IVF #5

Back when I was a member of the web site/group Fertility Friend (GREAT site by the way) I remember seeing posts from a woman who had done 6 IVF cycles.  I found myself judging her and thinking things like, "Why would you do that to yourself?" and "Obviously something isn't working! Why keep trying?" Well...I get it now. I'm right there with her. I wish I could go apologize to her for thinking those things. I've officially begun IVF #5.

I started BCP's to suppress my ovaries (I've done Lupron in the past for this) 6 days ago. Hats off to all of you that routinely do hormonal birth control.  I HATE it.  The side effects for me are usually awful.  Granted, the only times I do BCP is for IVF cycles so my body never really has a chance to get used to it before stopping.  I will say that taking it at night has lessened the nausea but my boobs are now pretty sore and getting worse. I was told in the beginning that I'd only be on BCP's for 8-16 days.  Well, with Christmas it made sense to take them longer so I could line up appts for after the holiday.  Unfortunately, I'll be on them for 4 weeks (all active pills).

*sigh* My kidney infection came back 8 days since stopping my last round of antibiotics. NOT COOL. I'm now on stronger/longer antibiotics to kick it for good this time.  As much as I really try not to do antibiotics, I didn't see a way around it this time.  At least I'll be done with them before stimming.  I do blame the Metformin and have since stopped taking it.  I talked to my pharmacist and she confirmed that a "common" side effect (NOT rare like I had once believed) is infection that passes through urine.  My kidney hates me right now.

I'm concerned about egg quality issues, esp since stopping the Metformin.  I'm on Dr. B's supplements but is it enough? I'm just not sure. I was told Myo-Inositol (kind of like an OTC form of Metformin) could possible help.

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The latest drama:

I'm having a heck of a time figuring out where to get Follistim and Menopur at a "reasonable" cost. Reasonable is in quotation marks because seriously, fertility medicine isn't cheap or affordable. It's downright awful. I've actually started losing sleep over this and that's not really like me. I'm attempting for the first time ever, to try and have our base pharmacy special order the medicines. I *HAVE* been on these in the past (albeit, under different circumstances) and had Tricare pay for them so I'm hoping they will see that in their system and approve them.  I was told today it should only be another 2 days or so before I hear if they've been approved or denied.

I'm also looking at ordering them through from the UK. The problem with that is:

1. My clinic won't send the prescription overseas (I get it but still annoying)
2. Shipping time from the UK scares me, esp with all the holiday mail right now. It can take over 2 weeks and I don't have that much time.
3. The UK meds don't come with any of the needles so I'd have to get a prescription for them here-so they'll know I'm using a UK pharmacy-which they don't approve of.

The one MASSIVE advantage to using the UK pharmacy is the price difference. It's over a 50% savings and when we're talking thousands of dollars off, I want it to work out.

I need to let this go and wait out the next couple of days waiting to hear from the base pharmacy before deciding our next steps.

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Well, the base said no. I'm not surprised in the least. I've gone ahead and ordered medication from the UK. Ordering from there is saving us over $2500. That's a LOT of money!  Now, I don't think I'll be able to relax until they are in my hot little hand but my favorite Montgomery nurse calmed me down a lot this morning. She offered to help me in any way she can.  What a blessing to me! Her hubby just retired from active duty and she's done IVF several times in the past. She gets me! She's putting in an RX for needles and said they can spot me meds until my order comes in if it's late.  My heart might explode from gratitude and I told her as much. God's got this! Oh, what a great reminder for us all.

I'll keep you updated....

Long Winded Update:

Early Nov:

I got pretty worked up yesterday and thankfully have since calmed down.  I was seriously irritated at my Birmingham nurse (and I was warned by Dr. B that this could happen) but everything ended up being OK by this morning.  Because I'm working with two doctors and three clinics, this gets messy easily which turns quickly to annoyance on my part.  Contact with my doc in Birmingham is very difficult and frustrating.  They don't do email so I have to call and leave a detailed message with a transcription service by phone-wait for a nurse to call me back (who usually has a hard time understanding what I'm talking about)-who then has to put any request in to my RE-then calls me back when the request is approved or denied. Why I can't just email these people is beyond me.  Of course, the nurse yesterday got snippy with me because she doesn't understand that I'm working with Dr. B AND my local RE.  The nurse kept telling me that my RE won't give me the Metformin because my lab results do not indicate a need for it (my insulin level was a 5).  I'm FULLY aware of that and told her that it's Dr. B's recommendation that I be on it for 4 weeks before IVF to help egg quality and inflammation since I have severe endometriosis.  She said, "I've never heard of that."  Yep, and that's exactly why I have Dr. B fighting for me and why I want to try something new. I've done IVF twice with a pretty similar protocol.  Why would I continue to do the same thing again and probably get the same (negative) result?

This morning I got a call from my fav nurse (one in Montgomery and NOT Birmingham) and said that my RE agreed to the Metformin and it was already called in. FABULOUS! Man, those bad boys are HUGE.  Like horse pill huge.  Dr. B said that it can cause upset stomach and diarrhea. Oh fun.  If I get preg, I will stay on it the entire pregnancy.

I've left another message for someone in Birmingham to call me back.  I want to do IVF (the retrieval part) beginning on my next cycle...which should be the end of this month (Nov.) I need to know what the next step is and how to go about getting it done.

These next weeks are going to be all about supplements (yes I ended up ordering a endo supplement made by Dr. B-but only because I don't want to look back on this and say I could have done something more), eating super clean, and preparing my body for IVF.  I need to lower oxidative stress, get rest, and continue to workout too.

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Fast forward several weeks....
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I started the Metformin slowly per Dr. B's request and guess what? No diarrhea or vomiting (yay!) but I started getting UTI like symptoms and back pain on my right side less than a week after starting the pills. NOT COOL.  The symptoms would come and go and I couldn't make sense of it.  I finally went to urgent care the Friday before thanksgiving and NO infection was found. NONE. He said my urine was completely clean. Well...then what was going on? That doc said he thought I had a slow moving small kidney stone.  I wasn't completely convinced but he gave me an anti inflammatory (which did absolutely nothing by the way) and a med to help my ureter calm down. I was down right miserable. How could I NOT have an infection?

I had an RE appt scheduled and actually got to see my RE in person on Nov 20 locally which was wonderful (we went over an IVF check list, talked meds etc.). I asked to have my urine re-checked and NO infection was found again but my nurse practitioner noticed something was off and prescribed me an antibiotic.  My urine was sent for a culture.  In the mean time, I decided to google Metformin and side effects. Guess what?  After some digging, the Mayo Clinic claims that a "rare" side effect is UTI like symptoms and bladder infections. Sigh...Whether or not the Metformin caused it or not is up for debate but I've stopped it and haven't gone back to it.   The culture came back and yes, I did have an infection...

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I was actually half convinced I was pregnant this past cycle. I haven't even picked up an HPT for YEARS but decided to pee on a stick to check for sure. Nope, not pregnant. I was heartbroken.  So many emotions come with that-anger being a big one-but after crying to DH and crying out to God we both felt a little better.  I knew AF was coming and I had to refocus my thoughts on IVF.

I got AF this morning and called my local clinic for my baseline u/s and bloodwork. I was able to get an appt today within 30 mins of calling. FAB! You guys, my antral follicle count was 15! 15!!!! Even my nurse was shocked at how good that is for a 35 year old! They are cautiously optimistic for me and my doc even had semi positive words about how this is going to go. 

The only bad news about the appt was that the lab tech didn't realize I was there for IVF so she drew for the wrong blood work tests. For real. I have to go back Friday for a redo.

I start birth control pills tomorrow and I'm not looking forward to it....all a part of the process I know.

Thanks for hanging in there with this long post! I'll update again soon.

Protocol:

I'm getting impatient. It's now been 10 weeks since I completed my necessary blood panels for Dr. B. I just wanted to complain...

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Today I FINALLY I received a call from his office to let me know that my blood work results are back.  I've scheduled an appt with Dr. B to go over my results next week.  I'm hoping I'll be able to do IVF three weeks after that appt. I've been researching possible medications that he uses for his patients. I'm not sure if you've heard of LDN (low dose naltrexsone) but that drug looks promising. I've been reading medical journals and studies on it and the results are quite interesting to say the least.  It does have to be made in a compounding pharmacy so maybe that's part of the hesitation and I've learned that the FDA will not approve dosages less than 5mg (I may use either 1mg or 3mg). Here's a link to many studies showing it's benefits for treating immune issues/chronic pain/anti-inflammatory activities etc. It lowers certain cytokines and stimulates the body's own production of endorphins.

"The increase of β-endorphins to reduce pain levels is only one aspect of the use of LDN in pain management, especially when the source of the pain is related to an inflammatory process. It has been shown that LDN reduces inflammation by reducing multiple pro-inflammatory cytokines."

That could be a very helpful tool with dealing with my fibro/endo issues.  Now it's more waiting to see if Dr. B prescribes it.

Other medications could include prednisone, Neupogen (which by the way is a super expensive injection typically used with cancer patients to increase white blood cell counts to fight infections), lovenox, IVIG (another massively expensive intravenous drug) and who knows what else. I'll keep you posted....

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Waiting, waiting...today is my phone appt with Dr. B...So anxious to find out my results!

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Just finished talking with Dr. B! I need to write this all out so I can try and remember it all.  If you remember, I did 19 vials of bloowork that was shipped to ReproSource in MA back in August.  Then I did another 7 vials (DH did too) of fasting bloodwork a week later.  I've been anxiously awaiting those results...and today I got them!  I have ZERO markers for immune responses. ZERO.  But I did have many markers for inflammation which is consistent with endometriosis. I will be starting Metformin 750mg twice a day for four weeks beginning as soon as I can get the prescription written and filled by my local doctor. Even though I do not show symptoms relating to PCOS, Metformin has been shown to help with inflammation and egg quality for those with endo. After four weeks, I will do IVF either here in AL or go back to AZ (I have a big decision to make on that).  My embryos will be frozen, then I will do Dr. B's standard immune protocol consisting of Prednisone,  Lovenox, and intralipid therapy for the transfer. Basically, this is the best case scenario! He said several times today that I should have no problem conceiving on his protocol.  Music to my ears!!!  It's still a much longer process that I'd like, but we are inching in the right direction.

Since I do not have any immune markers, he said I can do either a paleo diet or Mediterranean diet. I don't have to do the AIP diet and boy am I thankful for that!!

If you've been following all of this, I appreciate your kind words of encouragement more than you will ever know. You all bless the socks off me! This has not been easy at all and now that we have some more big decisions, will you be praying for us?

Surgery Complete!

I'm now almost a week post op! I had surgery last Friday in Tucson and overall, things went very well.  I'm still not 100% yet but that'll come with time.

Dr. G found "very extensive" endo "everywhere".  He removed a uterine polyp, a small fibroid, and many tumors and cysts. The tumors were sent to pathology and I just got the report yesterday that they all are benign.  My anterior and posterior cul-de-sacs were filled with endo.  All has been removed and I've been cleared to start IVF as soon as Dr. B is ready with my protocol.  Dr. G told DH that pregnancy will help keep the endo away...well yeah doc...we know and we've been trying to get preg with zero success!  In all, I had stage 3 endo removed (would have been classified as stage 4 but I was missing one factor).  I have two lower pelvic incisions healing, as well as one in my belly button.  I am still pretty bruised across my abdomen as well as my lower left incision.  I don't remember ever being as bruised and banged up from my last two surgeries but I am older now.

I do want to give a shout out to the women's surgery center at TMC. I was super impressed with the facility.  It's been given a complete overhaul since my surgery there in 2009.  When I walked into my pre-op/triage room, I was greeted with calm relaxing music playing and nature scenes on my TV.  Once I was in my gown, it was plugged in to a heat source so I could stay toasty warm waiting for surgery. Those little details helped keep my anxiety at bay.

Hospital gown with warm air!

This is as PG of a picture that I could get...

Thank you to everyone that prayed for us during this.  The prayers were definitely felt!

Surgery Consult:

Hey friends.  I just wanted to quickly update you all.  I had my surgery consult in AZ a week ago today.  It was a blast from the past to walk into that clinic after not being there for 6+ years.  The entire space had been updated and looked great. My sweet Skittle was conceived there (I know, so weird to say and think about!) so the memories from that place flooded back. I also lost many babies there too so I was a bit emotional.  I'm so thankful my sister could join me in AZ and that she got to meet the doc that helped me get preg with Skittle. (And she told him as much! ha!) Getting her positive take on Dr. G was reassuring and comforting.

I updated Dr. G on what we've been doing fertility wise.  He was shocked to learn that I had had uterine septum surgery in 2011 and again in 2013. He told me he saw no indication of that when I had surgery with him previously. I also mentioned that I had a lap in 2013, where they found stage I endo. I told him that I had no pain relief and haven't been able get preg easily or stay pregnant since.  His take was that they probably saw the endo but being that it was only stage I, they didn't do anything about it and closed me back up. His theory makes sense.

He then examined me by checking on my heart, lungs, and looked in my throat, making sure there wouldn't be any problems for the breathing tube for surgery.  He also did a transvaginal u/s.  It was as expected, showing possible lesions in my ovaries.  My uterus looked totally normal but he did mention he was going to look inside it during surgery.  He said I definitely needed surgery, exactly what Dr. B had said too. What made me very happy was that he said he absolutely would work with Dr. B on my case and mentioned that if I wanted to cycle with him again, he'd be willing to do Dr. B's protocol NO problem at all.  He was kind, gentle, and humble during my appt.  It was a breath of fresh air, honestly.  It made me feel like I had made the right decision by being there and pushing so hard for him to be the one to do the surgery.

Originally, I was going to have surgery today but I'm so thankful I'm not.  I still have not heard if Tricare has given the pre-authorization for it or not.  I'm not looking forward to the surgery at all, other than I just want it over with.

In other news, I've now lost 20 lbs since moving to AL a year ago, with 10 of those lbs lost within the last three or so months. I haven't seen this weight since I was in my first trimester with Skittle 9 years ago.  We've drastically cut down on eating out, the only times being when we are traveling/vacationing. I'm 3/4 of the way to being dairy, gluten, and sugar free (I do put almond milk creamer in my coffee that does have some sugar added but I think that's it).  I drink this nastiness (Amazing Grass Green Superfood) in 8 oz of water everyday now as I've read that wheat grass is a good thing for increasing AMH levels.

I cannot for the life of me figure out how to turn this...sorry!

I usually have to have some lean protein or a handful of almonds to gag it down though. By the end of the drink, it's gritty making it hard to choke down.  I'm not doing Keto or carb watching, just increasing veggies and fruit intake, which I've noticed makes me want less starchy carbs. I do as much organic foods as I can and try very very hard not to eat anything fortified with synthetic vitamins.  Once surgery happens, my plan is to be even more strict with food until we get through IVF (or whatever treatment we decide to do).

Surgery should happen next week...I'll keep you posted!

Progress! (and ranting)

You know what would be so freaking awesome? If DH and I could have sex and BAM I get pregnant!  Isn’t that what normally happens?! I don’t think that’s how it works...OK, maybe it does but just not to us.  To get pregnant with no testing, no surgery, no medicine, and no IVF!? You people out there that can decide when you want to have a kid make me jealous. You’re like “humm, I think I’d like to have a child with an Oct birthday...” and BAM you do. Or you “don’t want to be pregnant in the hot summer” so BAM you aren’t because you timed it that way. For real. I have no concept of that.  And don't even get me started on women that get pregnant on accident. It completely blows my mind...

It’s been one headache after another with all of this testing (blood shipped to the wrong address, collection kit sent to the wrong clinic, Reprosourse forgetting to send me dry ice or just plain not calling me back, etc.). And now Fed Ex is on my crap list after they failed to deliver a shipment of dry ice this morning. I needed it for the sperm sitting in my fridge right now. Yes, you read that  right. DH was supposed to send his sample on dry ice to MA for testing today and now it’s all messed up because Fed Ex has no idea where the dry ice is. His sample is now invalid and most likely will have to be redone. Thanks Fed Ex. You just complicated my life even more. Now Reprosource has to get approval from my doc for the retesting and we get to start all this over again. I’m not happy.

I GOT THE REFERRAL TO AZ FOR SURGERY!!!!!!!

There was a a momentary outburst of panic on my end when the letter online from Tricare said that the referral was to ANOTHER new doc in AL and NOT AZ but I called Tricare and it was taken care of.   After talking with AZ the first time, surgery was supposed to be the week of Sept 24. Well, the hospital can’t schedule it for that week now for whatever reason and they want me on the 21st. That is like the worst timing ever.  That’s 7 days from the required consult (which I have to do to get a pre-authorization referral from Tricare).  I'll now have to fly back and forth and can't do both the consult and surgery all in one week. Can you tell that I’m in a bad mood? I bet you’re thinking, “but this will all be worth it in the end.” It’s only worth it if we get a take home baby from this. It has not been worth it up to this point. We’ve invested too much time and money in this to quit now. Ugh. Rant over.

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I now remember why we stopped all of this nonsense 4.5 years ago. It's already getting to be too much and the real fun hasn't even started yet.

DH and I are finally done with the Dr. B testing. In all, 26 vials of blood from me (separate fasting and non fasting tests), 7 vials from DH, and two semen analysis's. Now we wait. It should be 6ish weeks for results and then I should know my new med/supplement protocol.

This is from my first blood draw for Dr. B...that's what 19 vials of my blood looks like.  It really wasn't bad at all.  The staff that walked by would make comments like, "Wow that's a lot of blood!" and "Man, I'm glad that isn't me in that chair!" Gee thanks!  The lab techs and nurses were great and super kind about it. They made me sit there while my blood spun down and gave me ginger-ale and crackers before I was allowed to stand up.  I'm just glad this part is over.

Next up is figuring out the logistics of surgery...

No Go:

Positive: I am very well hydrated. My kidneys love me.
Negative: The 17 vial blood draw didn't happen as the collection kit was sent to Birmingham and NOT to Montgomery. It's a blasted mess. Because it contained dry ice, the courier that was going to bring it back to my local clinic can't. And the dry ice is going to melt. And I somehow have to figure out how to get it to me. And I can't remember the last time anything infertility related was easy, painless, and smooth.  And, I'm mad. I'm mad that I didn't confirm the address of where the shipment was going. I'm mad that the contact I've been working with at ReproSource is hard to get a hold of and never calls me back or responds to my emails.  I received DH's blood draw kit this morning at home so at least there's that. He now gets to come with me next week (as long as I figure out how to work this) and we get to do this fun stuff together. *Insert eye roll here*

While I expected hiccups, this is not what I had thought was going to happen.  I paid $149 for the kit and now it has to be redone. Not cool ReproSource, NOT cool.

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As of today, Friday Aug 10, the referral to AZ still has not been pushed to Tricare. I just received another call from my case manager and she put me on a three way call with a general surgeon from Maxwell who had me explain to him what the differences were between a laser laparoscopy vs excision and why I thought I needed it.  Really. They wanted to know my official infertility diagnosis (which is habitual aborter by the way) and if I wanted to have more children. They also asked if I had children (umm...is that info not sitting right in front of you in my record that I HANDED to you?!?) and if I was trying to get pregnant. Would they be more willing to get me this surgery if I WASN'T trying to get preg?  I'll never know.  I gave a brief history as quickly as I could to him and told them how I had success in AZ and no where else.  I was then told that Tricare most likely will not approve any travel expenses but should approve the referral as it is technically continuity of care (even though it's out of network). I'm good with that...but this is the same thing TRICARE themselves told you last week so why isn't this taken care of yet?

I'll be honest here. AZ is not my first choice in this.  Dr. G (The doc that helped me get preg with Skittle) is an interesting soul (very kind, but wacky if I do say so myself), but does know his stuff when it comes to endo. He was the first doc of many before him that even suggested I had the disease. He saw the markers for it when other RE's didn't...or at least the others didn't care enough to check. I feel like I'm pinning a lot of hope on him that he can do the same surgery he did 9 years ago on me again.  I haven't even talked to the guy in 7 years.  I'm doubting myself for pushing his clinic and now just praying that the surgery (even if it's less than ideal but better than laser alone) coupled with Dr. B's protocol can help us.

How can I pray for YOU?

"Every day may not be good...but there's something good in every day." -Alice Morse Earle

More Insurance Fun:

I'm sure you all are bored to tears reading about all of our insurance woes but here we are again. It has been back and forth for weeks now trying to find a provider that does the surgery I want/need but at the same time is contracted with Tricare. I have now been assigned a case manager from base to help with this whole mess.  My case manager from Utilization Management has put me in contact with Tricare several times, doing three-way calls, to help sort this all out. Basically, all the doctors I have suggested either are no longer contracted with Tricare, or flat out will not accept any insurance at all (which I have mad respect for by the way), or have a 6 month+ wait list.  I was told point blank by a Tricare rep that excision surgery is not medically necessary (!?!?!?!?!?) and that if I want to go to the endo care clinic in Atlanta or see a specialist in NY, they will not pay a dime towards my care.  Even if I change from Tricare Select vs. Prime, they will not help me in any way.

FINALLY just yesterday, after being on the phone with Tricare for over a half hour, it was recommended that my case manager put in for my old doc in AZ that did my first endo surgery and second IVF, which ultimately helped us conceive Skittle.  The problem?  He no longer is in network for Tricare as of Jan 1, 2018.  BUT, because we've been trying to locate someone to do that surgery for quite a while now and there are no providers within 100 miles of me that do this surgery, they are still pushing the referral since I was his patient in the past.  I'll take it!  Coordinating my care between four doctors is close to a nightmare but I am determined to see this through.  Surgery in AZ will be difficult logistically, but it can be done. Dr. B has given his blessing (not that I need that) for surgery in AZ and is requesting to speak to the surgeon about my case.

The endo care clinic has been lobbying in DC for quite a while now trying to bring awareness to this disease and pushing for better insurance coverage for excisional surgery.  I hope they keep up the good fight as I now see everything they warned me about!

If this blog can help just one other person with the difficulties and struggles of infertility, I think it's all been worth it to show my vulnerability and pain.

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I have been back and forth with ReproSource (the lab that works for Dr. B), trying to figure out all the testing I need. DH's first of two semen analysis kits have arrived and of course he's TDY.  Sigh. It's taken weeks to be able to schedule the first of my blood draws but it's finally happening tomorrow. Pray for me?  It's a 17 vial blood draw in the morning. Hydrate, hydrate, hydrate time!

Here's a pic of Skittle cause she's cute :)

Love you all!

The Latest But Not The Greatest

This was written over the course of several weeks...

Sigh....I’m getting pretty tired of the doctors and appointments already and I haven’t even started treatments. I had another video conference today with my current RE. The goal was two fold. First to convince her to write me a letter of recommendation to my PCM for an excision laparoscopy and also a recommendation to get a referral to Dr. B. I also wanted her to consult with Dr. B on my behalf. The appt started out rough. I was trying to be as gentle as possible about wanting someone else to perform the surgery and I was finally able to convince her to put in my medical record that I needed that surgery as well as a referral for additional immune testing. She also finally agreed (with a HUGE plea from me) to just speak with Dr. B on the phone. She said she reserved the right to not work with him if she disagreed with his protocol. I get that....but I need her help to pull this off.

I got a copy of my records and immediately brought them to base to try and convince the team working on my case to approve the referral. Even if I manage to get the referral, the out of pockets costs are extremely high. My RE did recommend a pelvic pain specialist who she works with at her hospital who does the excisional surgery. He does in fact take Tricare, but it’s a 6 month wait just to get a consult (and I’d have to convince Tricare I need to go there in the first place)....this is not getting any easier.

I am officially a patient of Dr. B. I’ve filled out a detailed diet questionnaire for him and am waiting further instructions of how to proceed. I’ll be looking into switching to tricare select and comparing benefits for all of this.

I’ve also looked into having a consult with The Endometriosis Care clinic in Atlanta. We would have to pay out of pocket there too as they only accept out of network insurance. The wait for a consult appt is into the middle of Sept as of right now. The approx cost for the surgery is between $20-30k, excluding hospital fees.

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I have received a one time "second opinion" consult referral to Dr. B!  I honestly don't even know what that means or what is covered.  I called Tricare today and the rep I talked to said everything should be covered 100%.  I don't believe that for a second.  I submitted a claim to Tricare in the amount of $2400 and if they reimburse me ANYTHING I'll be shocked.  I am now unsure how to proceed. I think I have to go back to my PCM and beg for another referral (and this one took 2 months to finally receive.)

I have a consult appt with the clinic in Atlanta for the endo surgery Sept 18 and was given an additional recommendation to a doctor in NY that IS in network but getting a referral to them could take months.  And frankly, I'd rather not fly anywhere for surgery as I have never done well with anesthesia (I've been put under 10+ times and each time is rough for recovery). 

Right now it's "Do we pay all out of pocket and try to get a partial reimbursement from Tricare after I submit a claim based on the Points of Service option?" or "Do I fight for a referral to Atlanta or one of two doctors out of NY-one in network or to the one out?"  The only way to have this surgery paid for by Tricare is by me going to the doc in Birmingham or the doc in NY that is in network WITH a referral from my PCM. 

My local RE agreed to help me with the lab work Dr. B is requiring. Everything has been submitted by my RE and now I'm waiting to get a call from ReproSource out of MA to finalize the details and get a collection kit.

A concern is that as soon as all of this is finalized and I start treatments, we will be moving again and I will have to start over....I don't even want to think about that right now.

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You guys!!!  I just learned that my PCM is submitting for more referrals to Dr. B!  That request should take between 3-5 days for approval. Also! Get this! My PCM is submitting approval for a referral to The Endo Care Center in Atlanta!  That is HUGE!  If it gets approved, our out of pocket costs are drastically reduced for that surgery and I would only have to travel 2 hours from home for it!  Thank you, Jesus! Prayer IS the work!

Now if I could just get ReproSouce to call me back....I've left several messages and NO ONE IS calling me back to set up testing! ARG! Once I can get my blood drawn (3 separate times mind you), and DH does his testing, it's another 6 weeks for the results so the sooner the better for all of this!

I hope you all understand that I'm not wanting this surgery for purely having a chance at conceiving another baby.  I'm in some pretty serious pain during ovulation and during AF...it's to the point of not being able to function normally during those times.  I can't even pee during AF without death gripping the wall in the bathroom from the pain that takes over. I know that I have endo on my bladder/ureter and colon making my period and ovulation VERY difficult. I get searing pain in my cervix, bowels, and across my abdomen when I go to sit, stand or MOVE on my period. THAT IS NOT NORMAL.  While I can control some symptoms with diet, I want that surgery to feel good again and hopefully by adhering to the "endo diet" after surgery I can keep it away longer this time.

Thank you all for praying for us!

Some History:

Hi friends, for some of you out there that are semi-new to reading/following my blog I thought I'd give a little history of how our infertility journey came to be. It's not pretty and honestly, fairly graphic. Actually, this is going to contain some possible triggers for people and I want you all to be forewarned before you continue reading this. 

Writing through all of this has been therapeutic for me  as we reflect on the 12 year anniversary of my first miscarriage.
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Miscarriages aren't something that is normally talked about.  But I'm going to today.

It was about 6 weeks after DH and I got married that I realized I had missed my period. I wasn't super in tune to my cycles back then but I could usually remember when I had first started and usually when I had ovulated. I was sure I was several days late, if not by a whole week. I grabbed an HPT during a grocery run, took the test as soon as I got home. Yep, I was pregnant!  We called my parents like an hour after we found out as we couldn't contain our excitement and I think they were as surprised as we were, but happy too. 

I was advised by a nurse that the base clinic wouldn't want to see me until I was 10-12 weeks along and told me to wait until after we had moved to Idaho before pursuing an appointment. We moved to Idaho the middle of June 2006 and while I didn't have crazy morning sickness, I did have pregnancy symptoms.

I was almost 11 weeks along when I noticed I was spotting brown blood several times a day. After two days of that and starting to panic, DH and I headed to the ER on base. A doctor checked my cervix, and said it was high and tight. She tried to find a heartbeat of the baby using an external doppler and declared that it must be too early for it to be detected. She didn't think I had anything to worry about and didn't even think I needed an u/s.   She sent us on our way. Not two days later, DH and I were in Boise for the weekend at a movie. I started cramping something fierce and bleeding. A lot. I was miserable and begged DH to drive me back home. By the time we got back, I was full on hemorrhaging and in serious pain. It was hours before the bleeding and the passing of very large clots was under control enough for us to get back in the car and get to the ER.  DH was making me drink as much water and Gatorade as I could tolerate as I had lost a significant amount of blood. Once in the ER, there was nothing they could do for us other than document that yes, I had had a miscarriage and again sent me home this time armed with Motrin and something to make my uterus cramp down further. I was dilated to 7cm and had the contractions to go with it. July 3, 2006 was a very long, painful night. 

I continued to bleed for another two weeks and knew something still wasn't right. I got in to see an OB on base and during the pelvic exam she got very quiet and asked for assistance from another doctor. I was doing my best not to panic at that point.  Our baby and the placenta were stuck in my birth canal.  As both doctors were working on me, there was a sigh of relief as they were able to pull them out but then that triggered a gush of blood that had been building up behind the blockage. It looked like a murder scene around me.  I was then admitted to the hospital for the amount of blood that I had lost and got my first ever IV (and 6 tries to find a vein along with it as I was fairly dehydrated-eventually they called for help and a chief from the ER was able to get it in).  I was given a shot in my arm to help stop the bleeding and was told that I would have to have surgery if I didn't stop bleeding soon-like I somehow had control over that. 

The bleeding did finally stop and I was able to go home. The emotional damage from that miscarriage is long lasting and something we both will never forget. Our baby and the placenta were sent off for testing. The pathology report showed no chromosomal abnormalities and no clotting factors.

It took us another 18 months before I was able to conceive again. This time I knew what could happen and I was freaked out that it was going to happen again. And, it did. DH was TDY when I noticed I was spotting brown blood again.  I was nine weeks along. My friend met me in Boise (where I had jut gotten off work) at the hospital.  I got in right away and was given an u/s. Two gestational sacs were noted, but no heartbeats.  I was crushed.

I was scheduled for a D&C for soon after that as I absolutely did not want to go through a natural miscarriage like the one I had prior.  DH wasn't able to get back home from where ever he was to be with me so thank the Lord, my bestie was able and helped get me through my first ever surgery. 

Once again everything came back normal from pathology.  Both DH and I did massive amounts of blood work for a recurrent miscarriage panel. And again, all normal. I was then sent to my first RE and started infertility treatments under the diagnosis of "unexplained infertility and recurrent pregnancy loss".

We tried three IUI's, a couple with Clomid or Fermara and all with injections. On a 4th IUI attempt, I over stimulated and it was turned into IVF (transferred 3 embryos that resulted in a negative pt test). After we moved to KS, I went on to have a FET and another miscarriage. We decided to try 3 rounds of "timed intercourse" with injections-once again all negative. Once in AZ, a new RE was shocked to learn no one thought to check me for endometriosis. I then had excision surgery that removed stage III endometriosis and did IVF a month later where I conceived our little Skittle. Just over a year after she was born, I had an endometrial biopsy (which had to be done three times as the doc couldn't get a good enough sample), a uterine septum repair surgery and three more FETs to try and have a sibling for her. All negative.  I had laser surgery again in 2013 for endo, IVF twice more and had an early miscarriage from a natural conception in 2014. My last FET was cancelled due to cellular death of the embryo.

It's been a long road. It's been over four years stopping infertility treatments but yet, here we are about to try again. 

If you read all that, I thank you. It felt good to finally write down our story. I've seen Gods hand throughout all of this. He's protected us and shown us what a miracle and blessing children are. He placed people in my life exactly when I needed them. Our little Skittle is a miracle baby. She survived when all our others have not and I am overwhelmingly thankful for her life.  I believe God is still merciful and good no matter our outcomes. He is good whether He decides to give us more children or if He doesn't.

We thank you all for the outpouring of love and support you've shown us through our continued journey.

Frustrated...

I get that insurance companies rule the world. I really do. But, I'm sick of it. I've been trying for over a month to get a referral to an "out of network" provider (Dr. B) and it's just not going to happen. I was told that even if I managed to get Tricare to accept the referral, it will only be for a second opinion as they had to code Dr. B as an RE and not an RI. IF I get it, it will only be good for one appointment as an evaluation. THEN, if I want to do treatment with Dr. B, I have to re-submit the claim and the Lt Col I've been working with on this said they most likely won't approve it since I have an RE here already. Basically, I either do the endo surgery with the doc out of Birmingham, or I pay 100% of it out of pocket to have it done the way I want.  I also asked her if I could see a doc in Chicago that is also an RE/RI that IS in network and she said Tricare will still say no because I'm not located there. I'm frustrated.  I feel like I'm out of options.

I've had endo surgery twice. Once with a doctor in AZ and I was able to get pregnant with Skittle six weeks later. I did the surgery again in TX and I was unable to get pregnant. I believe the way I had it done in AZ is the way that Dr. B recommends it be done. The doctors here in AL and the ones I saw in TX do it the way he doesn't recommend (for those with autoimmune issues).  If I do the surgery in NY, the cash discount price (low end) starts at $20,000. (!!!!)

The only hope I have left for this is that my current RE said she would be willing to work with Dr. B...would she learn to do the surgery for how he wants it done? She's willing to do the protocol he recommends as well as order the blood work.

God is bigger than insurance companies. He's bigger than my fears about money and surgery.  I just need to continue resting in His promises. He is faithful and just. Always.

Dr. B Consult!

I just got done talking with Dr. B (the endo specialist out of NY) and I wanted to write it out so I can remember our conversation.

He went over my history (I had previously emailed him a fairly detailed run down of my past) and he said I most likely have immune issues/egg quality issues/and endometriosis wreaking havoc on my reproductive system.  I've agreed to do the necessary testing he requires as well as doing a LAP.  He did mention that not just anyone should do the surgery, but that I needed someone that specializes in endo to preform it. He said it's not worth it to just have my RE do it.  So, I'm currently waiting to hear back from their insurance lady and to figure out how to go about getting this surgery done.  He said he doesn't know of anyone qualified to do the surgery in AL but he has several he can recommend that takes Tricare....coordinating all of this seems daunting but I believe it's worth pursuing, not only to try and have another baby, but to have a healthy future.

He said that I was still young (BLESS HIM!) and that I didn't necessarily need to do IVF.  Once I've done the testing, he can prescribe meds through my current RE and I can try naturally since I've achieved a natural preg in the past (I would still need to be monitored closely since I'd be on Lovenox, Progesterone, etc).  Guys, that was music to my ears! I do NOT want to have false hope but I feel like this is a huge positive step in the right direction. 

He recommended that I start taking omega 3's (which I already do), turmeric (which I already do), Coq10 (which I already do) melatonin (which I already do), Myo-Insoitol, Pine Tree Bark: Pycnogenol, and resveratrol. 

I'll write again when I know more...

Follow Up

Here's the recent low down.

I was able to get in to do a video conference with my RE earlier than I thought, which was FAB as originally it would have been 8 weeks after the new patient appointment (and the doc requested 3 weeks).  Basically, that CA-125 test wasn't high enough for my RE to have any concerns about it being linked to ovarian cancer but was high enough to show active endometriosis.  That was what I was expecting and it did put my fears to rest.  She DID recommend that I do the endo lap surgery now (yep, EXACTLY what I said I needed) and to do IVF the next cycle after.  She went ahead and ordered a ton more blood work for a recurrent miscarriage panel (hello another 13 vials of blood).  I got the results as we were out of town in Houston. 

Everything was in normal range except two.  I was not surprised in the least to know that I have the MTHFR gene mutation (c677T single mutation, heterozygous) but I was shocked to learn that I also have PAI-1 4G/5G deletion/insertion allele promoter polymorphism (also heterozygous, one copy of each).  The two of those mutation together is more cause for concern vs. just having one.  Guess what?  It causes recurrent miscarriages and implantation failure due to clotting factors. I was told that if I was to get preg naturally (uh huh it's been 4 years my friends) that I'd need to call them the minute I find out so I can be put on Lovenox/Heparin and low dose aspirin to thin my blood.  If I do IVF, I'll be put on those for my entire cycle.  I'm surprised I wasn't tested for these things sooner...but I guess it's good I'm finally getting some answers. So, not only do I have a really hard time getting preg, I have an even harder time staying preg.

My AMH (Anti-Mullerian hormone) level is decent for my age.  Anything over 1.06 is correlated with a better response to ovarian stimulation, so that's good for my chances with IVF. 

Next week is my consult with Dr. B.  I'll keep you posted....

Testing Testing

Oh you guys...Here's the latest.

I had a Rheum appointment on Monday and while the doctor was, how do I describe him...let's say, clinical, emotionless, and kind of a lump on a log, he took my 5 miscarriages seriously and ordered a boat load of lab work (12 vials) to check antibodies/lupus and who knows what else. I go back for those results in two weeks.  He also prescribed me a newish sleep med to help me heal by sleeping better.  My main reason for going to see him was to see if I had arthritis starting in my left hand.  He said he didn't think it was but that it was just my fibro acting up. Lovely.

Tuesday DH and I went to Birmingham for the new patient RE appt. It was hard. We were emotionally and I was physically drained by it.  The RE was incredibly detailed in taking my history and I did think she was thorough with me.  The only thing was that she will not refer me to Dr. B until all testing by her has been complete. She also brushed off my endo and said she believes it's my eggs causing problems and not an immunity issue.  I disagreed several times about that with her. While, yes, it could definitely be an egg quality issue, I really think there is something much bigger going on too, hence why I want to see Dr. B.  She finally agreed to getting me tested for CA-125.   It's almost like she didn't believe that I have endo or something. She said they no longer routinely do surgery for endo and that was it.  Well, Dr. B would not agree with her.  I've been reading (and the nurse practitioner I saw Tuesday agreed with me) that NK (natural killer) cells go down around 6 weeks post op, allowing for higher statistics of pregnancy within that time frame for endo patients.  Basically, if I have the surgery again, I have around 1-2 cycles of having the best chance at getting pregnant.  The RE's recommendation to me: Use donor eggs and/or use a surrogate. That was not exactly what I was thinking I was going to hear from her.  She also scheduled me for an HSG and while I tried very hard to get out of that one, I finally agreed to do it. She explained that if we did IVF, there would be a 40% higher chance of implantation failure if one or more of my tubes were blocked. Sigh.

I also had a vag u/s to check my uterine lining and follicle count. I was CD 7 and the NP was impressed with my follicles and saw a triple stripe in my uterus already.  She predicted I would ovulate in 4 days.  There were NO signs of diminishing egg count/quality.

A nurse from the RE's office called me on Wednesday and said my CA-125 level was 72.9 and that I needed a follow up with the RE about it. It's double the high end of the test. Yeah, google was NOT my friend when I looked up more about that. CA stands for Cancer Antigen.  It's a tumor biomarker test which shows tumor activity with higher concentration of cells in/around the ovaries. It's a test used for ovarian cancer (among others).  BUT, it's also used to show endo activity.  I had a minor (ok, maybe more than minor) freak out about seeing that, but I've since calmed down.  At least now my RE will believe me that I really do have endo. My AF this cycle was HORRIFIC. Like, fetal position on the floor, crying in pain horrible. It was a reminder that yes, while I can manage endo with diet, it never goes away. 

I had my HSG yesterday in Birmingham. I was a nervous wreck about it as it had been 10 years since my last one. The HSG is an x-ray test that involves a catheter through my cervix to my uterus. They put enough dye in my uterus to fill my tubes and see if it "spills" out.  It did.  Both my tubes were completely open and my uterus shape was "perfect" according to the RE. I cramped the rest of the day but I'm so very glad that is done. I'm sure the reason I haven't had it done in so long is that I've had lap surgery to look at my tubes twice now and both times they were fine.

Next step is a follow up with both my rheum and RE and a phone consult with Dr. B in June. While the RE is pushing IVF I will not do it until I speak to Dr. B and do his testing first.

Will you be praying for us? 

Step One and Two:

Step one of 47 is complete! The referral appointment with my new PCM went well last week. They did give me some grief about not seeing a doctor in four years, but really, that was it. I explained that I’ve been very anti-doc lately and it’s only Dr. B out of NY that has gotten me out of hiding. My PCM took almost 45 minutes with me (totally unheard of these days) and agreed with me that I need an RI (reproductive immunologist) but I have to get that referral from my new RE since he/she will need to prove that we’ve exhausted all options (because apparently 3 failed IVFs and 6 failed FETs mean nothing).  Tricare MIGHT even pay a portion of the travel fees if I can play it right.

I have the referral in my hand two days after that appointment. I’m pretty sure it’s always been at least a week to get one in the past. And get this, I got a referral for rheumatology too! My PCM in GA refused to give me one-saying he could treat me himself. Yeah, no he couldn’t and he’s a big part of why I stopped going to the doctor.

I had some basic bloodwork drawn and I’m waiting on the results of that. Next step, getting a new patient appointment for the RE and rheum. Yay for progress!

Thank you to everyone for the smoothie suggestions! I’m still playing with combos and figuring what I can gag down.

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Step two complete! I just made phone calls to set up new patient appointments for both Rheum and my new RE. I was given the option to have my initial appointment here in my town (with the RE) but the first available was the middle of June. NO thank you. I decided that I'll be traveling to Birmingham for it instead and was able to get it for just over 2 weeks away. Not terrible. That appointment is going to be a monster at 3.5 hours long and DH has to go with me (semen analysis right away-good times for him).  I'm really, really not looking forward to all the testing and exams that go along with this part. I asked the receptionist if the doctors there would be willing to work with an RI and she didn't know. She did say that they have referred out before, however. 

I know these posts aren't the most fun to read but it's my way of journaling so I can remember details for later.  Love to you all!

Here's just some pictures of my cute kid wearing a poptart KPea Dress:

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Here We Go Again:

I'm pretty sure I've used that title before for my blog. Well, it's the truth, so I'm sticking with it. As it is...here we go again.

I officially have an appointment set up to get a referral for an RE-in less than a week (a small miracle!). I have no doubt that it will get approved and while I had been slowly researching RE's in our area, now I guess I have to step it up and really figure it out. All I really want out of an RE is his/her willingness to work with an RI (reproductive immunologist) of my choosing and maybe start the basic testing I'd have to do with anyone at this point (including a lap for endo that I'm 99% sure I need). I've been reading websites of potential RE's and man, now I remember why I've put this off for so long. That initial appointment is just plain HARD and icky. I know that my situation isn't all that unique but starting over is daunting and invasive.

I have two choices for an RI. Dr. B out of NY that I've previously mentioned or Dr. K out of Chicago. Dr. B is the leader/pioneer of endometriosis/immune therapies for infertility couples but here's the kicker. He doesn't take insurance of any kind. While he does give a free phone consult, I see no point in that unless I go ahead and do the recommended testing...testing and treatments that he would completely tailor to me. I'd most likely have to get weekly blood draws and monitoring for tweaking meds.  Now, Dr. K DOES take my insurance so while I'd have to travel to Chicago for the initial consult, that consult would be covered by Tricare. She does most of what Dr. B does but is that good enough? Do I go with the best and pay out the nose for it or see someone that is still good at what she does and insurance will help?  I'd eventually have to travel to NY as well because it's required that we meet face to face before he can prescribe meds. BUT if an RE here is willing to work with him (and would be willing to prescribe the meds that he recommends), it would make my life so much easier (and maybe even a little cheaper). I've also discovered a Chinese herbalist/acupuncturist that works closely with Dr. B and what I'm seeing about her is really great stuff-and lines up with what I've been reading. People, this is going to cost a small fortune to do as the initial testing alone can be $3-4k without insurance.  Then add in IVF, IV meds, travel, supplements, etc and wowza...

Positive report:

For my last cycle, I was almost cramp free. That's huge you guys! While I still had some, I did not have to medicate for them. Not once. Whether it's due to changes in my diet or exclusively using mama cloth, I'll take it! It's been years since I've had that happen.

Help: It's no secret that I struggle with eating clean. I'm trying hard to drink a smoothie every day to try and get in more fruits/veggies/supplements but I'm finding it hard to choke down. I'm trying to stay away from dairy, corn, soy, gluten, sugar, and synthetic vitamins (including anything fortified or enriched, vit d, folic acid etc) I tried coconut water mixed with frozen berries, turmeric, chia seeds, and a little bit of spinach in a smoothie today and it was just plain awful.  Any suggestions out there for me?

Thanks for your comments, love, and encouragement!

Update on Callie

I was never one, at least when it came to parenting styles/choices, to go all one way or another, on just about anything.  We did cloth diapers during the day, disposable at night.  Skittle ate homemade baby food, organic store bought and did Baby Led Weaning.  I breastfed, pumped, and she got formula.  And while we didn't co-sleep because I always thought I was going to smother her, I see why people do it.  When she was little, I probably leaned more towards the western way for medicine/care but still saw the value in trying holistic methods, at least when it came to my daughter.  I would say now however, it's the opposite. 

Slowly, over the past several years, we've been trying to adopt a more natural/holistic approach to our health, food, and environment.  I like the results I've been seeing. 

I am all for informed consent, whether that be for our children or for our pets.  I'm frustrated by the vets I've seen, (4 of them by the way) for Callie, that it is one way or nothing with them.  I want to try a more holistic approach to her treatment and it's been a roadblock so far.  I absolutely do not want to try anything that could hurt Callie's kidneys but there has to be something out there that can help her body try and fight the remaining cancer cells .  I think we will still try the IL-2 injections (even though they are double the price that we were originally quoted, which put a strain on our decision making process) but maybe if she's already going to be having routine blood work, then maybe I can get her general oncologist on board with trying other more non-conventional treatments.  I've read that CBD oil could be of benefit to her, topically and/or orally.  Her general oncologist did like that I've been giving her L-Lysine (her surgical oncologist was a complete skeptic of the benefits) and suggested I continue to give it to her daily, and not only when she's having cold like symptoms/Herpes flare up. 

I've successfully changed her wet food to a non-GMO, mostly organic, no fillers product and she actually LIKES it.  (She's a SUPPPPPPER picky eater!!!  When we first adopted her, our vet in MD wanted her on only wet food and I tried over 15 different brands/flavors/styles and she would ONLY occasionally eat Friskies)  In my opinion, her dry food wasn't all that terrible but I've been decreasing it and upping her new wet food.  Amazingly, she's completely tolerating it. 

We've been told over and over that this cancer is a death sentence for her.  Please, if you have any other suggestions for her, I'd love to hear them.

One Month Post Op:

 

Hair is growing back!

Wow...It's been a YEAR since I lasted posted! BAD, BAD, ANGIE!

Here are some things that have happened since I last posted:

-We moved to AL!
-DH got promoted!
-Skittle turned 7!
-I'm still not pregnant

It's now been four years since I've last seen a positive pregnancy test.  I've been doing a bit of research and found a FB group for autoimmune diseases and recurrent miscarriages.  A reproductive immunologist, Dr. Braverman, oversees the group and it has been a wealth of information!  And here I thought I knew so much about infertility!  Actually, there's been some new treatments that have come out since the last time we tried IVF.  DH and I have been going back and forth with deciding to try again or not based on that.  At the very least, getting a consult from Dr. Braverman makes sense.  His work with endometriosis could be a game changer for me.  I was talking with my sis about it and she said, "Would you look back and wish you would have tried?"  I immediately said yes.  That may have been all the push I needed.  I think it's worth getting a phone consult with Dr. B (as he's based out of NY) and pursuing (a massive amount) of blood work to see my immune responses. His theories just make sense to me. 

Two weeks later:

I was going to put in a consult with Dr. B and then we found that our cat has vaccine induced injection site fibrosarcoma and everything else has taken a back burner.  :(

A couple days before Christmas, I found a small mass on the back right leg of our Callie cat.  I made an appt with a local vet and she was seen on Jan 3.  He felt it and told me the diagnoses. I asked for a referral to be seen at Auburn at their vet teaching hospital and was accommodated immediately.  She saw a surgical oncologist and she was scheduled for surgery to amputate her right back leg the next day.  Trust me, this decision was not made in hast.  It all seemed to happen very quickly but it was agonizing going through it.  She did well with surgery and I was able to bring her home 3 days later.  She's now 2.5 weeks post op and doing very well (despite a big set back with a nasty upper respiratory infection).  Unfortunately, even with the clean margins that we got, the recurrence rate is 70%.  We are now pursuing Chemo treatments and a new injection treatment called IL-2, which could help boost her immune system to help fight off the remaining cancer cells (was told about 50% of cats respond well to it). 

Here's some of her progress pictures:

One Day Post Op: Mad Cat!

 

3 Days Post Op: (first day home) 

7 Days Post Op: the dot on her back is from a antibiotic shot for her upper respiratory infection:

 

Very sad sick baby with her cold:

 

 

2 Weeks Post Op and feeling much better:

 

 

2.5 weeks post Op: Sutures out!

 

 

She's been playing some and running (slowly) through the house but not really attempting to jump more than about 12 inches off the ground.  Her vet says that she'll try higher at her own pace.  They are pleased with her progress!

 

More on all this later...