not much to update

Sorry I haven’t been around much. Honestly there isn’t much to say. My life consists of waiting, spotting, and cramping. I’m sick of it and I’m sure you’re sick of reading about it, so I haven’t been posting. The ultrasound is still scheduled for Thursday and the anxiety about what we will be told at the appointment is unreal.

We had a nice, quiet Thanksgiving. We’d been invited several places, but since I’m still on house quarantine decided it was best to stay home. We invited a few people over and kept it small. As of this afternoon, the tree is up and the house is decorated for Christmas. I even managed to wrap a few of my husband’s gifts. The weather has been perfect for staying indoors, decorating, wrapping, and drinking hot chocolate. It’s been raining, windy, and cold, not cold enough to snow, but cold.

Hopefully I’ll have something more substantial to post about tomorrow. I still plan to do some infertility related book and podcast reviews. I also have a few minor things to vent about, so stay tuned.

PS- If you’re one of the many people waiting for an email from me, I’m hoping to catch up tomorrow. I feel like a bad friend, cousin, member of blog land etc, and I have no excuse for not being more timely about returning email, so please accept my apology.

I wonder

I wonder what it’s like to see a positive home pregnancy test and feel nothing but joy, instead of some joy and a lot of fear

I wonder what it’s like to use the bathroom without worrying that this is the time you will learn that the pregnancy is over

I wonder what it’s like to feel “safe” enough to start reading the dozens of pregnancy books you own

I wonder what it’s like to not let the tiny amount of caffeine in a decaf latte make you crazy with dread

I wonder what it’s like to not play games with yourself regarding every decision you make throughout the day. Games like, I better not open the next box of Crinone, because I might not need it tomorrow. Or I better not open the next bag of syringes, because I might not need those either

I wonder what it’s like to order the much needed maternity pants without fear of having to return them unused

I wonder what it’s like to feel excitement over a very much wanted and planned for pregnancy, though know that you can’t because in just days, if not hours, it could be stolen from you again

I wonder what it’s like to research nursery furniture, instead of researching how many intralipid infusions it takes to keep your body from once again killing your baby

I wonder what it’s like to have two consecutive hours of no cramping or spotting

I wonder what it’s like

Tuesday update- internet, phones, and cats, oh my

The repairman from the phone/ internet company was here this morning. He repaired the internet (HUGE sigh of relief) and one phone line. According to him, the other phone line and alarm are not his company’s problem, which I agree with, though it isn’t helpful to hear. Now we go back to the housing department, security experts, electricians, etc, etc, etc. I mean really, we’ve only been here 15 months. Clearly that length of time and over 20 appointments isn’t enough to have this resolved (insert sarcasm). And so the aggravation continues, but for today, I have the internet again. Hooray!!!!

In other news, Guinness decided that it was time to wake up at 3:30 this morning. There was a lot of running up and down the stairs, meowing, and overall whining about the difficulties of his feline life. I finally went to get him, told him it was time to close his eyes and go to sleep (yes, I talk to the cats), and he curled up to go to sleep. Enter Bella. Within seconds of Guinness showing signs that he had calmed down and was going to sleep, Bella came in, so Guinness leapt off the bed and the chase (up and down the stairs) began. They finally settled down around 5. Of course it’s now 4pm and they are comfortably snoozing next to each other. Must be nice.

long, overdue post (immune issues)

A few weeks ago, I promised to do a post regarding my immune issues. Since we are staring up another round of IComLeavWe and might have a few guests visiting the blog, I thought this would be a grand opportunity to give the rundown and a bit of history.

It all started many, many, many years ago when I was diagnosed with a thyroid disorder (hypothyroidism). It wasn’t a huge surprise as several of my female relatives also have thyroid issues. After many years of trying to regulate my thyroid, I seem to have found the trick. Though again, this was years of blood draws, trying different medications, different dosages, moving to Germany and being put on the local stuff (nightmare), all mixed in with a few health care providers trying to save me a dime and ordering the generic. Trust me, spend the extra money for brand name, thyroid meds. Your body will thank you.

Jump ahead and the thyroid is FINALLY sorted out. We arrived in Minsk, Belarus in 2007, already knowing that we had a fertility issue (three years of perfect, NFP charts tend to clue one in to these things) and decided to have some testing done.

The initial blood work was as close to perfect as could be, with one exception, that darn thyroid. Even though my TSH was spot on at around 1, the Anti-TireoPeroxidase was 550.80, with a reference range of 0-34. This immediately clued everyone in that this was very likely an auto-immune thyroid issue and got me sent to the endocrinologist for a thyroid ultrasound. Once again, I was not at all surprised by hearing “auto-immune disorder” because well, my relatives have a ton of those, too. The ultrasound showed that my thyroid is 67% of the normal size and will continue to shrink. Definitely auto-immune, commonly called Hashimoto’s Thyroiditis.

So there we were, quite a bit of time trying by this point, a diagnosed auto-immune issue, a lot of blood work, an HSG, a semen analysis, and a handful of REs (both in Minsk and consulted in the U.S.) telling us that IVF was our best bet, actually our only bet.

Researcher by nature with a medical background, I read medical journals, studies, books, consulted with the experts, etc. etc.. My goal was to have the first IVF supplemented with baby aspirin, steroids, and heparin. Unfortunately my RE in Belarus was uncomfortable using heparin injections until I had experienced three losses. Disappointed is an understatement, but what could I do. Anyway, we did the first IVF with the standards meds, baby aspirin, and a steroid called Medrol. I did conceive triplets, but we lost them fairly early. We went on to do a FET (frozen embryo transfer), but those two never even implanted. And then we had the great political fiasco of 2008 and left the country.

Enter Dublin. I found a great clinic, great doctor, and had a great consultation. After reviewing all of my paperwork he firmly believes that I lost the triplets due to immune issues and my system attacking/ killing them, so I was referred for additional immune testing, first to France, then to Chicago.

Those tests indicated that I have Anti-Thyroid Antibodies, Anti-Nuclear Antibodies, elevated CD 19+5 cytokines, and the Natural Killer Assay numbers dropped considerably when IVIG was introduced.

So the new protocol was set for the standard IVF meds, baby aspirin, prednisone,heparin injections twice a day, and intralipid infusions.

And now you know more about my medical history than you EVER wanted to. There is still a long way to go, but I am now a firm believer in reproductive immunology and the use of intralipid therapy in patients with identified immune issues. I’ll continue to update the blog with resources on this topic that you might find helpful.

More information about intralipids.

reason 1,582 that you should always check with your wife

A department that is also in the building in which my husband works recently had a raffle for a few American items. The items included a can of pumpkin, a bag of chocolate chips, a box of cake mix, and a container of Cool Whip. A mass email had been sent out which I ignored because we don’t need any of these things, particularly the Cool Whip (I'm not a fan of fake food).

Upon returning from work that evening, my dear husband announced that he had bid on the raffle. “How much?” was my first question. Answer, “21 Euros.” Ladies and gentlemen, that is $31. Next question, “Why?” Answer, “We need the pumpkin for Thanksgiving.”

Trying to remain calm I informed him that being the resourceful wife that I am, I had already procured a can of pumpkin for Thanksgiving, and paid all of €3.49 for it.

So yeah, I spent the next few days hoping that we didn’t win the raffle. No such luck. He came home on Thursday with our “prizes” in hand. Fortunately the raffle money went to a good cause, but men, there is a lesson here. Just run things past your wife, it will make life so much easier, and less expensive.

no internet, no phone, but a lot of annoyance

On Friday afternoon I had my third intralipid infusion. I had a great nurse once again. The infusion was easy enough; just like the others, paperwork, vitals, infusion, done.

My husband had some work to do Friday night so I was looking forward to an evening alone (with the cats), catching up the blog, chatting away on a few message boards I belong to, and overall, relaxing.

Everything was going well until around 4pm when the internet went down. I tried all of the tricks, unplugging modems, disconnecting, reconnecting, restarting my laptop, turning on the wireless, turning off the wireless. NOTHING worked. We are paying for the “business plus” plan for our home internet usage and yes, I expect it to work.

At approximately 5pm my cell phone rang. It was my husband calling to find out what was wrong with the house phone. Err, nothing? Nope, I spoke too soon. Sure enough, the house phone is dead AGAIN. Our house phone lines have been down more than they have worked in the past 15 months. The irritation I experience with this house is UNBELIEVABLE. Constant plumbing, electrical, and appliance issues. I won’t even go down the list of cosmetic issues our overpriced, fancy schmancy, Ballsbridge address has. If I weren’t living it, I wouldn’t believe it.

I will save all of the things I have to say about the house until we leave Dublin, but let’s just say, the list is long, very long.

Fortunately my husband took pity on me and brought home a device that I can plug into my laptop to access the internet. It’s slow, but slow internet is better than no internet. The internet/ phone company promised to repair the lines within four business days. They are blaming the problem on the weather, but given that our neighbors all have working internet connections, I’m not convinced.

more cramping, more spotting, and more blood work

Today I had an appointment with my GP for blood work. I asked him to do a TSH (thyroid) and another beta. We briefly discussed high-risk obs in the area, though I’m not ready to book anything until a lot more time has passed. He said that they take limited numbers of patients and fill up fast, but I’m just not comfortable moving forward and won’t be for many more weeks. He also said it would take a day or two to get the beta results back. Torture.

As I was paying the bill (€90/ $135USD for a TSH and HCG, grrrr) the receptionist said that she would watch for the results and call me as soon as she received them. I still thought I would be waiting until Thursday or Friday.

Well, she just called.

Beta is 2,520. I’m still pregnant.

The cramping and spotting continue. I’m still on orders from both the fertility clinic and now my GP to relax and keep my feet up, but for now, I’m still pregnant. I even had two minutes of believing that this is real and finally booked the first ultrasound, December 3. I’ll go in earlier if there is a major problem, but by Dec 3, we should be able to hear a heartbeat if there is one.

In other news, none of my pants fit. As I’ve mentioned before, I was still carrying around extra weight from the first IVF, add in meds from the FET, then meds from another IVF= nothing fits. I’m really tempted to order a pair, or two, of pants from the U.S. (they would take a few weeks to get here), but I fear that by the time anything would arrive, this will all be over.

Ah, to be fertile and ignorant, or at least infertile in the U.S. with a few good stores in the neighborhood ;)

quick weekend recap (not very exciting)

I’m still on house quarantine, so weekends are not very exiting around here. I did insist that my husband walk over to the International Charity Bazaar and have a margarita on my behalf. He also had lunch, a glass of wine, did some shopping, and visited with several friends; all while I laid on the couch and worried. Just kidding, I’m glad he had fun.

We were without a dishwasher throughout the weekend (since last Monday to be exact), but as of this afternoon, it’s repaired, I hope.

While we were living in Berlin, we were asked to move from house A to house B, a move we welcomed. Unfortunately the movers smashed in the front of my slow cooker, though it still worked, so I didn’t say anything. The appliance finally died (due to it’s injury? I’m not sure), so I ordered another one. It arrived on Friday, so I made a roast yesterday. I had planned to throw the broken slow cooker away, but there are a few people who would like to attempt to “fix it” first, so I’ll keep it around for now.



the broken slow cooker


The cramping continues. I have minutes of feeling okay, start to have hope, and then the cramping starts again. Since I have numerous pregnancy tests around, I decided to test again yesterday, stupid, I know. Obviously if I had HCG in my system on Friday, regardless of what is happening now, there is still enough to result in a positive home pregnancy test. Anyway, still positive, still cramping, still occasionally spotting, and still scared to death.


I made an appointment with my GP this week. I need to have a repeat TSH (thyroid) test, and might as well have him draw a beta, too. I’ll let you know, one way or the other.

beta #2 is in

148! It doubled. Huge sigh of relief.

The conversation with the nurse was brief (it was the same nurse who told me that it was too early to do a beta on Wednesday). She asked if I had enough meds for the next few weeks, said she would get a referral in for another intralipid infusion, and told me to rest.

I’m still terrified because again, we’ve been this far before, but it’s a start.

International Charity Bazaar

If you are in Dublin and looking for something to do this weekend, check out the 4th Annual International Charity Bazaar at the D4 Hotel in Ballsbridge, Sunday, November 15, 11am-4pm.

Once again, over 40 embassies have come together to raise money for charities in Ireland and elsewhere around the world. Enjoy crafts, food, and drink from all over the globe, a great way to spend the afternoon and help raise money for a good cause. Entrance is just €2 and raffle tickets are available for sale. The prizes are fantastic, numerous trips, gifts, wine, etc..

We attended last year and had a fabulous time. Enjoy!

For more information and a list of prizes, click here

back from the clinic ::waiting, waiting, waiting::

I went back to the clinic this morning for another beta. You know you are a regular when you don't have to check in. The receptionist just buzzes you in after seeing that you've wiped down with the hand sanitizer at the entrance; then as you approach the desk, she says good morning to you by name and tells you to wait upstairs. sigh.

One of my favorite nurses called me back for the blood draw. We discussed the ongoing cramping, and now little bit of spotting :( She said the only thing to do is relax and rest; it could go either way at this point and I'm too early to scan, which I knew. She also said that she worked in a regular ob office for many years before joining the fertility clinic and understands that these pregnancies are “precious.” I assume that was a nice way of saying that IVF patients are an overly anxious, nervous bunch of crazies.

She gave me a little hug as we left and promised to call this afternoon, good news or bad.

the nurse called with the first beta

60!

I'm still cramping :( She said that I'm to rest on the couch or in bed, feet up and they will see me on Friday. She stressed that it's still very early, then told me to have a nice evening and called me "love". The Irish are so sweet :)

While I'm glad that we have a decent number, I can't help but be terrified, too. We've gotten this far before only to be devastated.

Anyway, tonight I'm at 60 and I'll take it.

waiting, waiting, waiting

On Sunday I had decided that I’d had enough rest and decided to get back to my normal routine. Bad idea. By Sunday evening I was cramping, a lot, which carried over into Monday.

Monday was a bad day. I received an email that the security team would be here “November 9, Tuesday” ?? to check the alarm. First of all, I was really looking forward to a day alone, possibly a day to rest. Also, last time the security team was here to check the alarm, the phone system was down for four months. Numerous appointments later with the security team, phone company, and electricians, the phones are working again, but I was not looking forward to a repeat. I think I was most frustrated with the email, were they coming Monday November 9 or Tuesday November 10.

On top of that, the dishwasher stopped working, again. I tried running it three times, three different settings, nothing. By dinner time I had yet to hear anything from the security team, had an entire dishwasher of dishes to wash by hand, but was still cramping. Oh, and did I mention there is ANOTHER leak under the kitchen sink and in the powder room?

Then my husband came home from work and informed me that our local grocery stores would not be receiving turkeys until the first week of December. Fine unless you are American wanting to celebrate Thanksgiving the end of November. Apparently turkeys can be ordered through local butchers; yeah, like that won’t cost a small fortune. And so the cramping continued.

As we sat down to dinner, my husband noticed that Guinness was not in his usual spot, begging for people food. Sure enough, the cat was in the foyer getting violently ill on the new door mat. Fabulous. Cleaned up the cat and the foyer, more cramps.

I finally crawled into bed and cried myself to sleep. I knew it was over. I decided to test Tuesday morning just to prove it to myself. It had been 15 days since the HCG trigger shot, no chance it was still in my system, therefore no chance of a false positive.

Tuesday morning I was up early (not that I had slept) and tested.

Much to my surprise


Yeah, pregnant. I showed the test to my husband and unlike the reaction that most couples have to such news, we just gave each other a look of “well, here we go again”, and that was that. Infertility and a previous miscarriage steal the joy that a positive pregnancy test means that you’ll actually still be pregnant the following week, the following month, or even that you might eventually have a live baby. And the cramps continued.

This morning I decided I was done. I had to know one way or the other so I called the clinic to schedule a beta (not routinely done here, a rant for another post). The nurse I spoke to was less than enthusiastic about me coming in so early, though agreed that it was definitely not leftover HCG in my system from the trigger shot.

The receptionist was very nice and agreed to get me in ASAP even though they were “double booked” today. She said to expect a long wait. I held it together until we were sitting on the couch in the waiting area upstairs. I saw my doctor come in to get another couple and lost it. Fortunately within two minutes a nurse called my name. (Crying patients in the waiting area can’t be good for business). The nurse was lovely, talked to us for a few minutes, then insisted she find someone to speak with us after the blood draw, which I told her wasn’t necessary.

She took the blood, flipped through my chart, and asked about my history. I told her about the triplets and the failed FET. She was awesome, completely awesome. She didn’t make me feel like a complete loon for being as scared and nervous as I was. She also said the cramps could be implantation cramps. WHAT? This feels more like, ‘my period is going to start any second’ type of cramps. Through the tears I told her that I never had cramping with the triplets and I lost them, so I can only imagine what cramps mean. Nope, she insisted, it was likely implantation cramps.

Another nurse will call this afternoon with the beta result and I have a second appointment on Friday. I was sent home with strict orders of “couch rest, tv, and chocolate”.

So now, I’m waiting, waiting, waiting……

PS- I’m not sure what to think of it, but every time I’ve been on the couch since the transfer, Guinness is sprawled across my stomach. Maybe he knows something is going on in there. Keep snuggling little buddy.

intralipids

I had a few extra minutes this afternoon, so I thought I would post some information about intralipids, as this is a topic that has been mentioned several times on the blog.

My reproductive immunologist had given me a packet of information on reproductive immunology and immune therapy. The section on intralipids follows::

"Intralipid
Evidence from both animal and human studies suggest that intralipid administered intravenously may enhance implantation. Intralipid is a 20% intravenous fat emulsion used routinely as a source of fat and calories for patients requiring parental nutrition. It is composed of 10% soybean oil, 1.2% egg yolk phospholipids, 2.25% gylcerine and water. Intralipid stimulated the immune system to remove “danger signals” that can lead to pregnancy loss. The appeal of Intralipid lies in the fact that it is relatively inexpensive and is not a blood product".

Most clinics, including the famous SIRM clinics/ Sher Institutes in the U.S., have replaced IVIG therapy with intralipids because they have been proven to be as effective, but as noted, are less expensive and are not a blood product. I was told that IVIG is approximately $4,000 per infusion, and I’m paying $400 per intralipid infusion, so it’s a considerable difference in price.

For more information, I would recommend the book, “Is Your Body Baby Friendly”, by Dr. Alan Beer. The book is a few years old and focuses largely on IVIG, which as stated, has been replaced at most programs with intralipids. I particularly enjoyed this book because the author acknowledged that reproductive immunology is still a new field and misunderstood by many of his colleagues. Over half of the book is notes, excerpts from medical journals, and studies; fabulous for someone like me who likes to know where an author is getting information.

Later this week I’ll go through my notes and medical records and do a blog post about my specific immune diagnosis and the ramifications of it, but for today, I just wanted to give a rough overview of intralipids and a few resources.

I’ve also decided that it’s about time I start going through the many infertility podcasts and books that I have. The blog will be a good push to do that, so beginning next week, I’ll do a weekly review of a podcast or book that might be of interest. Stay tuned.

Here are a few additional links to reproductive immunology websites:

The Alan E. Beer Center for Reproductive Immunology & Genetics

Rosalind Franklin University of Medicine & Science Clinical Immunology Laboratory
(Rosalind Franklin University in Chicago did the majority of my immune testing)

Reproductive Immunology Associates

Reproductive Immunology Associates Lab Studies

If you click on the individual tests on the websites, they give more information about the testing process and significance of elevated results.

second intralipid infusion

I had the second intralipid infusion this afternoon. It was very much like the first, check vitals, mix intralipids with saline, start IV, start drip, check vitals throughout, done. We were in and out in under two hours.

If all goes well, I’ll go back for another infusion in a few weeks.

our little fighters

Apparently we have a couple of little fighters. We had basically given up on the two slower embryos after speaking with the embryologist yesterday before transfer. She said that they weren’t growing as they should be and probably wouldn’t make it to freeze.

Imagine our surprise when she called today to let us know that they were both doing well, they look strong, and they were able to be frozen.

We are thrilled!

bad news, good news, and a sixth RE

We arrived at the clinic and while sitting in the waiting room, my fabulous nurse stopped to say hello. We had a lovely chat about the embryos and she assured my husband that they wouldn’t transfer all four, lots of smiles and laughs. Then RE #4 stopped to say hello. It’s nice to see familiar faces and know that so many people are cheering us on.

Finally it was time to go to the IVF suite. I changed and was put in the same bed that I had for retrieval. The nurse took us back to the operating theatre where we were met by the OR nurse I had last Thursday. She did a quick scan and then the embryologist came to speak with us. The good news was that we had two beautiful blastocysts; the bad news was that the other two embryos weren’t growing as quickly. They will be watched over the next day to see if they catch up and can be frozen, but things aren’t looking good :(

I was supposed to have the same doctor do the transfer as had done the retrieval, and I’m not sure what happened, but enter RE #6. She was very nice and best of all, my husband was actually in the room for this transfer, unlike IVF #1 and the FET. The OR nurse was really sweet and made sure that he could see the transfer on the ultrasound screen, even playing it back so that I could see it too.

A few minutes later I was dressed and ready to go. In Minsk they made me stay in the OR and recovery for two hours; going home right away seemed a bit rushed, though I have to trust that all is well. The nurse went over the discharge papers, instructions, wished us luck, and off we went. We are home now and I’ve started the dreaded 72 hours of modified bed rest. Friday I have an appointment for another intralipid infusion.

Considering that we aren't caught in the middle of a diplomatic spat with another country during this IVF, I expect the next 10-14 days to be fairly boring. Just hoping and praying that two little blastocysts are adjusting well to their new home.

transfer is scheduled!

The embryologist just called with the Monday evening highlights. As you might remember from my previous post, we had four embryos as of Friday night. They like to see 20% make it this far. We have 100%. Yes, we still have FOUR growing embryos. None of them are at blastocyst stage yet, but hopefully by tomorrow we will have at least two. The embryologist said that they are “amazed” that we still have four and they are all compacting nicely. If, big if, we have four healthy blastocysts tomorrow, they will transfer two, freeze two. If we have two blastocysts and one that isn’t doing well, the RE that did my retrieval suggested transferring three.

Thank you all for your comments, thoughts, and prayers. It means so much to me. I’ll update tomorrow when I get home.