living with sacral agenesis complications

Wow! What a year! It’s strange how emotions take a back seat to survival when you are in the thick of major trauma. Thankfully, as of today, I am turning the corner medically as I am officially free of infection anywhere in my body!

So, you may be wondering, what are you talking about Julie? Last we knew, you were being positive and staying focused on getting the next spinal surgery to correct your spinal fracture.

My, how time and circumstances took me and my family for a wild ride. Unfortunately, it was not the good kind of ride where you roll down the windows and let the wind blow your hair all over the place while you listen to your favorite song on the radio.

Instead, I was wrenched from everything that was familiar to me, severely challenging my ability to overcome. Of course, I did overcome, that’s why I am writing again. But for much of the year, I was more like a zombie on auto-pilot than the usual Julie, who sees obstacles as an opportunity and embraces what others see as a challenge.

 

Here’s what happened

I had a second surgery to complete an Anterior Lumbar Interbody Fusion (ALIF) after the first one, just a week earlier, had failed to correct a spinal fracture at the 3rd lumbar level. Technically speaking, this surgery was a success.

Although I was still feeling disappointed from the previous failed attempt, I embraced the post-operative “discomfort” that resulted from having had surgery via an anterior (abdominal) approach. This was because I knew that the surgery had fixed the fracture and stabilized my spine. Knowing a procedure has worked has always given me the strength to recover.

I seemed to be doing quite nicely for about 3 weeks after the operation. But then my pain went from recovery pain to acute, debilitating pain. I reached out to my surgeon and after 2-½ months, I was seen by him.

He ordered a CT of my lumbar spine thinking perhaps the fusion did not “take.” Well, he was right, the fusion didn’t take; I still had an active fracture. Also, because of my unique anatomy related to having been born with sacral agenesis, my spine had destabilized. The vertebrae were slipping over one another, a condition called spondylolisthesis. These two conditions, the fracture non-union and the slippage, explained the intractable pain I had been experiencing.

 

Yet another surgery

I’m pretty sure I cried from pain more this summer than I have in my 41 years of life and more than 40 surgeries. It was beyond my tolerance. It took yet another 5-½ weeks to get scheduled for new surgery, this one via a posterior approach.

This was not ideal because my back has been operated on so many times, but it was the only option. The surgeon needed to extend the rods in my back and fuse the next level of vertebrae. I also needed a laminectomy. It turned out that one of my vertebral facets had broken off, so my surgeon harvested the bone to use in the fusion. It’s funny how things work out.

This time, I recovered from the actual surgery very well. I immediately had more strength in my legs and other symptoms began to disappear immediately as well. I just had to concentrate on getting better.

 

Infection

Before I left the hospital, my white blood count (WBC) kept climbing suggesting infection. After spinal surgery, it is very normal to have a foley catheter (indwelling bladder catheter) because moving and walking to the restroom after the operation is difficult. Unfortunately, catheters predispose to urinary tract infections (UTIs) and I ended up with a complicated one that kept me in the hospital longer than expected.

I was finally sent home on a third generation Cephalosporin (i.e., strong antibiotic) to continue fighting the infection. The UTI seemed to go away after the 10-day course of drugs, but my incision never closed. It remained open and seeping. I also had a seroma (a fluid-filled collection) near the wound that had to be needle aspirated and cultured for infection. The aspiration relieved some of the pressure pain I was having and the culture turned out to be negative for infection.

Weeks kept passing without the back incision closing despite my surgeon ordering a wound vacuum to help the healing process. The drainage became much worse and turned an awful green color. I had to have emergency surgery where they found a deep seroma, drained it, and cleaned up the wound.

A deep biopsy was taken to culture for infection. It revealed that I had a double infection: both Methicillin-resistant staphylococcal aureus (MRSA) and Pseudomonas (Pseudomonas is known for being worse than even MRSA). The combined infection (I called it the Dynamic Duo), was serious, but at last, we had a diagnosis.

 

6 weeks of antibiotics

For the first time in my life, I had a PICC line placed. PICC stands for peripherally-inserted central catheter. It is essentially a central intravenous (IV) line that runs from above the elbow, up the forearm, across the chest and then drops down right next to the heart. I was put on 6 weeks of two different antibiotics.

Although it wasn’t on my bucket list of things I wanted to experience, I learned how to do my 4 daily infusions and I don’t mean to brag, but I got really good at doing my saline and heparin flushes. I also had a fantastic home health care team.

In order to tolerate these very strong IV antibiotics, I had to take Benadryl to reduce side effects of itching and hives. Let me tell you, I will be fine if I never have to take Benadryl ever again in my life.

 

The aftermath

I wasn’t able to take a shower after my surgery because of my open wound. Then, I wasn’t allowed to shower during the 6 weeks I had the PICC line. After the line was pulled, I had to wait an additional 24 hrs before a shower was finally permitted. Even though I took sponge baths and got my hair washed in a salon every so often, I found that first shower after all that time truly amazing. I have learned to never under-estimate the value of the simple things in life.

After the antibiotics were finished, I was diagnosed with Clostridium difficile colitis, commonly known as C Diff. It is an intestinal infection due to bad bacteria taking over because the antibiotics killed off the good ones. I also got yet another UTI which became a kidney infection and I probably passed a kidney stone on my own! But, now, for the first time since June 19,th I am finally infection free.

 

A different Julie

So why aren’t I jumping for joy? Where is the fighter Julie ready to take on the world? Well, I am different after this really tough year. After 4 surgeries from February thru August, 2 UTIs, a double infection in my spinal wound, and a PICC line with 6 weeks of antibiotics, I find myself completely exhausted. I am like a rag doll.

I am happy to see the light at the end of the tunnel, but it’s like I’ve woken up and I don’t even know what I’ve been through. I feel like I’ve been trying and trying and trying to be strong and positive and make it through this year, but maybe I need a break. My family and I were talking recently and we figured out that it’s literally been 20 years since I have had time where I can just focus on me and rest and get better.

 

What’s next?

I am still facing a 4-hour walking gait study to assess problems with the way I walk and make corrections if needed, so I don’t get stress fractures in my feet. And then, I need physical therapy to get back the strength that I have lost.

I think about all of this and wonder where am I going to get the energy? I know many people have it worse than me, but it doesn’t take away what I am facing. I feel like I have lost my purpose because, for the first time in my life, I don’t have a job to go back to (my contract is on hold). I’ve always thrown myself into my career or schoolwork to take my mind off of everything that was going on with my health. The problem is, right now, I don’t even have the energy to do my everyday tasks.

Julie Hemker and her husband, Mark
Julie Hemker and her husband, Mark

I know I will triumph and overcome ultimately, but I guess right now I just need a giant hug and to be told everything will be alright. I am lucky because my husband, Mark, as well as my parents, family and my close friends, are here for me. And, of course, my sweet yellow lab, Stella, who sticks close to me with her cute face and wagging tail.

 

Closing with a song

I’m sure I’ll wake up tomorrow, listen to my music, and ease into the day. I just need to take it one day at a time so it doesn’t seem so overwhelming.

I leave you now, as always, with a song. It’s one that I can’t stop singing by none other than Kenny Rogers. It’s called “The Gambler.”

I love it when he says,

“Everybody knows the secret to surviving, is knowing what to throw away and knowing what to keep…”

Sometimes, like now, I am not sure I know how to play my hand, so I just have to rest on faith that I’ll find an “ace that I can keep.”

2 COMMENTS

  1. Dear Julia.
    Your story is totally moving…
    Thank God you already passed such season.
    Be strong, since the power lays within. Have Faith and send energy to your self using Reiki or Healing Hands Technology.
    Take massages every week.
    Take some sun, and meditate.
    Wish you the best for this year.
    @gigiowifi (twitter)

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