as I wished this board did not need to even exist ), I'm just happy that you did decide to post again and you have all my continued prayers and support that you get your little miracle soon xoxo

Re: So tired of all of this...and my re-introduction (long)

I am new here, but anytime you need to talk FM ME!

Re: So tired of all of this...and my re-introduction (long)

Thanks everyone! Another frustrating day here... I told DH I woke up and forced myself to be positive, and now that the day is over, I just want to I called a pharmacy out west, and the person I spoke with told me it's just a matter of finding a dr to diagnose me with the "right" code to get the medication covered.... what do they think I'm trying to do? I'm making tons of calls a day trying to figure this out!

According to my pharmacy, and my friend in insurance, each time a dr orders a medicaction for a patient, they have to include a diagnosis code, as well as a treatment code (for the medication).... so why can't anyone figure this out if other ppl are getting theirs covered?????

Re: So tired of all of this...and my re-introduction (long)

Does this website help at all? Maybe you can print this out and bring it to the RE, it has billing codes. HTH!!!

Good luck to you, I remember you from when I was on the IF board last year

linky

Re: So tired of all of this...and my re-introduction (long)

Here's another:

patient assistance program

Re: So tired of all of this...and my re-introduction (long)

Posted by MrsMessina

Posted by DRMom

Hey Shannon Glad to see you around. Just wanted to say I am so sorry for you to have gone through this. have you tried contacting the manufacturer? maybe they will donate the med to you or give you a reduced rate

ETA-check this out:

Link

Yahoo Infertility Support-if you haven't posted there you should

Hey you! Thanks- the link you sent me to (Neupogen denied today...) was actually my post. That's the board I'm on that sends me individual emails so I can try to figure out what in the world I should be doing... So far I haven't found any luck there either, but I hear great success stories.

I have to look more into the 1st link. Someone had sent it to me but I'm not sure what it is... do you have your dr send the prescription to them and see if they can get it covered? I'm so confused... Story of my life... Thanks for the links!!! Hope you're doing well!

Re: So tired of all of this...and my re-introduction (long)

I gave them a call yesterday, and explained everything to them. The woman I spoke with was very nice, and told me that I needed to get the elevated NK cells, TH1:TH2 ratio, and cytokines diagnosed as ??? (she didn't know- just that someone needed to diagnose them).

The issue w/ that is that if they took my blood right now, none of that would be abnormal. That's why we didn't know after all my initial bloodwork w/ him- my #'s were within normal range. It's after a transfer that my body goes haywire, and these things start becoming elevated.

My dr has bloodwork (not current though- it's from the last time I was pregnant, and the last time I had a transfer) showing these levels become elevated, but I'm not sure how he should be diagnosing this.

The woman I spoke with couldn't tell me more than that. She made it clear that she would need a prescription, my insurance information, and a diagnosis code (or codes).... she's the one that told me they have to then add a treatment code in- so it has to match the diagnosis code(s) that will cover neupogen.
I actually was researching codes that neupogen seem to be acceptable thru diff insurance companies for, but none of them pertain to me. They're dealing w/ HIV and cancers.... I was hoping they'd have something that wasn't so detailed that maybe it could fall under... the oncologist's office suggested "abnormal hematology" but the oncologist told my dr that wouldn't work either... I've also met with a immunologist in the past, but he was no luck helping either...
I'm going to call back the pharmacy again and see if maybe I get a different person if they'd be able to give me any more info. I have a cousin who works for Columbia in the heart transplant department, and called her yesterday, so she's going to talk to her friend in billing as well as an immunology nurse practictioner to see if they have any insight as well.... she did this when IVIg was suggested to me also, but no one there was able to help w/ that either, so who knows.... hopefully I'll hear back from her today. Thanks!

Message edited 5/20/2011 11:10:49 AM.