My Story

Posted On Friday, November 05, 2010  by Chris

I was discharged from the hospital 9 days post-partum, after 4 days of IV iron bolices, and some sort of hemoglobin shot to help get my blood chemistry going in the right direction, with a j-tube to keep draining all the fluid that had third-spaced into my abdominal cavity.  Post-surgery, besides the 40 mg of Lasix I was receiving via IV daily to start getting the water retention off; over 3 litres of fluid, (word picture: over 3 bottles of pop) came out through the j-tube in my abdomen.  During surgery I remember the one surgeon apologizing to the other, I think his initial incision left a rooster tail of fluid that squirted the surgeon opposite him.  She in turn replied, "Look at all the fluid in this woman's body!"  My friend who was there with us is an RN, and she later told me that they never opened a bottle of saline to irrigate the surgery, they just kept suctioning out the fluid that was pouring out of my own body tissue; I did all the irrigating for them.  Who knows; maybe it saved a few bucks?  (You have to find humor at some point)

74 days, (2 months, 1 week, 5 days) later, we were discharged and able to go home.

Abigail sailed through her hospital stay, no blood transfusions, surgerys, complications, etc...of any kind.  They referred to her as a boring baby.  We were glad that she was boring.  She is now nearly 17 months old (15 months gestation age) and is walking, talking, doing some ASL signs, has had no developmental delays, and our doctor is pleased with her progress.

I have had several residual things from my pregnancy complications: pain all over my body, for 9 months post-partum my legs and arms had the constant feeling like they had fallen asleep and were waking up, (a painful, tingling sensation that has a medical name, but I don't remember it), as soon as I was discharged and taken off the Lasiix, my body started to retain water again to the point of being 3 lbs shy of what I weighed when I was medivaced pre-delivery, (27 lb increase from when I was discharged 9 days postpartum).   When I was medivaced pre-delivery, my body had put on 40+ lbs of water in 15 days.  It's just been since this past June 2010, (1 year later) that my body has started to go in the right direction without medication, (dropping about 11 lbs of fluid retention so far, still have a ways to go).  I was able to get off blood pressure meds 2 months post-partum and have not taken any meds since.  Currently I still have daily, moderate pain in my right lower quadrant, groin, hip and leg, with times of intense pain that interrupts my sleep and ability to function in daily living.  I have sleep deprivation, (I haven't had 8 consecutive hours of sleep in over 1 1/2 years, with pumping breast milk every 3-4 hours from day 1 of delivery to 4 months post-partum, only getting 1-2 hours of consecutive sleep at a time.  I'm still nursing and now getting 4-5 hours of consecutive sleep a night with a few other broken hours here and there.  My daughter sleeps about 5-6 hours consecutively at this point – I’m looking forward to 8 hours of sleep a night).  This past spring I had a huge dump in energy.  Blood work showed my Vit. D was at 22 (normal range is 30-100) now it’s back up to 31 – I have been supplementing 3,000 iu’s of D3 daily since this past March.  I had a skin biopsy done 2 weeks ago on some skin changes on my right shin area, (the leg I’m still having problems with, which still has pitting edema).  The lab results came back showing "Small Vessel Vaculitis" (SVV).  I'm hoping that the doctor who took the skin biopsy can help diagnose the cause of the chronic pain I'm still having, edema, etc...or refer me to someone who can.

I don't fully understand what all has taken place in my body.  The only major side effect I had pre-delivery that I was aware of, was from a blood pressure medicine, that when taken made my arms and legs feel like they were being crushed in a vice, (day 3 of taking this medication the side effect lasted for a 7 hour period, and was the decision maker for delivering the baby, as I was done taking medication at that point).  I know that I'm not back to 100% of what I was pre-delivery/pregnancy complications.  I had two normal pregnancies and vaginal deliveries prior to this experience, so I know that what I'm currently experiencing is not the "norm" for me.  I totally understand that my situation could be worse, but my desire/goal is for a complete recovery.  I'm tired of survival mode.

I won't go deeply into all the emotional, relational, financial aspects that are also deeply affected by walking this journey.  I will say that people who haven’t walked the journey don’t understand, even most family members don’t understand.  I've found out who my true friends are during these past 16 months of staying away from large crowds, sick people, trying to get the help I needed/still need, etc...I have no family of origin that lives within 2,000 miles to help, so I have been a 24/7 care-giver while trying to recover.  My husband last fall/winter had to work as much as possible, up to three jobs at a time sometimes, as we lost 2/3 of our annual income in order to be at the out-of-state hospital daily with our daughter.  We, my husband and I, are just starting to become friends again;  he's the only friend who has stuck around.  I'm still trying to work through the other relational disappointments I've experienced, and feel like my emotions are just returning from cold storage.

I'm thankful to be alive, and have a healthy baby, knowing that the hand of God has kept us.  I'm thankful that I didn't have a stroke, kidney failure, liver failure, seizures, etc...I know there are those who have had significantly greater severities in their experiences.

I have a great respect for all who have walked this journey, (survivor, family and friends) and have tremendous compassion for those who have lost their loved ones and/or baby[ies].

Thank you for listening and allowing me to share,
Chris