Back in 2013, after collapsing and being admitted to hospital, I was diagnosed with Adrenal Insufficiency. At the time doctors were unsure whether this was primary AI also known as Addison’s Disease or Secondary AI.
It’s taken several years but I now know without any doubt that I have Secondary Adrenal Insufficiency. I’ve now been on Hydrocortisone replacement therapy for 30 months and my health has never been the same.
I am what many patients with Adrenal Insufficiency label housebound for 70% of the time. I go to appointments and the occasional outing which burns me out but my life is far from normal. I suffer chronic fatigue, muscle aches and pains and many other low cortisol symptoms on and off.
I have been diagnosed with a second hormone deficiency, Human Growth Hormone Deficiency which explains my more severe muscle weakness, continuous brain fog and anxious symptoms and the fact Ive spent the last 30 months needing a wheelchair for long distance. I’ve just started treatment for GHD, however I and many others with Adrenal Insufficiency am still unwell most of the time.
So, when I heard about an “Adrenal Pump” which certain patients across the world were claiming “changed their lives” I had to find out more. I researched and I researched. I learned about Professor HIndMarsh from Great Ormond Street Children’s Hospital and of his success in treating children with Congenital Adrenal Hyperplasia.
Unlike steroid tablets which are put into the system and then cause the body to be either under or over replaced, Continuous Hydrocortisone replacement therapy, allows the pump to mimic the cortisol circadian cycle, allowing patients to receive the optimal dosage. This clearly leads to improved quality of life.
I wrote a blog post called Why the Adrenal Pump is a Brilliant Method for treating Adrenal Insufficiency. it had a lot of engagement on social media and a lot of people saying they wish they could have it. I also received a letter from a Mother from the USA who had travelled to America to have her son set up on the Adrenal Pump. Her letter was encouraging as the pump had dramatically changed her son’s life.
The Mother said,
“We started infusing in February 2010 and our son has not had an adrenal crisis since!! It has changed our lives!”
Now as in every case, one medication option is not always the correct option for all patients, however for the hundreds or thousands around the world struggling day in, day out with a poor quality of life, the Pump could potentially change everything.
Then comes the tricky part.
Those Not On The Pump Who Want to Be
There are many people not on the Adrenal pump who would love the opportunity to try this and have the chance to improve quality of life.
-It is so unfair that they cannot have access to the pump.
-It is an unaffordable option due to initial cost of the pump and the ongoing costs of medication and supplies
-Are fighting to try and get access to the pump, searching for a endocrinologist who will be willing to try out this life changing option
-Find it hard reading about others who have access to the pump who’s quality of life now allows them to function and do things that were once not an option.
Feel that those using the pump should be sharing everything about their experience, including the Endocrinologists they are working with and the dosing schedule in order for the pump to become more accessible
Realise it is a combination of raising awareness about AI and the pump and finding willing Doctors able to conduct research which will lead to the pump being more widely available throughout the world.
Those all ready on the Adrenal Pump
Know that getting an Adrenal Pump for continuous Hydrocortisone replacement therapy is not the be all and end all to Adrenal Insufficiency. It can take months and a lot of hard work to get the rates right and it not without difficulties and will still be a struggle when the patent is unwell and needs to stress dose. It will however improve daily life but takes a lot of hard work to get there.
Those on the pump have a right to privacy. Sharing experiences is always up to the patient. Someone using the adrenal pump does not have to share their experience or any other information about how they accessed the pump or how they use it with anyone else.
Of course those not on the pump want this information but at the end of the day no one is obligated nor should they have to give out all there personal medical information.
From what I’ve read getting to the point of receiving an Adrenal pump has been a personal battle for every single patient who has one. Some have fought years to try and get one. Some have fundraised, changed Endo Specialists many times, they have battled to get to the point they are at and this really should be respected.
The adrenal pump is not an easy ride nor is it a magical option or a miracle cure. Some who are really sick day in day out may see the pump as just that but it is not an easy option and will be hard work for anyone who gets the pump
Those on the pump still have AI and still have to carefully manage the illness although daily life quality is much better.
Where do I stand
I want access to the Adrenal Pump so that my quality of life will improve as a Mother and individual wanting to make the most of life.
I understand it is not cheap but genuinely feel it would be a cheaper long term option for the NHS than for me to go to hospital with Adrenal Insufficiency complications or adrenal crisis as often as I do each year.
I have been fighting for a year to raise awareness for my illness and work towards the pump. I am going to be changing Endocrinologists because my current one is unwilling to work with me and the pump. I will keep fighting until I get there.
Because I’m a blogger I will keep blogging to get the support and help I need and I plan to share my experience of getting the pump. I genuinely hope to be trying this medication by mid 2016. I hope to be trialling the pump by July 2016 and when I find the doctor to do this I will be sharing my experiences.
However this is my own choice and will be me doing my part to try and get the pump for more people and it does not mean others on the medication have to or should share their experiences.
The one thing I do not like however is someone all ready on the pump telling me that I should not bother and that I cant have the pump because in their opinion I don’t need it as much as them. I did get one email asking me who I think I am and why do I think I am more important than others – just because I have a child and husband.
I have never said am more important than anyone else with this illness but what I am is -A Fighter! I am an Educator and I am a Writer and I am a digital Influencer and I have the ability to share my experiences and teach others as to influence the world for the better and I will use the gifts and talents god has given me to fight for my right to be a healthy individual, to give my child a healthy mother and to share my experience with the world and no amount of nasty emails or letters will stop this!
So with this said, what do I want for Christmas?
Well the answer is clear! All I want for Christmas is an Adrenal Pump. I’ve Written my version of this Christmas Song. Enjoy.
How will I get this?
Well I am saving towards the pump and am going to transfer to a new hospital in January. I’m also doing more research and going to raise more awareness in March and April next year. This is what I’ll do. I have a plan and I’ll get there eventually. It may not be an easy journey but I will fight for the right to the best treatment for my health condition.