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Thursday, May 15, 2014

Battle in my Brain

If you have been reading you know that last week I wrote about a big decision we needed to make regarding the Immunological testing with Dr. Braverman in New York. Well over the weekend my husband and I spoke about it and he was in agreement with doing the testing to see if there is anything else contributing to my seemingly inability to carry a child besides my translocated chromosome. On Monday I called Dr. Braverman's office and spoke to Judy, the incredibly nice billing lady and gave her the okay to start the process with us. My credit card was charged Dr. Braverman's $3,000 fee right away. I got an email shortly after I hung up the phone with June from the medical assistant with the lab form I needed to complete, have my OBGYN sign, and fax to Reprosource, the lab that processes the blood work. On Tuesday my OBGYN signed the forms and faxed them like we needed. I was told to expect a call from Reprosource Friday or Monday to arrange the actual blood draw with the lab here in Ohio. So things were progressing seamlessly just how I like it.

Yesterday we met with Dr. Awadalla at Institute for Reproductive Health. It was me, my husband, my sister, and my niece. We took my sister so we could discuss doing an egg donor cycle using her eggs, and my niece had to come because she had no sitter for her. I had faxed every lab, every test, every report along with a written out medical history of our pregnancies to the doctor weeks ago, but it was apparent that he just started looking through them when we got to our appointment. I get it-I'm sure he's a busy man. When I explained to him that we were interested in doing an egg donor cycle with my sister because I have a translocated chromosome, have had a stillborn, have had three miscarriages with two confirmed as having Down Syndrome, and most recently had a failed IVF with PGD cycle-the doctor was instantly on board with the egg donor cycle. When I brought up that we were getting ready to do immunological testing with Dr. Braverman the doctor kinda lost it on us. He didn't want to talk about, said he wouldn't support it, and said it was completely unnecessary because we KNOW why I've lost our babies...the translocation OF COURSE. He asked me if my biggest fear was losing another baby-well absolutely-and offered to do the Egg Donor Money Back Guarantee Program with us which basically gives us 6 chances of having a living baby or we would get more than half our money back (I will explain more about this later). He did an ultrasound on me to check to see if there were fluid in my tubes because of my previous HSG results-no fluid seen. He also did an ultrasound on my sister to check her follicle count since she has been on birth control for four years-plenty of follicles. We met with the very nice billing lady to discuss the costs of one fresh cycle, one frozen cycle, and the money back guarantee program. We also met with the egg donor nurse coordinator to discuss the process of getting my sister medically cleared and synchronizing our cycles. By this time my niece was in the lobby with my sister throwing a fit so we had to wrap it up and get out of there. When we got to the car my niece was sure to tell me she was mad because we were taking too long! I'm in trouble if we end up with a child that has her personality!!

So from the standpoint of Dr. Awadalla-he is confident he will be able to get me pregnant on our first fresh donor cycle, confident I do no not need immunological testing or treatment, and confident I will be able to carry that baby to birth.

Since we left our appointment yesterday my mind has been going a million miles a minute. Me and my husband have been arguing about the immunological testing-he no longer wants to do it but I still do. I'm crunching numbers in my head, battling conflicting thoughts, and feeling extremely out of control with all of this.

Let me just share with you the conversations that I've been having with myself over the past 30 hours.

Conversation topic: Should we do the Immunological Testing

What if Dr. Awadalla is right? What if we don't need the testing? We would be wasting 5 grand. What if Dr. Braverman finds something in our blood work and pushes us to to treat the issue he finds but it really wouldn't affect a pregnancy? We would be wasting a whole lot more money that we really don't have. What if he does find something that could affect a pregnancy and Dr. Awadalla refuses to work with him to treat the issue? I can't have another miscarriage. I could kill someone if I had another miscarriage. What if we don't do the testing and there really is something else going on that could result in me losing another baby? If we don't do the testing and lose another baby I would be so angry that we didn't do the testing and treat the issue. I don't want to have any more regrets. I'm tired of having regrets. I'm tired of not following my instincts. I'm tired of doctors around here giving us the easy answer. Well, what if we did the testing, but waited to treat the issues? Maybe just having the testing done will help us make a better decision about what we need to do to have a healthy baby. Maybe we could do the testing, do a fresh donor cycle and even a frozen donor cycle, and if we don't get pregnant or lose another baby from these first two cycles then we go back to Dr. Braverman and start treating the issues. Can I handle even one more loss...maybe? I don't know. I'm so scared of going through that again. I don't know what to do. (Called Dr. Braverman's Office today.) At least we can get back our $3,000 we already paid if we don't get the testing done. At least if we did the testing and he didn't find any other reasons for our loses we would still get $2,000 back. So what would we do if he did find something? I'm pretty smart...I think I would be able to decide what really would affect a pregnancy and what wouldn't. Again, we don't HAVE to treat the issues if we decide we don't WANT to. He can't make us. I just need peace of mind...I need these tests done. I need to know if there is something else going on and don't want to wait for us to lose another baby to know. Plus we can make a vacation out of going to New York to see Dr. Braverman. We have our time share and 5 vacation certificates we have to use before the end of 2015. I really hope Alex just agrees with me. I don't like feeling like he's not on my side anymore:(

Conversation topic: Single Cycle vs Money Back Guarantee Program

Crunching the numbers-
To screen my sister we will have to pay $2,050. Our psychological testing will cost $250.
A single egg donor cycle will cost $13,300, plus $1,100 for ICSI
We can use our left over medication from our failed cycle for the most part...maybe have to spend $1000 on meds
If we have any left over embryo's to freeze it will cost $600 + $400 per year to store them.

So for one complete cycle with freezing, it would be $18,700
A frozen embryo transfer cycle will cost $3700 plus $300 for medication so $4,000
If the fresh cycle didn't work and we ended up doing a frozen cycle (if we even have any to freeze), we are looking at $22,700.

For the Donor Egg Money Back Guarantee Program we could get 3 fresh cycles AND 3 frozen cycles for $24,000. No extra fees for ICSI or embryo freezing and storing.
We would still have to pay $1800 to have my sister medically cleared, $250 for our psychological testing. $250 to "insure" my sister for each fresh IVF cycle she does. And $1,000 for medication the first fresh cycle, but $300 for meds every frozen cycle and $3000 for meds for every additional fresh cycle.

So if we HAD to use all three fresh and all three frozen cycles it would cost us $34,700 total for everything.

3 fresh cycles + 3 frozen cycles without meds, screening costs, and freezing costs is a $54,300 value. So $24,000 is a steal.

If we do not end up with a LIVING baby after 6 attempts, we get $17,000 back. We would only be out $17,700 which is LESS than the cost of one fresh cycle.

If we get pregnant the first fresh cycle and have a living baby as a result, and we did the money back guarantee program, we would get no money back and would have over paid $9,600 which we would never see again.

If we didn't get pregnant the first fresh cycle but got pregnant the first frozen cycle and have a living baby as a result, and we did the money back guarantee program, we would be out $5,900 which we would never see again.

The money back guarantee program is only cost effective if its going to take us more than one fresh and one frozen cycle to get pregnant and have a living baby.

Ensue Mind Racing: I bet my sister could do the STD screening through her OBGYN and her insurance would pay for it. That would lower the cost of the $1800 the clinic is asking from us for her medical screening. Her insurance is going to be changing next month, it's probably going to be a high deductible plan so it may not even benefit us to do it that way. I wonder what type of birth control pill the fertility doctor would want her on? Maybe I should call them and check since she has her gyno appointment next week. Do we do a single cycle and take a chance that it will work the first time? If it doesn't work and we have frozen embryos, it is still cheaper to do 1 fresh and 1 frozen cycle separately than to take the package. What if we don't have any frozen embryos...a second fresh cycle would cost another $14,400 so it would be cheaper to do the package. What if we do the package and we do have success the first cycle? Then we are out a lot of money. I honestly don't think it's going to work the first time...especially if we don't figure out why I haven't been able to carry my own babies. Can I really handle going through that many more cycles? We don't even know if my sister would be willing to do more than one cycle. It's not really fair to ask her to do more than one if the first one doesn't work. She has a life too...she's young, she works full time, she has a daughter. We can't expect that she's going to want to keep doing this for us, especially once she gets through the first cycle and sees how hard it with all the appointments and medications. She's already annoyed with me asking her to take a prenatal vitamin and upset that she has to change her birth control this month and can't take the depo shot anymore. There is no way she would be able to put up with this madness for possibly 2 more cycles over the course of 2 whole years. Well, if we did the package and didn't get pregnant or have a baby from the first fresh or first frozen cycle, they did say that at any time we could say we didn't want to do any more cycles and would still get the $17,000. In that case, if it didn't work and we stopped after the first fresh and first frozen cycle....we would only be paying $7000 instead of paying for the cycles individually which would cost $14,400 for a fresh cycle and $3,700 for a frozen. So really...that would be a steal too. It almost makes me not want it to work the first time because then we are out the money, but then again...i just want one thing to go right...I'm tired of going through all this. I want to feel success. I don't want to keep feeling failure and heartache. I don't want to go through another miscarriage. I don't want to have to even ASK my sister to consider a second cycle. This is driving me crazy.

This is honestly what I deal with. It makes me really feel for the Schizophrenic patients that I see at the hospital I work in. My own thoughts are overwhelming enough...I couldn't imagine here other voices in my head too. No wonder they want to kill themselves sometimes. This battle in my brain consumes me to the point that I cannot make a logical decision, I cannot make an emotional decision, I cannot make any decisions. My logical brain fights with my emotional brain and right now they are intertwined like a pretzel. This is the reality of someone going through fertility treatments and/or recurrent loss....our minds are always racing, thinking and worrying about what is the right choice and fearing for future failures and heartache. This is not easy. Whoever thought infertility was no big deal, I hope you think again.

We need to make a definite decision on the immunological testing, like by Monday at the latest. We have another consult with Dr. Hoffman at Bethesda Fertility in Cincinnati on May 28th. I am interested to meet with him and to see how I feel about him, his staff, his opinions, and the costs involved in their cycles. Once we meet with Dr. Hoffman we will need to decide which clinic we are going to go with-Institute for Reproductive Health or Bethesda Fertility. I need prayers for peace from anyone and everyone-peace in my heart, peace in my soul, and peace of mind. I'm going to try not to get ahead of myself on some of these things and try to give my sister some time to let all of the choices she has to make set in and not push her too hard to get started on the things I'd like her to have been doing like last month (the prenatal). I'm quite OCD so I hate when things our not in my control so I tend to be overwhelming and want stuff done right this second. Lord give me the ability to just take in one moment at a time please.

In better news-I finally heard back from Ohio Reproductive on the issues with our bill that I called and complained about. It sounds like our bill will be getting lowered from $415 to somewhere between $100-$200. Sometimes being proactive does pay off.

Bear with me as we continue to walk this journey we didn't ask to walk. I'm doing the best I can with what I've been given in this life.


Stacey M said...

My head is spinning from all of that so I can't even imagine what you're going through! Before my ex-husband went psycho and left me, we were looking into the IVF fertility package. It seemed like the best way to go for us at the time.
I'm thinking about you!

Anonymous said...

Thinking about you. I wish life didn't work that way - if only one thing could have been sparred - why couldn't women have been able to have babies like we were intended to with no issues. I will never understand.

Brianna said...

I totally get why your head is spinning. There are so many questions that you have. If they could be answered it would make the decision so much easier to make. Unfortunately, you won't have the answers until you start doing treatments. Ugh. Sending you some calm thoughts as you weigh all of the information and try to make a decision. I wish there was a future fairy I could send to you to help with these decisions.

Anonymous said...

When we were going through this, I completely obsessed over money. I think it is a tangible thing to cling to, more "rational" than those things you can't quantify, like peace of mind, regret. When all was said and done, we spent $60k on our kids - half of that for ivf (2 cycles) and adoption for baby #2. Of course it would be nice not to have spent all that money (we were lucky to get through it without debt), but I chalk it up to crappy luck, a stumbling block in life I just needed to get through. Most likely, this is one of yhose things in life you CAN fix with money and that is a good thing. I'm not sure if this is at all helpful, I'm just saying I hope you use your heart along with your head when you make your decision. We ended up being one of those couples with terrible luck when it came to obscure tests. Best of luck navigating this with your partner.

Anonymous said...

I totally feel your pain. The lack of control is absolutely the worst part. To want something so badly that other people get to have so easily is frustrating and cruel. Praying for you. If you ever need someone to talk to about the options, I'm a great listener and have done so much research already.

Anonymous said...

It is such a crazy tough decision. Both the immunological and the money back guarantee. Just a heads up, I submitted your post to Stirrup Queen's round up. Also, would you consider turning off captcha? It makes it really hard to comment when I'm not on a computer.