Waiting………….

My beta from Wednesday came back at 1424. Not good. It should have been at least 2300 if it had the anticipated 60% rise from the previous beta at 716. My ultrasound on Friday once again showed an empty uterus. During my hour long ultrasound search for the gestational sac we come up empty… except for a cyst with high blood flow on my left ovary. They didn’t think it was the sac but it was the only thing they saw so now we are on the verge of a possible ectopic pregnancy. However, there is no spotting or cramping and I feel fine. The doctor keeps asking me how I feel – I feel normal. Nothing has changed except the words that came out of her mouth when she said I was miscarrying again. Oh, and my anxiety has sky rocketed just waiting around for my fallopian tube to rupture and my possible chances of ever carrying our own child in my belly to disappear.

Unfortunately Dr. Kwak-Kim‘s office does not handle the resolution of a failed pregnancy so I was sent off with my ultrasound report and labwork in case I ended up in the ER over the weekend. In the meantime she wanted me to follow up with my ob-gyn for further instructions. Nothing like calling your doctor at 2:50pm and getting a message that their office closes at 3:00pm on Fridays. B*tches! It’s not even 3 yet! In a panic I called the other doc back and asked what to do who recommended I call the emergency line. The answering service lady was a complete a-hole and after I complained that it’s not even 3 yet and I KNOW they’re still in the office she patched me through. After they spoke with Dr. Kwak-Kim’s office and reviewed my records they were also worried and off we went bright and early on Saturday morning for another ultrasound. This also showed an empty uterus and the spot on my ovary was determined a cyst but something to watch. So I was sent home again to look for signs of an ectopic. They also drew blood for a beta but they use a different lab than my other doctor so the numbers aren’t comparable. Saturday’s beta was 744. Ouch. I know there’s a difference between labs but that hurts… even though I know it’s not viable there was that damn sliver of hope. They took more blood today and tomorrow I’ll hear from the doctor about next steps. In the meantime I stop my twice daily Lovenox injections, Progesterone, estrogen patches and am slowly weaning off my prednisone.

Not sure about any of your experiences but I find the entire process of finding out about your miscarriage one of the most awkward, uncomfortable and publicly demeaning experiences ever. Previous times I have had ultrasounds where the sonographer can’t tell you so they send you back to the exam room to wait (forever) for the doctor. Or they send you back to the lobby to wait. All the while there are pregnant women everywhere, babies crying, kids running around and then once you do get the news they still make you check out and validate your parking ticket when in actuality you want to run like hell. Today I went in knowing mine was not viable and sat in the lobby with an obnoxiously pregnant woman maybe 5 months who sat with her mom, husband and child talking about “baby sister” and how uncomfortable “mommy” was and that the child should behave. blah blah blah. I wanted to leave. Then there was the cutest 8 month pregnant woman with her husband and they were so adorable I wanted to hug them and tell them congratulations. I was called back for the blood draw and the nurse wouldn’t shut up about her baby. WTF! Does she not read my chart?! After she told me Saturday’s beta I wanted to run. I started to leave and the receptionist said I had to come back to “check out” which required… my name. Really! I just checked in 2 minutes ago!

So as an appropriate end to National Infertility Awareness Week (NIAW) on Friday I learned of my 4th miscarriage. Today, I am currently waiting for this pregnancy to “resolve itself”. This time they want my body to naturally resolve the pregnancy instead of doing a D&C or using medication to dissolve it. Naturally is obviously the better choice. The doctor does not want to do another D&C because I’ve had too many already (5). And the medication they use to dissolve an ectopic pregnancy (Methotrexate) is used to treat certain types of cancer and that scares me. What scares me more is the fact that there is a life inside of me no longer thriving and we don’t know where it is.

It’s lost and I’m waiting… what a perfect storm.

Next step recommended for us is IVF with PGD (Preimplantation Genetic Diagnosis).

good, evil and a sliver of hope

It’s been a couple weeks… I didn’t know what to do, write or say.

Truth is that I peed on a stick the day after my last post and got the faintest of lines on a pregnancy test. So light that I didn’t even tell husband. The next day the same… not any darker. Still didn’t believe it so I went in for bloodwork. While at the doctor they did a pregnancy test in the office = negative. Shortly after I left the office I got a call from the nurse saying she was about to throw out the test and she also saw a very faint line! Holy Balls guys! Could this be possible?! As you recall from my last post we thought that cycle was a bust so we stopped trying. We were told to do the baby dance on such and such days but we didn’t. We quit. I relaxed. Had fun. Stopped worrying. I’ve known I was pregnant for about 2 weeks. I didn’t write anything because I wanted to see what happened. I felt bad for my fellow infertiles who have been struggling and I wasn’t ready to announce it to the world just yet. I’m still not ready but I felt like a fraud lying when people asked. I still will not announce it… the only ones that know are close family, a handful of people at work and now whoever reads this post.

Now, before you say I told you so (“stop trying, relax and it will happen”) please understand that those words are impossible for an infertile to comprehend and sometimes even painful. Relaxing is nearly impossible. Trying not to worry is so far out of reach. You try so hard every month just to fail in the end and then to stop trying and it miraculously happens just kind of pisses you off after trying so hard for so long.  Not that this pregnancy isn’t welcomed and a blessing. I’m amazed. We finally got our happy beginning, our positive. We were in shock. The doctor was even surprised.

My first beta hCG was 39. Low and freshly pregnant. Repeat bhCG 2 days later was 89, then 150, 289, 716… “reassuring results” said the doctor. In the middle of being poked with needles every other day I had my first ultrasound. This ultrasound was uneventful but my uterine lining was on track with pregnancy (thanks to the estrogen patches), my NK cells, progesterone, etc where all surprisingly the best they’ve been in months, and my blood flow to my uterus was improving on twice daily Lovenox injections. Sidebar – to add to anxiety of the now twice daily injections… insurance will not let me refill my Lovenox until the day I need it. What if I were going out of town? What if I mucked up an injection and had to toss it and start over since they’re pre-loaded? What if I can’t get to the pharmacy before they close? Oh, but I can refill it before they allow it for $2,238.59. Ha ha ha). Anyway, the doctor said it was probably just too early to see anything on ultrasound and since I ovulated so late we have absolutely no idea when we actually conceived. The plan was to start weekly ultrasounds and labwork the following week (this week). So…

Today I had another ultrasound (10 days later). Today we saw nothing. The doctor who did the ultrasound told me that without knowing how far along I am it’s still possible it’s just too early. I could be anywhere between 5-8 weeks. She told me not to worry. Ha! there’s that evil word again. I got dressed, they stole more blood from my veins and I sat and waited for the doctor. I was pulled back into ultrasound a while later to “double check” something they saw… false alarm. I got dressed again and the doctor came in. She had “the look”. The look that says I’m sorry without actually saying it. She explained that with my hCG levels where they are she expected to see something on ultrasound, at least a gestational sac. There’s always a chance it is obscured but that damn ultrasound probe was up there a long time (twice!) and nothing. She said the viability for this pregnancy is poor. Pregnancy number 4. She talked to me about the possibility of this being an ectopic pregnancy. I’ve had no pain or spotting (Lie. I cramped the other night but ignored it). The doc explained NOT to ignore future pain, ectopic pregnancies can be very dangerous and that she is contacting my RE and my regular ob-gyn to let them know my current situation because they do not perform surgery and she was concerned about their availability if I end up in the ER.

So after I cry and consider the truth of the situation I call husband. He doesn’t go to my appointments with me anymore because I simply have too many. There’s no way he can. I like to say I’m strong enough to handle news like this but each time it takes a piece of my soul. This is where you doubt everything… including the professionals. I despise the internet.

It’s hard not to have a Sliver of Hope that they’re wrong.

I’ll hang on to that for Friday’s ultrasound and let you know.

While driving home and going through the early stages of grief, sadness, anger, etc I was following this van who:

a) was driving unbearably and annoyingly slow

b) was rubbing her perfect, happy, healthy family in my face with those ridiculous decals

c) I don’t think the police officer sitting on the side of the road would have appreciated the irony of my road rage

d)  when I finally got the opportunity to pass her there was a sign on the side window that said “baby #5 on board!”

I wanted to ram that damn van like I was in a demolition derby. Of course I wouldn’t. I know it’s not her fault. Then I realized I’m positively going to hell because while she slowed to turn and I gently went around her mom-mobile guess where she was turning in to… CHURCH! Yep. Hell. But at least it made me laugh.

V-Day

It’s been 13 days since my last post and I’ve had 3 ultrasounds, 2 blood draws, a dentist appointment, my first acupuncture visit, started 2 new medications and had a trigger shot.

I. am. exhausted.

My ultrasound on Monday, 2/4/13 showed that my ovaries were progressing slowly once again… meaning for some reason those funny little follicles on your ovaries that get bigger each day and eventually one of them matures and releases an egg… aren’t getting bigger and likely not going to release an egg either. Job well done ovaries! To watch this issue a little closer I returned Friday, 2/8/13 and again they showed slow progression but got the go ahead to start peeing on those fantastic little sticks each morning. If the ovulation kit did not go off I’d return Wednesday, 2/13/13… guess where I was today? This ultrasound showed a large follicle or cyst on my left ovary and a shriveled up follicle on my right (raisin looking follicles are a normal sign of ovulation). BUT – my endometrial layer was still measuring too thin which is contradictory of ovulation (normally thickens the farther along you are in your cycle and with ovulation). So did I or didn’t I? No one knows. SO – here’s to trigger shots (hCG injection which triggers ovulation), estrogen patches (Vivelle-Dot) and 3 days of good old fashioned fun!

In between all of this – I volunteered with some lovely co-workers for an amazing organization (see link), supported the Wisconsin Special Olympics at the Polar Plunge (burr!), heard hubby’s band on the RADIO for the first time!! Then… hubby and I had a great weekend at a 4star hotel downtown Chicago, ate great food, saw great exhibits and walked miles with sore feet. Our return Monday was filled with a very happy dog greeting us at the door, an oil change and a trip to my first acupuncture visit. phew!

downtown Chicago, IL

One Time Hero (hubby’s band!)

one of the Valentine’s boxes put together at the Heart2Heart event

and here is a photo of my daily med schedule… I feel so so dirty.

There are so many other things I could write about tonight but I have to get up in 4.5 hours. I’ll keep this one short and try to be better at updating more regularly. Happy Valentines Day to all or if your single – Happy Vagina Day 🙂

OWWWW!

Well…………. Not much has happened since my last post but I just feel like ranting sooooo…
I REstarted my Lovenox today and (dammit) I hit something. My bruise is the biggest yet and it bled into my other bruises because they just. won’t. go. away. So now I have a black, blue and purple abdomen with a giant knot underneath that hurts like hell. Not to mention the blood that began squirting out of the injection site after I removed the needle.
Self titling this post “OWWWW”.
I’ve come to a couple conclusions… I need help giving my injections now since I no longer have room and can’t see my back side or over my ta-tas to trust myself not to cause bodily harm (get ready husband – you’re up!) And second… I sickeningly missed the injections – as crazy as that sounds during my 6 day lapse. It was ONE thing that was routine every day. But I guess now I’m back at it and that routine too only modified slightly.

I went into Dr. K-K’s office on Tuesday for my monthly 8 tubes of blood to be drawn and return Monday for a cycle ultrasound to see where we’re at… I hope my labs have improved while on Prednisone, Levothyroxine, and Progesterone the past month. Fingers crossed.

I’m also going to see a highly recommended acupuncturist on Monday which I’m honestly very excited about. Expensive but worth it I hope. I knew all those petsitting jobs would come in handy some day 😉

In other news a friends relative that has been MIA for 60 years (Korean War) has been positively identified by dna and returning home next week! AND I’m waiting on pins and needles to see if a friends dream and miracle comes true this week. (Thinking of you B!)

“High Hopes”

“even if you fall on your face, you’re still moving forward”

If you have stumbled upon my page accidentally (like the poor soul who searched for the “unicornuate foothills”… surprise!) or on purpose… I need you to know 3 things:

1)  I write here to SHARE. to let it out. to vent. to release all these emotions.

2)  I NEVER mean to offend, hurt, or gross anyone out (on purpose)

3)  I appreciate your LOVE and support (in any form!)

This is my journey through infertility and having a rare medical anomaly called a unicornuate uterus on top of many other fertility obstacles.

Most of you are probably thinking this is far more information than necessary and others maybe not enough. I have a hard time deciding what to write – who will I offend if I say this or that, whose feelings are going to get hurt? Will my personal/professional relationships be affected? Sometimes I even forget to talk to my family first… sorry!

My last post was up in the air, “a waiting game”… which in a way is over for now but I’ll always be waiting.

I peed on another stick Friday and got = BFN (Big Fat Negative), (–), “NOT Pregnant”, 1 line instead of 2

I was too scared to take a test as soon as I could have so I waited an extra 5 days… the symptoms I experienced were all the same symptoms of 3 different things: pregnancy, . (AF) , and side effects of my meds. Looking back I should have tested the minute I could have because if I was pregnant I was supposed to double my injections and Pred. I’ll be better next month I promise. I was just too scared of failure.

Even if you fall on your face, you’re still moving forward

Victor Kiam

On the positive side I stopped my Lovenox injections and Progesterone. I never thought I’d appreciate my love-handles but they sure came in handy. I restart Lovenox in 4 days but a little break will be nice for the belly and the brain(emotionally). Also, the Progesterone was making me weird: affecting my vision, my brain and mouth refused to cooperate with one another – I was spacey stacey, forgetful, and SO unbelievably tired. I get a 2 week break on this thankfully. I’m continuing the Prednisone and back tomorrow(Monday) for blood work and then another ultrasound a week later. In the meantime I’ll try to stick with the low carb/low sugar diet to help my polycystic ovaries.

There are 2 words that can appropriately describe what I feel right now:  failure and devastation.  I know this will take time and I know what you’re thinking. You can all say that I didn’t fail but in my brain it’s my fault. There are things I should have done better or differently. But then I think that there are people in this world that do everything wrong and still get pregnant so why should it be this hard for me? Why should I have to try so hard, can’t I slip every now and then? There always seems to be something to blame myself for. This is not just me being hard on myself, this is part of the illness. Read any infertility blog out there and we all go through the same things. I’ll say for the millionth time that there are numerous forms of infertility in this world. In the U.S. alone the CDC reports that the number of women ages 15-44 with impaired fecundity (impaired ability to have children) = 6.7 million!

We are all the same in the most important ways – we have the same dream. With this dream comes loneliness, struggle, sadness, fear, desperation and even hopelessness at times.

Long story short… this cycle was a bust but hopes are high

So… until next time…

My new life…

I hate nerves and I have become a very nervous person. This scares the crap out of me which makes me even more nervous which I also know is not good for me or for my baby maker and all that Zen crap which I’m not sure I even believe in. I do know that stress is an issue, MY issue and a very clear one at that.

My husband has always struggled with anxiety and I never really understood – until now. There are times where I’ll be doing something totally normal like washing dishes, driving, watching tv and then suddenly I can’t breathe, my heart races, eyes go white and I feel like I’m going to pass out. I relate this to my new medications and knowing what my body is going through and how this is just the beginning. HOW am I going to function when (IF) I am pregnant and on even MORE medications that will wreak havoc on my body? I knew I could give myself the injections but what I didn’t think about was the mental toll it would take. One week into my once daily Lovenox injections and I was home alone and in the shower before work, looked down and saw blood – a lot of blood. Each of my injection sites were bleeding. Here come those god damn nerves again. I lost it. I then made the mistake of looking online – which in my profession we always curse so I should know better but I was alone at 5am and out of other options. Needless to say this did not help.

I want a baby SO badly but at the same time my mind and body feel so off course and I’ve only just begun. Soon I’ll be doing twice daily injections (I’m already running out of room!), taking 11 pills a day and beginning now I’ll be at the doctor at least once per week. My new life consists of constant nerves (already), timing my medication, trying to find an unbruised spot on my body to inject a terribly burning medication, giving myself a pep talk everyday hoping my husband still finds me attractive with my black and blue belly and also trying to talk myself into thinking that this will all pay off… eventually.

I also feel excitement… We have officially started the process which in the past has always taken a while to do. We’ve lost 3 babies in the past 5 1/2 years. Each one seemed to take a little longer to recover from not including the numerous road blocks in between. This new path gives us hope. Things we haven’t tried before and a new direction to follow.

Last week I went in for blood work (still about the same: everything’s too high and too reactive which the prednisone will hopefully help). Tomorrow I have an ultrasound to see if the Lovenox is helping the blood flow to my uterus and to meet with the doc about the rest of my labs. I’m a little nervous but ready to get this show on the road!

“I’m Fine”

That one ambiguous question… so simple and innocent yet asks for so much more… “How are you?” Great question! In which my usual response is “I’m Fine”. It’s a safe answer. This question could mean so many different things. But …

Arrrr… what?!

The decision has been made… we’re going to try. One more time. We can always adopt but if we’re going to try the time is now. Try being the key word.

My ultrasound was today and there were a few new findings:
1- it seems as if I did not ovulate this month (possibly because my cycle is still off from my surgery a month ago)
2- my endometrial layer is still not measuring where we would like it
3- blood flow to my uterus is not improving much with my meds. But to my uterus’ defense I was told not to start the heparin (Lovenox) until after surgery
4- while measuring the blood flow to my uterus by internal ultrasound using doppler – Nadia, Sweet Nadia, one of the best sonographers ever, asked if I have an arrhythmia What. The. H. I do now!
Funny thing is that they found it through my WhooHa (pardon my french)
So far this entire experience has left me thinking… what in the world are they going to find next?

Plan:
*Go see my family doctor about the arrhythmia
*Start Lovenox injections – I did the first today and totally do-able
*Wait a few cycles before we really start trying (which is good because we just signed up for AFLAC so I can get paid while on bed rest/maternity leave and there’s a 10 month waiting period
*Refill Xanax. Yep, not ashamed. Had 3 panic attacks today. One while loading the car and the dog for a week away, alone. The other 2 while driving there (yikes!) Don’t worry, I called my husband and begged him to talk me down. He did so by telling me a story about a little man named Silverstein who lived in a boot. Crawled out through a lace hole to work at the power plant to power the robots who mined precious metals like ardmium for trade. To be continued…
Never a dull moment and that’s why we work. We are both so weird it’s entertaining 🙂 To us anyway.

To those of you out there spreading the word… Thank You. All I ever wanted was a place to vent and if I helped a single person in any way I’d be pleased. It seems as if I at least get people thinking. It may not seem like much to most of you but it’s an extremely taxing process to go through and talk about later. People can be very supportive, helpful, encouraging, but sometimes cruel without realizing. You battle so many emotions at the same time it’s difficult NOT to have a panic attack 🙂

And the verdict is…

…hung jury…

Good news is… I got a new iPad because my husband feels bad for me 🙂
Bad news is… Things didn’t stay as positive as we were hoping.
I’m still processing everything and honestly I don’t remember all the details. Very long story short my lab results showed 3 other gene mutations on top of MTHFR – all having to do with blood clotting… All not good. There are some concerns with hormone production due to these gene mutations. I have Very poor blood flow to my unusually small uterus combined with irregular uterine structure. Labwork also reported a vitamin D deficiency and a possible thyroid issue. My TSH (Thyroid Stimulating Hormone) was normal but for pregnancy they like the number to be 2.0 or less and I have a 3.3 so the doctor ordered a thyroid ultrasound which showed that I have some pretty good sized nodules on each side (still waiting for results from the radiologist). Dr. Kwak-Kim also has a system of rating your reproductive system and out of 21 points (21 being good) I have a 7.
So on top of my uterus being small, my clotting issues, vitamin deficiency, polycystic ovary syndrome, possible thyroid issue and recurring pregnancy losses she still believes that I can carry a baby. The question is how long and how healthy will both of us be? The doc also ordered another HSG (saline ultrasound) where they make you sign scary forms about surgery and risks and then put strange objects in strange places, fill the uterus with saline and then ultrasound it to see your uterine structure and lining. During the ultrasound I hear “what is that?” and “that’s interesting” and “I’ve never seen that before”. All things that you really want to hear when your mind is already whirling with negativity, doubt and “OMG, I’m going to loose it any second now so hurry up”. Turns out my uterus is harboring some very irregular tissue and a possible calcification of some sort which formed within the last 5 months.
Now we’ve put the brakes on everything while we figure this part out which means surgery again and puts me at my 4th D&C. Once this is done we have to wait at least a month and then go back for another ultrasound before we talk next steps. She already had me start on several new medications however…

Prenatal Vitamins
Baby Aspirin (helps with clotting)
Metanx (vitamin B supplement since my gene mutation prevents activating folic acid into VitB)
Vitamin D
Vitamin E
Antibiotics
Prednisone (steroid to help with hormone production)
Calcium (supplement while on Pred as it can deplete bones of Ca)
Lovenox Injections (heparin – blood thinner)
Crinone (progesterone supplement)
Low Carb diet (helps with polycystic ovary syndrome, PCOS)

I’m not even sure I got all of this right. My mind is running laps 24/7 around what to do. I know we should try again but is all of this worth it without a guarantee? What if something happens to the baby or me? What if I get put on bed rest early on? Are we prepared to have weekly blood draws and ultrasounds every couple weeks? The meds already make me sick… Can I handle that along with possible morning sickness and fatigue? What if I can’t handle this emotionally? Are we spending thousands of dollars on this treatment when we could be saving for surrogacy or adoption? The list goes on and on…

We’ll start with surgery… see what that results in and go from there. That’s all we can do at this point. This leads me towards adoption more and more. As I try to stay positive for myself, my husband, and our families I cannot help the fact that I already feel exhausted and utterly drained. It’s hard to sound upbeat and positive in this post because this is my way of getting it all out… Therapy if you will – I’d owe you thousands of dollars! So I apologize for the frowning and sad faces that I bestow amongst you.

I am again so extremely thankful for our amazing family, supportive friends, cooperative co-workers and a wonderful team of doctors and their staff for holding my hand through it all.

Now I’m going to play with my new iPad and relax. I’ll update you all as soon as I understand more myself 🙂

Doctor Number 6

Sorry for the delay but I have been all consumed by the Fifty Shades Of Grey trilogy 😉

A few updates since my last post…

My results from my last pregnancy came back as Tetraploidy, meaning that the embryo had four complete sets of chromosomes (96) instead of two sets (46).  I was referred to a Genetic Counselor, Seth W Marcus, at Advocate Lutheran General Hospital who said that we have already done the genetic testing he would recommend at this point so there wasn’t any further testing for us to do.  He explained that sometimes this happens with uneven cell division.  It also could have been twins that fused.  Maybe this way it was easier considering we would have had to choose one to abort if it were twins due to my uterus being underdeveloped.  In the meantime I’d still been waiting for my big appointment with Dr. Kwak-Kim at Rosalind Franklin University.  This is the appointment that is really going to be it for us.  This is the last straw, the last try.

I went in for my 3 hour appointment and left amazed, dazzled, hopeful, excited yet nervous, sad and scared.

My ultrasound was first and never have I ever had such a thorough ultrasound where everything was evaluated.  I have had a variety of ultrasounds in the past, so many that I cannot even begin to count, but this was incredibly informative and right away there were issues brought to light.  I have several cysts and low blood flow to my right ovary (which is on the “bad side” where the rudimentary horn was and is not connected to anything).  The Endometrial Layer of my uterus was again thickened (previously had a D&C to, for lack of better words… clean out, a few years ago).  By doing a Doppler ultrasound they measured blood flow:  my uterus also has poor blood flow which we thought we were helping by the baby aspirin and extra Folic Acid.  However, I was informed that my MTHFR was preventing the folic acid to activate which normally produces Vitamin B.  By having poor blood flow it’s possible that my previous pregnancies did not thrive due to low oxygen.  If there is not a fresh supply of  blood getting to the uterus there is not fresh oxygen to support the fetus  😦

So after 21 tubes of blood, a new prescription, making light of having an ultrasound probe in sacred territory for 90 minutes 🙂  and discussions as to possible future treatments we have decided to do a follow-up ultrasound which is scheduled for Friday.  This will determine the next plan of action and we have another appointment to go over lab work on August 30th.

We are happy that we are finally getting somewhere but also apprehensive.  Knowing that there are several things going against my dreams of having our own child someday is quite trying… emotionally and physically.  We are thankful that there are other options available and also extremely appreciative for the support of our amazing family and friends.

Thank You… a thousand times thank you…