2015.

2015 was brutal when it comes to our infertility journey. Going into our FET for IVF #3 with our PGS tested embryos and my best lining ever, I did not anticipate the outcome that we got. I also don’t think that even in my most-pessimistic predictions I ever thought back in 2011 that I would begin 2016 child-free.  But, as my therapist tells me regularly, this is my path. I have to stop waiting to get back on the path I’m “supposed” to be on. The path with two kids by age 35 that I gaze wistfully at as my friends walk down it.

To sum up what happened since my last post, we have decided not to pursue further IVF treatments at this time. The protocol from Dr. KK was very overwhelming, and even if I wrapped my head around doing IVIG, it didn’t make financial sense. IVIG costs $2,000-$3,000 per treatment and I would need 2-4 treatments to reach the point of all my previous miscarriages. That means $8k-$12k to possibly end up in the same place. With limited embryos and funds remaining, surrogacy seems to be our best option.

Surrogacy is CRAZY expensive. There is a reason that you only hear of celebrities doing it. For that reason we are hoping to make an independent match and avoid using an agency. That means hopefully finding a family member or friend that is interested or knows someone interested. There are also websites and Facebook groups, so we are exploring all options. We are turning the corner onto a new path, and I will update this blog as we go. The surrogacy process promises to be challenging and time-consuming, but ideally will bring back some hope.

Thank you to anyone who has read this blog so far. I hope that it has helped you in some way, even if to confirm that you are not alone. I hope that 2016 is THE year for all of you. Happy New Year! xo

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Dr. Kwak-Kim Follow-Up Appointment

I haven’t updated in awhile because I don’t really have many updates. I am struggling mightily with guilt about stopping treatments for now and sadness about our current situation. Also, this week marked my 33rd birthday and the 4-year anniversary of trying to have a baby – both pretty sad events. My husband keeps reminding me that it’s one day at a time, but sometimes I need to go hour by hour.

One update is the result of my follow-up with Dr. Kwak-Kim. The appointment was actually almost a month ago. Neither of us came away feeling much hope. I forgot to ask her what she thought our chances were if we follow her treatment to the letter. I guess it doesn’t really matter if we don’t plan on doing that anyway.

The summary of my visit was:

Abnormal Test Results:
– Hashimoto’s disease – positive for anti-peroxidase antibodies. TSH was 3.11 (she wants less than 2.0).
– NK CD 56+ elevated
– NK killing capacity elevated
– NK response to ivig insufficient
– Factor XIII gene was heterozygous mutated.
– HPA-1 gene was heterozygous mutated.
– MTHFR (C677T) gene was homozygous mutated.
  
Medications:
– Metanx 1/day
– Metformin ER 500mg/day
– Synthroid 25mcg/day
– Vitamin E 400 IU/day
– Vitamin D 1000 IU/day
 – Prednisone 10mg/day 4 weeks prior to FET cycle. Increase to 10mg 2x/day at positive beta.
 – Lovenox 40mg/day starting CD 6 of cycle, increase to 80mg/day at positive beta.
– Prometrium 200mg 2x/day during cycle, starting 48hrs before FET
– IVIG CD6-14, and then every 2-3 weeks
– Low carb diet, regular exercise
This is the first time my thyroid antibodies were positive. They were negative as recently as October. It’s also the highest TSH level I have had. Only a week or so earlier it was 1.75. I think I need to meet with an endocrinologist to see what this actually means. Beyond that her biggest changes are adding prednisone and doubling Lovenox. She strongly recommends IVIG and is checking to see if it’s covered by my insurance. For now, I am not planning to do her protocol. It seems all or nothing for her to predict success, and ‘all’ is too much for me at this time.

You Are Not Alone. #NIAW

naiw

This week is National Infertility Awareness Week, and the tag line is ‘You Are Not Alone’. This is an interesting topic to choose because in this journey it is very easy to be alone and to feel alone. I think it’s an important message, and it’s not coincidence that it came from Resolve. Resolve and my peer-led Resolve support group have been one of the only points of light in the darkness of the last few years.

After my miscarriage in 2013, I thought I knew the ropes about having a miscarriage. But then 2014 came along, and I had a missed miscarriage. (first response – A missed miscarriage is a thing? Who knew?). I started doing research about taking misoprostol and while I found some great blogs, I really wanted to talk to someone in real life that had done it. A little Google-action led me to Resolve. In one of the few positive twists of fate there was a group meeting near me only a few days later! I messaged the leader and went to my first meeting.

That meeting was a game-changer in my infertility journey. No one at the meeting had used misoprostol, but hearing all of these courageous women share their experiences and supporting each other was amazing. They were so supportive of me too – a total stranger sobbing in someone’s living room. A few even contacted me that weekend to see how the misoprostol went. Since that day, so many of these women have supported me at meetings, with texts or emails, and in person. Our group leader answered phone calls from me at all hours during 2015’s miscarriage, and honestly she was the only person I thought to call.

Participating in this group hasn’t brought me a baby. Maybe it never will. But it has brought me a network of the strongest and most determined women I will ever meet. It has also brought me support from people who know exactly how I feel – and the value of that can never be underestimated. My hope for this NIAW is that other women who are fighting this battle alone will reach out and seek support, possibly from a Resolve support group near them.

What Now?

yearbook

My life has been defined by infertility for as long as I was in high school. Or as long as I was an undergrad. These are terrifying but true statements. Those segments of my life seemed so endless and meaningful, and I suppose this one does too. So now that I have no plan, what’s next? I have a overwhelming feeling of anxiety not dissimilar from the one I remember from high school graduation. Moving on, transitioning in the world. I sometimes have flashes of hope when thinking about surrogacy or adoption – like, wow, someday I may actually have a baby. But then I start to think about the time, energy, and cost involved in getting there and my heart starts to race.

I have been trying to reflect on what was possibly gained from the last four years. I met the most amazing group of women in my Resolve support group (more on that later this week #NIAW). I made peace with not being able to conceive ‘the old-fashioned way’. I let go of control in during the heart-wrenching process of IVF – three times! I suppose that all of this was not for nothing, but it’s hard not to feel that way.

The next steps will be scary and overwhelming, but maybe they will also lead to the end of this journey. And for that I am hopeful.

1st Appointment – Dr. Kwak-Kim

I had my testing appointment with Dr. Kwak-Kim on April 14th. I was at the office for 4.5 hours. They started off with taking ~20 vials of blood. I had to fast the night before, so luckily I didn’t pass out. My friend who saw Dr. KK recommended bringing crackers for after the blood test, which was a great tip! After the blood work, I had an abdominal ultrasound and a transvaginal ultrasound. Together they lasted about an hour. They tracked blood flow to ovaries and uterus, and measured a lot of things. My lining was 2mm and I had a 10mm follicle, so probably a ways away from my next period. After that I met with Margaret, the nurse practitioner. She reviewed my family history and fertility history and then did a breast exam. She also recommended a thyroid ultrasound, since I have some indicators of PCOS and I guess they are linked.

I did the thyroid ultrasound right away at their office, and they found a couple of small cysts. (From Google, I think these are also called nodules). Finally I met with Dr. KK. She went over all the reasons I could keep having losses. These were general reasons – genetic, endocrine, structural, autoimmune – until I get my test results back. She said with PCOS I should be eating a low-carb diet with protein:carbs at least 1:1. She said Metformin will depend on my test results – all of the RE’s I have seen have decided against it. For my thyroid, she said we will monitor the nodules and then see what my blood tests say. She said that I had low blood flow to my uterus, especially for early in a cycle. She recommended 400iu vitamin E and baby aspirin daily, even when not cycling. Without the rest of the test results, she couldn’t be more specific with a plan.

Overall it was a pretty depressing appointment. Just like a laundry list of things that are wrong with me that could be contributing to the losses. That’s what I have gotten from every Dr. I’ve talked to. Hopefully with the full test results she can give me a better idea of what to do next. Until then, I am eating carbs and living my life as ‘normally’ as I can.

7th Beta.

My 7th beta was yesterday and it was negative. Also – I think, I hope – I have stopped bleeding/spotting. I guess that’s the official end of pregnancy #3. Moving on to next steps, Dr. Kwak-Kim had a cancellation so my 1st appointment was moved to next week(!). I think that’s a good thing, but I haven’t been able to get in touch with someone in billing to confirm my insurance coverage. If I don’t hear back on Monday I will have to cancel or postpone my appointment. It’s so frustrating, but I can’t run the risk of having to pay a ton of money out of pocket when we might be saving for surrogacy.

I’m still feeling very anxious about everything. I hope that Dr. KK can at least give us some answers.

Miscarriage Limbo & WTF.

I seem to be stuck in limbo. After passing the tissue two weeks ago on March 23rd, I didn’t have much bleeding. Just spotting for about 8 days. Then nothing and I thought it was over. But then on Friday, April 3rd I started bleeding again. Dr. Google says if 20 days have not passed, then it’s not a period, it’s still the miscarriage. So who knows. I am going back on Thursday, April 9th for a 7th beta. I guess that will tell us for sure if it’s down to zero or if there is still tissue lurking.

We also met with Dr. Kaplan again for the re-group (aka the WTF appointment). He cut to the chase and said that he has no answers about what keeps happening or why. Also, my genetic testing of the tissue was inconclusive. It came back as maternal tissue contamination, which means they could only find my cells. Totally bogus and it makes me wonder if I should have just had a D&C. His only recommendation is a hysteroscopy before our next transfer, but unfortunately he doesn’t do them, so I’d need to get on with my OB/GYN. Also unfortunately, I’m in the market for a new OB/GYN. I made an appointment with one for May 12th, so hopefully I like her and she can schedule a hysteroscopy for my next cycle – it has to be CD6-10.

Beyond that he said we can try again, adding in whatever protocol Dr. Kwak-Kim recommends, or we can use a surrogate. So there we are. It’s rough to hear a doctor tell you to consider a surrogate, even if you are already considering one in your mind. The cost of surrogacy is almost insurmountable unless you’re Jimmy Fallon, so I don’t know how that can be our next step. I am trying very very hard to wait until we meet with Dr. KK to make any decisions about the future, but being stuck without a plan or a timeline is so stressful for me.

6th Beta.

I miscarried naturally yesterday. I was at work, which was not awesome, but it’s still a relief. I don’t have to take the misoprostol again and I don’t need a D&C. I collected the tissue and took it to the Dr.’s office, so maybe that will tell us something. They also did another beta and it was 101. Seems to be dropping more quickly this time around, so hopefully my body is healing. I go back in two weeks for beta #7. I also go in next week to meet with the Dr. and see if he has any brilliant theories.

In the meantime, my primary Dr. (not my RE) ran tests for lead, mercury, and arsenic, which were all negative. Seemed unlikely, but worth a shot. She also tested my liver function, thyroid, and vitamin D – all normal. No closer to finding out the reason for these repeated disastrous cycles. For now my husband wants to just table this whole procreation experiment and try to get back to being a semi-happy couple. That’s probably not a bad idea, since we’ve both been pretty miserable for about three years. It’s hard to let go of this goal/dream, but it would be even harder if this made us split up. It’s especially hard for me to exist without a plan in place, but I am going to try.

5th Beta.

The loss was confirmed today with a 5th beta of 724. I am trying to come up with any possible reason for consistent losses at 5 weeks. Who knows? Maybe I’ll never know. I am trying to look ahead – maybe someone will want to be our surrogate. Maybe the reproductive immunologist will have a great idea. We have decided to meet with Dr. Kwak-Kim, since she is a pretty well known reproductive immunologist. I asked the nurse if this was a good idea. She said that Dr. Kaplan usually doesn’t buy in to all the reproductive immunology, but in my case it couldn’t hurt. Just what you want to hear – basically, you’re a lost cause. Having a pity party for myself now.

Declining Betas.

I wish I had better news about my cycle. After spotting/bleeding 8dp5dt, all the bleeding stopped. I had my first beta at 9dp5dt, and it was 297. Then 2nd beta at 13dp5dt was 1557. They were very happy with that doubling time and number. Third beta was at 16dp5dt or 5 weeks pregnant. It was 3121. This was a doubling time of ~72 hours, so slowing, but within their desired range. At 5w1d, my husband and I were out of town for the evening (only an hour away), just to try and enjoy some of the waiting until first ultrasound at 6w3d. At about 6pm, I started feeling sharp cramps. Thought it might be my stomach, so I went to the bathroom to see a gush of red blood. It soaked through my pants. Throughout the night I had more red bleeding with some clots.

I called the on-call Dr. at my RE who said, lie down, drink fluids, and come in Monday morning to check things out. Monday was 5w3d. The ultrasound showed 1 gestational sac with no sign of a bleed. The sac measured at 5w1d, so within range. Then my beta came back at 1900. The nurse told me to discontinue all my meds, as the pregnancy was non-viable. I asked for a repeat beta in two days, at 5w5d, just to be sure. That will be tomorrow. I am continuing my meds just in case. I’m not sure if they will want me to do a D&C, misoprostol again, or wait for natural miscarriage.

To say my husband and I are devastated is an understatement. These were genetically tested embryos. This loss is at the exact same time as both of my others, which were at ~5w3d and ~5w5d. My body is apparently consistent and efficient at killing off 5 week old embryos, even though this time I did intralipids and have been on Lovenox. We meet with the Dr. next week for our WTF appointment. I am not sure what he will advise. My husband and I have started talking about Plan C, D, and E, which include gestational surrogacy, adoption, and living child-free. Ideally, we would try a surrogate, since we have remaining PGS embryos. However, we are not celebrities, so without a friend of family member to volunteer, we’d need to borrow at least half of the required $100,000. The risk of borrowing $50,000 or more and spending all of our savings and potentially not ending up with a baby seems terrifying. Adoption is always on the table, but not as cheap and easy as well wishers make it seem. You should “just adopt” is a lot easier said than done.

For now I guess we wait, think, grieve, and try to heal.