March 05, 2013

Placenta Accreta/Percreta, Placenta Previa, Thalassemia Pregnancy week 20

You LOVE looking at bladder diagrams, don't you?!
See those two tubes-- the Ureter. They don't want to damage them during my bladder repair,
so they will go in ahead of time and stick plastic tubes in them to mark where they are.  fun, fun!!  

{background info- Hello! My name is Jenifer and I am a stay-at-home mother to seven, wonderful children (2 boys and 5 girls).  I am currently pregnant with my eighth child (A BOY!!) and was diagnosed with Complete Placenta Previa (CPP) and Placenta Percreta.  I also have Beta Thalassemia Minor which contributes to severe anemia.  Two of my previous births were emergency c-sections, I had one prior D&C after an incomplete miscarriage, and a surgery on my small intestines when I was in middle school.  (Previous uterine surgeries do increase your risk of Placenta Accreta.) 

My placenta is on the anterior wall of my uterus adhered to the myometrium, directly over my previous c-section scars, and has spread (like a cancer) to other organs in my abdomen, mainly my bladder.  Doctors also note that my Percreta covers almost my whole placenta, not a small portion.  They are hoping to begin steroid shots at 32 weeks and deliver with a large team of specialists (and a lot of waiting blood) no later than 34 weeks (that will be around June 1st).  CPP suggests that I will probably begin bleeding prior to 32 weeks, if that happens I will be hospitalized until my delivery.

I bled/spotted for the first three months of this pregnancy which led to visits to the Office of Genetics and Maternal-Fetal Medicine where I was originally diagnosed with CPP and possible Accreta, around 12 weeks.  I am currently going to Oregon Health Science University (OHSU) in Portland to meet with specialists there.  I receive lots of blood transfusions and enjoy many doctor's appointments.  I am currently on pelvic rest, partial bed rest, taking vitamins, drinking green smoothies and trying to find joy in this journey.  

We feel SO blessed to have this baby and to be in the hands of skilled doctors.  This is a record of my pregnancy for my family and for those of you who may be experiencing something similar.  Yes, I share a lot, perhaps too much!  I am one who learns much from the experiences of others and I'm happy to share my experience with you, in the hopes that somehow it may help.}

Week 20--  

Doctor Appointments.
Urology--
At a previous ultrasound, I was informed that I would need a scan of my bladder or Cystoscopy.  When I asked if they would do it that day the Sonographer said, "Oh no honey, you will be scheduled and put to sleep.  That scan hurts.  It's a large camera up inside you, bigger than a catheter."  So.... I was a bit surprised when I showed up to my first Urology appointment and was shown into a room with a large TV monitor  hanging iv fluid and was told they were going to scan my bladder that morning.  (These OHSU don't waste any time!  I have yet to have one office visit, they are always doing things.)  This nurse said, "It doesn't hurt much.  It's just a big pinch, like an IV."  I thought- AN IV IN A PLACE I DON'T WANT AN IV!?!  They asked if residents could come observe the process.  I said "Sure, the more the merrier!!"

My husband was so excited and awed by the technical equipment surrounding him.  His "THIS IS SO COOL!" rubbed me a bit wrong.  I asked the doctor if there were any residents that needed to practice placing scopes and volunteered Todd, since he thought it was so "interesting" to have a camera stuck up your urethra.  Sigh...  It wasn't fun, but it wasn't horrific either.
i don't know what is happening with this person's bladder...
but mine looked like the lower part-- just skin and small veins.
Plus, there was one large, red, pumping scary looking vein clump that i did not love.
It is neat seeing inside of your body.  A bladder looks like a balloon made out of skin- I really wish I had taken a picture of the monitor with my iPhone (next time!  I know you can't wait).   It is skin colored and clean with tiny red veins.  We could see where my uterus was pushing up against the bladder- these organs are smushed right next to each other.  And then, there was this big, red, varicose vein looking thing.  It obviously didn't belong.  That was placental veins that have grown into my bladder.  It was scary looking.

The doctor said things looked great.  The growth was near, but not on, one of the tubes that leads to my kidneys.  She said they would probably want to go in before my surgery to shunt those two tubes so they are able to locate them when they do my bladder repair.  When my placenta and uterus is removed, it will probably tear my bladder.  They will just stitch it back closed (being careful not to damage those tubes) and I'll have to use a catheter for 2-4 weeks while my bladder heals.  She assured me that bladders are pretty resilient and not difficult to repair.  She kept saying, "This looks great."  I kept thinking- It doesn't look great to me.  Great would be "We can't find any placenta in here"  or "See that tiny thing that is hard to see, that is what we're concerned about."  Great, in my opinion, is not some nasty, red, huge, growing vein thing.  Just saying.  She also raved about my perinatologist saying that she was a brilliant doctor and I was so lucky to have her.  I wanted to cry.  I wanted to tell her that my brilliant doctor strongly advised me to abort my baby.  But, I didn't.  I just pretended that, despite what I thought I could see on the screen and what I was feeling, everything was GREAT!!

Hematology--
After some pretty low CBC lab results on Monday, I was on the way to the Corvallis hospital for a blood transfusion when OHSU in Portland called and asked me to wait to get blood until I met with the hematologist up there.

The earliest appointment they could get me was for Friday.  It was a long wait, but I was very excited to finally meet with a doctor who knew about my Thalassemia blood condition.  This doctor specializes in blood conditions in pregnancy.  Perfect!  She is a hippy-ish doctor who knows her stuff.  We talked for a long time, she noticed I was dizzy and had me lay down for the appointment.  She was concerned about many of the things that I was concerned about, that my previous doctor brushed off.

She thinks I may have had a minor transfusion reaction on my last transfusion (my CBC results dropped after being transfused).  She's concerned about antibodies in my blood that will make my blood difficult to match in the case of an emergency.  She is concerned about my heart (having had between 20-30 previous transfusions and lots of anemia, my heard could be affected).  She is concerned that there might be another reason (besides Thalassemia) that is causing my blood levels to be so low.  Because I am at risk for bleeding at anytime, she wants to keep my blood levels higher than they otherwise would need to be.  She also wants me to email her with my symptoms on a regular basis.  I completely trust this doctor, she has cared for MANY pregnant women with Thalassemia .  You can feel she is a wise woman.  I feel very safe in her care.

Insurance--
I feel like I should add a little caveat here.  Since we have been transferred to OHSU we have been on the phone often with our insurance company.  OHSU is out of network for us so we would normally have to pay 30% of every test, appointment, hospitalization and surgery.  Even in-network we have a $250 minimum for specialist.  Times that by 30 specialists and it's crazy.  That is A LOT of money.  We have great insurance and are coordinating with many doctor's offices to submit the proper explanation of why we need to be at OHSU so they can approve in-network benefits.  Ultimately, we will be fine financially.  BUT-- I feel for those in similar situations who have the additional stress of financial concerns on top of medical concerns.  Those who work in medical offices with insurance companies are SAINTS.  The amount of paperwork and silly hoops you have to jump through is mind boggling.  Blah!  I hate money.

Test Results.
Cystoscopy- placenta attached to the wall of the uterus. 
CBC- Hemoglobin 7.6, Hematocrit 24 (transfusion of 2 units of blood platelets)
Lots of blood tests ordered, they are checking my clotting ability and trying to genetically pinpoint my beta Thalassemia.

Next week I'm scheduled for an Echocardiogram (an ultrasound of my heart) and I meet with my Gynecology/Oncologist who will head up my eventual surgery.  So fun!

Physically at 20 weeks.
I felt horrible this weak.  My worst week yet.  With low blood, I was weak and light-headed, very dizzy and very tired.  My hands and my feet started loosing circulation easily and I was often panting for breath, especially if I had to walk for short distances.  It was hard for me to sleep and hard for me to read.  I was VERY ready for my transfusion on Friday.

Mentally at 20 weeks.
I'll be honest with you.  Throughout the whole process of learning about this surgery, I have been most afraid of getting a catheter and having to keep it in post-surgery.  Are you laughing at me?  Bleeding to death, no problem, Catheter- AHH!  So, this cystoscopy freaked me out.  On the way home Todd and I had a long talk, meaning I talked and he listened.  I told him that I needed him to listen to my fears more so that he could know when I was really afraid.  Sometimes I act too brave and people don't know that I'm really a wimp deep down.  Can't wait to see my bladder again in May!  And, I'm so glad I have a husband that loves me and listens-- a lot.

And, I have to add that I left my Hematology appointment feeling so VALIDATED and a bit ANGRY.  Many of the things that this new specialist was concerned about, I had been concerned about since the beginning.  My previous hematologist was nice, but she dismissed every concern I had and made me feel dumb.  The greatest anxiety I feel during this pregnancy comes when I think my doctors are wrong.  I am SO glad that I found myself with a new doctor, but I hate that I could have trusted my other doctor more than I trusted my gut.  I have learned this lesson so many times-- as much as I hate making any waves, we MUST trust our own gut.  If a doctor doesn't seem to understand or focus on things that are concerning to you-- KEEP LOOKING for the answers you seek.  I have found there is great peace that comes from TRUSTING your doctor, even if the doctor is telling you bad news.  I love my new hematologist because she's smarter than me and she is not dismissing my concerns.  That brings great peace into my life...

I actually feel great emotionally.  It was nice having my dad here to help with kids and meals.  He took a big load off of Todd, and when Todd is happier, I don't feel so guilty laying down.

I've been reading my scriptures a lot lately.  I can see the hand of the Lord in my life hour by hour.  I honestly feel so grateful for this experience and I know that "God is for me."  He loves me and these trials are gifts in my life.

Here are a few ways I see the "gift" in this experience--
1- so many kind people.
We've gotten meals and desserts and books and kind notes and phone calls and babysitting and cute robes or pj's ..  people are so kind.  I feel blessed to be on the receiving end of kind people and they inspire me to want to be more giving.
2- wise, trained doctors and nurses and technicians and secretaries.  
Wow, my life has been so blessed by kind, skilled people who serve in the medical field.
3- time with family.
I'm grateful that my children and I get to have more time with family who is coming to visit and care for me. I would choose this trial just for this time with my parents.
4- time with Todd.
Although this isn't a two week getaway to the Caribbean islands, Todd and I get to spend a lot of time together.  We drive two hours up and back to Portland at least once or twice a week.  He sits by me for hours and hours while I get transfused.  We steal lunches together at the hospital cafeteria or at our favorite Thai place on the way home late at night.  It is SO nice to spend so much time with the man I love, without our children.  Even when it's not always FUN, this time is a gift.
5- quiet time.
On the days that I am beginning to go stir crazy, I remind myself-- this time is a gift.  I am always asking myself "What can I do today that I could not do if I were caring for my home and family?"  I feel blessed to be able to be still.  To pray and ponder, to write in my journal, to read good books, to talk to good people, to be inspired and to feel peace.
6- perspective!
It is SO FUN to see my life as an observer.  So many times I watch my father and my husband trying to cajole eve to lay down for a diaper change or trying to clean up the house with toddlers at their heels and I just laugh.  My job is a hard job.  It is a job so hard that even two people can't do what I normally do.  Watching them I understand why my house is still messy after a whole day of cleaning and why I occasionally loose my temper with my children.  Taking care of a large brood is relentless and continual.  It is funny watching them try to do it and I can see how amazing I really am.  (I mean this humbly.)  Mothers really are amazing.  Imagine what your life would look like if you could watch from a recliner?  I'm so grateful for this perspective.

Additionally, facing my own mortality has been a gift.  Truthfully, I am not afraid of "being transferred to the Spirit World" as Elder Bednar put it.  I'm not afraid at all.  I really do have complete faith in a loving, omnipotent Father in Heaven.  I know that my life is ALWAYS in His hands, and He is working for my good.  I have faith that I will live and that my baby will live.  But, I also have faith enough to die.  It is not something I have had to seek for these past few weeks, it is just innate in my being.  I KNOW.  I know He loves me and I know whatever happens it will be OK for me and my family.

Hard trials are GIFTS.  We ALL have trials in life, and this is mine.  I'd pick this trial.  I am grateful that today I know who I am, I know God's plan and I'm following Him in faith.  I believe in my Savior, Jesus Christ.  I'll honor His name.  I'll do what is right, I'll follow His light.  His truth I will proclaim!!
(That's a children's song that I love.)

Life is good!!

Want to watch an amazing talk?  Elder Bednar was speaking RIGHT to me...
but honestly, I could have given this talk... I KNOW IT!!
He says, "To not SHRINK is more important than to SURVIVE!"
watch it here--
http://www.lds.org/broadcasts/watch/ces-devotionals/2013/01?lang=eng&vid=2201224691001
really!

AND THAT MY FRIENDS IS MORE THAN ANY OF YOU EVER WANTED TO KNOW ABOUT MY BLADDER!!  HA!  TEN POINTS EXTRA CREDIT FOR ANYONE WHO ACTUALLY READS THIS POST!!  TEN POINTS, AND A FRONT ROW SEAT AT MY NEXT CYSTOSCOPY... TRUST ME-- YOU DON'T WANT TO MISS THIS!!

The Journey... 

Week 21
Week 19
Week 18
Choosing Life
In a Moment...

7 comments:

Leah said...

I sure have one amazing cousin. I wish I could be there to help!

Marie said...

Am thinking about you and praying for you everyday... ❤

Quigley Family said...

Jenifer,
I've been following you for a while but took a couple months off...sheesh,I missed a lot while I was away. I wish I was there to help, to bring a dinner or play with your littles. I'm sorry you lost your baby, I am praying for you and your son. A boy! How perfect. If you are looking for something to read and haven't read it yet try "A Heart Like His" we are reading it together as a Relief Society. It is wonderful, easy and fast to read. I can send you my copy when I'm done. I live in Seattle...not extremely close but if there is anything I can do for you. (I'm the Compassionate Service Leader in my Ward, I like to help!) quigley.alicia@gmail.com

Raisin4Cookies said...

Thanks so much for sharing your journey, and that link to the talk. It really touched my heart and made me think harder about my own faith. Blessings to you and yours.

Tiffany said...

Woohoo--I'm always looking for extra credit & front row seats to your life!

You & the fam are in my thoughts & prayers LOTS!

LOVE YOU!!!

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Gerilyn said...

Jen, I loved reading your informative, inspiring and well-written post! Thank you for sharing. I felt the spirit so strongly while reading, and I thank you for that as well! Bladder power forever! Ha!

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