Moving On

Near my hometown, there is a wonderful state park with a natural spring where clear water bubbles up in a serene, aquamarine pool before rushing down rocks and joining the river.  Walks here are so calming, so nostalgic.  When I go home, I always make a point of visiting my favorite spot on the bank and dipping my toes in the water with close friends and family.  At first, it is shockingly cold.  But eventually, we all plunge our feet in, seeing who can leave theirs in the frigid water the longest.  Indeed, by the end, all feet are quite numb!

I suppose you could say we have one foot back in the water, very cautiously dipping it in.  Just as that water back home, it is shockingly cold and even somewhat uninviting.  Still, I know that I have to plunge in.  While I am hoping this plunge doesn't make me numb, I am already feeling it's effects.

Effects, that is, of just dealing with our infertility again after such a carefree break.  Since our whirlwind of events in August, we have been on a break, an amazing break.  I had no idea how liberating time off could be.  Still, it is important to move forward and so we are beginning to seriously research our options.  It feels good, but in the last few days I have definitely been reminded of the ups and downs of infertility.

Monday I was thrilled, knowing that this month would be a month of gathering information, discussing all our options, and moving towards a decision.  I eagerly scribbled the important dates in my datebook--October 1st - first adoption information meeting, October 24th - appointment with recommended RE, October 29th - adoption fair.  I felt so on top of everything, excited about our options, excited about the future.

Tuesday I was less that thrilled after a night of terrible dreams all revolving around infertility and being in the hospital due to OHSS--past and future.  It was an awful way to come back to the world of infertility. It was the first time in a long time I've needed to fight back tears in the middle of the day, the first time in a long time I felt myself just staring off and zoning out during meetings.

Wednesday I was simply feeling the weight of it all.  While I am thrilled to be exploring our options, at times I am feeling a bit scared of jumping back in.  It was so nice to push it all to the back of my mind for some time, as if I had finally come up for air.  Luckily, today my students were amazing, which made a smile stick to my face!

As our first big meeting is this Saturday and is focused on adoption, adoption is now at the forefront of my mind.  Honestly, I have been leaning towards adoption for months.  I just never felt like a pregnancy was really going to happen and in the near future, I still don't.  For whatever reason, adoption seemed like an easier choice.  Nothing about fertility treatments ever seemed easy to me.  It still doesn't.

But now we're really here, looking into adoption.  I am beyond anxious to find out how we could make this happen.  Yet, at the same time, I am finding that with opening this new door, this elusive adoption process has become real.  It's presence in my life brings up the real and inevitable emotions, hopes, worries.  And, though this has always been understood, it is as if I am truly realizing for the first time that it probably won't be the cake walk I fantasized.

I know this, I knew this.  Clearly.  None of this will ever be easy.  So we're dipping our feet in a little at a time.  I will cling to my autonomy from infertility for as long as I possibly can--clinging to the increased smiles and happiness.  I will bask in the light of more laughs with family and friends.  I will indulge in great sex and drinks at the end of long days.  I will be thankful for all that I have in my wonderful life, for the incredible support of my husband, for his love and the unbelievable way he has taken care of me throughout all that has transpired.  I will, we will, keep dreaming of our someday baby and be proactive about finding him or her.

We'll dangle our feet in, but I will not, I cannot become numb from all of this again.  Please remind me of this later if you notice my feet turning blue!

Release

I can't begin to explain how I have felt over the last few weeks, but I will try.  After the big scare of August, people would ask how I was doing.  I would always answer, "Physically, I am doing well, but emotionally it is a little hard with so much going on."  Every time I spoke these words, I believed them whole-heartedly.  But then, I began realizing that I kept saying them and I kept having days, even weeks with no major breakdowns.  In fact, I don't even remember the last minor breakdown!

It has been five weeks and three days since my release from the hospital and five weeks and one day since I realized I was officially not pregnant.  And I am doing fine.

Honestly, I can't remember the last time I was this happy.  The events of the last month have had an enormous impact on our lives present and future.  Namely, at this point, they have launched us into a forced break.  And with that forced break I have gone all out--All out trying to escape from infertility that is.  As it took me awhile to be get back on my feet and gain my strength, the first thing I cut out was all the meds.  With the Metformin having likely wreaked havoc on my liver, I have stopped taking the insufferable little pill three times a day.  Without it, I am now free of the nausea that used to rule my days.  With the knowledge that my ovaries are out of control for the time being anyway, I haven't been a stickler with my PCOS diet either.  I'm sure that cutting some things out could do me good, but it is so nice to be able to not worry about every ounce of what I am putting into my body, I think I just need this time.  In what is probably an absurd omission, I am actually not even taking my prenatals or fish oil supplements.  I know that this could be the absolute wrong choice, but I just want to be a completely normal woman for a bit.  And if completely normal means cutting these out in the name of no fish burps for a few months, so be it!

I am now exercising and not exercising however I please, doing what I like when I like at the gym.  There is no worrying if this is too much or too little, if this is OK in the two week wait, if I could be interfering with implantation.  While all of that worry is completely over the top, it is just what my head does, or DID.  We are going out more than ever, no longer tied down, consumed, and depressed by our infertility.  I am eating sushi galore as well as every other food I tried to cut out in case it would result in a miscarriage.  And we are drinking.  Have I talked about the drinking???  No, I am not a lush, but take a woman who has barely tasted alcohol in 15 months and she'll be a little giddy at the thought of a drink.
And sex?  Just sex?  Without the thought of doing this or that in hope of conception.  Ahhhhh.  Pure bliss!  An weekend day that consists of an early brunch turned late lunch getting tipsy off a bottle of wine on a favorite restaurant patio followed by some sensual pillow time and a long nap until dusk?  Yes, please!

I know this will not last forever.  We have big decisions to make and with each comes a good deal of stress.  There is little that is carefree about our fertility situation overall and I realize that there is a finite time that this happy-go-lucky view on life will stick around.  But while it is here, we have decided to enjoy it.  While we are not avoiding the question of what is next, we are not dwelling on it.  We discuss how we are feeling, throw out pros and cons of each option we have, and then put it aside and enjoy ourselves, our family, and our friends.

Here's hoping we can find ourselves lost in another bottle(s) of wine and each other this weekend!  Cue happy sigh . . .

Ovulating? What???

Again, I thank those who have left comments and advice in the last couple of weeks.  We are desperate for them as there just seems to be one big question after another.  And yes, I have another . . .

Yesterday, I began having great EWCM.  There was still plenty today so I decided to take one of the OPKs left in the closet just on a whim.  AND . . .

Yes, there was a positive, smiley face staring back at me!  What?  Is this even possible?  Can I even ovulate with my ovaries still twice their normal size and full of large cysts?  I am so confused.  Normally when I see this, I am jumping around in excitement and gearing up for some great baby-making lovin', but now I am just utterly confused.  I can't understand how this can be possible.  I haven't been cleared for exercise or sex yet, so it doesn't really matter.   But...do I just have sex???  I don't want to risk anything, but I go a little crazy at the sight of one of these smiley faces.  All in all, I'd just like to know what is going on with my body.  Every time I think I know, it throws me a curve ball.

So again, anyone???

The Case of the False Medical Records

Yes, false records.  In the midst of the million emotions that are flooding my mind right now, the issue of the false medical records keeps surfacing.  Clearly, it is the last thing we want to be worrying about right now.  You would think that we had enough to mull over, right?

After all the wonderful comments and personal stories that others shared with us (thank you, thank you, thank you!!!), we are convinced that I did not receive the best care.  This fact is magnified by the inaccuracies of the report made by my fertility nurse the day I went in doubled over in pain.  While some of the errors are very minor, many are not and do not paint an accurate picture of what occurred during the appointment.  Likewise, there is an error in the hospital records.  So, here's my list . . .


"Pelvic Pain began gradually 6 days ago and has remained at about the same level of intensity."
 Correction:  The pain had started 6 days ago, but had gradually increased so that every step hurt, every bump, every bodily function--all things that we discussed in length.  


"There are no aggravating factors."
Correction:  Perhaps this means something else I am unaware of in the medical world, but aren't all the things I just listed aggravating factors?  How about our discussion about pain during eating or intense pain in my abdomen during urination?  


"Given Percocet for pain"
Correction:  Vicodin


"Rates abd pain at 6 of 10."
Correction:  At that moment, yes.  Discussed how there are instances where the pain is at a 9 or 10.  Even wincing while drinking a dixie cup of water in front of her because of the pain.


"Normal gait."
Correction:  hmmmm....how do I not freak out about this one?  Normal gait?  Really?  I couldn't stand up straight, was walking at a ridiculously slow pace.  I even asked on my way out, so the pain meds might help me get around better?  stand up straight?  Her response:  Well, that will just take time. 


"Offered ultrasound"
Correction:  Yes, I was absolutely offered an ultrasound, but in this way. . . "We can do an ultrasound, but we already know what we'll see.  You're hyperstimulated."  We went on to ask her recommendation about three times, to which she repeatedly said she would not recommend an ultrasound.  


Instructions:  Schedule Ultrasound
Correction:  No such instructions were given.


Upon admittance to the ICU:  "Patient received fertility labs on Monday visit."
Correction:  My hemoglobin was checked.  Clearly not all that needed to be tested.  


It's a long one!  Most of these are from one report, one clearly false medical record made by the very Auntie Dumplings that I have trusted in for so long.  It is sad.  I don't mean to say that she purposely falsified the records in any way, but the paperwork is not accurate.

After hearing my OHSS story and looking over these records, so many people have told me I have a lawsuit on my hands, to go to the attorney general, to go after her.  I will not.  I could never do that to another person.  I dealt with her in my own way, albeit a very gentle way.  In fact, after I was discharged from the hospital, I called her and left a voicemail, rattling off all the scary test results and OHSS symptoms I had had over the last week.  After I hung up, my mom said, "I thought you were going to be harsh."  What's the point, I thought.  Yes, I wanted her to know everything that had happened.  I wanted her to feel a little guilty even.  I wanted her to make sure she gave better care in the future.  But it does not do me any good to be a bitch.  She called back and predictably apologized that this happened, saying (much like everyone else) that she had never seen such a severe case before.  It was nice to close out with her.  I told her I was canceling my appointments with her as I had to go to the other office for follow-ups already.  I told her that we needed time to figure out where we would go from here.  She understood and kindly told me to call her if I needed anything.  It was the most civil break-up I've ever been through and I wouldn't have it any other way.

Still, I do want my records accurate for the sake of myself when my records are transfered to another clinic and for the sake of the clinic itself, so that they are diligent about their record keeping.  The last thing I want is for this to happen to another person, but how will the extent of the problem be known or understood if the paper trail is littered with inaccuracies?

I am confused about where to go with this complaint.  Do I talk to the doctor I have now been seeing?  The office?  Most of the staff had no problem calling my Auntie Dumplings out and blaming this entire fiasco on her, but that is not an official action.  And I officially want this changed.

So, I turn to you again.  You were all amazing with the feedback on my OHSS.  Every little bit helped us understand a little more what happened here and what should have happened.  We are so thankful for the openness of complete strangers!  I want to move onto my life.  I want to address all the serious emotions I am having, to feel my way through this difficult time, to find where our path will lead next.  I do not want to be worrying about medical records.

So, any advice?

Still Shrinking

Just got back from my last check-up and I am still shrinking.  Today, the ovaries are a little over 5cm.  This is good news, as they should be around 2cm and are no longer larger than 20cm!  A small victory for the ovaries!  Much like all of you, the sonographer called out my fertility nurse today, just like he always does, saying he blames this on her and her care, even telling me that he doesn't want me going back to her.  Sigh.  There is a lot to think about with my case and what action we are going to be taking with everything that happened.  I'm sure I'll be exploring that more in depth as we pull ourselves out of all this wreckage.

Physically, I am feeling nearly normal.  My strength is back and I can work longer than one hour at a time.  I am walking at a normal pace, even zipping around if I am in a big hurry.  Breathing is fine and my liver tests have now come back completely normal!  The first week back to school meetings were a challenge as I struggled to find the energy to get through the day and the strength to get up and down out of a chair.  Still, every day I got a little stronger.  Feeling back to normal for the most part, I forget that I still need to be taking it easy at times and begin lifting and bending over.  I mean, I have a classroom to put together, you know!?!  By midday, the little devils are definitely reminding me that they are still quite tender.  The achiness and short, sharp pangs start coming.  They are nothing in comparison to what I have been through, but a reminder that I am not quite 100% yet.

image via google images

Today we go out of town for a family party.  While I am excited to escape for a bit, I am a little nervous of the drive, simply because of the past.  So much jostling for several hours in the car may not be good for these sensitive little ovaries!  I just hope the ride isn't too painful and that once there, I don't have to paste on a smile and mask my discomfort.

Seriously, worst August ever!  But maybe, if I get there and back without too much of a problem, a nice weekend at a lake will help start my September out right!  Ahhh....this picture is already transporting me to serenity.  Here's hoping this works out well!

My OHSS - Mismanaged or "Normal"?

image from google images

During my OHSS ordeal, I spent the half the time I was calling out for help be told that this--all my symptoms, pain, weight gain--was "normal".  After five days, when I actually received an ultrasound, the entire office was spun into a frenzy.  Obviously, this was not normal.  But I still question whether this was a result of gross mismanagement or if this was a normal protocol that my body just decided to rebel  against severely.

Here are my numbers from the days I was monitored.  Any input on what you think may have happened would be very, very helpful.  This being our first injectable cycle and the response being so severe, we are not only new to this and the relative norm of such data but also worried about going forward.  After my liver enzymes were off, I also wonder if this is linked to the Metformin or OHSS.  Info you have on Metformin and if you get regular liver tests while on the drug would be helpful as well.  Thank you for all your input that will help us find our way!

Patient History:

PCOS

 Meds: Metformin, basic fasting glucose test prior, no other test before or during

1 cycle on 50 mg Clomid -- no response, cycle canceled

1 cycle on 100mg Clomid -- no response, cycle canceled

This cycle:

Day 1 baseline ultrasound - quiet ovaries, cleared to begin

Clomid 100mg days 3-7

6 Gonal-F shots 150 iu days 8-13

Ovidrel Trigger day 14

IUI day 16 


Monitored Appointment Data
Friday:

Right ovary follies:  14.5mm, 14mm, 12mm, 9mm
Left ovary follies:  2@13mm, 8mm
many smaller
E2:  824.6

  
Monday:

Right ovary follies:  18mm, 14mm, 2@11mm, 10mm, 9mm
Left ovary follies:  2@17mm, 14mm, 13mm, 11mm
many smaller
E2:  3621
                                                                                                                                                                 
Tuesday:
Right ovary follies:  20.5mm, 2@15mm, 2@14mm, 2@12mm
Left ovary follies:  18mm, 17.5mm, 2@15mm, 13.5mm
many smalller
E2:  3343
Trigger shot


Thursday:
IUI
40-60 forward moving/hpf

I am fairly blown away by some of these numbers, specifically the E2 jump by Monday.  Even more so when I read that normal E2 during the ovulatory phase is less than 500!  But, all in all, I am not an expert in fertility medicine.  I don't know the norm.  I don't know what data should really look like or what red flags would constitute the immediate canceling of a cycle.  I just know my gut feeling--that this wasn't right.  

Thanks for any and all input.  Every little bit will help us figure out where to go from here!

My OHSS Story - Part V

. . . The tests that followed, the measuring, the weighing--all confirmed again that I was far beyond severely hyperstimulated.  Ovaries are supposed to be the size of eggs, about 2-3 cm.  Severe hyperstimulated ovaries are the size of grapefruits.  My largest ovary was, in hospital analogies, the size of an IV bag.  The largest measurement was 20.5 cm, with an estimated volume of 1170 mL.  The follicles, or cysts, we all know are ideally measured at 1.8-2.3 cm.  I had numerous cysts covering my ovaries, the largest measuring 5.5 cm.  Unbelievable.

The fluid had begun to move into my lungs, thus the trouble breathing.  Because of the fluid, my lungs weren't able to expand as much as they should.  So, when I was feeling like my breath was cut off half way through my inhalation, it was.  The lungs had hit a wall and could expand no further.

For the entire time I was in the hospital, my belly was measured and I was weighed daily.  Until the very last day, their long tape measure couldn't even come close to fitting around my hard, swollen belly.  The fluid was nearly all in between my ribs and my knees.  I felt huge.  I looked huge.  When I could finally get up one day and shower, it was a scary sight to see my body.  I had sent my husband out to get some nightgowns so I wouldn't have to wear those lovely hospital robes.  Though I would normally get smalls, I told him to be sure to get mediums for me with the swelling.   In mid shower, I was tearfully yelling out to my mother, "Please call!  Tell him to get large!  Tell him to get large!"

When all was said and done, in less than a week I gained 27 lbs, all falling between my ribs and knees.  It was scary.  So scary.

Now, I am on the other side of this nightmare.  My ovaries began to shrink on Monday.  Though there was still a significant amount of fluid affecting my lungs and my liver enzymes were off, they decided I could be released from the hospital with regular monitoring at the clinic.  The first day home was the hardest.  It was exciting to be home, be able to sleep in my own bed, but it was also misleading.  I was home, I could do more, right?  Wrong!

The night we got home, I started bawling on the sofa all because I wanted a water.  I had been getting up and down, getting drinks for a few hours and it had begun to take a tole on me.  Even getting situated was hard.  Here at home there were no nurses to bring you nice, cold drinks whenever you wanted, I couldn't pull a tray right up to my mouth in order to eat my food, there were no bars around to help me pull myself up, and (perhaps the most difficult) whatever I sat on was not mechanized for easy resituating!  So I went through a box of Kleenex and bawled my eyes out.  Even the glasses and plates that I had to lift at home to eat and drink were heavy and causing strain.  How pathetic!

It has been a struggle to learn how to deal with my still enlarged ovaries over the last week or so.  There are still times when my ovaries ache or seem to cramp up, though the sharp, debilitating pain is gone.  I have been walking slow and eating smaller portions, in order to not upset my insides.  Now, with movement coming easier, when I forget to take such precautions and take it slow, my insides rudely let me know!  I am still getting my stamina back.  Having just returned to work as a teacher, the days are very long and I usually head home for the lunch hour to nap.  It is a wonder I can get back up and get through those long meetings that follow.  But when I come home, I collapse again, literally sound asleep in less than 5 minutes.  Breathing is easier with the fluid subsiding and while I am still shrinking bit by bit, I have lost 22 of those 27 pounds I put on.  Follow-up ultrasounds show that the ovaries, though still grossly enlarged, can actually be told apart at this point and continue to shrink.  My liver enzymes are still a bit off, but continue to normalize.  My body is generally more sore all over as I can't stretch or exercise as I normally do.  Indeed, without my back exercises, my back is a mess and causing much pain!

Hubs says I am shut down until after Labor Day and while it is hard, I suppose I agree.  When I think about it, this will mean that I have really been "shut down" for the entire month of August.  I have missed out on so many fun plans this month with friends and family, but I know my health is the most important thing.  Normally, I would push myself far beyond what I should, but with the risks so high--torsion or rupturing of an ovary--I know that I can't.

I feel very lucky to be on the other side of this ordeal intact.  I know that OHSS can turn out so much worse.  With the size of the ovaries being so mind-boggingly huge, I am just as shocked that it did not get worse, that I am intact, and that more than likely there will be no real long-lasting residual effects.

The emotions are pouring out of me in so many ways, on so many fronts.  But for now, I am spent.  I will have to explore those emotions later and nap now!  Goodnight!