sacral agenesis
Julie and Mark
sacral agenesis
Julie Hemker, author of “Living with Sacral Agenesis” series on TDWI

Julie is on her 48th surgery at the age of 38. Just amazing Julie!


My friend and fellow writer, Julie Hemker, is 38 today. Join with me in wishing her a Happy Happy Birthday.

Six days ago, Jules had her 48th surgery. For those of you who have been following her story on this site, you know she was born with sacral agenesis and has had to undergo many surgeries to correct the congenital defects in the lower part of her body. Despite this, she is one of the happiest, most generous and loving people I know. She sees the bright side when many of us would have been wallowing in self-pity. She is one amazing woman and I am glad she is a part of my life.

Julie had to blast through a bunch of barriers to get this most recent surgery as she chronicled in several of her recent posts. The problem is that she is an adult with a congenital problem—she no longer qualifies to be cared for by her pediatric doctors and most adult doctors don’t have much experience with her type of  physical disabilities. This left Julie hunting for the right doctor to treat her most recent problems—a tethered spinal cord, radicular pain, and a painful heterotopic ossification. She has been on bed rest most of the year because of a CSF leak. Then she had a fall and got a concussion. And if that were not enough, she was in constant pain due to the tethered cord and radicular pain. Geez Louise, enough is enough.

So, we all rejoiced when Julie told us she finally found a surgeon to do the operation. He was knowledgeable, supportive, and best of all, right in her own backyard. There was a minor glitch from her insurer—initially denying coverage for part of her surgery, but that was quickly resolved. Thursday she had her operation and now she is home. She wrote me to tell me about her post-op recovery:

“I just got home last afternoon. Thank you for all your thoughts, they worked! The surgery was successful all around!!! I had to stay a day longer than he had hoped but the pain was difficult to control without bringing down my blood pressure. Then without cause, I spiked a fever but luckily no pneumonia :). They delayed removing the foley but so far, with some difficulty, I have been able to initiate voids for a couple days now—such a great sign!!!! For Thursday’s post op, I had to go to ICU from blood loss and I uncharacteristically had difficulty waking. By 11 pm, I was in my room alert :). Through all the bone pain, I happily could tell all the leg pain had gone away, no more radicular pain through both legs, no more rectal and perineal spasm either. I knew it worked instantly!! There are no words for my joy, Mark’s and my parents’. My Mom cried when I voided. Silly how magical that sound really is and not many know it to be.

I just got up for some pain medication and was elated to see an email from you. You have been such a solid and fantastic friend that seeing your name makes me realize how honored I am to be friends with you!

I am allowed to only walk, practice getting in and out if bed (it’s quite challenging trust me) and walking around our, thank goodness, ranch and accessible home! I asked if I could put a plate in the dish washer or something—NO. I don’t feel like it but had to ask :). So today is my 38th Birthday and had my 48th surgery, a trend which must end. Mark’s B-Day was last week and we both said all we wanted was for me to have surgery to get into recovery—Best Birthday ever :).

Stella [her yellow lab] was quite aware of my absence and searched for me. Despite her youth, she knows to be gentle and licked every bruise from IVs etc. When I just got up, she tried to rouse Mark but she stayed sitting at the bed side until I was beneath all the covers before dutifully going back to her bed, laid down and sighed the largest sigh of relief. I’m still the luckiest girl, surrounded by my Mark, Stella, Mom & Dad and some beautiful friends. Life is truly filled with so much wonderfulness it’s overwhelming to think this is my life. You are included in that list Pat!!

Sorry for the length but there is no abridged version of how I feel despite the long painful recovery :)”

So Jules, Happy Birthday….all is groovy!

Julie and Mark

7 COMMENTS

  1. Julie,
    I have been following your blogs hope you are recovering from your surgery well you will be in my thoughts and prayers!! Hope you had a blessed Birthday!! I enjoy reading your blogs they are such inspiration!

    • Dear Angela,

      Yes I’m glad you are reading these entries. IT really does mean a lot to me! Thank you for all your thoughts and prayers. I’m writing now as I’m on the other side in recovery doing quite well. It is for people like you who send prayers and positivity that make my life even better! Thank you.
      Best,
      Jules

      p.s. Although I don’t remember this Birthday much I still celebrated a couple weeks later when I actually had a taste for my yearly piece of cheesecake :)

      • Julie,
        I’m glad to hear you are on the other side of recovery and doing well hope and pray you continue to recover. Well take care and God bless!

    • Dear Bruce!
      Hi! Another positive thinker I see who embraces how beautiful life is! Thank you for your thoughtful words it means a lot that someone else can see how I choose to be the happy person I am. It doesn’t mean I don’t feel things it’s just how I choose to deal. Thanks again and have a great day!

      Best,
      Jules

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