It is time for an update.
First, I have decided that we cannot afford out-of-pocket excision surgery for endometriosis in New York or anywhere else in the U.S., where we have no insurance coverage.
Second, I have confirmed that endometriosis surgery “at home” (where it would be 100% covered) is not going to happen anytime soon, if ever. The best I can hope for is an appointment with a possible surgeon before the end of this year.
Third, the LP and I have decided to follow Dr. Braverman’s initial recommendation to try one FET with one of our existing DE embryos using his auto-immune cocktail of drugs without the surgery and see what happens.
Fourth, Gertrude and Alice are in New York, NY. We will not know if their long trek there caused them any damage until they are thawed (at which point it will be virtually impossible to know if any issues are attributable to their trek from California to New York. Deep breaths… I continue trying to let go. What will be will be.
Fifth, I scheduled an appointment with my Hypnotherapist for September 22nd. I am going to need help managing my anxiety about moving forward and the deep sense of fear I harbour about us never succeeding, even with the immune protocol.
Sixth, I have a general plan from Dr. Braverman for our FET. I have booked an appointment with him and a flight to New York City for the last full week of September. By then this (avoiding) cycle should end and my next one should start. I need him to prescribe the scads of drugs I will be taking starting on day three of my next cycle (unless we do two weeks of birth control pills first). The LP is not coming; I’m flying solo.
Finally, I have been avoiding asking my insurer whether the Neupogen, Lovenox and intralipids will be covered. The LP and I have discussed the fact that even if these drugs end up being out-of-pocket, we will go ahead with this FET.
Despite having a plan to move forward, I feel strangely muted and a little down-hearted. Maybe that is my unshakeable sense of doom. Maybe it is the depressive effects of all of wine and cocktails I have been drinking the past few weeks while I came to terms with our diagnoses, their implications and emotional impact. That has to stop. But not until I leave Las Vegas….
We head back tomorrow. It has been great to get away. I miss our little person (first day of playschool today – a huge success so far, fingers crossed that continues) but I see how much the LP and I needed this time away together. My liver tells me that three days and four nights is enough; I will be ready to return though I will miss the warm weather. And the libations.
I look forward to shifting my attitude and faith basis in the coming couple of weeks. That is going to be essential as we move forward. Please wish me luck. If we have ever needed luck, now is the time.
I love that you are enjoying some much needed time with LP, and i love that you have a plan for moving forward. It all sounds wonderful! So, I am wishing you all the luck in the world!!!
Thank you so much, your support means a great deal to me!!
Wishing you much luck 🙂
Thank you. And to you in this agonizing wait. I am very much hoping you get the one embryo you need to bring baby home.
Embryos are already in NYC! Those babies get around fast 🙂 I get the sense that this is a good plan for you. I’m going to send you email about some help for the anxiety.
Thank you. I would appreciate that heaps!!
It’s exciting that you have a plan and that your embryos are in NY. I love that you named them, and I love their names. Alice has always been a favorite of mine. Good luck in the coming weeks! And, side note, how does one find a hypnotherapist? Sounds intriguing!
Shoot. WordPress crashed when I sent my reply to you. Thanks for the luck. James Schwartz’ book The Mind Body Fertility Connection has a good referral source I think. I can send it to you when back home tomorrow night if you email me: spirit.baby.please.come.home@gmail.com (assuming you are in the US)
Awesome, I will email you, thanks!
Glad you’re enjoying some time away with the LP. I think Vegas is the perfect distraction for most things in life, but the great thing about it is you’re always ready to leave by the end of the trip. So happy your embryos made it to NYC safe and sound and praying the trip didn’t affect their quality. I am sending you so much positive energy for peace and hope as you begin this next phase and praying so hard Dr. B’s protocol does the trick. Hugs hon. Safe travels back home.
Thank you so very much, my friend. I think the break was overdue and I am glad we did it. I hope the protocol works too. I can’t imagine the mess I will be if not.
Wishing you much luck! It sounds like things are falling into place.
Thank you so much.
You have been through so much – I am really hoping this works!
Me too. Most of us have weathered storms we would not wish on anyone. I keep hoping to follow in your footsteps!
I think of your “Bert and Ernie” often ❤
Ha ha! Thank you, that is very kind. You’re the reason they morphed from muppet to literary monikers – I didn’t want to encroach on your experience. 🙂 That said I do hope I get lucky with one of my little ones as you did!
It seemed like you were stuck in limbo for such a long time – that when everything fell into place with this post – I just got the best feeling. (And you could have totally kept B & E – worked for me 😉 ) But now I know what to call them. Sending you lots of light and love ❤
Thank you. You are right – the limbo was soul-crushing. I am ill-suited to being left to my own devices. I am so moved by your and Lindsey’s good feelings. I feel a bit at sea still – nothing seems real on one hand and I fear I cannot trust anything to work on another – so that others feel good is very inspiring and reassuring. Thank you for telling me that; it means a great deal to me.
Wishing you ALL the luck on the upcoming FET! Glad that the MT is enjoying preschool 🙂 And when we lived in Vegas my fav cocktails were at Frankie’s Tiki Bar–we have a collection of their tiki mugs. XOXO
Ha ha – I wondered if you’d have a Vegas suggestion. I haven’t been there. Will have to look it up. Last night here…. I’m tuckered!
Honestly, I’m just really happy that you have a plan. Given how many unknowns you are dealing with already – you’re in a situation where every scenario has a potential question mark at its end – I think the most important thing for your sanity is to move forward. And your sanity is key! You have every reason to trust Dr. Braverman (and I say this as someone who has lost trust in huge swaths of the medical profession 😉
Thank you. I don’t harbour any distrust of Dr. Braverman to be honest. I don’t trust my body. That’s much more debilitating but I am going to work on it and I will overcome this before transfer.
Sending you so many good wishes and lots of luck! ❤
An excellent plan I think honey! I am
chinking wine glasses with you … Enjoy, and here is too brightness ahead rather than doom. Much love xxx
Cheers! I’ll drink to that. Although at this moment I don’t want to see wine or any other alcohol for a while. Enough Vegas!
I’m glad you’re going ahead with the FET. Though I don’t think having had the surgery first would have been a bad thing, I do think it would have taken you out of the TTC process for longer than you’d like.
When you’re in NYC let me know! I work downtown. We can have a juice or coffee.
That would be fantastic!
So happy you are moving forward !! Let me know if you have free time when you are in Manhattan and maybe we can meet for tea or something.
I am doing this same protocol. Intralipids are often not covered by ins. But I order mine from Nobel Pharmacy and they are only 30 a bag. Neupogen if called in by an RE instead of an Oncologist isn’t covered either and it’s $352 a vial ( vial lasts 8 days). I asked around on the Infertility Boards I am on and two of the ladies who are pregnant now are mailing me their unopened vials for free ! How cool is that? I was asking if anyone had some extra they would sell for less than what we have to pay a pharmacy….
My lovenox is covered by ins. And I get 3 boxes a month for $3 copay. They also cover my prednisone.
Wishing you much luck with this next cycle !!
Thank you so much for the support and information. I’m confident my insurance will cover lovenox and prednisone is covered. Even if the neupogen isn’t covered, we will go ahead but I’m hoping it will be. Because I’m in Canada and my employer self-insures the coding that the doctor uses in the US has not been an issue with drug coverage up to this point (i.e. oncologist vs RE). My question (which I’ll have to ask this coming week) is whether Neupogen is covered AT ALL.
I didn’t know any other REs/RIs prescribing Neupogen (Braverman was the only one for what seems like forever). Which of your doctors Rx’ed that for you? I’m so hopeful this will do the trick for you (and bring you twins!). I’ll be keeping you in my prayers moving forward.
I would love to meet up, I’m only in NY briefly this month but in Oct/Nov I’ll likely be there several days to a week so I will definitely let you know in advance. Do you have an email address you use for your blog? If not, mine is spirit.baby.please.come.home@gmail.com.
Wishing you all the best, too!
My RE @ CNY has been doing Neupogen and the wash for some time. Dr. Kiltz, who owns CNY has several Youtube postings about various treatments for autoimmune disorders.
Looking forward to meeting you ! My email address is : planbchronicles@gmail.com
XOXO
That is great to know – thank you!
I’ll email you closer to my FET monitoring dates.
I’ve checked out Dr. Kiltz’ videos and site. Very interesting. I wonder if he would follow a protocol designed by Dr. Braverman? It seems that the REs and RIs do not like sharnig a sandbox but maybe your RE would be an exception. In any event, I’m so grateful you shared this information – thanks again and all the best with this fresh IVF you are embarking on. I’ll keep you in my prayers.
He is following that protocol for me. I had a phone consult with Dr. Braverman. There is another doctor in CA that has a great autoimmune protocol too and he trains Dr. Kiltz and staff on it and also they consult…. can’t remember the docs name..
Dr. Stricker or Dr. Trobough at the Beer Centre maybe? I think Dr. Stricker was originally trained in NY.
Did Dr. Braverman recommend a protocol over the phone with you? I didn’t like him over the phone initially but glad I persevered, I’d be so lost still without the diagnoses he gave us.
That name does not ring a bell… I will have to look thru my note… the doc wrote several books and some of the ladies have done consults with him and I know its pricey.
Yes, I spoke with Braverman over the phone after completing the massive amount of paperwork and sending my HLA panel results and other info to him. I did not care for him at all, but he seems to know his stuff. I wrote down all he said and have spoken to several others who went to him and the protocols were similar because of the same issue. I discussed with my docs at CNY and they concur.
You have done your homework.
The only other CA clinic with immunology interests I can think of is Reproductive Immunology Associates (RIA). They wrote a book called Miscarriages Can Be Prevented. I’ve never read it. Some women really like Dr. Metzner there.
Your experience at CNY is enough for me to suggest it to others. I’m so glad we had this exchange. Even though I’ve been following your blog since early days I didn’t appreciate the connection beyond you mentioning your RE was running many of the same tests that Dr. Braverman does.
I look forward to catching up when I’m in your area next month. It will be great to meet you. You might even be sporting a twin pregnancy by then!
FYI: I have nominated you for the One Lovely Blog Award !! http://plan-b-chronicles.com/2014/09/16/one-lovely-blog-award-the-411/
I have updated my post to include a very kind thank you to you for the nomination.
LOL. I can not WAIT to sport a twin pregnancy !! Might put a damper on my quest to find Mr. Right via Match.com, but who knows LOL. Looking forward to hanging out… V
Thank you so much, you’re so sweet. I’m so jealous of your upcoming trip the Bahamas!
I know this is old but I wanted to let you know after an exhaustive search Rite Aid specialty pharmacy is the cheapest per vial. Many pharmacies wont split the 10 pack the vials come in. Rite Aid allowed me to purchase enough vials to get me to my next appt (2 or 3 at a time) to make sure the pregnancy was progressing. No use in buying what you dont need. They ship overnight. hope this helps. Im 10 1/2 weeks with my neupogen baby after 6 consecutive losses.
Thank you so much for this. I’ve been using Focus Rx a small private pharmacy on Long Island that delivers and they split the 10-packs as well and have been so easy to work with for refills on that and my other meds. I’ve just today asked for my Prednisone to be called into Rite-Aid – a nice coincidence! I’m 10.5 weeks too after 6 consecutive losses (2 more prior to our son) – congratulations on your success this time! I hope all continues to go well. Thank you so much for stopping by and sharing this helpful information.