I am still here, but I am not sure where I belong

susykat77 · March 2016

Hey ladies,

I have been absent for the past 2 weeks due to some medical issues. I have been commenting on posts sporadically but I am not quite sure where I belong... I am going to post my most recent blog updates here as I don't have the energy to type it all out again... Half of my blog was missing so I just posted a part two to my blog. Anyway here it is...

Where do I start?

Last week I had been contact with the clinic discussing the various scenarios regarding our 2 frozen embryos and the doctor was having the results rushed. We were to call on Tuesday (March 1) to find out the fate of our little snowflakes. This was good news, as I would know before flying to Prague if we would have anything to transfer. This would also determine if the clinic would be searching for another donor - we were guaranteed 2 normal embryos.

Now to back up a bit, over the past month I have been having this pain in my abdomen. Sometimes it was just a little uncomfortable, once I considered going to the hospital but mostly it was this nagging pain that I chocked up to stress -- maybe an ulcer?

On Saturday, I had some pain after lunch but nothing to severe. Later that day I had a glass of red wine while making chicken pot pie with Jason's sister Kim -- while sitting down to eat I was hit with a hot flash and felt ill. At first I thought it was a side effect of the medications I was on to prepare for my frozen transfer in March but then the same pain in my abdomen returned and it was so severe I couldn't find a way to get comfortable. I kept moving around from the bathroom to the bedroom to the living room, trying to get comfortable. Jason brought me a cold wash cloth but nothing seemed to help. Finally I told Jason that we needed to go to the hospital. On my way out to the garage, I threw up and thought I sure hope that I am not going to the hospital for something silly like the flu. Once we get there the waiting game begins. The pain had subsided and I considered in my mind just going home. I think we waited about 1.5 hours until we were taken back to a room. They hooked me up to an IV after taking some blood. I refused pain meds as the pain was nothing like it was when I cam in and chatted with the doc about the options - possibly my gallbladder. After an hour or so, he comes back in and says -- well it's not your gallbladder, you have pancreatitis. What??!? My labs showed that my lipase was just under 7000 and the value was supposed to be less than 400. Damn. The doc said that I could finally have some water and if I tolerated that without pain, then I could go home.

Long story short, I was admitted into the hospital and stayed for 3 days. I was on a clear liquid diet for the whole time I was admitted until I wanted to go home then I had to eat real food. After eating some very bland "real food" I was sent home to recover. I was out on sick leave for the whole week as I was still experiencing pain and totally depleted from eating next to nothing. I am still in some pain now but I am back at work.

Now back to the embryo's...

While in the hospital, I received two bits of news - first was that only one of our little snowflakes was normal. They guaranteed us two so they are on the hunt for another donor. In addition, my IVF doc instructed me to stop all of my medications and to cancel my trip to Prague due to the pancreatitis. I am so sad that I am not on a flight right now headed to Prague... I was supposed to leave today. Boo!!!

Then to make matters worse, my OB, who ran some tests for my RE in Prague called to tell me that I have a positive antiphospholipid antibody (APA) which is an autoimmune test and that she was going to refer me to the high-risk OB so they can help me through this process. What she said it basically means is that it can be a challenge for those with a positive APA to carry a pregnancy to full term and that I would need to be on injectable blood thinners for my entire pregnancy. She said she has one patient that has only ever made it to 20 weeks - with no live births and another who with the help of blood thinners just gave birth. So, yay another something to complicate this whole mess. I really am sick of hearing myself complain but WHAT THE FUCK. I am ready for a break. Seriously.

I did talk to my RE in Prague today and he assured me that we can do a natural cycle FET (so no estrogen or lupron) but that I would need to be in Prague from around ~day 7 of my cycle until day ~25 of my cycle. That is almost 3 weeks and I had just enough sick leave to cover the 2 weeks I was to be gone for this trip. Hopefully my work is ok with me taking 3 weeks of leave and about 2 weeks of it will have to be without pay. The reason that I want to do a no estrogen cycle is that estrogen can cause pancreatitis however I do not think that was the cause as I hadn't been on any estrogen for months when the pain appeared and I had only started it the day before I had the severe pancreatitis attack. In addition, he wants to transfer our one genetically normal embryo as well as an untested embryo from the new donor. It is kind of crazy to think that we could have two children with different biological mothers. Weird.

So now I have to wait for them to find a donor and I am not sure how long that will take... ugh so frustrating!! I am so ready to be a mother but there is nothing I can do except to try to get my body ready -- On the agenda is more yoga, starting a meditation practice and to try and be in the moment.

Thank you if you made it all the way though this post... I am really feeling down. I am not sure how to best participate in the group as I am just in no mans land, waiting. I am holding on hope the the fact that we do have one frostie out there waiting for us.

BrightenMySky · March 2016

I am sorry for all that you are going through. Sometimes there are not many words, it just sucks. Hugs.

cmm012 · March 2016

I'm sorry you have been dealing with so much. Hopefully your pancreatitis will resolve itself without further issues. I can certainly understand being disappointed about having to delay your transfer. When we've been trying so long, every delay seems like a major setback. I have a genetic blood clotting issue, so I am actually on daily blood thinners while going through my treatment due to the hormones. I have a hematologist who I see every month. The injections are doable, and they will certainly help you sustain a pregnancy. I know you are probably overwhelmed with doctors, but you might want to seek out a rheumatologist or hematologist if you can. Even a consult might be helpful. I'm cheering for you.

Rachd110 · March 2016

I am so sorry for what you going through. I know there is nothing I can say that will make you feel better. I hope your pancreatitis is gone and never returns!

I know someone who also has autoimmune issues. Over the course of three years, she went through 4 failed ivfs until she finally saw a reproductive hematologist who did an intensive work up on her. Her fifth transfer ended up being successful with weekly IV transfusions for the entire nine months. I believe she had to do the PIO shot for 6-7 months. She just gave birth to a healthy baby boy a couple weeks ago.

Sharing her story to hopefully give you some hope that there is light at the end of this tunnel. We go through so much to have our dream of being a mother come true. I believe that our struggles will only make us better parents.

KidShrink · March 2016

Ugh, so sorry you have to be going through all this now after everything you've already been through...Thinking of you and hoping for the best!

2015dee · March 2016

Oh my goodness. What a rough, terrible go of things lately. I am so sorry.

I wanted to pop in and encourage you to consult with the high-risk OB and a hematologist. My mom has APS and has 5 children. She didn't know about it and didn't have any problems because of the APS until later on. I think it would be reasonable for you to be on Lovenox from the time of transfer throughout your pregnancy. Many issues with APS during pregnancy are due to blood clotting, I believe. I am on Lovenox because of a history of blood clotting. It's not bad. I'll be looking around for an update for you and keeping you in my thoughts!

bbkidz · March 2016

I am so sorry for you! Praying that things work out very soon!

tvh1982 · March 2016

I'm so sorry to read about all the setbacks, as you haven't already enough to stress about.

Don't feel like you don't belong anywhere on this forum, you are more then welcome here even though it is not a board I wish any off us has to be.

Waiting is horrible, and waiting to find out what the next steps are is even more dreadful. But keep going.
You have already one healthy snowflake which is waiting for meeting you, and a new embryo will be there soon to join.
So as you mentioned, keep holding on to that thought.

Sending you lots of GL, babydust and warm thoughts.

2legbaby · March 2016

I don't understand why it is that so many of the amazing women who have been on this board have sooooo many things thrown at them. I am so frustrated/sad/mad for you, but I admire that you are so strong and taking care of yourself @susykat77 ! My therapist has told us (DH and I) that going through these struggles will prepare us for when we are all finally parents and have to deal with the struggles that may arise....that we will be better prepared than most parents to deal with the ups and downs with life as we are learning skills...just in a very hard way. Sending you good wishes to make your way back to your little snowflake soon!

mtpbadger · March 2016

So sorry to hear everything you have been going through! I think I remember you saying you work for the Federal Government? If so, look into advanced sick/annual leave. You should be able to take any leave you will accrue for the remainder of the year in advance - I work for the VA and know this is an option in my office. Or ask HR about leave donation. A lot of people that are in the use or lose situation (which must be so nice! I don't think I will ever be able to accrue that much leave) will donate to those that need it.

susykat77 · March 2016

@brightenmysky You are so right. It does just suck!! Thank you for your support. I am so sorry for your loss. Big hugs to you.

@cmm012 Thank you for the recommendation for the Rheumatologist, my doc in the hospital referred me to a rheumatologist as the pancreatitis "might" have been autoimmune related. I will look into seeing a hematologist for sure, I hadn't thought about that. Thank you!! I hope you get your BFP this cycle!

@Rachd110 Thank you so much for sharing your friends story. It does give me hope. Do you know is a reproductive hematologist different than a reproductive endocrinologist? I did a search for Denver, CO (closest big city at 4 hrs away) and I wasn't able to find a reproductive hematologist. Thank you so much for your support. You're POAS soon, right? FX for you!!

@Kidshrink Thank you so much for your kind words. You are nearing the end... how are you feeling?! I LOVE the pic of you in your nursery. So adorable.

@2015dee Thank you for sharing about your mom and your issues with blood clotting. I really hope that being on Lovenox does the trick. I was on it the only time I have ever had a BFP but I also had a MMC but I am hoping that was just because of my old eggs and that with the donor eggs I will be able to carry to full term. Thank you for your support. How are you feeling these days? You are due right around my birthday... Libras are awesome people (and slightly vain )

@bbkidz Thank you so much for the support.

@Tvh1982 Thank you for your support. I am trying to hold onto that one thread of hope in my one little frostie. Also, your jet setting FET gives me hope about flying halfway around the world after my FET. Big hugs to you. I was so excited to read about your beta!!

@2legbaby I had a ladies night last night and one of my dear friends said the same thing - that all these struggle will prepare me for motherhood... I sure hope so!! I just started seeing a therapist again for all this infertility nonsense. It is amazing how just one session can really make a difference. I love having "homework" and it really helps me get through my sorrow. Thank you for your support. Where are you in your donor egg process?

@mtpbadger I work for the VA as well and I too cannot imagine having so much use or lose leave that I would need to donate but there are people out there that do! You are right I should see if I can either advance my SL or go on the VLTP program. Thank you for your support and for the reminder about the awesome benefits of working for the Federal government. I can't remember, are you scheduled for an IVF cycle in April or May?

tvh1982 · March 2016

@susykat77: yes flying around the world after FET is not a problem.
Just plan it that you don't have to rush to get connections

mtpbadger · March 2016

That's awesome you work for the VA! I've been with them just over 3 years now and even though my supervisor is not the best and I haven't told them about anything, I haven't had any issues taking time off for all my appointments.

Right now IVF is on hold but I'm hoping I'll be able to get going again in May. Had a hysteroscopy which showed possible septum or bicornuate uterus so have an MRI on Saturday to determine what exactly is going on and then a follow up with my obgyn next Wednesday to review the results. If it's a bicornuate he doesn't see any issues referring me back to my RE to get going with IVF but he suspects it's a septum (which could explain the two CPs/implantation issues) which would require another hysteroscopy to remove it and then a month to heal before IVF can start.

Hang on there! I know it's tough to have all these delays but I keep telling myself I'd rather have my body functioning as well as possible to give IVF the best chance, even if it means waiting another few months. Some days that is easier said than done though!

cmm012 · March 2016

susykat77 I don't know if there are reproductive hematologists. You might need to see a regular hematologist. Mine does not specialize in pregnancy, but is well equipped to work with pregnant (or TTC) patients. Hope this helps.

Rachd110 · March 2016

@susykat77 I am sorry, I misspoke. She saw a reproductive immunologist along with her reproductive endocrinologist. I'm POAS on Saturday. I'm so nervous!

KidShrink · March 2016

@susykat77 : thanks! The time has flown by...can't believe I'm already over 32 weeks along. I still have days where I can't believe I managed to get pregnant, and I'm having a hard time believing how much our life is about to change. IF does leave scars...and I do believe it teaches us a lot. But really, there's other less painful ways to learn, and I wish none of us had to go through such heartache. I'll have my FX your health comes back to normal soon and you can go meet your little frosties ASAP.

oxinfree · March 2016

Hey @susykat77 - ugh... so I had read through your blog, so was happy to hear the end to the story here. Well, perhaps happy isn't the right word. I'm very sad for you, and really hope your story finds a happily ever after sooner rather than later. It breaks my heart when one of us experiences a setback like you are. It just feels so unfair after all the torture and emotional turmoil that we experience, then to get essentially dragged along the road even further, ugh. I hate it. I know you hate it. We all bloody hate it!!!! Maybe with this new info you'll find success. One of my friends who went through IVF before me, did one failed IVF before they put her on blood thinners. She was successful that round and carried to full term. Granted, I don't remember her exact diagnosis, and whether it was related to apa.... so take that with a grain of salt, but hopefully with a dash of hope mixed in. I'm sending you all the loving positive vibes I can muster. Big big BIG hugs to you! xx

susykat77 · March 2016

@oxinfree Thank you so much for your support. I am so excited for you and can't wait for your next cycle!!

2legbaby · March 2016

@susykat77 we are *hopefully* getting closer to getting started with our DE process. As fortune would have it, a friend of a friend (someone who I had met at a girls night once) went through IVF for MFI 2 years ago. She had 12 eggs frozen and had wanted to donate them now that her family is complete...Friend who needs eggs meet friend who has eggs! BTW she is also tall, blonde and green eyes (same here!). Of course....nothing can be easy...at first her clinic was all " Oh great lets do this" then when we said we were going to transfer the eggs to my RE they were "no you can't transfer them to the other clinic or use them at all as they are not fda approved" Apparently the embyrologists at my clinic used to work at her clinic and the relationship was referred to as "the Hatfields and McCoys" so our eggs were being held ransom due to an IF clinic feud...really? the clinics that are supposed to help you have a baby?....arghhh! I was more heart broken than my second failed IVF because it just felt like this was the baby I was supposed to have, the donor is awesome, the situation seemed like fate....we had to call the FDA and they said since the donation is a known donation our donor could get FDA tested now and as long as we signed consents waiving the risks there is no reason we can't use them...the eggs are *hopefully* going to be transferred or may have already been....we thought we may have to get a lawyer to go after them

What doesn't kill us makes us stronger!

stranzm · March 2016

@susykat77 - I've been wondering about your status. I'm not 'happy' with the message, but appreciate you sharing. I have no good words to share other than you are in my thoughts and prayers. I'm glad you are seeing someone, and I hope you get that miracle baby soon. I think the one good thing about the journey is how much we appreciate the dream when achieved. Best of luck!!

Neikoda · March 2016

**Lurking from TTGP/TW loss mentioned**

susykat77 I'm sorry that you are going through so much all at once. It's frustrating and overwhelming with a single diagnosis, let alone multiple. I normally don't post here since I'm just starting my first Clomid cycle, but I wanted to respond since you did receive a diagnosis on the antiphosolipid antibodies. Having recently been diagnosed with APS myself, I know there isn't a lot of good information out there. Mine was discovered after 2 recurrent losses with no live births. I'm on an aspirin regiment while TTC and will most likely move to heparin injections during my next PG as well. I just wanted to reach out because I was absolutely terrified when I was given my diagnosis and nobody could answer my questions. It does make any pregnancy high risk and there are some precautions that you have to take, but there are plenty of women who were able to have beautiful full term babies while on medication. I just wanted to wish you the best of luck in the future and please feel free to reach out if you have any concerns.

susykat77 · March 2016

@2legbaby How crazy about your eggs being held for ransom!! I sure hope you get them soon!! Hang in there!!

@stranzm Thank you for your support. I know that looking back that all this heartache will be worth it but it is sure hard going through it.

@nwegman Thank you so much for lurking and posting! I would love to know what other precautions you have to take during pregnancy... I have yet to talk to a doc about it just yet as I am still waiting for my appt. How much aspirin are you on? I believe my doc will start me on heparin/lovonox injection on CD6 as well as prednisone.

In other news... I also just found out that I also I have a MTHFR mutation on one strand. GAH!!!

2015dee · March 2016

Hey Susykat...the mthfr mutation is really common. I think about 40-50% of people have one copy (I do). You should be covered with the Lovenox. I also take extra folate (NOT folic acid) as a precaution. I think it's actually good that these things are now being found because they can be treated!

oxinfree · March 2016

@susykat77 - I have that same MTHFR (or as I like to nickname it, MoTHerFuckeR haha) on both... so my likelihood is really really high. I'm on Metanx as a folic acid / B6 B12 supplement. Maybe ask your doc what they recommend though as they gave me 3 options...

How you doing otherwise?

2legbaby · March 2016

Hey @susykat77 ! Just wanted to check in and see how you were holding up?

susykat77 · March 2016

@oxinfree and @2legbaby I thought my prenatal had the correct form but I just discovered that it does not! Ugh! I too call it the MoTHerFuckeR!!! Haha! As for how I am holding up... I would say I am at a pretty low point. DH and I got into a huge fight this weekend and I just feel so depleted/drained/discouraged/sad. I know that he is stressed out too but he said some very hurtful things and I just don't have the energy to bounce back from it yet. He is usually so supportive but this fight was a bad one.

I also have not heard anything on the donor front. I sent another email yesterday and they responded saying that they are still searching but that they would hope to have an update today... we'll see.

I have appointments coming up with an immunologist, maternal fetal medicine and a rheumatologist. I also have feelers out to two separate reproductive immunologist, one at Alan E Beers clinic https://www.repro-med.net/and one at Dr. KK's practice https://www.rfuhs.com/Health-Providers/KwakKim-Joanne.aspx The former website has amazing information on this topic. It is worth checking out for sure. Thanks for checking on me ladies. Big (creepy internet) hugs to you both.

tvh1982 · March 2016

Keep going strong @susykat77.
and remember if you need to hit the 'pause button' do so.
Hope you and your hubby have made up again.
Thinkinh of you. Big 'creepy' internet hug back.

oxinfree · March 2016

@susykat77 - I just wanted to tell you, you're not alone in the "big fight" department. Since DH lost his job, things have been even more stressful than usual. All I needed was his support and we had the biggest blowout we've ever had in our 10 years together. It scared me down to my core. I'm still recovering from it myself, and have heeled enough from it that I feel ready to tackle IVF, but sometimes they forget just how much we go through. I don't discount their experiences, as those too are very valid, but it is still a removed experience. We are living it every minute of every day. Anyways. Just wanted you to know that someone else going through all that we are going through, is also dealing with the relationship struggles that can sometimes come along with it all. Big big hugs right back at you. I look forward to you getting an update on donors soon!!!

stranzm · March 2016

@susykat77 - Aw. Thanks for the update, and I'm sorry things aren't looking better right now. I'm really rooting for you in your journey. As for the fight, I get it. I can't say that I've had a similar one, but the whole process isn't easy on a marriage. I once had a friend make the statement, "I bet going through all the infertility stuff brought you closer". I said a big no. The infertility process of finding out what is wrong, etc. was challenging emotionally. I like to say it was a lonely experience. I have an awesome husband, but it was still a lonely experience. I don't think anyone can understand the feeling of getting AF each month you are trying, making sure you are getting tested at exactly the specific dates, and all they have to do is gp in for a test at their whim. We made it through that part and have been good partners in the the IVF process. I hope you have good news coming your way!

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