Monday, December 1, 2014

LIT Treatment & PGD Testing on Embryos

We did our first LIT treatment at the Mark.ham Fert.ility Cen.tre in Tor.onto a couple of weeks ago and we are scheduled to head back there this coming weekend for our second treatment.

What is LIT?

It's Lympho.cyte Immuno.therapy. And it's quite painful. One doctor thinks this will help because I have low B and T cells that aren't protecting the embryo when it's in my body thereby letting the natural killer cells take over.

Here's the download on the treatment:

  • They take 18 vials of B's blood the morning of the procedure. He can't eat or drink anything but water before, and has to avoid fatty foods and dairy the night before.
  • I go in a few hours later and they inject the cells right under my skin so that my lymph nodes absorb it.
  • It's what I imagine bee stings feeling like though I've never been stung before so I don't know. All I know is that they do it EIGHT times - 4 in each arm. And that by the 6th one, I actually said 'f*ck' and then apologized to the nurse.
Other than that, pretty easy. Though, I'm not looking forward to it again that's for sure.

The only disappointing part is that I'm just not as hopeful that this will work for us. We talked with our doctor at R.M.A., who we knew didn't believe in this stuff, but he was pretty convincing as to why he didn't believe in it. 

We basically told him that we were throwing the kitchen sink at this and would he recommend anything else for us and the only thing he said we should consider but is optional is heparin. 

So, now we're trying to figure out if we should do that. I'm inclined to do it because I really want to leave no stone unturned but...

And the embryos!

We were THRILLED to get 2 genetically tested viable embryos... and found out they are both girls! In fact, all 4 that we had tested were girls!

And the intralipids? Those were recommended to us because I have slightly elevated natural killer cells but not by much. The R.M.A. doctor didn't think I needed it and thought it was ridiculous - says that with every IVF, we are given a form of intralipids... 

So, hopefully we'll be able to do a transfer in Jan or Feb, just need to figure out the right course of action that's next. 

Thursday, October 23, 2014

We (FINALLY!!!) Have a Diagnosis! And... Egg Retrieval #6

Two big things happened in the two months:

  1. I finally have a diagnosis - immunology factors including natural killer cells which is why we have had trouble getting and staying pregnant
  2. We moved to RMA in NJ for an egg retrieval and genetic testing because it seems like their lab may have a leg up on genetics.
Finding this out was incredible. I didn't know much about immunology and had asked our doctor in DC about it and he said he looked into it some but that nothing came up to make him concerned. We also asked our NJ doctor and he said the same thing.

I owe so much to one of my dearest support group friends. She kept bringing up immunology to me and I kept saying 'they've looked into it' but something wasn't sitting right with her... so she introduced me to someone she knew who had a similar story to mine. 

This person had 5 early on miscarriages (I've had 7) and finally got checked out for immunology and turns out she had a whole host of issues including natural killer cells and clotting. She got treated for this and now has a 6 month old.

She told me very few doctors really look into this stuff, so I went to her doctor (luckily in DC!) and within two weeks got results from our immunology bloodwork that shows:
  • My CD56CD16 is 18.3. Normal range is 7-16. These are the natural killer cells that basically attacks anything foreign like embryos. It's not too high but high enough.
  • My T cell is 9.6 and B cell 10.3. Normal range is 50-100. The way I understand this is that these are the suppressants to the natural killer cells. Because this is so low, the issue is mostly getting this much closer to/within normal range so that the killer cells are suppressed during a transfer. 
The great news is that my doctor thinks that by just elevating the suppressants, that should be enough for us to keep a pregnancy. 

Treatment for this:
  • Treatment for this is controversial. Part of it is not approved in the US by the FDA so we have to look elsewhere. Many people have gone to a doctor in Mexico which scared us a bit. Luckily, the Mark.ham Fertility Cen.tre near Toronto offers treatment called LIT (leuko.cyte infusion therapy) which includes 2 treatments that are 3 weeks apart and would be me getting an infusion of my husband's blood as a way for my body to recognize and be ok with foreign material in my body.
  • The next treatment would usually include IVIg which is approved in the US and is an infusion of pooled blood donors. The cost of this is a lot. Because my natural killer cell count isn't too high, my doctor is recommending something less costly called intralipid therapy.
I'm still looking into a lot of this and don't fully understand it all.

If any of you have any knowledge, advice, etc, I'd love to hear it!

Retrieval #6:
In the meantime, we've moved to a clinic in NJ (RMA) to do a retrieval and genetic testing on our embryos. It seems like their genetic testing may be a bit better than what we've been using through our DC clinic, so we wanted to give this a try.

Retrieval is scheduled for tomorrow!

Wish us luck! :)

Monday, September 22, 2014

Summer Recap & Next Steps Researching Immunology Issues

The summer was amazing!

Last night, on the last day of summer, B and I recapped our summer highlights. We love playing the highlights game.

We had lots of fun weekends. It was my summer of saying yes, and it was easy to do while we were on a break from anything fertility related. I had weekends away, we had some together, we went to baseball games (hello Washing.ton Nat.ionals National League East Champs!), and it all culminated in a trip we planned in May for the last week of August to Ban.ff and Jas.per National Parks in Alberta, Canada!

I've been wanting to go to Ban.ff for so, so long and it was like a dream come true. It exceeded my already high expectations of the place! It was like being overwhelmed by beauty all day long. I'll leave some pics at the end of this post.

In terms of next steps, we've pulled out of our DC clinic that gave us less than a 10% chance and wanted us to move to donor egg. We're in process of moving to RM.A in NJ. They do genetic testing of embryos in their clinic and are one of the best in the country.

In the meantime, though, I'm exploring whether my issue is related to immunology stuff. I met with someone through my support group who had had several losses similar to mine and it turned out that she had these natural killer antibodies and was successful having her baby with IVIG transfusions. There seems to be a lot of controversy about this and I'm not sure my doctors want to look into it, which is why I have another consult with someone in DC who specializes in repeat pregnancy loss and who uncovered this issue with this acquaintance.

I want to make sure we leave no stoned unturned in this process. RMA is not inexpensive and we need to figure out what the problem is. I can't believe that for the last almost 7 years that it's been egg quality when I started ttc'ing when I was 32!

Anyway, here's some peace from my summer...

On the way to Banff from Calgary:

View of Banff Town with Tunnel Mountain in the middle:

Lake Louise in Banff National Park:

Moraine Lake:

Moraine Lake:

Moraine Lake:

More of beautiful Moraine Lake (and yes, we did go canoeing!):

Peyto Lake on the way to Jasper National Park:

Honeymoon Lake close to Jasper:

Waterfall near Jasper:

View of Spirit Island on Maligne Lake in Jasper National Park;

Maligne Canyon:

Maligne Canyon:

Leaving Jasper:

Double rainbow back at Banff, a nice omen to end the trip & summer!

Saturday, August 23, 2014

Summer Update

I can't believe I haven't posted all summer. That may be because I've been taking this summer for lots of summer fun, and it's been very helpful even though underneath it all, there's still a lot of sadness.

When I'm doing fun things or looking forward to more fun things, it doesn't sting as much though. It doesn't linger as long.

So, let's see what have I been up to:

  • A long awaited weekend away with my best friend, just the two of us. We got a cabin at a lake in western Maryland and feltl like we were really away from it all. We had many great heart to hearts. It's pained me that our relationship has changed these last few years. She and I were on a course to start trying to conceive together. Her two kids are now 5 1/2 and 3 1/2, and that can be very hard for me. No matter how much I love her and her kids, it's a continual reminder of where I'm not, and also what we are not sharing together - parenting. She's also an extrovert and while I've been struggling with depression these last few years, it's been hard to see her be the way I want to be - full of energy, when mostly what I feel is anti-social. But it was good to talk about it all. She's always there for me and has made such an effort to reach out when I haven't. I love her so much and appreciate her friendship. I told her it sucks for me that we're not in the same place and she just reassured me that it's just a season and that this won't affect our friendship.
  • A weekend in the mountains with my cousins and little cousins. My two closest women cousins who are sisters met up for a weekend getaway. One brought her two girls, the other is single. And we just had a great time "just being". Talking about serious stuff but also just laughing. We hiked, we went tubing. It was the perfect combination of spending quality time with family and enjoying summer's nature.
  • An extra long weekend away with good friends to the Thousand Islands area in upstate NY/Canada. These friends of ours who have two boys, 6 and 8, who love my husband, invited us up to their cabin last year and we didn't go. When they invited us again this summer, I said, we've got to take them up on it. And I'm so glad we did. It was so much fun! Beautiful part of both countries, again good quality time, beautiful nature, swimming in the river, stand up paddling (first time for us!), boating, hiking. All around awesome!
  • A weekend sleepover with our nephews. We try to do something special with them once a year and have them sleepover at our house. This summer, we took them to a local water park and to a Nats baseball game. Loads of fun to have these little guys, 10 and 6, with us for a whole weekend!
So, I'm glad I've taken to saying more 'yes' this summer and enjoying my relationships with meaningful people in my life and enjoying all that summer has to offer, especially in the outdoors.

And we're off this coming Monday for our big summer vacation to the Canadian Rockies - can't wait to see Lake Louise!!

Wednesday, May 21, 2014

Taking a Break

I need a break, potentially a long break and potentially a forever break.

It's the first time I have felt this strongly about potentially not having kids. In fact, my normal answer to the question "do you have kids" is "no, not yet". Yesterday, for the first time, I just said "no".

Saying "no" without the "not yet" was interesting. The person (who had 6 kids in a blended family) said "good for you". It was interesting because it sounded like it had been my choice. Which it kinda sorta might be, though not entirely by choice.

But I know I may also be having an impulse reaction. The truth is that I'm worn out - physically and emotionally.

I guess (right now), I'm not longing for a child, a baby, the way I used to.

We have a consult with our doctor next month but he's been leading us to donor egg. And I'm 99% sure that is what he is going to say to us. We'll get a second opinion but I'm back to my truth - I'm worn out.

This last cycle took us 8 months. I'm not confident transferring just one embryo anymore and it took us that long to get 2 genetically tested (PGD) embryos. I'm 39. I know I have potentially a couple more years at this and more if we would consider donor but I have also now done 10 transfers and been pregnant a total of 7 times never making it to week 6. I'm not confident that this can work for us. And I don't know that I have the energy even if someone told me it might. 'Might' is not enough anymore for me.

And I can't quite wrap my mind around donor egg. I know friends who have/are doing it and I respect their decision. I just don't know that it's for me. I need to research it more, I guess...

And while years ago, I kept pushing for adoption over IVF, I don't have the heart for it right now. I'm worn out.

I've spent the last couple/few years trying to focus on the positive aspects of not having a child/children while we go through the grueling process of trying to have one/some and I've finally gotten to the point where I truly believe those positives now. After 6 1/2 years, I'm not sure that something is missing from our lives anymore...

I do worry about how this decision may impact our future. But I also know that we have wonderful nieces and nephews and we are so fortunate to be godparents to several children between us. (Surely someone will take care of us in old age, right?!?) :)

Seriously, though, we have been spending more time with those children and I like that. I like being able to be the fun aunt, the special aunt, and I want to develop that well into the future. So maybe we can have special/different/meaningful relationships with children without having them be our 'own'...

But I know I just need time. Whatever decision we make going forward will have a big impact and can't be taken lightly. I said all along about this past cycle that I needed at least the summer off if it didn't work and potentially 6 months to really process all of this. The (most likely) end to our combined biological genes is a loss. A big one. One I'm worn out from and one I need to take a break from.

Here's to some fun summer plans (I'm looking at Ban.ff Nat'l Park, Cana.da!!), hopefully another 1/2 marathon and potentially a fun fall trip to Spain with some college friends!

Taking a break will be good. And necessary.

Friday, May 2, 2014

It Worked... and Then It Didn't. Transfer #10 Failed.

I was pregnant! And I had symptoms about 3-4 days after transfer. It was so exciting.

I didn't feel them the entire time but often enough (strong sense of smell is the main symptom that stands out to me). And it was consistent enough.

About 5 days before the pregnancy test, I took a home test. I just had to. It was a digital one and I hadn't done of those before. There was a plus sign! I was so excited.

I kept thinking maybe all of our patience finally worked. Maybe we needed to do 2 cycles to get 2 genetically tested embryos and then wait to do a frozen embryo transfer. Maybe all of that work and waiting was all worth it!

My initial beta was 136. I was disappointed. We transferred two embryos and that didn't sound like a high number to me. I really, really wanted twins. I wanted to be done with creating our family.

Second beta two days later was 135. I was devastated. They said, let's be cautiously optimistic. They said this sometimes happens where the pregnancy stalls and then picks back up.

I knew better. We've been through this so, so many times. This is my 7th pregnancy where this has happened. Yes - SEVENTH. I cried and cried that night.

Two days later I go in and the beta is 79.5. I cried and cried that night too.

Man, we really thought it would be different this time. I'm crushed. I don't know what's next. I don't know if I can keep doing this. I don't know that our doctors will want us to.

At our current clinic, we have a consult set up a month from now. We're in a shared risk program so we'll get that money back and I think my doctor will recommend donor egg.

We'll get another consult again at RMA in NJ and see what they say.

But... this cycle took 8 months. 8 months to get 2 embryos. I don't know that I can go through all of that again, for what seems like such little chances. This was our 10th transfer. I've been pregnant 7 times and almost every time the same thing happens - I can't sustain a pregnancy for longer than 4-5 weeks. Ugh.

I don't know what to think about donor and I don't know what to think about adoption. I'm just so numb and dazed and down and confused.

I decided (while my husband is away this weekend which was pre-planned 6 months ago) to give myself a little pick me up and I'm going to NYC for the weekend which always makes me smile, so I'm looking forward to that. And we've got tons of fun things planned.

But as for family building... I don't know. I'm pretty sure we're done with this. And it's hard to take that our dream likely won't come true. That we've spent 6 1/2 years on this dream, 7 pregnancies, 13 fertility procedures, 2 related surgeries. All of that... for nothing.

I know we can't always get what we want. It's just hard when you've tried everything possible and you still want it so badly.

I don't know what's next but I know I need to grieve.

Thursday, April 10, 2014

Transfer #10

I couldn't believe when I was actually counting this out that it was really #10. But we've been through a lot so it doesn't surprise me either!

I know I've been quite of late. I went through a few bad weeks after our genetic testing results but by mid-March, I was doing better and getting ready for our two frozen embryos & transfer - one from this past cycle in Feb and one from our Oct cycle.

Transfer #10 happened yesterday - Wed, April 9!

This is the best chance we've got, we think. Both genetically tested normal embryos. Two of them. And doing it via frozen cycle, so we feel that the time is optimal. (There were some questions around our last fresh cycle in June as to whether with genetic testing we had missed the window by transferring on Day 6...). So here we are 9 months later at the next transfer opportunity.

I've been feeling at peace for the most part but I know I can say that now that I'm in the hopeful phase. I do say that we're being cautiously optimistic but will also not be surprised if this doesn't work. And if it doesn't, we'll have R.M.A. in NJ take a look at our records again and see if they feel they could do anything differently for us. But the facts are the facts - out of the last two cycles, we've only gotten one viable embryo. We know one is all is takes but I don't know that I'd want to transfer just one embryo and I don't know that I can go through two more retrievals... I'm getting ahead of myself.

Here's to a little hopefulness. And I've got a lot planned in the coming weeks & months to keep my mind distracted!

Thursday, February 27, 2014

Relief & Disappointment from Genetic Testing

I got my results back from PGD genetic testing and I'm both relieved and disappointed.

The good news: we have 1 normal embryo.
The bad news: there was only one out of 8 embryos tested.

The cycle seemed to have started out well and was progressing very well. We ended up with:
  • 22 eggs retrieved
  • 20 mature
  • 17 were fertilized (with ICSI, which is what they recommend when doing PGD testing)
  • 15 made it to Day 5
  • 8 were biopsied for testing - this is where the numbers started declining
  • 1 made it
We have one frozen already from a cycle in October that had similar results (1 normal out of 5 biopsied & tested).

Our plan: to transfer the two that we have in the hopes that we either extremely fortunately get twins or at least have a better chance of one being the outcome. Our FET is scheduled for April 9.

I have to say, though, that as much as I have glimmers of hopefulness, the disappointment and the weariness is overshadowing a lot of that.

I'm having a hard time with thinking that this may actually be the thing that actually works. I'm also concerned that I'm also being greedy in that I want a FAMILY not just 1 CHILD. Is that terrible? And I feel like even if this ONE does work, then how do we get/muster up the energy to have a second child?? Which is why, at this point, I just so badly want twins...

I'll be 39 in March. If this works, I'll be 40 some before we can try again. It's just starting to feel like the light is dimming on all of this. We're going into our 7th year of ttc. I've barely got any energy left to even have these kids and raise them let alone keep trying to have them! Sometimes just unloading the dishwasher can feel like such an extra chore.

Ok... I'm wandering a bit here. This stuff just zaps the energy right out of you though.

I'm still so grateful for It's been so, so helpful.

B and I are in such a great place right now that I can't help but wonder if we just throw in the towel after this and live child-free. If we can't even deal with emptying the dishwasher, how are we supposed to add children to the mix?

Everyone always says that adding children to a couple adds a lot of stress on a marriage and frankly, I'm concerned about that. We have a great life right now with minimal responsibility. As you can tell, we both don't like doing household chores (and we have hired a cleaning service to help with that!).

But I just have all these things swirling in my head about:
  • What if this doesn't work? Do we go to the "ultra-specialist" in NJ? Will they likely say they can't do anything further for us? Even if they did, do we have the energy for it? Do we want to dump more money into this?
  • Donor egg is not something I'm very comfortable with. I think my husband would want me to be since genes matter to him (he lost his father when he was young so the genetic connection is important to him). I can't get around the idea of his genes with someone else's... The only person I might want is his brother's wife but I don't think she would do that for us...
  • Do we have the energy for adoption????
  • Can we/should we live childless? What would be the implications of missing out on the experience of raising children and experiencing having family when we're older and possibly even grandchildren?? Would there be less stress on our marriage/would we be happier without children? What if I'm "all alone" when we're much older? How would that feel?
Too many questions... time to go back to the therapist!!! :)

Thursday, February 13, 2014

22 eggs for Attempt #6!

We had such a great retrieval yesterday - technically retrieval #5 and attempt #6, though we've only done 4 retrievals and 3 IVFs, so I'm not even sure what to keep calling our attempts...

But the good news is good news. Of our 22 eggs, 17 were mature and 15 fertilized (via ICSI since we're doing PGD genetic testing on embryos now).

We'll know next Tues how many made it do Day 5 and then it will be approx 2 weeks for the PGD testing and in the meantime, I will wait for my period and start to prep for an FET.

We have one frozen embryo right now and hoping to get one more to transfer two.

So, I'm hopeful and that's nice going into Valentine's Day...

Tuesday, January 28, 2014

IVF Attempt #6? / All Kinds of Feelings Going On

I don't even know how to call my cycles anymore! But regardless, I think this is a somewhat #6 IVF (sort of) attempt coming up... and I'm hopeful again.

My situation is so complicated that I even get confused explaining it. In our IVF/retrieval #4, we had 1 genetically tested normal embryo that we decided to freeze. Attempt #5 did not work (leading follicle).

I have now been on birth control pills for almost 3 weeks and go in this Thursday for the pre-IVF bloodwork and ultrasound, and will hopefully get started on stims on Sun, Feb 2.

It's still a long haul for us. If we get to retrieval and have a decent amount of embryos, we'll do genetic testing and freeze what we have. Then will go into a frozen cycle as soon as possible, likely in April.

I'm so, so eager for this to work. There are so many variables, though, and I'm just trying to keep it all together and stay calm. I'm part of a "Crossroads" support group now who have all kinds of issues and so we're used to not getting our way!

It does sometimes seem like I'm in this never-never land and will never get out. It feels like it's been an eternal limbo land while most others have gone on to have at least their second and if not third child/pregnancies.

January hit me pretty hard. It's been 6 years of us trying to conceive. SIX years. Can you even imagine that?

It's been a long road and it will continue to be. (I so wish I could just do a normal IVF and be over with this by the end of this month!). I'm not sure why I'm being faced with this and sometimes it feels like more than I can bare.

I'm also facing the loss of my job and that feels hard as well. Just the uncertainty of it all. This is a job I took a year ago and have been loving but the company's financial outlook isn't great so I think there will be lay-offs in a couple of weeks that will likely include me.

Glad I have counseling tomorrow! :)

It's been a bit tough, I'll admit. But I've been keeping a gratitude journal and that reminds me each day that there is joy. And that helps.

I keep trying to plan what I can of things that I know I'll look forward to or will make me happy like going to a comedy show or a concert. I have a couple of those coming up in the next month.

It's all one day at a time, one breath at a time. Oh yeah, and I've been continuing my yoga too which helps my outlook and waistline! Seriously, it's a great stress relief.

Lots going on.