MicroblogMondays: A Whirlwind of a Week

Microblog_Mondays

(This is going to be a extra extra long post.)

A whole lot happened in the last week.

Since my last post, I have done a few things to start our next steps.  A lady in my Fac.ebook DE group had used this donor agency that focuses on asian donors.  I had completed my profile back in December but never did the phone consultation that was necessary to get access to view the donors.  This DE group friend had super positive experience with this agency in terms of responsiveness, coordination, organization, and the outcome of her cycle.  Armed with that knowledge, I felt a lot more comfortable contacting this agency.  The case manager assigned to me is the same one this DE group friend worked with.  Last Monday on my day off, the case manager and I had a phone consultation.  She thoroughly discussed all the different aspects of working with her agency and explained the fees in details.  After our phone call, I started looking at donor profiles on the website.  I’d say 99% of their donors are asian all over the United States.  I saw a few of them that I liked and inquired about them.  One particular donor that I like is half Chinese half Vietnamese in Southern California.  She just finished with her third donor cycle.  There were four couples on the waitlist for her when I asked.  The case manager was in the process of going down the list.  She is really super fast and organized.  The next day after I asked, she had already knocked off 3 couples from the list.  The last couple that is from out of state did decide to work with this donor.  If this donor decides to donate again, we will be next in line and will be able to work with her in June or so.  There are other non-Chinese asian donors I am interested in as well, but I am still looking for a full Chinese or part Chinese donor.

Other than this one donor agency, I searched all over California for additional donor agencies.  I saw some more leads but didn’t come across a donor that I truly want to work with.  It’s the location, or their responses to previous cycles, their ages, their nationalities, or their status (currently cycling or matched and have a huge waitlist).

In addition to looking for a new donor, I emailed a few clinics around the country and requested financial information and the process for completing a donor cycle there.  All I can say is that, all the clinics require similar fees, which are going to cost us an arm and a leg regardless of where we go.  All of the clinics were responsive in terms of responding to me with information.

I feel like I should start a spread sheet to sort out all the financial information and donor information from the clinics and agencies as it is getting a bit overwhelming.

My period came back on Wednesday.  The same afternoon, my nurse who returned to work from an extra long weekend called me and told me how sorry she was about the outcome of Lucy.  She notified me that Dr. No Nonsense (my RE) had a cancelation the next day at 1pm and asked if I would want to take it for my WTF appointment.  It was crazy that he was available at a time that worked for me.  So I took it.

I gathered information from various friends about what they would ask and wrote down a list of my questions.  I had to get back to work for my 2pm client so punctuality was very important on that day.  After waiting for 10 minutes, I proactively inquired about the delay.  Finally, a medical assistant who shared my real life name came out and apologized for the delay.  Dr. NN was ready but she was tied up with another doctor’s patient.  I finally sat down in front of Dr. NN at 1:15pm.

It was interesting.  Instead of greeting me, Dr. NN stared at his computer screen as if pondering something.  I sat down and waited for him to give me his attention.  I think he was staring at my record trying to make sense of it all.  About 30 to 45 seconds later, he began to doodle on a blank piece of paper in front of him.  For us being not pregnant, there could just be two reasons he said: embryo and uterus.  Without knowing if the embryos were normal, there was no way to know if it was because of the embryos.  He said it wouldn’t really help him to know if the other ten eggs of the same batch yielded good results because from a batch of 20 eggs, we might have been unlucky and gotten the bad eggs and the other recipient received the good eggs.  It’s hard to know.  Every batch of eggs is different, he said.  So in order to ensure that we know what to blame, it’s natural to want to do PGS testing on the embryos.  He did say that the pregnancy outcome of tested vs. non-tested DE embryos is actually about the same.  So testing them doesn’t really help with pregnancy.  BUT, in my case, testing will mean that if another transfer fails, we’d know if it was because of chromosomal abnormality.  However, PGS only tells you if all the chromosomes are there but it doesn’t tell you if the embryos have other anatomical abnormality.

The next thing to test is the sperm.  He said that the sperm DNA fragmentation test will give us different criteria to select sperm in the future.  However, he said that the impact of sperm on eggs is very minimal.  He compared embryos to a published book.  Messed up sperm is like typos in a published book.  Correcting the sperm is equivalent to correcting the spelling of words in a book.  It doesn’t really change the message.  I found that analogy interesting.  BUT, he does hope that it would be sperm problem so we know how to correct it.

The next next thing to check is my uterus.  He suggested the endometrial receptivity array test (ERA).  This tests whether or not the lining on day five (the typical day of transfer) is receptive for an embryo.  A group of my DE group friends also suggested checking the protein beta-3 integrin.  Dr. NN said the ERA test is better.  Why?  He didn’t say.

So if I still go with my clinic, the plan is to biopsy all the embryos on day 5 or whichever day that I’ll do the transfer.  So that will include the embryo that we will transfer.  The biopsy will be sent to another lab for analyze.  So we won’t know if the transferred embryo will be normal until at least a few days after the transfer.  But that way, if the transfer fails, we will know if it’s the embryo or not.  We would want to do it that way because a fresh transfer often gives the best chance for getting pregnant (70% rate).  So I wouldn’t want to miss having a fresh transfer of a fresh donor.

Dr. NN and I discussed the need of all these tests.  He still firmly thinks that I will get pregnant just by putting back a good embryo.  When I said I would like to check on the embryos, the uterus, and the sperm, he said that if we find success, then we won’t know what makes it work.  I looked him in the eye and said, “I don’t care about what makes it work.  I just want a baby.”  Plus we don’t have luxury of having extra time and money to experiment one thing at a time.  He understood and was like, Okay okay okay.  We’ll test everything.  Yes please.

Bob and I had a discussion about transferring one vs. two embryos.  Dr. NN is still recommending one embryo.  But this time, I’ll leave it to my husband who has not made up his mind yet.

I asked him some other questions.  Basically, there was no difficulty with the transfer, although he wasn’t the one who did it.  He did not recommend testing of blood clotting disorder.  He did not think that autoimmune problems are an issue for me.  We discussed the use of Lov.enox.  He said that many people do these things that are not evidence-based.  When it is not evidence-based, it is really hard for him to recommend it.  However, he is open to me using Lov.enox if my lining comes back normal on day 5 of the transfer after the ERA test.  If it is found pre-receptive on day 5, then he wouldn’t recommend it since the lining should be the issue.  He was sharing with me about his obstetric rotation and learned that sometimes doing the least is the best.  He said that many mothers who were about to give birth wanted to check on the baby and the resident obliged by checking manually.  When that happened, many times the pregnant women and/or the baby would develop infections.  Sometimes it’s best to leave things the way they are.  He said that it is actually more important for me to be stress free during this period of time.  We discussed about Donor Con.cierge.  He said that he’d rather me spend the extra $2000 on that service than some of these tests that we will do.  He said that if we decide on using Donor Con.cierge, he would be happy to knock off some of these testings that we will do to cut the cost.  He is that confident that we will get pregnant with a good donor.

Dr. NN said he will be almost as happy as we are when we get pregnant.  He really wants this for us.  He said that having babies is very rewarding although the first six months will be very hard.  I asked him if he had children.  He then shared with me that his wife, who is also a physician, and he went through a lot of treatment before they had their children.  He said that his wife hated him at that time because he was more like a fertility doctor who wanted to find answers vs. a husband who supported her emotionally.  I didn’t expect him to have gone through his own infertility.  It gives a whole new perspective of his heart for his patients.  I think the scientist of him really wants to find out why things do and don’t work.  But often times, we cannot afford to do it that way with the limited time and money.

He also said to make sure to have my nurse schedule him for the transfer and not other doctors.  I teased him and said he told me the same thing last time but didn’t do the transfer.  But I said I was okay with it.  He said that having him to do the transfer has a psychological effect on the whole cycle.  I was like, Okay I’ll tell my nurse.

At the end, he finished typing up his notes.  He reached both of his hands to touch mine and said that “We’ll do this together”.

That was not the end of the story.  Since he doesn’t know the cost of anything, I was in touch with my nurse about both the ERA test and the sperm DNA fragmentation test.  Since our insurance doesn’t cover anything at my clinic, we will have to pay out of pocket for everything if we want to get it done there.  I have spoken to my friends who did both tests so I had an idea of the ballpark cost of everything.  The ERA was supposed to be about $800.  The sperm test should be about $450.  My nurse originally quoted me $900 per biopsy which has to be done twice (?!) so the cost will be $1800 just for the biopsy and then there is also the cost of the test transfer and the meds.  I was so shocked at the cost.  Later on, the patient navigator clarified and said that the biopsy each will be $234 so two of them will be $468.  I was super confused about it.  So finally, my nurse clarified everything and said that the biopsy will be $468 for both and the test itself would be $570 each x 2.  The whole thing will be $1608.  That is really far from the $800 I knew my friends paid.  She explained that the biopsy has to be done twice because they would want to do it on both day 4 and day 5 so that if it comes back pre-receptive we don’t have to waste another month to test it again.  I mean, it does make sense, but it also means that if the test comes back normal for day 5, I am wasting $800+ just to save time.  The sperm test is as ridiculous.  There is a charge of processing the sperm at the clinic for $566.  The sample will be tested by another lab that will cost $450.  The whole thing will cost $1016.  Isn’t that crazy?

So this is what I did.  I emailed my OB surgeon at my insurance because I don’t really trust my own OB anymore.  My OB surgeon would ask the REI there and let me know soon about the ERA test.  I called the IVF clinic of Kai.ser, my insurance about both tests.  The lady who picked up the phone had not even heard of these tests.  She put me on hold to investigate, came back, and told me that they don’t do these tests there at the clinic.  Interesting.

I also emailed my former RE Dr. E.  I love love love Dr. E.  I did not continue working with her and instead went to my current clinic because my current clinic offered a lower cost option of mini IVF back then.  I would have continued working with Dr. E if I had the funds.  Anyhow, she is known for responding to emails promptly with details.  This time she still didn’t disappoint.  I wrote her an email detailing our journey since we left her practice and asked a whole bunch of questions.  Exactly half an hour later, she wrote me back with enthusiasm.  She wrote, “Soooooo great to hear from you! I’m doing procedures this afternoon.  I will reply by tomorrow.”  I didn’t have to wait til the next day.  She wrote me back 3 hours later with detailed answers.  She was heartbroken that we didn’t get pregnant with DE.   She’d recommend testing all the embryos even with donor eggs.  She also recommends both the ERA test and the e-tegrity test for me given my history of fibroids and endometriosis.  I would have to check with her finance person about the cost of these test.  The sperm DNA fragmentation test costs only $250 if we did it with her.  Can you believe it?  $250 vs. over $1000 at my clinic.  And bless her heart, she told me that she has leads for proven asian donors for me.  

I wrote her back a bunch of new questions that night.  She responded to me a few minutes later saying that they were all great questions and she’d reply shortly.  She wrote me back the next morning.  She said that it’d be helpful for her to know the history of my donor but also for her to look at my uterus at this point to see what degree of adenomyosis is present at this time.  She included a few donor agencies, guest passwords for them, and a few specific donor profiles that she wanted me to look at.

My question for her: “Can you think of anything else that we may need to do before we proceed with another cycle?  I am so heartbroken by our last failure that I would really like to cover everything before we proceed.  Do you think a biopsy for endometritis is necessary?  How do you view auto immune issues?”

This is her answer.  Pardon the all caps:

“UTERUS, UTERUS, UTERUS

I WANT YOU TO GET A VERY HONEST OPINION FROM SOMEONE RE: WHETHER YOUR UTERUS  IS STRONG ENOUGH TO CARRY A PREGNANCY

WOMEN WITH A HISTORY OF FIBROIDS, ENDOMETRIOSIS CAN ALSO HAVE A CONDITION CALLED ADENOMYOSIS.  I WOULD HAVE TO SEE YOUR UTERUS TO TELL YOU VERY HONESTLY WHAT I THINK AND WHAT YOUR CHANCES ARE WITH ALL THE LATEST INFO I CAN GATHER ON YOU

CHANCES ARE VERY SMALL YOUR ISSUES ARE RELATED TO AN INFECTION IN YOUR UTERUS OR AN UNDIAGNOSED AUTOIMMUNE CONDITION

THE ANSWERS ARE ALMOST ALWAYS: EMBRYO OR UTERUS

AND UNLESS YOU TEST THE EMBRYO (GENETICS) FOLKS OFTEN GO TO THE MORE ABSTRACT ISSUES LIKE AUTOIMMUNE ISSUES ETC WHERE THE ANSWER IS ALMOST RIGHT IN FRONT OF THEM

HAPPY TO HELP  

LET ME KNOW HOW!”

I wrote her a bunch of other questions.  She wrote me back within half an hour saying that they were all great questions and she’d get back to me soon.  I wrote her finance person about the cost of all the test as well as a DE cycle with and without PGS.  I am sure she’ll write me back today.

I looked at the donors that she pointed me to.  Beautiful donors, young, tall, and educated.  And part or full Chinese.  I will look more into it but it seems like there is a whole world of donor agencies out there that I didn’t know about.

Working with Dr. E is very different.  She is honest, prompt, and thorough.  I often have to wait a couple of days before I can get a second hand answer from Dr. NN.  With Dr. E, she encourages questions and for you to be as informed as possible.

So I will gather all the financial information and see if my insurance covers for anything.  If not, it’s very likely that I’d at least do the tests with Dr. E and will go from there.

Yeah.  This is where we are now.  Thanks for reading all 3000 words of this post.  This is by no means micro but it reflects where we are in our journey at this point.

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28 thoughts on “MicroblogMondays: A Whirlwind of a Week

  1. A lot of good, positive information here. As they say information is power. I just wanted to note that I am one of those women with a history of fibroids (two myomectomies to remove 16 in total) and adenomyosis. I’ve therefore spent a LOT of time consulting doctors and researching adenomyosis and you will find that it is not an issue so long as you are able to build up lining. Women with adenomyosis who have fertility issues are those who simply cannot get their lining thick enough with estrogen in a FET or with the stim drugs in a fresh cycle. I have never had lining thickness issues, and it doesn’t sound to me like you have either.

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    • Thank you so much for you input. I think I need to trust the OB surgeon who did my hysteroscopy and my saline sonogram recently. She said that the lining looked perfect. Then I should trust her that the lining looks perfect.

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  2. Wow…lots of info for you to process. I like your plan. Gotta make sure both the embryo and your uterus is capable and I truly believe in the ERA test. I feel that in the near future most women will have it done as a part of their IVF cycle. Best wishes as always and your resilience is inspiring. Your baby is so loved and wanted already and I feel that you are doing everything you can to get to them…you are getting closer and closer every day! Love to you Isa! xoxo

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    • Thank you girl. I can’t imagine how it feels to go through what you have been going through. Best wishes to you and pray that your hope and positivity and strength will carry you through the next many months.

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  3. Wow, Dr. E! I’ve never had ANY medical practitioner who would even give me their email address, let alone respond so quickly and thoroughly. Especially with my original RE, her idiot secretary was constantly screening her calls and getting crap wrong. Dr. E sounds like an absolute gem. I really hope you can work something out with her.

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  4. Wow, very thorough. I hope that you find answers. I don’t know what’s involved with the ERA test, but I had the e-tegrity biopsy and it was fairly traumatic, so if they go for ERA and it’s less awful, that sounds great! I hope you find the answers you are looking for and formulate the best plan for you. It sounds like you have an amazing medical team rooting for you.

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  5. Wow that’s a lot of info. Looks like you’ve put in a lot of thought to your feelings and also what the doctors recommend and what your friends have contributed. Good luck with these next tests. Dr. E sounds incredible and I hope you get some answers. Sending you lots of support!!

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  6. Lots of info and yes, I read the whole thing. 😉 I’m disappointed Dr. NN wouldn’t do a thrombophilia panel, and also surprised he would let you do lovenox without one. I’m all for testing because it’s cheaper than a procedure! J had the sperm test done, and I think it’s only done by one lab or company in the country. As for transferring one or two embryos, I’m going to change my stance from one to two. You’re likely in the same boat we were and would prefer having twins to having a negative result. That was also the cycle I started lovenox and after so many procedures with negative or gray zone betas, for them to both stick makes me a firm believer in my diagnosis and treatment. I hope you get the answers you need but more importantly, I hope you get the baby you desire. Or two. 😉

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  7. I accidentally hit enter and sent my last message sooner than I meant.

    I’ve read most of your blog. It helps me because we both have similar issues. I have diminished ovarian reserve. I was diagnosed three years ago to have the egg count of a 45 year old woman.

    For four years, my husband and I tried without success. We tried chemical IVF once and had to cancel because no good eggs grew. I also have been diagnosed with andenomyosis. They saw it by MRI. I am suspected of endomytriosis, but it has never been confirmed.

    Then last summer we decided to try natural cycle IVF. I had never been pregnant. Nothing ever worked. It seemed hopeless. But that cycle we got an exceptional quality egg and they took it out and fertilized it by needle with my husband’s sperm. It began to grow.

    Then they put it back. Two weeks later I was very, very pregnant for the first time in my life. Those were happy days. We made it all the way to the second trimester when disaster happened.

    I had a condition know one knew of: cervical incompetency.

    A perfect, healthy growing son was taken from us when my cervix simply began opening in the second trimester. If I had known we might have saved our son with a cervical stitch.

    But I am grateful for a few things. I thought I had terrible quality eggs, but I got a very healthy son. We proved our DNA is compatible.

    The procedure was done by a three day transfer and was very successful. The doctor’s assured me that my advanced adenomysios did not cause the loss and clearly did not prevent pregnancy.

    But it’s hard to taste the sun and be thrown back into darkness and feel like “why? Why? We were so close”.

    I hope you find your way to success.

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    • OH I am so heartbroken for you. I was reading your comment early one morning and felt so gutted for you. I am so sorry that your perfect pregnancy ended this way. How long ago was it and how are you doing right now? Yeah it’s so hard to figure why something happens…. We may never find out why. I hope that you have since picked your up and are on your way to your success. Please let me know.

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  8. Sorry it took me a couple days to read this novel 😉 I am glad to get an update. It sounds like lots of opinions and options but I know you and Bob can get to the bottom of it! Hugs hugs hugs and as always let me know if you want to chat!

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