Some challenges in life hit us so hard, as we never saw them coming.
Such challenges don’t allow us the luxury of preparing ahead of time. They give no warning. They simply arrive!
My “acute” spinal collapse , would prove to be one of the hardest challenges I have ever faced, and I’ve documented a book load of challenges to date.
The day I called the ambulance, as I was unable to move from my bed, would become pivotal in terms of understanding further the complexities of my rare bone disease.
The weeks ahead would be crucial for my Specialist team, and my husband and I, as together we all grappled to understand the extent of my disease, it’s ravishing nature, and how quickly it could and has progressed.
Entering those ER doors on the 8th September 2021, was in many ways symbolic as I was opening a whole new chapter in my life.
The ER Experience
As the Paramedics took me into ER, my focus was firmly on getting a catheter. I couldn’t physically walk or sit up, plus there was no way I could lift my body on the bed to use a bed pan.
I felt a sense of deja vu. When my left femur broke in 2014, I was in the same ER with the same issue of being focused on getting a catheter immediately. Unbelievably I had a female Dr come and see me, just as I did 7 years ago. She completely understood how a catheter was my first priority!
ER was incredibly busy so I was still with the Paramedics on their gurney in the hospital corridor. The Dr found an empty “non patient” room to wheel me into. She quickly got everything she needed and within minutes I was one very relieved and happy girl.
The Dr retuned me to the Paramedics back in the passageway, however I never felt abandoned. My 3 female Paramedics were so lovely and we spent over an hour in the corridor chatting and laughing. They even brought me a coffee and sandwiches. This level of care was to continue throughout the very long journey ahead of me.
The ER Dr quickly returned to let me know she had spoken to one of my Specialists. He had given her an in-depth overview of the seriousness of my disease over the phone. I was to be sent for an MRI asap and would be admitted to hospital. No arguments or push back from anyone, just wonderful support. I felt very blessed to have this hospital in my life for the past 11 years and incredibly blessed to have all my Specialists here. When our health system works as it’s intended, it really does work well.
I felt settled and safe, even in the corridor, as we were waiting for a room on the ward to be cleaned.
I was eventually moved to a new ER cubicle and transferred to a hospital bed. The pain of being pat slid from one bed to another, was nothing in comparison to the pain of sitting or trying to stand.
Within an hour I was transferred from ER to the ward and from there taken down to the x-ray department, for an MRI later in the evening.
The following day I was moved to another ward, specialising in Orthopaedics and Pain Management. It was an older room but so bright and had a beautiful view from 3 huge windows.
This would become my new home for more weeks than I could imagine…..I had one focus. I wanted to get home as soon as possible.
Days Become Weeks
When in hospital you often receive messages, from friends and loved ones, saying they hoped you could find things to entertain you so you don’t get bored.
Bored? I would love to feel bored for 5 minutes.
My experience of hospital is, you are either too sick to really understand what’s going on around you, or you are inundated with tests, procedures, surgeries, nurses and Drs constantly in and out of your room…..I needed a moment. I needed some peace.
My first two weeks in hospital were just a blur. My pain levels were off the charts and even though my brain was functioning each day, in terms of talking etc, my short term memory just failed to exist.
I spent 2 weeks on the hospital bed, unable to lift my body out of it. Even 2 Physiotherapists trying to assist just resulted in a failed session everyday.
I didn’t have time to be bored as I was taken out of my room, on my bed, nearly everyday for 14 days, for all manner of x-rays, CT Scans, Nerve block injections twice, a Bone Scan, MRIs and an extra surprise we had no idea was even possible!
My Right Femur Has What?
The MRI showed I have 2 sacral fractures which may have caused this acute incident.
However at L4/L5, a group of nerves in my spine, were severely compressed and this was, and is, the bigger issue. My bone disease has progressed to the point where the lumbar spine is completely unstable. It has just collapsed. The nerve compression, along with any fractures, was simply not allowing me to sit upright or stand. It had rendered me crippled.
I also had a Bone Scan which always lights up like a Christmas tree. This time I noticed a definite black spot on my right femur which hadn’t been there on previous scans. It looked very similar to my left femur break which was a major fracture.
I pointed it out to my Spinal Specialist when he visited me the next day. He had seen it too so he sent me for an x-ray to check the rods hadn’t been compromised.
What we discovered shocked me and my entire medical team!
My right femur had a new transverse fracture. It really was impossible with a rod in my leg, however once again my body had managed to amaze and alarm us all.
The Orthopaedic Specialist, who looks after my lower limbs, was in my room within minutes of the results coming through. He had booked me in for surgery the next day to insert a screw into the rod, just above the knee. This would ensure it was stabilised. Without this we could have had an emergency situation where the rod would have broken.
My concern was I had no idea I had this fracture. I couldn’t feel it. I think it was because the spinal nerve compression pain was off the charts!!
Lockdown and Homesickness
After 3 weeks my body was showing little sign of improvement. I couldn’t sit on the edge of the bed to trial standing with a walker. It all felt hopeless.
As if things couldn’t get worse, our state Premier declared Stage 2 COVID-19 restrictions were to be put in place. We had a few new cases of community transmission of the Delta Variant of the virus and our Chief Medical Officer wasn’t taking any risks.
Stage 2 restrictions meant the hospitals were in Lockdown….no visitors allowed.
I was devastated. It had now been 4 weeks of being confined to a hospital bed, with very little options in terms of treatment. We were at the stage of the Drs considering Respite Care. In other words I would be admitted to a nursing home.
I cried and cried. I needed my husband like never before. I had pushed through every day trying to improve my mobility. I just wanted to go home. I was broken both physically and emotionally. The extreme pain had finally taken its toll.
What A Difference A Week Makes
As I write this blog post I haven’t seen my husband for 8 days. I’ve been praying all week restrictions would be lifted on the weekend.
I have also managed to convince my Specialist team, Rehab at Home would be perfect for me. They have agreed, on the provisio they can bring me back to hospital, via ambulance , if we are not coping with my intense care needs at home. I’m more than happy with this arrangement.
Yesterday morning my prayers were answered. Restrictions were lifted as from 4pm. Finally my husband and I will be reunited.
We have increased my pain meds to palliative care levels. While I feel dizzy, sick and am struggling to stay awake, they have allowed me to sit on the edge of the bed, walk 60 metres with my walker and practice standing in the shower for 5mins.
Huge progress and just enough movement for my home plans to be approved, albeit with some hesitation and concern by my medical team.
The Week Ahead
I still have 6 days of hospital left before I can be authorised to go home.
On Monday I’m having a bone marrow biopsy. The bone component is being sent to a world renowned expert in metabolic bone diseases and malignancies. To have him analyse my bone, and hopefully discover some answers, is exciting and promising.
On Wednesday I have a nerve conductivity test, to check if there is an underlying nerve disease impacting me.
Hopefully, after these two procedures, I won’t be too worse for wear and I’ll be discharged to go home via ambulance and into the care of Rehab at Home and my husband.
Oh what a happy day it will be to lie in my own bed, have a cup of tea in my china mugs, eat when I want to, sleep when I need to and even more importantly, practice my walking and sitting when my pain meds are working in my favour.
The greatest joy will be waking up every morning with my husband by my side. To hold his hand, to know I am safe and secure in his care.
The Real Journey Begins
Once home, the real journey begins.
My Specialists are unsure if I will recover enough to get back to the level of disability I had prior to this setback.
“And let us not grow weary of doing good, for in due season we will reap, if we do not give up.”Galatians 6 v 9
We are unsure if I’ll ever be able to sit long enough to ever get in a car again.
Unsure if I’ll ever be able to sit upright for any length of time, long enough to eat a whole meal, watch a movie etc.
My husband and I have the task of adjusting. Adjusting our thinking in terms of our lifestyle. Adjusting our home in terms of furniture layout and bathroom access. Adjusting our expectations of everything we considered normal.
We’ll get there. We always do. Are we scared? We are concerned. It would be an unnatural response not to be.
We are going to enjoy each day together like never before. It’s time I focused a little more on my needs, our needs, and step back a little from all my Patient Advocacy work.
Rehabilitation is going to be tough and I need to conserve all my energy to ensure I excel.
While the future is unknown I’ll be holding on to what is definite. A loving husband, a strong faith in God who I know will take care of all my needs, beautiful family and friends encouraging me on and a lovely home to provide tangible security and comfort.
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam
I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page
Australian Aspire Awards 2020 Nominee – Awarded Medal of Recognition for Individual Best Achievement Community Advocacy.
Thank you to Arthritis Queensland for the nomination!