Recovery

Mentally

It took me a while to wrap my brain around what happened and figure out how to write this post.
Dr. Potter felt very optimistic that he would save/repair the left side.  He did tell us that there's always a chance that they will find a surprise when they got inside.  My gut told me they were going to have to take both but my heart was stuck on the hope that it would be repaired and I'd have a shot some day at doing this the "normal" way.



When I heard the hospital staff talking outside my room, I thought well this sucks. I knew it.
After I'd fully come out of anesthesia I asked my recovery nurse to make sure I wasn't hearing things.
The nurse confirmed yes and then my loving husband told me the rest.

Dr. Potter met with him while I was sleeping.  When they opened me up the left side was considerably more damaged than the scan had shown.  They preformed another HSG to see where the dye would flood to double check the results.  The left end was completely sealed no dye could pass and it was extremely enlarged, to the point it was translucent.  The right side was able to have some dye go through but it was beyond repair, also being enlarged and blown out.  Imagine blowing up a balloon to the point where you could see though it and its almost about to pop.  If it had been left in there would be a serious risk of ectopic pregnancy and losing it anyway.  My uterus and ovaries look great though.

So this is the hard part, there is no more hope for one day thinking I'm late I might be pregnant or let's try to have another baby.  It will always have to be clinical, calculated, frustrating and Stinking Expensive.  My brain tells me "you couldn't get pregnant with your tubes anyway."  But my heart screams "this isn't fair, I don't want to pay for a child, I just want to be normal."

It took about 4 days to sink in.  There was the Ugly Cry, I sobbed in the dark and my husband rubbed my back and repeated "I understand".

Physically

When we left the hospital it was 3:30.  I slept the whole way home, was put in bed and woke up at 6:30.  Hubby had gone to pick up my meds and left my mom to babysit.  I requested tortilla soup and she delivered.  Funny how mom's are; she made sure I had my robe and slippers, pillows and a step stool to reach my high bed.

There were flowers, magazines and cards.  Lunch and Dinners brought.  Hot cocoa and RUM. Yes, my friends know me well.

My sister made me this amazing basket, it was so beautiful and pink.  I was genuinely touched and started sobbing.  Like uncontrollably. What can I say? It was a rough week.

I had two incisions in my belly button, one right above my pelvic bone and one directly over my right ovary.  They taped me up from here to kingdom come!  Like my entire stomach.  I was told to leave them on until my post op (a FULL week) and to sleep sitting up.  My anesthesiologist told me that they were going to blow up my abdomen with gas and it usually ends up trapped in the shoulders.  He was not kidding.  I had so much pain in my right shoulder it felt like someone was trying to rip my arm off.  What do you do when you cant move your tummy?  You use other parts like your back and arms to maneuver yourself.  Well every time I would move my arm it would shift that bubble and blind me with pain.  At some points I literally screamed.  It was way worse than the actual incisions!

They were just sore and itchy.  My bandages didn't last 9 days, by day 5 I was dying to take them off and let my skin breath.  Hubby used to be a EMT, he got me waterproof bandages and got me all set up so I could take a decent shower (which was Amazing).

When I had my post op Dec 10, Dr. Potter confirmed what happened in surgery and showed me the pictures.  He looked at my incisions, all were healing well but one.  Apparently my body was rejecting the stitches and pushing them back through my skin!  Frankin-stitches. He had to get his tweezers and pull it out!  It didn't hurt but it did freak me out.

He then gave me the A OK to proceed with IVF.  We met with Janet to get our list of meds and made a appointment with the financial person Julie.  We also had both our blood drawn for genetic screening, we will not be screening our embryos.  More big decisions ahead.



Salpingectomy....Farewell Fallopian tubes

The Surgery

Monday morning we made our way over to Hoag Memorial.  It was like walking into a hotel, marbled floors, elevator music and a swanky reception desk that let me know they were waiting for me upstairs.  Should have known better when they valeted our car. 

The wait wasn't to long before I was taken back to my tiny room, more like a stall to change into my stylish gown.  Everyone was nice and accommodating, with every passing nurse I got a new bracelet and recited the spelling of my name and birth date for accuracy.  My favorite was the no blood bracelet, the others were name tags and allergies, I even got a orange band to identify which side they were removing from!

After a while they let Hubby come back and keep me company.  We used the wifi and watched some Dr Who. Then I shut it off thinking "what if they put me out and I dream about something terrible and can't wake myself up?"  I was also extremely afraid of waking up during surgery and how badly a IV would hurt.  My mother in law suggested I ask for a IV nurse and anti anxiety meds.  

Well I struck out on the nurse but my anesthesiologist was fantastic! He insisted on doing the IV himself, talked to me through the whole thing and I have to say the worse part was the shot to numb my hand. He totally hooked me up on the anti anxiety and the next thing I knew I was waving good bye and lights out. 

Literally lights out, I had to remove my contacts (legally blind without them) it was blurry going into the hallway and I remember looking down at my hand that was burning like a hot poker and looking up at the lights whisking by. 

The next thing I know I'm touching my face and I hear a voice telling me to put my hand down and then physically pushing it down.  I still don't know what I was touching, maybe a oxygen mask? The next voice I heard was a man asking me what my pain level was, I mumbled 4 and he said it's ok your still sleepy I'll ask you in a little bit.  ...sleeping..... Moaning, it hurts....how bad? 7.....pain meds....it's dark and noisy and there's a man next to me yelling.  I remember blinking hard and asking if I was supposed to be waking up (trying so hard to wake up) or if I could go back to sleep.....sleeping....asking to use the bathroom "your still a little sleepy to be walking do you want a bed pan?" I'll hold it....more voices and something that sounds like "No, it was a double salpingectomy."

Even in a stooper I know what that means, they took both tubes. 

Unexpected Results - Hydrosalpinx

This is what happens when your appointment is at 1:45 and you don't get seen until 3pm.

My feet were freezing! I left my socks in the car and thought for sure the second I sent Hubby to get them that the Dr would come in.  Should have got the socks!

He got a hot coffee, while I could not have fluid for 4 hrs.  This is the "do not instagram me" face.

The sonohysterogram was not as bad as the HSG. It was pretty awkward, I had to maneuver myself to sit on a trash bag!  This procedure also required a cath to insert saline in my uterus during a ultrasound to get a better look at the walls and make sure everything was in the right place.  I'm not gonna lie, the cath hurt, fell out and hurt again.  The saline felt cold and there was cramping but I survived.  When everything was done we looked at the images and he said everything looked good.

My ovaries are good, I have a great supply of eggs (apparently the chart I posted meant 14 total not per side) 20 plus follicles.  They are small but with stimulating drugs we should get some good ones.

He also said my hormones are in the right place so the metformin is working (yea!) my TSH is in the normal range at a 3 but under 2 is preferable for pregnancy so he's put me on thyroid meds to bring it down.

Then he talked about my HSG results.

This is what I have:

A hydrosalpinx is a blocked fallopian tube filled with clear fluid due to injury or infection.
The inflammation and healing process resulting from such infection destroys the delicate finger-like fimbria, which extend from the end of the fallopian tube to the ovary. When injured, fimbria become fused together, thus closing off the tubes. Fluid then collects in the fallopian tubes, making it impossible for them to function.
The blocked tube may become substantially distended giving the tube a characteristic sausage-like or retort-like shape. The condition usually affects both fallopian tubes, (even when only one tube is affected, there is usually some residual damage to the other).

He drew the tube while explaining all this to us and it looked exactly like my X-ray.
Apparently somewhere in the past 10 years I had a infection that inflamed my uterus. He could not tell me what exactly caused it and that sometimes it's asymptomatic.  My suspicion is this has to do with a burst cyst or something related to PCOS. 

He went on to tell me that he believes the fluid in the right side is now damaging the left side (accounting for the partial blockage) and that the tube will have to come out.  The fluid is toxic and will kill any embryos and continue to damage the left side.  So I have surgery set for December 2.  He will try to repair the left side when he removes the right.  If its beyond repair the left will come out too.

Laparoscopy. This is a surgical procedure using a laparoscope -- a thin, lighted instrument fitted with a tiny viewing camera. The laparoscope is inserted into the pelvic area via a tiny incision in the belly button, enabling the surgeon to directly see the fallopian tubes on a screen.

I'm a little freaked out about this, I've never been in the hospital, never broken a bone, never had stitches. It's been a week and I'm still wrapping my brain around all these pieces. 

In the Background

So my last few posts may have looked “zippity do da” like we’re just buzzin’ through life with fun filled weekends; which is partly true but there has definitely been activity in the background.

Back in Feb I posted about my fasting glucose test and all the other required tests to get a proper plan in place.  The result of that glucose test was a prescription to get back on Metformin 750 mg 3 times a day and switch over to the Paleo diet.   I never actually made it up to 750, I’ve been maintaining 500mg x 3.  I’ve been doing OK on Paleo, until about 2 weeks ago.  I literally thought I was going to vomit if I had to eat one more premade meal with caulirice.  So we put that delivery service on hold for this month and I’m cooking.

August 26 I officially changed from contract to permanent employee which means we have insurance!   They automatically sign everyone up for Kaiser, which I have nothing against but I like my own doctors and I hate having to go through the endless paper approval process.  So we switched over to Blueshield 90/10 plan, the most expensive (560 per month) but the least in deductible and included infertility coverage.

When I took this job the idea was to work 3 12 hr days a week.  That should have allotted me the time to go to the dr. Well HR wouldn’t approve that, the most they would agree to was a 4/10 schedule.   After a lot of back and forth and being completely burnt out I got assigned a normal 5/8 schedule.  I now work from 6-2:30.


Sept 25 I saw my regular Dr to have my yearly physical done and get all my stats updated.  My blood pressure was abnormally high, it was attributed to work stress.  

Oct 1 Went to get the remainder of my blood work done.  Was gone from work 2 hrs, there was a miscommunication on how I could break out my time, which turned in to a discussion with my supervisors on what I’m perusing and how much time I can take.
Basically they want me to make all my appointments after I’m off for the day, they are willing to let me take a hour lunch and stay until 3 pm to get my lab work done.   We have to meet again in 3 months.

Oct 7 Nurse called with lab results, said everything looked good except I was very low on vitamin D and needed good cholesterol.   Recommended 2000IU Vitamin D and flax seed oil.  Later that night I was curious about my BP and had hubby take it.  156/110, scary high.

Oct 8 Called Nurse back told her about BP, she insisted I see the dr right away.  Go to dr get prescribed BP meds and asked to take log of readings for 2 months.  Attending dr see’s we are trying to get pregnant in chart and thankfully prescribes a med that I can stay on through a pregnancy.

Oct 9 Go back and forth with our lousy PA Janet on lab results and missing tests.  Apparently she forgot to order 2 blood tests on top of needing my LH and FSH levels.  I had to have a baseline ultrasound done between cycle day 1-4 and she insisted it be done at their office between 7-9 am. And then there was the Sonohysterogram that needed to be scheduled before day 12.  Can you believe she told me "just send me a email on cycle day 1 and I’ll get all this scheduled for you?"
I call the dr’s office and ask to speak to anyone BUT Janet, thank goodness I did.  Ended up talking to a very nice lady named Lisette.  She explained that I could get my labs done at Quest or at any HRC office as long as they were same day results and that I can also get my ultrasounds done at any HRC office.  She helped me move my baseline to a 4pm apt in Newport and confirmed my sono with Dr Potter on 10/24, which Janet never scheduled!

Oct 15 Cycle day 1.  Email Janet (useless)

Oct 16 Cycle day 2, go to Newport for the most awkward ultrasound of my life.   I’ve done the internal deal before but never bleeding!  Who signs up for this job?  Gross.  It only lasted about 10 minutes.  He took pictures and basically said 10 words.  

“Healthy lining for day 2.  10 Follicles on each side, small. Ovaries consistent with PCOS.”
I wasn’t really sure what all that meant, this is what Dr. Google found.

This whole time I thought the cysts were on the outside of the ovary, not around the eggs. So then naturally I wanted to know how many follicles was normal.

So I guess I'm lower than average?

I also ran into Janet on my way out, who forgot to tell me to schedule an HSG (hysterosalpingogram) between day 6-10.  Do you see a pattern of forgetfulness here?

At check out; $323 for one ultrasound, 4 labs and 1 copay.  This is at 50% cost according to my plan, I double checked.   Dr. Potter wasn’t going to be able to meet up for a complete follow up until Nov 13. So the soonest we can start a cycle will be Nov 15.

Oct 17 Called our insurance to find a hospital with a radiology department in plan.  I still cannot believe I had to schedule this on my own.

Oct 21 Cycle day 7 Went to Whittier Community Hospital for HSG.  If you are squeamish stop reading here.

“During a hysterosalpingogram, a dye (contrast material) is put through a thin tube that is put through the vagina lady business and into the uterus. Because the uterus and the fallopian tubes are hooked together, the dye will flow into the fallopian tubes. Pictures are taken using a steady beam of X-ray (fluoroscopy) as the dye passes through the uterus and fallopian tubes. The pictures can show problems such as an injury or abnormal structure of the uterus or fallopian tubes, or a blockage that would prevent an egg moving through a fallopian tube to the uterus.” – WEBMD

This had to be the most utterly horrifying experience in my life.   My nurse was really nice and sympathetic.  She showed me all the tools and explained the procedure. The Dr was the exact opposite.  I had to lay on a table similar to what you would for a pap accept completely flat on my back and totally exposed.   

He had to clean the “area” with iodine, then the speculum (which was not smooth or gentle), then he fed in the catheter which felt like a jab and then pressure and then extreme pain which made me yelp and nearly push off the table.   He said he made the balloon to big and had to start over.   I wanted to grab something.  My first instinct was to grab onto the thing nearest, which was the xray machine, so that was a no.  I couldn’t grab the table either.  I ended up balling my fists and covering my eyes and breathing.  The pain was so extreme when he put in the contrast, burning and pressure and cramping. I thought I might faint or vomit.   Just a few more minutes. More dye, more pain, more breathing. Then he stopped to look at the screen.  I could barely look at the screen myself.  “Right side completely blocked.  Left side blocked, no wait, dye is showing slowly.  A partial blockage.”   

(This is not my film, but mine looked very similar)

Then he leaves the room.  Nurse says all done and I say are you sure?  She says yes again.  And I say it still hurts, I feel pressure, are you sure he got everything out?  She says yes and that I will have cramping because there was some bleeding.  And I say No, there is pressure.  She tries to help me up. At this point I reach around all the draping and PULL out the speculum.  He left it in!!  I knew I didn’t hear the clicks of it being released.   The nurse looked totally humiliated and kept apologizing. She took the tool and we looked at the stand together as she recounted all the tools.  There was blood on most of it.  She helped lower the table so I could get off, my legs were quivering and there was a rush – the dye and whatever else coming out.  She gave me a towel and helped me walk to the bathroom.  I don’t know if I wanted to sob because of the pain or because of the results, but I had to hold it together long enough to get my films and get the heck out of there.  
I text hubby on the way out to go pick up my scrip for antibiotics and guess who forgot to call them in?

When I got home I soaked in the tub for about a hour. It was therapeutic, kind of like I was washing off what just happened.    There was lots of cramping and spotting for the rest of the night and following day.

Oct 24 Tomorrow my Sonohysterogram is scheduled and I’m totally freaked out about it.  It’s a similar procedure with the cath and inserting saline.  This time hubby can go with me.   I’ll update this post either Friday or Monday.