Since it’s coming to the end of Hip Dysplasia awareness month I wanted to introduce a new style of blog post that I will be doing.
I’m going to be talking to different people and asking them the same 15 questions but the answers are very different.
The first persons story I will be sharing is Kaylee. She is one of the first people I met on the internet and I find her story quite intriguing. She has not been officially diagnosed because she has something the doctors have never seen before.
So, heres the interview I did with her and here are her answers.
When were you diagnosed?
Early January 2015
What were the symptoms and events that made you go to the doctors/ hospital?
I started getting sharp pains in my hips. Then in mid January I collapsed at school due to the pain. By this time I was always hurting, but I would get horrible sharp pain that went from my lower back, to my hip, down my leg. In February I went to two different doctors, then I went to a bone specialist that I had been to in the past when I broke the growth plate in my foot twice.
What did the doctor do to diagnose you?
An x-ray then he sent me for an MRI arthrogram on both hips. Left hip came back fine but my labrum was torn in my right hip. Then I went to a children’s hip specialist and he did further x-rays and CT scans. Then I went to another hospital who had a team of hip specialists and two surgeons. They were in awe and said they had never seen this before, but agreed to take the case. My labrum was severely torn, ball & socket was rubbing bone on bone and my pelvis was tilted down, causing spine problems.
What did the doctor recommend?
He had already started me on anti-inflamitory medicine and I had already been to four weeks of physiotherapy. They offered a spinal fusion to fix my spine problem but that would leave me paralysed, so I opted to just live with that pain. I had surgery on the 18th of August 2015 where they fixed my labrum tear, shaved 1/4 of my bone off from my ball & socket, cut my femoral head in half, to reset my hip and put two screws in. I was in the hospital for four days and on bed rest for two months. Had to relearn everything and I started physiotherapy in October 2015. The second surgery was in January 2016 to remove the hardware.
What has been the biggest struggle?
Not being able to be the 18 year old I am, like I can’t keep a full-time job due to hip pain and complications.
What has been the best thing?
It has definitely made me stronger and made the bond with my family so much stronger as a whole.
If you could change one thing about your whole experience, what would it be?
When I was deathly sick and needed the NJ feeding tube. But if I didn’t have to change anything, I wouldn’t because its made me who I am today and I’m a lot stronger.
How did people react?
Not like I had hoped. My friends dropped me because I was what they called ‘crippled’ and ‘no fun’ to be around because I was bed ridden. My family and I got extremely closer throughout this journey though.
When I fell in September. I was taken to hospital and they admitted me for pain control. I then told them I hadn’t been able to eat or drink in two weeks, they weighed me and I had lost 12 pounds. They put an NJ feeding tube in and that literally saved my life, I was knocking on deaths door.
Do you use an aid?
I do not have an aid that I use daily but I do have my crutches and wheelchair that my doctor said to use if I have a bad pain flare.
What are your goals?
One of my biggest goals is to be able to have a full time job and of course run, hike, dance and all of that fun stuff.
Has this experience changed your outlook on the world?
Yes it has and my mood has changed. Just because someone doesn’t look sick, disabled or in pain it doesn’t mean that they aren’t. I’m also so grateful for everything.
Whats one thing in the healthcare system that is a problem you would like to change?
I wish doctors would listen to you the first time you tell them that something is really wrong with your body. We know our bodies better than anyone else.
Whats one thing you would tell someone who has just found out they have something similar to you?
Don’t give up. Yes, it’s hard, very hard and we get aggravated at our bodies and always ask why, but that it will get better. Just have faith and stay strong.
Whats one thing you would tell an able-bodied person?
Don’t take being able to walk and run for granted. Please don’t.
Kaylee fell in April and was admitted again to the hospital for pain control and is currently doing another six weeks of physiotherapy.