Nicole's Addison's is so severe she needs a kidney
Nicole is 34 years of age, she loves music, reading and before her diagnosis she went to the gym and liked to keep fit. But even the fittest of people can get a diagnosis, after being unwell for over ten years and her health undiagnosed she was not able to keep active and enjoy the things she loves. Instead she spent her time in and out of hospital with trouble breathing, stomach pains and the doctors unable to find a diagnosis.
Photo by: Amanda Akokhia
In September 2020...
“Amidst COVID and during another hospital admission a consultant decided to do a synacthen stimulation test, this test confirmed that I have Addison’s disease.
I couldn’t believe I finally had a diagnosis, and this explained why I had been feeling so unwell for all those years. Although I felt relieved to have a diagnosis finally, I was also terrified.
I didn’t know anything about Addison’s disease. I was told that it affects my adrenal glands and that I would need to be on steroids for the rest of my life. This was a lot to take in especially as just one month earlier in August I had also been diagnosed with stage 3 Thyroid cancer and on top of that I was also diagnosed with a benign brain tumour.
I just didn’t know how I was going to manage all of this.”
It's now March 2021...
“My surgery had been delayed 4 times due to COVID, and by this time the cancer had already spread to my lymph nodes, I had to receive 12 rounds of radiotherapy to beat the cancer. Thankfully the Thyroid cancer is now in remission. Everyone thinks because I’m in remission I should be okay, but it’s a struggle.
I’m always worried it will come back. The benign brain tumour is still being treated and may require surgery, dependent on test results after I’ve finished treatment; it remains a huge threat to my life.
As the years have gone by, I still have regular hospital admissions due to having a symptom of Addison’s disease called an Addison crisis. An Addison crisis is also known as an adrenal crisis or an acute adrenal insufficiency, which is an endocrinologic emergency with a high mortality rate. I always find this very difficult to deal with.”
Nicole's condition is severe - she is now in need of a kidney transplant
Last year Nicole was told that due to her Addison’s disease being so severe it had started to affect her left kidney and it’s now got to a point where she needs a kidney transplant from a living or deceased donor.
“I’m still trying to make sense of this. Although I have family and friends around me, I’m finding the journey quite lonely as I don’t know anyone going through this. I am very close to two of my sisters and I have two nieces and two nephews I adore. My mum is in my life and my dad passed away 8 years ago.”
