Saturday, April 30, 2011

And so here is my story (so far)

We have always wanted a bigger family. So, we were ecstatic that we became pregnant with both girls the 1st month of not trying/not preventing. We thought it would always be that easy for us. Boy, were we wrong!

We decided in July 2007 to TTC(trying to conceive) baby Willi #3. We tried several months with no success. My OBGYN decided to do some blood work & found that I have a hypothyroid issue. The 1st month we got my thyroid level at normal range, we became pregnant.  We miscarried at 5 1/2 weeks (Oct 2008).  My numbers had started going down the drs gave me NO warning that I would miscarry (I found out after the fact that my numbers had gone down & they knew about it).  I felt blindsided!  We kinda blew this one off because 1 in 4 pregnancies end in miscarriage (m/c) so, it was just a fluke.  We were upset but got over it really quick.  Though I was upset about the way the drs handled my situation.  And then to top it off, they left me a message that they had to cancel my regular OB appt because the dr was going to be out of town & they would call the next week to reschedule.  Then, a week after the "canceled" appointment, I received a letter from them saying they were going to charge me for a missed appointment.  I decided it’s time to find a new dr!

I had my annual with a new dr & I discussed my  TTC journey.  She said that they have a wonderful infertility specialist in her office that she will refer me to see.  Well, now we’re talking!  Maybe we will get somewhere now.

We just kept pressing on, I have been temping (this is where you wake up the same time every morning & take your temperature- your temps can tell you if you have ovulated & if they don’t drop, could mean you are pregnant). This is the link to my chart if you want to follow (though at the time of writing this, it's not updated since I have to wait to continue to TTC):  Some tests were run & I was instructed to keep doing what we were doing.

We became pregnant again in July 2009, but we miscarried again (on Bryan's birthday) at 5 1/2 weeks. We were told, it was just a fluke because having 2 m/c's in a row is rare, so just continue what we are doing.   As a precaution, I was put on 50mg progesterone suppositories & was told that will take care of the issue.

I went to see an endocrinologist, thinking the issue had to do with my thyroid since I was diagnosed with hypothyroidism after I had Valerie.  How could I possibly have 2 healthy babies & then all of a sudden everything changes?  My thyroid issue was the only new problem since I had Valerie.  The endocrinologist flat out told me that my problem is NOT my thyroid, it’s my weight.  I’m “too fat & I need to get my lazy butt up & work out daily”.  Too fat??!!  Really?!  I know women who are obese, I’m talking 250+ lbs who get pregnant & have healthy babies & you’re going to tell me that at 150, I’m too fat to carry a pregnancy to term?!  I don’t’ think so!  Not to mention she is a thyroid dr & she made me undress so she could feel my breasts.  As I was undressing still, her nurse just walks in!  So, all this really pisses me off.  She really did nothing to help me; all she did was insult me & make me uncomfortable.  What a waste of time!

I got in contact with my infertility dr. in April 2010.  We did an HSG(they insert dye into your uterus & look to see if the dye comes out of the fallopian tubes- if it does, the tubes are all clear, if not, you need surgery to correct the issue), everything was clear & we started clomid in May.  Clomid makes your body do what it’s supposed to at the time it’s supposed to.  Ovulation timing is changed & how my body reacted after I ovulated was changed for the better.  That stuff really works!!!

Well, 3 months of clomid & we became pregnant again in July 2010 (I saw an acupuncturist the day before I found out-so I can't say that was the reason, but hey, I tried it)  & miscarried again at 4 1/2 weeks. They increased my progesterone to 100mg & the drs. (2 of them on 2 separate occasions) said, "wow you really have bad luck" & no further testing is needed. I refused to take that as an answer, “bad luck”. I demanded to have more tests run. They refused until I literally BEGGED repeatedly (I was the squeaky wheel). They broke down & tested me for MTHFR(I specifically asked for this test as several ladies on my message board had it & I was not ever tested for it). I tested positive with 2 gene mutations. I was told that no further testing needs to be done & to correct this I would need to take additional folic acid, B-6, B-12, & start a baby aspirin regimen.

Sept.-I still begged for more to be done. They agreed to send me to an RE(reproductive endocrinologist). I was SO EXCITED, & couldn't sleep.   This is it; we are finally going to get some answers. Everyone talks about how wonderful their RE is & how they are so understanding & helpful.   We went in to see her.  She reviewed my file, & she said, "I'm sorry, you just have bad luck".   That was it!  What is this some kind of conspiracy?? We walked out of the office & into the hallway & I just lost it.  I turned to Bryan & just started crying.  This can’t be it for us, there HAS to be more.

In Oct., the Infertility dr said it's time to either start doing IUI(they would take a sperm deposit from Bryan & inject it directly into my uterus) or move on to different meds. We agreed to start doing IUI(anything infertility related is NOT covered by our insurance so all of this will need to be paid out of pocket).   We decided to start in December.  The 1st month didn't work out as they are only open certain hours on Saturdays & closed on Sundays. Of course, with my luck, I would ovulate on Sat.- they had 1 appt at 10am (it was 9 before the moron figured out which location to direct my call to when I had originally called at 7:30am). The facility they were available at was over an hour away(they only have 2 facilities that do the IUI- & they alternate Saturdays, in this case it was the facility that was further away), I still had to drop the girls off at the sitters, pick up Bryan & drive out there! There was no way we were going to make it on time, so it was scratched.   What a rush, but I come up disappointed, once again.

With my luck, I was afraid that would happen, so that Monday I had an appt with a new dr I had set up a few weeks prior. This dr (dr. Stokes) is only a block from my house & performs IUI in his office! So, I told him my history, he was very understanding & seemed like he would be proactive. He didn't change any of my meds or vitamins, didn’t order any tests.  He said he is available 24/7 to do the IUI, so this cannot go wrong for us.  His receptionist insisted she call our insurance company to talk to them about covering our IUI after I told her we would be paying out of pocket.  I told her that I guess it couldn't hurt but I already know the answer.  She called a couple days later to inform me that they agreed to consider paying for some if not ALL of our IUI costs.  WOW!  I'm in shock, this is great!

In the meantime, I asked my primary care physician if I could get a referral to see a hematologist.  She said that she didn’t even know what that was.  After explaining that it was a blood dr., she said that she didn’t see how that kind of dr would be able to help me.  Grrrrrrrr

We did the IUI the next cycle & on Jan 24th, 2011 I found out I am pregnant again! Unfortunately, I had to beg him to do my HCG & progesterone levels. Here we go again, he's literally just sitting & waiting to see what's going to happen.   It’s just so frustrating.  I thought he was going to be proactive.

Well, my HCG levels went like this:
614, 707, 562(they are supposed to double every 48 hrs). So, I know what this means. The thing is....the dr didn’t even call to tell me the results yet! Yeah, they take 2 days to report them for a test that takes just an hour to do. So, I went to the hospital & filled out a form & they released them to me the same day I did the test!  I'm so beyond frustrated at this point. It seems I can't get anyone to listen to me.  I obviously need additional tests done, but all the drs think I just have bad luck.  I can't imagine that if this was happening to the dr or a drs loved one that they would continue to let them m/c like this. This is inhumane, how do they sleep at night??!!  I was  basically waiting to miscarry.

I m/c’d on Valentine’s Day.  At that point, I think it’s all over & I began grieving & trying to move on ( I sank into a bit of depression).  We went to Kalahari for a little vacation (we booked it in Nov. or Dec.).  The last day we were there, I could tell that I had contracted a UTI(urinary tract infection).  That night I had severe pains in my abdomen & near my right ovary area.  I figured the UTI was just moving into my bladder.  I called my insurance advice nurse line the next morning & they had me talk to an OBGYN.  She wanted me to take another HCG level draw as well as test for the UTI-I went in that day to do the tests.  The morning after that, the OB called 1st thing.  She said that the last blood draw I did for HCG came back with some odd numbers (they were still going up, not down) & that she wanted me to do an ultrasound ASAP.  Here, I’m guessing that not all of the pregnancy tissue has made its way out because that has happened before.  It turned out to be an ectopic pregnancy in my right tube!  Confusion sets in.  I don’t understand.  How can this be?  I KNOW I had a m/c on Valentine’s Day.  I passed a sac that looked exactly like the other 3 indicating there was a pregnancy.  Wait a minute!  I remembered that severe pain I had just 2 days ago.  Does that mean my tube ruptured?  I could die from this!  The dr explained that she could give me a shot that basically would make the pregnancy dissolve but since I had the severe pains the other day it would be best to do surgery just in case my tube did rupture.  She was not available until later that afternoon and it would have to be at another hospital that is near Cleveland.  I really didn’t want to travel that far.  I wanted to be home.  So, she called dr. Stokes to see if he was available.  Thank God he was!  She said, do not pass go, do not go home, this is an emergency.  It MUST be done NOW.  You must go directly to the hospital.  I felt numb, confused.  I didn’t know what to expect.

Got to the hospital & did all of the registering, prepping, etc.  I didn’t know what to expect.  In fact, I was more scared of doing a laparoscopy than I was for having my c-sections!  I was so confused why this was happening to me & I wanted to talk to the dr. before going into surgery (as I knew I would be too out of it to ask questions after).  I was wheeled down into a waiting room & they sent Dr. Stokes in to talk to me.   I asked him if there was such a thing as getting pregnant with twins but one was nestled in my uterus & one in my right tube.  He said that yes there is such a thing.  It’s called a heterotopic pregnancy.  It’s VERY rare for this to happen & it looks like that’s what has happened to me.  He explained that if the baby in my uterus was still there, he could still do the procedure to remove the ectopic & the uterine pregnancy could go on to produce a healthy baby.  However, I already lost that baby so in my case, I lost twins.

After the surgery, I learned that my tube was saved however; I will be at risk for an ectopic everytime I conceive from ovulation from my right tube.  Recovery wasn’t bad.  I was forced to basically lay around for the weekend & take it easy for the rest of the next week.  Not easy to do for me because I am always moving around doing something around the house.  Bryan & the girls took very good care of me.

The depression sank in again very quickly.  It just really got to me that we lost twins (our 4th & 5th losses).
I removed the bandages from my surgery.  I only had 2 entry areas.  One in my belly button & one in my c-section scar.  Well, my belly button seemed infected.  It was sore & had some puss.  I got an appointment with Dr. Stokes office but it was with a different dr.  She walked in & asked, “So, you are here for pregnancy?”  WHAT?!  Seriously, I JUST had an ectopic removal.  Is it really that hard to look at the chart before entering the patient’s room?  Thanks for adding salt to the wound.

A few days later, March 10th, I had an appointment with a high risk/perinatologist  dr.  This gave me a light at the end of the tunnel.  Maybe he will find something the other drs couldn’t.  They told me to drink a lot of water before my appointment.  I thought this is odd.  I’m guessing they want to do an u/s but why?  There is nothing there to see, unless they want to get a good look at my ovaries & tubes.  I check in.  The receptionist asks, “Is this your 1st pregnancy with Dr. Khoury?”  WHAT??!!  You have got to be kidding me!  What is the deal with these drs!  “um, NO, I am here for recurrent pregnancy loss” I kinda snapped back.  Already, I’m feeling uncomfortable about this.  She calls me back & says that she is putting me in the meeting room since this is just a consultation.  Uhhhh, I drank all this water for a consultation?  Obviously they didn’t read the paperwork the insurance company sent them or listened to me when I called to make my appointment.  They all thought I was there for pregnancy. As I was waiting, a dr passed through the meeting room to the receptionist area.  I could hear him yelling at her. “what was that patients blood pressure?”  nurse, “I don’t know, I didn’t get a chance to take it”  “Every patient should have their BP taken when they get in their room, that patient is VERY sick & should have been wheeled down to labor & delivery already!” Uhhhhhhh, can we say it’s even more uncomfortable being here now??  Finally, my dr comes in.  We go over my history.  There are 2 things that he could see that I have not been tested for.  One was for a blood clotting issue(Antiphospholipid) & the other was for my chromosomes.  He will only have the Kaiser OB order the blood clotting test 1st, if the results are negative.

The results came back & were negative.  In a way, I kinda hoped they were positive so I have an answer.

I found a list of tests on a message board I accidentally found while researching heterotopic & recurrent pregnancy(I listed them on my page for those that would like to see it:  These are all tests that can be done to see if you have something that will cause recurrent pregnancy loss (RPL).  I went through the list & compared my medical records to it & there were several that I had not done yet.  So, I talked to Dr. Stokes about it.  I also told him that I think I have a blood clotting issue when I become pregnant or that my chromosomes have changed possibly from my MTHFR diagnosis.  I have never been tested for any blood clotting issues while I’m pregnant, only when I’m not.  He agreed to look over the list & determine if there is anything more we can do and to test me for blood clotting issues the next time I become pregnant.  I faxed the list to him.

A few days later he called me back to go over his findings.  The tests were listed in certain categories & basically if the 1st test in each category is negative, there is no need to test for the others in that category.  So, this explains why I was not tested for several things on the list.  He didn’t see any results for my chromosomes, so he will order those labs for me & Bryan.

I’m practically throwing a party at this point, the dr is actually taking the time to listen to me & try to help me understand things!  He didn’t blow me off as the crazy, persistent patient.  FINALLY I’m getting somewhere!

A few days later, I have another post op appointment with him.  He basically just went over what we discussed on the phone & talked about how we will be doing a HSG to make sure my tube is clear since we did surgery on it.  I got my labs for the HSG & also for my chromosomes test.

I took the chromosomes test on the 20th & I have my HSG scheduled for Mon. May 2nd.  If everything is all clear, we will start the clomid/IUI regimen my next cycle.

So, this is my story so far.  I will update as I have new events…… be continued.


  1. ((((((((HUGS))))))) Every time I hear your story Jody I get enraged and saddened. The insensitivity and incompetence of some of your doctors!!!!

    I pray your HSG goes well. I'll think of you on Monday!!!