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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Emotional Meeting With Dr. No Nonsense

This morning was my WTF appointment with Dr. No Nonsense, my RE.  I was originally offered a phone consultation by my nurse.  I insisted on an in-person meeting because 1) I hate speaking with Dr. NN on the phone because he uses a speaker phone, 2) for this important meeting, I need to look him in his eyes, and 3) I just need to see his face and find out why he thinks the cycle didn’t work.  Last night, I typed up all my questions on Goo.gle Docs and placed a writing pad and pen in my purse.

Being ten minutes early, I was surprised the nurse called me right away and led me to wait in an exam room across from Dr. NN’s office.  To my greater surprise, Dr. NN came to get me at 10:02.  Practically on time.  A student doctor was introduced to me as someone who would observe the session.

We discussed about why this cycle didn’t work.  Basically, nobody knows.  We commented on how the embryos all fertilized but didn’t grow too well on day three.  Dr. NN said that eggs usually carry the most weight when it comes to fertilization and growth.  The sperm plays a role but it’s very hard to tell what kind of role.  He said that the fertilization and growth for frozen eggs are about equal to fresh eggs.  So it’s an unknown why these eggs didn’t grow well since the sperm and the eggs all looked good.  Dr. NN said that in the future if we need to fertilize eggs again, we could do the DNA fragmentation test.  He said that DNA fragmentation is highly experimental.  It doesn’t really change how we fertilize eggs because ICSI is still the way to go.  But it does provide a different set of criteria to identify which sperm to use.  It basically helps to choose the sperm differently.  Dr. NN told me not to worry about that right now as we should focus our effort on transferring the great embryo that we have.  I asked about the possibility of needing donor sperm if Bob’s sperm is not good.  Dr. NN said that we wouldn’t even go there as it is not necessary.

Early blastoscyst’s success rate is not as high as regular blastocysts.  I thought that Kevin our early blastocyst was from an embryo that had a fragmentation of four on day three because of how it was listed on our embryo report.  Dr. NN clarified that no one knows which day three embryo Kevin came from.  He said that the lab used to grow the eggs separately.  However, it was discovered that embryos grow better together in a petri dish.  So he said that there was no way of knowing which embryo Kevin was originally from since they were all put together in on place.  He said that that piece of information isn’t important anymore.

I made him go through the donor’s previous cycles just to see if they actually grew as poorly.  He spent his time digging up the information on the computer.  Her blastocyst rate for two of her fresh cycles was 50% and 40%.  I don’t know what I was trying to prove, but it really seems like either 1) we got a bad batch of eggs, 2) we have sperm that doesn’t work as well, 3) it’s pure bad luck, 4) it’s my uterine lining.  Nobody knows.

I asked about my lining.  He opts for a medicated embryo transfer because my low reserve means that my ovary may not produce enough estrogen for a good lining.  It is much easier to develop a good lining in a controlled environment with medications.  He does not think that I need any immune protocol.  We have these two new factors: donor eggs and sperm.  He does not want to throw in another factor and mess with my lining with something that may or may not be beneficial to the cycle. He thinks that an 8mm lining is perfectly good for a transfer.  I asked about spotting some blood clots during my menses.  He said that that’s perfectly normal.  It doesn’t mean that I have a blood clotting disorder.

I think around 20 minutes into the meeting, I became increasingly emotional.  I really wanted to remain as calm and composed as possible.  However, with the whole talk about the failure and possibly having to spend more money and time on a brand new donor if Lucy doesn’t work, it was just too much to bear.  I started tearing up thinking that it could happen that we’d never have our baby.   I actually cried in front of Dr. No Nonsense for the first time.  In fact, this was my first time losing my emotional control and crying in an RE’s office.  Period.  I was surprised at my tears, but my fear just surfaced and I couldn’t control myself.  I was telling him that we spent so much money on this, and that other people who used donor eggs got pregnant and have their babies left and right.  I felt like we got the short end of the stick.

Dr. NN was so kind.  His student fetched me tissues.  I apologized for being emotional, and he was very compassionate about it.  He said that you have gone through so much and have done so much treatment.  Of course you are feeling emotional.  He looked me in my eyes and told me that he believes one day I will get pregnant and have a baby.  He went on to tell me about one of his patients.  This poor woman failed a fresh DE transfer, a frozen embryo transfer, and another fresh DE transfer with a different donor.  She finally got pregnant with twins with a frozen embryo transfer.  The fourth time.  It goes to show you that you never know what will happen.  He said that yes, DE success rate is high, with a 70% pregnancy rate. But there is still a whopping 30% of people who don’t get pregnant during each cycle.  We just have to try.  And we have a great embryo waiting for us on ice.  He said that he will do everything in his power to help make it happen for us.  He asked how I would like him to help.

I told him that I just need my uterus to be in the best shape for our frozen.  He told me to get another diagnostic hysteroscopy to make sure that my uterus looks good.  We had one done back in July.  The surgeon back then told me that my uterus looked pristine.  Dr. NN said that it doesn’t hurt to look again so that we have a peace of mind.  Then he said that he’d make sure he is going to be the one doing the transfer.  He will try everything and whatever voodoo he has (whatever that means) to make sure that the embryo gets transferred in the safest way possible.  He said that together we’ll make it happen.

At the end of the session, I had already calmed down.  Dr. NN was finishing up his notes on the computer.  I told him that the embryo was called Lucy.  He actually typed it in and said that we’ll make sure that Lucy makes it home safely.  He told me to wait so that he could give me a hug.  He finished typing, came out from behind his desk, and gave me a huge hug.  He told us to focus on this great embryo that we have during this holiday season and keep ourselves positive on the outlook.

I really appreciate my doctor who gave me over 30 minutes of his undivided attention answering all the questions that I had.  So yeah, we won’t be purchasing any frozen eggs until after we transfer Lucy.  I know that the frozen eggs may be claimed by then. If we get pregnant with Lucy, the baby will not have a fully biological sibling.  I think we are going to be okay with that.   My own OB responded to my request for a hysteroscopy saying that she doesn’t do that in her practice so she has referred me to her colleagues who do.  Just like last time I may have to wait for a while before I could get an appointment.  I went ahead and emailed the surgeon who did my last hysteroscopy and I will see if she can see me earlier, such as some time in the next two weeks.

I like that we have a plan.  I hope that despite what happened this cycle, we will still be full of hope for the possibility of Lucy.  I believe that we will.  We just need time to heal.