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My 2016 Health Goals And My Adrenal Pump Plan
As many of my readers are aware, I am a Mother with serious Chronic Illness. I have been unwell for over seven years and was officially diagnosed with Secondary Adrenal Insufficiency in 2013 after I collapsed and was admitted to hospital. I was then diagnosed with Human Growth Hormone Deficiency in 2015 and started growth hormone injections in Dec 2015.
For the past few years, I’ve struggled to do the basic of things. I spend around five out of seven days in bed with the odd trip out of the home. I’ve been able to walk some days, other times I have been too unwell. I now have a wheelchair which I use for long distance. I simply am not well enough most of the time.
Since diagnosis my Adrenal Health never seems to be under control. I’ve had tests, day curves and more tests, however I still have serious adrenal symptoms. I get dizzy easily and nauseous. Sometimes my blood sugars drop, my BP can drop dangerously low and I may need treatment at the hospital.
In fact since diagnosis of AI I’ve had so many trips to hospital, I have honestly now lost track of how many. My steroid medication dosage has been changed more times than I can remember. I am currently on 20mg a day, however this drops in and out of my system causing fatigue and headaches when I’m low in cortisol. On tablets I’m always slightly under or over replaced and the best solution I can see would be to have ContinuousHydrocortisone replacement therapy also known as The Adrenal Pump.
In 2015 there was an Adrenal Pump study conducted for Patients with Secondary Adrenal Insufficiency close to where I live. The Manchester medical paper explores the relative costs of treatment for steroid-dependent patients with a history of frequent hospital admissions. The paper concludes that for some patients, a cortisol pump may be cost-effective. All 3 of the cases reported in this paper had secondary adrenal insufficiency, like me.
Based on what I’ve read, heard and studied, I know the Adrenal Pump is the best option for me and I know it would make massive changes to my quality of life.
I’ve worked hard last year figuring out my options and searching for a way to get access to the Adrenal Pump. I am now one step closer and these are my next steps or goals for 2016.
Lose Weight – I plan to lose a lot of weight over the coming months. This will not only help me get a healthier BMI, prevent Diabetes and have more energy, losing my excess weight will allow me to reduce my daily Steroid replacement dose. I am dependent on steroids to live and without them I would die, however the smaller the dose the better as steroids can cause negative and unwanted side effects. This would also make having an Adrenal Pump much more affordable as my monthly medication would not cost as much money.
Find A New Endocrinologist– My GP has agreed to refer me to a new Endocrinologist. I have an appointment on the 7th January to discuss where and who I would like to be referred to. My current Endo team is in a small hospital and does not have any experience with the Adrenal Pump. I now know which Endo I want to be referred to and I know that this Endocrinologist has worked with the Adrenal Pump and patients with Secondary Adrenal Insufficiency. This will give me a chance to discuss what I would like with someone who understands. A referral may take 2-4 months so I hope to see him by April fingers crossed.
Save up for the Adrenal Pump– I plan to save and raise the £9000 I will need for an Adrenal Pump, consumables and medication for the first 12-18 months. I’ll do this in 2016. I can do it if I work on my fundraising campaign and continue blogging to earn an income. I need to believe I can and I will.
Strengthen my Muscles– I have seen a physiotherapist and have some small exercises to practice. They are a struggle and I cant always do them but I hope to strengthen my weak muscles and eventually get into the swimming pool in the second half of 2016 to try some gentle water walking.
Electric Wheelchair and Adapted Home– I plan to get an Electric Wheelchair to enable me to go to school with my daughter some mornings and have more independence when I am having better days. I was assessed on the NHS for a wheelchair however our home is not suitable. I was told once we have a home with ramps and doors which are wide enough I will meet the criteria for a powered wheelchair. Therefore my goal is to move into a home in our current village which is wheelchair friendly. We have settled in our village and I don’t want to uproot my daughter. She has built friendships and loves the local community as do John and I and so in 2016 I hope to move to a more suitable home and get a powered wheelchair.
So this is my plan. I will work hard to achieve all 5 goals. It is not going to be easy and will take months but if I have a plan then I can work towards it and by the end of 2016, my quality of living and my family’s life could be a while lot better.