Hematology

This morning I woke up to unsettled nerves.  Today I met with the hematologist to discuss my MTHFR and Lupus Anticoagulant and I was uncertain how this news would impact my life or the upcoming IVF protocol.  The appointment was confusing, provided a little relief, added a cause for fear of something I never imagined, and still I left with a few questions unanswered.

What I learned. The Lupus Anticoagulant syndrome is one of the most confusing blood disorders one can have.  The clotting antibodies that are present in those with Lupus Anticoagulant can come and go (show up for months and then not be present for some time before showing up again), individuals who have it can go years without any issues, is something that “just happens” and is not a genetic issue, the antibodies can be present in individuals who do NOT have the disorder (in almost 5% of the general population),  and it was first discovered in persons with Lupus (the autoimmune disease).   I also learned that it is not necessarily something that would require daily anticoagulants for the rest of my life.  Really, only for high risk situations like surgery, broken legs, pregnancy, and birth.

Although my original test came out positive for LA, it may not be conclusive and more blood was provided.  The hematologist feels I have some factors that point to LA but others that do not.  Further testing was needed and within a week I will know for certain if I do indeed have Lupus Anticoagulant.  Regardless of how the tests come back the hematologist wants me on Lovenox from at least the day of transfer through the first beta test (pregnancy hormone test).  He discussed that it is likely that he’ll want me on Lovenox through the last month of pregnancy, switching to a different anticoagulant 2 weeks prior to due date, and then for 6 weeks after delivery.

Here is where the fear comes in.  The 6 weeks after delivery hold the greatest risk for things like blood clots in legs and pulmonary embolism.  Women naturally develop increased clotting antibodies as their pregnancy develops.  If they didn’t women would die from blood loss during delivery.  So, a person who already has high clotting antibodies acquires more chance for dangerous clots to occur.  Blah!  Nothing is easy!

I feel like I’m rambling so I will call this post complete.

-R

Decisions

In our lives we make thousands of decisions.  Some effect the outcomes in your life, while others are trivial with little rippling effects.

In the past few months I’ve made my fair share of decisions, the largest was to embark on this IVF journey.  Together my husband and I have had to decide if we would go through with genetic testing (both to see if we are carriers of certain disorders and genetic testing on the embryos), complete the preconception blood work (This cost us over $1000, RE said we could wave it, and I almost did  Thankfully I didn’t as this is the testing that determined I have several blood disorders), and to ask for help from those around us.

Some of these decisions have been easy, some not so.  Some decisions have brought forth concerns I’ll have to address the rest of my life, but may have prevented unnecessary heartache over the loss of a pregnancy because my blood was overreacting to implantation or growth in my uterus.  Some decisions have yet to play out.  Some decisions I have yet to make.

My IVF protocol calls for Saizen, a human growth hormone, to help produce higher quality eggs.  It is used off label, and is not covered by insurance.  And I’ve heard that the FDA has banned the use of Saizen for infertility but I can’t find any information online regarding this rumor.

My question, and thus another decision, is this?  Do I need to take Saizen?  My AMH is 2.49, 2.5 is optimal, and from what I’ve read Saizen is typically used for older women, those with low AMH, or poor responders.  In the past I’ve had good response to ovulation stimulation.

I will be sending a request to explain the decision behind prescribing Saizen, but is it within my control to refuse this medication if I don’t feel it is necessary?  What if my RE doesn’t agree and chooses not to do the procedure?

If you have used Saizen for an IVF cycle I would love to hear your thoughts and experiences.

Here’s to making decisions and moving forward.

-R

Zero

In this journey everything has a price…everything except birth control pills that is!  I picked up my pills (won’t need them until the end of June, but the script was in) and the cashier said, “It’s zero.”  Confused, I got out my debit card and she said, “No, there is no charge.”  Huh?  I guess there is one thing my pocket-book will evade.

-R

 

In My Dreams

As the haze lifts on a cold spring morning I see you run out the door giggling and scrunch your shoulders around your neck as the dog follows behind licking your ears.  The grass is slick with dew, the sun peeks from behind the clouds, and everything is as it was meant to be.  A smile crosses my lips and my heart soars with unimaginable joy.

Sadly, this reality ends the instant my alarm sounds off.

In my dreams you are perfect, I am happy, our family is complete and my life’s mission has been fulfilled.   In my dreams there is nothing that has not been healed by the love your parents have for you.  In my dreams the words wait, challenge, and infertility are non-existent.  In my dreams everything is right in the world.

I pray every night that someday these dreams will become my reality.  I pray that I have found the right path, the right doctors, and the right support.  I pray my wait is almost over.  And I pray that someday I’ll hold you in my arms as I help another person deal with the injustice of this all.

-R

Acupuncture

As I lay face down with needles in my back and calves and mini electrical currents pulsating, I found it difficult to keep my mind on all the negative things forcing their way into my life.  Strange how in one instant I was thinking about how my new-found blood issues would impact my life and the next moment I am in a state where there is no thought.

None.

Body heavy and mind eerily still.

As I came back to reality shortly before my acupuncturist came to remove the needles I was struck by the realization that this, however “forced” it felt, is exactly what I need. I need time to turn everything off and not think about what medical issues I face, how I am going to come up with the money needed to pay for acupuncture, work, or any of the hundreds of little issues that arise each day.

For those of you on similar journeys as mine, I highly recommend acupuncture both as a healing tool physically, but mentally as well.  Currently I see practitioners (both at the same clinic and with like training) who are specially trained to treat infertility issues.  Jane Gregorie and Merry Reasons at Acupuncture Denver are AMAZING!  Kind, thoughtful, knowledgeable, and truly have your best interest at heart.  If you live in the Denver area, make an appointment.  If you are not in the area, try checking the Fertile Soul’s list of acupuncturists who follow their treatment methods.

With the help of Merry and Jane I am hopeful that my uterus/blood flow issues will be resolved and I’ll be in better place as it relates to stress.

-R

 

Yet Another Shove

Today brought a variety of emotion.  Relief to begin acupuncture, and with that some much-needed relaxation after a day of not so happy news.  Yet another shove to my dreams.  My lab work from the 11th came back and I had two abnormalities:

Methylenetetrahydrofolate reductase (MTHFR) – A mutation in the methylenatetrahydofolate gene that prohibits my body from absorbing folic acid (among other things) and can lead to complications during pregnancy (placenta disease, preeclampsia, recurrent miscarriage, and chromosomal abnormalities) .

Lupus Anti Coagulant – Basically a blood disorder that causes blood in your veins to clot and lead to things like pulmonary embolism, stroke, heart attacks, and blood clots in arms/legs.  It also causes recurrent miscarriage and problems with implantation.

That’s it…two more hurdles to overcome.  I have to make an appointment with the hematologist this week so that I can put a game plan together, not only for the IVF cycle, but for my general health.  The only silver lining that I can see is that I am finally at a clinic that is thorough and honest.  This may have never been found at my previous clinic.  For that I am grateful.

-R

Thank You For Being A Friend

As a child, my girlfriends, sister, and I would giggle about silly things, dance to Janet Jackson, spend hours playing house, and cried because our current “crush” didn’t feel the same.  There was never any pressure to say or do the right thing.  Life simply happened, and there were few troubles worth our concern.

As an adult, I still giggle about silly thing and dance or sing to songs from our childhood.  The one thing that has changed is the fact that more often than not, those troubles that are worth my concern have not been shared and few requests to speak on them are offered.

Not long ago I was presented with a single request – What can we do for you during this time in your life?

A seemingly easy question that does not live up to its outward appearance.

There are times that I know exactly what I need – a hug, a smile, a chance to share how I feel about what has just transpired.  And there are times I’m not sure how to make it through the next 60 seconds without breaking down.  In those moments what I need most is to allow those emotions to take hold and know that you will stand by me regardless of how I handle myself.

The following list is ways in which I feel supported, loved, and understood.

• Just Ask – If you are curious about how I am doing, how things are going, or what is happening with our schedule PLEASE ask.  There may be times that I am unable to share because of how I am handling things, but I will tell you I am not ready to talk about it and will get back to you once I’ve dealt with my emotions.
• Want A Hug? – Sometimes this is the easiest way for me share my thanks and my emotions.  I don’t have to talk, and I can cry or laugh as my mood dictates.
• Text/Call – Text or call with questions, thoughts, etc.  Little texts really do brighten my day.  And you don’t have to just text/call as it relates to my IVF journey, it can be for simple, daily living.  Life continues even though I sometimes feel stuck on a treadmill – running for miles but never getting anywhere.
• Make Plans – Sometimes the best thing for me to do is get away…mentally.  If you want to hang out, give me a call.  I have a lot on my schedule, but I am SURE we can work something out!
• Offers – Several friends have offered up items for our yard sale but have all shared that they were afraid to mentioned that they had items for me for fear of hurting my feelings or offending me.  This would NEVER be the case.  Any form of monetary support is GREATLY appreciated.  I understand that most people are not in a position to donate to us in the form of cash, and that is 100% fine.  I do not expect people to do so.  So while not necessary or expected, it does help, any way it’s presented (If you want to donate cash click here, if you have items for a yard sale, message me).
• Share My Story – Tell people about my blog, about me, about this unfair hand I (as well as thousands of others) have been dealt.  With awareness will come understanding, and hopefully change.

Please understand that in writing this post, I am opening a door to a slew of questions I may not be able to answer.  If your question is one of those please don’t stop trying to show your concern/support.  If and when I am ready to address the issue I will let you know.

Thank you for being a friend, and already providing love, support, and concern.  It is a light in this journey!

-R

Nausea and Sleepless Nights

Stress is an evil hard to evade.  And in this journey through infertility, my share is greater than most.  When we meet with the embryologist he informed us that during our cycle I would need to avoid stressful situations.  Ironic.  Infertility in itself shuttles stress towards you.

The past week I’ve found myself having difficulty eating because nausea has found a semi-permenant place in my belly.  Or in lesser occasions, quite the opposite where nothing seems to satisfy.  Each night I fall asleep quickly only to find it interrupted by fearful dreams and a restless body.  Seems stating the obvious is silly.  Stress has snuggled up close to me and is here for the long haul.

My job is to find things that can help alleviate that stress.  I hope this plan will work!

• Work – One more week and I will have a few weeks off before having to start ESY (half days, 4 days a week…not nearly as stressful as the regular school year).
• Work Out More – This is hard when you are emotionally drained.  BUT, I do know that it helps and I always feel better when I’m done.
• Start Acupuncture – While this brings about $ stress, I’m hopeful that the good will outweigh the bad
• Start Meditation – I have my old Circle and Bloom Natural Cycles (see links on sidebar) meditations and will do those until my IVF cycle begins.
• Word Therapy – Posting here really helps me release some of the emotions that I normally would push down and try to ignore.

Ready to move on from nausea and sleepless nights!

-R

 

IVF Calendar

There is less than two weeks of school left before I close up my classroom for the summer.  As I try and prepare for the work I am scheduled for this summer, and the job of preparing my body for a baby, I’ve become a little overwhelmed.  In hopes to help me wrap my head around dates, timelines, and medications I created an “at one glance” type calendar that encompasses the entire summer and IVF timeline.  I hope it helps!

-R

The Right RE

Over the past 6 years I’ve had a lot of time to learn more than I ever wanted to learn about reproduction.  Never would I have thought it necessary to know that when selecting the “perfect” egg it needs a little bulge, signifying that the extra 23 chromosomes from the 46 an unfertilized egg contains are being pushed out proving ready for fertilization.  Trivia that most people will never find value in…but for me that little bulge signifies everything.

Most of what I know today has been learned through trial and error.  Though, too many errors than I care to remember.  If I knew 4 years ago what I do today I may be in an entirely different place.

Most noteworthy lesson?

Trust your gut when it comes to your RE.  They are not all created equal.

This I learned the hard way. The first time I meet Dr. X (my old doc) I was nervous and uneducated.  To this day I’m still not sure how I felt about her that day, but she took my insurance and specialized in reproductive endocrinology.  We did lots of testing, I had surgery, and we started with medicated IUIs on month later.  Each month my meds increased, we continued with IUIs.  All this without seeing my RE after my post surgery meeting.  I think it safe to say that my husband hated Dr. X from the start.  I just pushed aside any doubts I had because I wanted a baby.

Needless to say, after 5 IUI cycles, and no baby, we stopped going to Dr. X and did things on our own for a few years.

In March 2012 I found Conceptions Reproductive and Dr. Bush.  I had my files transferred from Dr. X’s office and came into my consult with Dr. Bush ready to do an IUI cycle in his clinic ASAP.  When I came in for the consult I was floored by the information Dr. Bush presented me – straight from my files forwarded by Dr. X.  My hubby and I had issues, major issues that were NOT ONCE shared with us!

If Dr. X had accurately shared the results of my blood tests and my husband’s semen analysis I would not have endured as many IUI cycles as I did and the money for our IVF would have been saved and spent.  And today I would be changing diapers.

This journey is full of crossroads, dead ends, and one-way streets.  Sometimes you have to drive backwards in order to make progress moving forward.  There are no words to describe how hurt and angry I am with Dr. X, but thankfully today I have the right RE.  And I pray each and every night that, despite all our issues, he and his team will help me bring home my baby.

-R