1st Month with Femara

  1st Month and hopefully only month on Femara!  It wasn't that bad actually.  Not nearly as bad as Clomid horror stories of women wanting to kill their husbands (see ecard below). 

Femara gave me occasional hot flashes, minor nausea and a headache of maybe 6/10.  No emotional mood swings that I could tell.  So all in all, not too bad! 

I went to the Layton office for the first time on cycle day 2, and it was really nice there.  A very friendly receptionist, a water/stone/soothing display in the waiting room, free water bottles, and just a general feeling of zen.  It was very nice.  I was taken back to the room and also shown the bathroom where there were free products to use.  Dr. S came in to the room and we talked for a little bit about what labs I would need today and how my appointment went with Dr. A with Maternal-Fetal Medicine.  I think he was still considering if it was ethical or not to get me pregnant!  haha.  He then did the ultrasound (mandatory before a medicated cycle to make sure there aren't too many follicles that could release multiple eggs).  He said I had 7 follicles on each side, and he had hoped for 6.  Yay for exceeding expectations!  Then he wished me luck, left the room and I got dressed again.

After the ultrasound, I got my blood drawn to test my ovarian reserve again.  He wanted to make sure my first AMH level was accurate, since it had been low for someone my age.  Then I went into a consultation room and met with the nurse.  She gave me an outline of what I should be doing on each day of this cycle on Femara.  I went home feeling very optimistic!

I took Femara 5mg days 3-7.  I started taking my basal body temperature at 5:30 AM every morning I was home, or 3 PM on days when I had worked all night beforehand.  The key is to get 3-4 solid hours of sleep.  I definitely noticed a drop in my temperature on day 10.  I also started using the ClearBlue Easy Digital Ovulation Prediction Kit (OPK) on day 10, but it was negative that day.  I used one of my Wondfo pink dye OPK strips that I had been using prior to seeing Dr. S, and it was almost positive.  I thought that was interesting.  Dye is definitely more sensitive than digital! 

Another negative on the CBE OPK on day 11.  Then, on day 11 at night at work, I started cramping and bleeding for about 6 hours.  Usually when I ovulate I get a feeling of heaviness and have some spotting.  This was hardcore ovulation going on!  I called Dr. S's office when I got off work in the morning and they said to call back if the bleeding starts again.  Days 12-15 I had negative CBE OPKs still!  It didn't make sense.  I called Dr. S's office on day 15, and my progesterone level (which tells if you've ovulated or not) was 28.  Normal ovulation is around 5-10.  Medicated ovulation is 10-15.  So yeah, I definitely ovulated!  It was weird that the CBE OPK didn't pick up on it.  So now we wait and pray and fast and cross our fingers and wish upon a star!                  

Maternal Fetal Medicine Consult

Since Dr. S recommended I meet with Maternal Fetal Medicine (MFM) before conceiving, I decided to get an appointment at McKay-Dee as soon as I could in case there was something he recommended I be doing before getting pregnant.  I didn't think there was much more he could tell me that my specialists hadn't already.  I was pretty much right.  Hopefully my bill isn't too high!  I should get paid for asking better questions and being more prepared than the average patient!  haha.

I waited in the waiting room with 3 other very pregnant women, which is always kind of depressing.  Then I was taken to a consult room with another comfy couch and soft lighting.  This was nice, but in the next room I could hear the quick beating whoosh of a baby's heart beat on ultrasound.  I wished I could've been at the MFM office for that reason.

Dr. A came in, explained he was going to look over some of my test results and clinical notes since he briefly looked over everything and realized I have a lot going on.  He came back about 10 minutes later and asked me to explain all about my lupus and hypertension.  He is a very personable guy, and I think I will like him.

We talked a little about hypertension, and how he wouldn't be terribly worried if my BP was 140/100 if I wasn't having any other symptoms of preeclampsia (increased protein in urine, edema, etc.).  He said I probably already have some microvascular damage, so having a gradually higher BP during pregnancy wasn't going to cause me to have a stroke right then.  If it was a sudden spike up, he would be worried.  But he said if it was much higher than that, I should be in the hospital just like anyone else with a BP that high, pregnant or not.  I didn't tell him it had gotten up to 188/135 last summer!  He echoed my nephrologist in saying that your BP doesn't start to rise until about week 20 of pregnancy.  I was very happy to hear that info repeated because that's almost to the age of viability.

With lupus, there is a higher rate of miscarriage, early and late.  I asked him how early I would see him and if we could prevent an early loss.  He said I would see him first at 20 weeks (yay for not having to spend more money on doctors visits until then!), and there's really nothing anyone can do to prevent an early loss.  He said there is plenty we can do to prevent a late loss, and usually these mothers aren't taking care of their lupus very well or they were having a lupus flare when they conceived.  He said I'm his third patient this summer who was diagnosed as a teenager, almost died from my kidneys being affected so severely, and had barely any problems since then!  I would love to meet these other women!  Darn HIPAA. He also said I could have low-dose steroid treatment if I needed it for lupus, and that it wouldn't cause lasting harm to the baby.

He discussed some labs (APS, anti-SSA, anti-SSB), which indicated my chance of getting a blood clot and having a miscarriage, and if my baby might have congenital heart defects.  If it is found on ultrasound that my baby will have heart issues and their HR is low because they aren't getting enough blood and oxygen, I would deliver by C-section so they can constantly monitor the baby, and I would likely deliver at the University hospital so the baby could go directly to Primary Children's and be on telemetry.  He recommended I take a baby aspirin, just like everyone else has suggested. 

All in all, I knew about a lot of this.  I've done plenty of research, and my nephrologist started telling me a lot of this as soon as I told him we were thinking of starting a family back in 2011.  But it was a relief to get his blessing that pregnancy with lupus and hypertension isn't the worst idea in the world.  Again, if you're reading this, keep us in your prayers!        

 

1st Appointment with RE

The morning of our appointment with the Reproductive Endocrinologist started out with me freaking out because Charles wore this checkered skater-type shirt that I couldn't match, and I wanted us to look "put together" and like we were the perfect couple!  I also wanted us to look older than teenagers.  Charles told me I would pass for a 18 year old teen mom, but only because I put on foundation.  I guess that works, as long as we're married.  haha

We drove down to Sandy, because it was the only office where Dr. S happened to have a Saturday appointment open.  Yay!  Charles could actually come with me, and I didn't feel like I was lying to doctors about having a husband!  Also, distance seriously doesn't matter to us when it comes to this concern.  We were greeted by a nice receptionist, given a welcome packet, and had our pictures taken so they can remember us better when looking at our chart.  That's really smart!  Although, who can forget a short Indian girl who looks like she really shouldn't be a mom yet?

We got called back into Dr. S's consultation office that wasn't really his (he normally is in Layton), and we sat down on a very comfortable couch.  I felt like this is where you put your feet up, your head on a couch pillow and you stare at the ceiling as you recount all of your troubles.  Tissues were also readily available.  He started by saying my name right.  Major points to him.  Then, he made nervous small talk, but it was kind of humorous and didn't make us feel uncomfortable at all.  After that, we jumped right in to discussing my health history first.  He started by asking, "Are you really four foot ten?"  "Uh, yeah..."  You just lost those points you gained.  Better watch your next step!  Then, he said, "Tell me about your lupus."  Haha.  This consumed the next 45 minutes.  Poor Charles was feeling neglected.  We talked about my diagnosis, my 2 month "adventure" at Primary Children's in 2002, high-dose steroids, plasmaphoresis, my surgeries, what systems my lupus affected, the 2.5 years of chemotherapy I did, the 2 years of CellCept - an anti-rejection med so my body would stop hating on my kidneys, how I manage it now, what meds I take, what specialists I see, and on and on.

He admitted to not knowing much about Cytoxan and CellCept, which are two key opponents in our infertility game.  So, he looked them up briefly on several different websites to learn how they impacted fertility.  Apparently, CellCept doesn't have too much of a negative effect.  But Cytoxan is a very high-risk med that can cause a lot of problems.  I already knew that.  But I can promise you that the ICU doctors at Primary Children's weren't asking my mom if she wanted to freeze my eggs while they were busy saving my life, during my first treatment of Cytoxan at age 14.  It wasn't an option to not have chemo.  Dr. S understood how sick I really was when I was first diagnosed, and he made sure I knew that it wasn't my fault I had to have chemo.

He reviewed my hormone labs that my OB/GYN and nephrologist had previously ordered.  My anti-Mullerian hormone (AMH) which measures ovarian reserve was on the low side for a 26 year old woman.  Apparently, I'm in the 20th percentile, so that means that 80% of women my age have more eggs left than I do.  That's a scary thought.  He also mentioned early menopause, to which Charles gave the expected male response.  Great!  So, Dr. S said we need to get started on treatments ASAP to maximize the potential for the eggs I do have left. 

But then he asked a few more questions about my lupus management, and I told him about my blood pressure, and this noticeably changed our conversation.  I told him it got up to 188/135 in August last year when I forgot a dose of Labetalol, was super tired, and had a stressful shift at work.  I was given hydralazine, and then I had a bad reaction to it: migraine, vomiting, BP only came down a little, and HR went up to 130.  He said there are two main drugs they use to treat hypertension in pregnancy: labetalol and hydralazine!  I might not have a choice if I'm in hypertensive crisis. 

He talked to us about fertility meds and said Clomid would not be a wise idea because of the higher chance of multiples, which would be the worst possible thing for my blood pressure since blood volume increases with pregnancy.  So, he suggested Femara, with which you don't release as many eggs as you might with Clomid.  He definitely said the goal would be a singleton pregnancy.  Then, he leaned back in his chair, and said, "You know, there's always other options like adoption."  Yep, and we are planning on that in a few years.  Thanks.  We are here to get pregnant, and we know this is a huge risk we're taking.  With me being a nurse, and Charles and I both being excessive worriers, believe me, we've researched and thought about this A LOT.  I told him that all of my specialists follow me very closely and I have their blessing, and he felt a little better.  He then recommended I see a Maternal-Fetal Medicine specialist before conceiving.  We then came up with a plan.

The Plan: Take Femara beginning with my next cycle, use OPKs more dedicatedly because all the ultrasounds and bloodwork will be based on my results from when I appear to ovulate, and carry on as usual for two cycles.  If there is still no baby, then we'll try Femara plus IUI.  All in all, a very good one hour visit that really made us feel like Dr. S knows us and cares about us individually.  If anybody is actually reading this, keep us in your prayers!                   

                   

Follow-Up

Dr. Lister's nurse called and left me a message that she was recommending I undergo a procedure called a hysteroscopy where they insert a scope to look more closely at my uterus and remove the polyp they found in one of my tubes.  So of course, I didn't take my own advice and googled what is involved in a hysteroscopy!  Did you really expect anything different from me?  lol!  I found out that you are usually sedated for it when it is an operative hysteroscopy, and that was very welcome information.  I'm definitely going to be one of those women that beg for drugs ASAP!  God invented bupivacaine for a reason!

I went to my follow-up appointment with Dr. Lister, and she did a transvaginal ultrasound, a.k.a. the rigid wand of torture that magically emits sound waves.  I think it's funny how they put a condom on it.  Like really, there's nothing more medically advanced to slip over it?  Anyway, after some probing, she determined both of my ovaries looked great.  So, she pulled it out and let me sit up, and we discussed the next step while I still sat there half naked.  Oh the joys of discussions in the OB/GYN office, where you're hardly ever fully dressed!  She said she didn't really think I needed a hysteroscopy to remove the polyp because it was so small and it wasn't fully blocking my tube.  She also told me Charles' second semen analysis looked better than the first, and there were no abnormalities this time.  

So, the next step would be Clomid, a drug that makes you "super-ovulate."  When I texted this to Charles, his mind went to superheroes of course!  (enter in comments about having super strength eggs that can transform into a baby at the speed of light!)  I have heard many horror stories about Clomid, and I'm glad I did because many OBs are quick to jump on the Clomid bandwagon, and some of them don't do proper monitoring.  I learned that you can only take  it for a limited number of cycles in your lifetime, you need bloodwork and ultrasounds throughout the cycle on specific days, it can become a big problem if multiple eggs end up fertilized, and it can thin your uterine lining over time which would make an embryo not be able to stick and stay in the uterus.  Scary stuff.  Not that Dr. Lister couldn't handle it and I'm positive that IHC has Clomid protocols based on recent research.  But I wanted to explore my options.  So, I told her I didn't want to do that just yet.  Then, she very willingly referred me to Dr. Swelstad at the Reproductive Care Center.  That's a sign of a good doctor, when they can refer you to someone that might be able to help you better. 

I called Dr. Swelstad's office, and they don't take our insurance, and we make more than what qualifies for their discounted program.  Boo!  But a consult is practically free (just a specialist copay), so we got an appointment for Saturday!  We went online and filled out our separate history forms because the receptionist said Dr. Swelstad likes to know his patients' backgrounds before meeting them.  I think that's awesome!  So here we go!      

HSG Procedure

My only advice when it comes to infertility testing is: DO NOT GOOGLE how painful something is.  You can google the procedure steps, the risks and the benefits, and what the results may mean.  But pain is something so subjective and different to everyone, that it is pointless to read other people's experiences!!!

I had myself freaked. out.  My OB was in a rush and told me nothing about the HSG (hysterosalpingogram) procedure.  I found it that it's a dye test to assess the size/shape of the uterus and the patency of the fallopian tubes.  I also found horror stories online!  I read all these stories on TTC (trying to conceive) forums about women being in more pain than labor and about having to have their cervixes dilated with metal rods and held open with clamps.  Clamps is such a terrifying word! 

Well, I was a nervous wreck for about a week before the test, and I was sweating like crazy this morning before I went to the hospital.  I never stress sweat.  I took 2 Ibuprofen like they had asked me to do, even though I'm not supposed to because of my kidneys.  I even caved and took my mom with me because I had read stories of women being in so much pain they passed out and weren't allowed to drive home.  So, we got to Outpatient Radiology and signed in.  I had to go to the lab and give a urine sample which came back negative for pregnancy.  I prefer to get BFNs (big fat negatives) in the privacy of my own home, so that was kind of a bummer.  Then, I was taken back to the dressing room where I had to disrobe from the waist down.  They said they would be preparing the instruments while I did this.  I waited for 15 minutes, which freaked me out because I wondered just how many instruments they had to prepare! 

Then, a nice radiology tech came and got me and took me into the x-ray room.  She thoroughly explained everything to me.  I told her I was one of "those" patients who had read about it on the internet.  Although she didn't outwardly do it, I could see she wanted to roll her eyes.  I'm the same way with my patients and families!  Then, I met the radiologist PA before I had to take off my scrub bottoms which was a very nice touch.  We got to shake hands before his hands went into the unknown.  I was also very nervous about having a male radiologist because I've only dealt with female OBs and NPs.  He was very nice and gentle, I have to say.

Here is the procedure for those who want to read on:

There were no stirrups.  I had to just keep my feet on the edges of the x-ray table.  The radiologist cleaned the outer area with betadine, then inserted the dreaded metal speculum.  He then used more betadine swabs to clean my cervix.  Up to this point, it was pretty much like a pelvic exam.  Then, the catheter was inserted.  Apparently I have a tilted cervix, so he had a little trouble getting the catheter through my cervix and up into my uterus.  At this point, I experienced mild cramping.  I gripped the sheet underneath me, but it was nothing to mention out loud.  The tip of the catheter (the balloon) was filled with air so that dye wouldn't leak back out.  This part caused a little more cramping, but still bearable.  There was just a lot of pressure-type feelings down there, not really pain.  The speculum was then removed.  He then injected the dye through the catheter which caused moderate cramping.  I laid on my back for about 10 seconds, then he had me rotate onto my left hip and then my right so that the dye would spill into both fallopian tubes.  I was able to do this with still moderate cramping.  The whole time, I was able to watch the dye flow on the monitor.  It was pretty cool!  The tech in the room helped the PA take pictures and she gave me emotional support when the cramping was at its worst.  I just took deep breaths and gripped the sheet.  Back to supine position, he deflated the balloon, pulled the catheter out and it was done!  They let me "catch my breath" for a minute, then he went over the images with me.  That was super nice because I don't have to wait for 2 weeks until my follow-up appointment to know preliminary results.  I then sat up slowly, didn't feel any reaction to the dye thankfully, (light-headed, dizzy, nauseous, etc.), hobbled in the bathroom and let a lot of dye drain out of me.  Then, I was given a hospital-sized pad (reminded me of when I was 12 before I could use tampons!), and sent back to the dressing room.

It was a very positive experience.  Everything was explained thoroughly, everyone was gentle and made sure I was okay throughout the whole procedure, and the cramps were nowhere near as bad as my Day 1 cramps.  Granted, I did not have a blockage.  If you have a blockage, I hear that's where the cramping can get severe. 

The results: I have a tilted uterus, which doesn't mean I can't get pregnant.  We just might have to be creative in positioning.  My left tube had somewhat of a polyp but dye was still able to flow through.  My right tube had narrowing, but again, dye was able to flow through.  So, there's no real reason why we shouldn't be able to get pregnant from my standpoint.  Yay!      

The Sample

I went to my annual with my Women's Health NP last week.  I mentioned that it had been over a year of trying to conceive, and that I had an appointment next week with the OB she works under.  She suggested we get things going faster and have test results ready by that appointment.  After looking through my lab results ordered by my thorough rheumy and nephrologist, she decided that was sufficient for my testing right now.  So, she gave me a cup  for Charles and instructions.

I had images flash through my mind of Charles having to look at porno magazines in a little "cubicle" along with a few other guys in the same room who were trying to give the same sample.  I was relieved to hear that we could obtain the sample in the privacy of our own home!  The only rule was that we had to get it back to the hospital within 60 minutes.  Game on.

The day finally came when we both had time off together and the lab was open at the same time.  We procured our sample (haha), and had to get past my mom who was sitting at the kitchen table.  It seriously felt like I was a teenager who was sneaking around!  We concealed the specimen cup in Charles' jacket and told her we were going to run errands.  It's not like we are hiding trying to conceive, but it's awkward to just say, "Well, I just helped Charles ejaculate while you were eating breakfast, and now we're going to give a cup of his stuff to the hospital."

We made it to McKay-Dee, and ran inside as fast as we could because it was raining hard.  We got through registration which took longer because there were so much personal information that had changed since the last time Charles had seen doctor.  Finally, they asked for the insurance card.  He gave the lady his Altius card.  The look on her face changed uncomfortably.  Then it hit me.  Intermountain Healthcare isn't an in-network hospital/provider for Altius.  Duh!  Charles has a difference insurance than I do, and I hadn't even thought about that!  She suggested we go to Ogden Regional Medical Center.  We ran out of there as fast as we could, knowing we had about 30 minutes left for the sample to be usable.

We flew on the road to ORMC, went through their registration, watching the clock tick away as we encountered all the same information questions that seemed to take FOREVER.  We had 20 minutes left. Then, we had to wait for the lab tech to come back to the lab because she was drawing blood elsewhere in the hospital.  "Not bigger, just better" is their slogan?  Yeah right!  One lab tech for the whole hospital on the weekend?  Are you kidding?  She took one look at our papers and simply said, "We don't do that here."  Whaaa?!?!  Are you kidding me?!  She wasn't.

Charles was ready to give up.  But I wasn't!  We would have had to wait 3 whole days before Charles could give another sample, and that would be too late to get results next week.  We had 10 minutes left.  So, we got back in his POS (piece of special) car, and by some miracle, it went from 0 to 40 in just a few seconds!  That never happens!  We made it back to McKay, I ran inside first, not caring about who saw our specimen cup of swimmers.  I rushed into registration, looked extremely anxiously at all the registration people and finally someone called our name.  I threw the sample on his desk and said, "We have less than a minute for this sample to be looked at under the microscope, and there's no way I can redo it today!"  Charles walked in and went bright red!  I'm a nurse; I don't care about who sees what bodily fluid.  If you don't want to look at sperm, poop, blood, mucous or anything else that can go in a specimen cup, then don't work in a hospital.  The nice registration man printed out the lab form and sent Charles to the lab with his cup of swimmers while he finished the process with me.  If he was embarrassed, he didn't show it.  But that would've been kinda fun to mess with him if he had been! 

The sperm definitely went on a wild ride, and I hope they survived well enough to be examined accurately!  I guess we'll see when I get results tomorrow! 

 

Moving On

Wow, so much has happened in the past 6 months! Charles had a friend at work (at Murdock Chevrolet), Brandon who decided to get more into his real estate endeavors and so he quit his job at the dealership. He was very persistent in asking Charles if he wanted to sell our house, and I finally gave in to talking with Brandon and seeing what we could get out of it. Our basement flooded in May 2013 thanks to old sewage lines, and that was a huge factor in deciding to move. Ask anyone before that date, and I was dead-set on staying in my 1947 childhood home in Ogden! O-town 4-ever. :)


So, he came over and met with me, Charles and my mom. We wondered what homes with mother-in-law apartments would be like, and if we could find one where the apartment is to the side of the main house (instead of in the deep, dark basement). We went to look at about 5 homes and were not impressed. Some were way too big for the 3 of us, some had little kitchenettes instead of a 2nd kitchen, and some didn't have parking space for all of us. So, we scratched that idea.


Then, we decided to look for houses in Clinton for just Charles and me. Brandon was AMAZING. He took us to see 6 houses every Monday for about 5 weeks. That is at least 30 houses that we looked at (plus 5 from before), and I wasn't particularly excited about any of them. Nothing matched up to my childhood home, and the yards were nowhere big enough to let my Ginny run around freely and chase her tennis balls. Moving wasn't looking all that appealing!


Then, my mom decided she could live in a basement if there was daylight and 3 bedrooms big enough to store all of her stuff! So, off we went to look again at mother-in-law apartments again! We saw about 6 houses that time, and finally found one we liked in Syracuse. We were ready to pull the trigger and make an offer, and my mom freaked out about the money. I don't blame her one bit though; I just wish she'd told us before we got our hopes up! My mom decided we needed to sell our house first in order to get enough money to make a good down payment on a new house.


So, then began the daunting task of cleaning and fixing up our home which my mom had owned for 32 years and had stayed in the family. That meant there is stuff in our house from the 1980's that is not mine and Charles'. It is incredibly overwhelming to clean out other people's stuff! Anyway, after 10 trips to the DI, and having overfilled garbage and recycling cans, we finally were able to put it on the market December 13th. We had no calls until early January, which was just fine with us to get us through the holidays. When Brandon's secretary called to ask if the first showing could happen, I cried the whole way to work. I didn't want anyone breaking into my house and feeling so indifferent about this house that meant so much to me! Don't they know that's where I slept on the floor my first night in America because my mom didn't have a crib? Don't they know my childhood BFFs and I played for hours in my little playhouse outback? Don't they know I practiced the piano for many tearful hours in the basement? But just as we walked through houses in Clinton and didn't care for the carpet or the yard and didn't think about peoples' memories, I'm sure the same thing happened with our house.


After that first showing, we stayed super busy with showings. We had about 2-3 every week, which definitely kept us on our toes with cleaning. I liked to vacuum before each showing just so I could tell where people had walked. "The vacuum lines never lie!" Finally, we got an offer at the beginning of February. Our house was listed for $115K, and they offered $102.5K. Nope. What an insult! Insult to our huge backyard, to the nice condition we had kept the home in since it is pretty old, to our upgrades, just everything.


Then, on February 24th, we got a full price offer. Brandon called and said we needed to jump on it that very day. After more crying on my part and much excitement on Charles' part, my mom signed the contract and we started the whole process. They just did the inspection yesterday, and they didn't find too many things wrong, thank goodness. That might've put me over the edge. It's an old home, and we have given it love! It has been well cared for! They are only asking for a new water heater and for the electrical panel to be looked at by a professional. Easy enough. It also helps that I facebook stalked them and they are a cute LDS young couple. I feel better.


So, here we are, waiting for their due diligence deadline to come next Friday. We will live with my mom until we find something we like with a mother-in-law apt. But turning those keys in and knowing I'll never step foot in the home I grew up in with my mom and sister, where my nephew spent his first 4 years and my niece spent her first day of life, and where Charles and I grew together as newlyweds for the past 4 years, will be the hardest thing I've ever had to do. I've never really moved, so please forgive the instagrams and the facebook posts of me being nostalgic and sentimental. Thank goodness we can take our memories with us.