Raising Money For My Adrenal Pump
Well it’s 3am in the morning and I cannot sleep. I’ve tried for hours and decided to write my thoughts down then take a few deep breaths and try again. So here goes.
For three years I have had Adrenal Insufficiency an illness which is life threatening at times and disabling. Many of my dreams and goals were taken away. Same for my husband and our child. Whilst I may look okay on the outside I am no always okay the inside.
I am currently on steroid tablets, tablets which I cannot take according to the natural circadian rhythm. Cortisol is generally released slowly through the night so that the body has a high supply when waking up ready for the stresses of the day.
For someone with AI, you wake up with very little or no cortisol and as a result your very unwell until you take your medication. This takes one hour or longer to absorb, (when it absorbs) and then shoots the cortisol levels up in one fowl swoop to suddenly drop out of the system after 5-6 hours. It depends on the patient and how fast they clear Cortisol from the body.
The reality is…. steroid tablets cannot mimic the natural cortisol circadian rhythm. It’s impossible and so I have low BP in the morning, often dangerously low. I am dizzy and sick and cant get up. Then a few hours later I have the right amount. Suddenly having the right amount in the body is not going to make everything better. If you have been hit by a bus in the morning, your not going to be well in the afternoon and so it is with my tablets, once I get them in my system I may have the right amount but I will have a knock on effect of fatigue, exhaustion and illness as my body recovers from the morning.
It’s a cycle and it happens over and over every day, in the morning, at lunch, in the afternoon. Cortisol can suddenly get used up under emotional stress, a sudden shock, and for me when I am in a car which suddenly slams on the breaks or when the door suddenly bangs loud, this frightens my body and I can feel weak like collapsing. It changes from day to day but low cortisol will lead to adrenal crisis and adrenal crisis if untreated will lead to death.
It’s always a battle to keep the right amount of cortisol in the body and it’s a battle to mimic the cortisol circadian rhythm as best as you can with tablets. It’s like trying to fit a square peg into a round hole, you just cant do it.
However quite a few years ago, the Diabetes pump was invented. This was a pump which continuously infuses insulin into the body at a set rate. Well, several years ago, in a few different place, countries and locations, professors and some doctors decided to try using a diabetes pump for someone with Adrenal Insufficiency. Instead of continuous infusion of insulin, you continuously infuse cortisol using the steroid liquid Solu-cortef.
This was genius. The research showed that the Adrenal Pump/diabetes pump with Cortisol medication improved quality of life. It helped better mimic the cortisol circadian rhythm and helped reduce fatigue, exhaustion and headaches. It reduced hospital admissions and adrenal crisis. However only a few doctors have used this medical treatment and it’s not yet used by mainstream NHS.
Several doctors who work for the NHS have done trials with Adrenal Pumps and I’ve read the research, every time the patients quality of life improved. The liquid medication is 1/3 of the price of steroid tablets.
At the moment the NHS barely allow patients with AI to have access to the pump. I know one person on the pump who managed to get it on the NHS and one patient who was part of a trial study on the NHS and was able to keep the pump afterwards. Knowledge of the medicine is very limited and specialised and after 3 years and 3 different hospitals, I’ve been told by each NHS Endocrinologist I’ve asked, no I cannot have the treatment because they don’t have the knowledge to use the treatment.
I think there is more to it than that, there are red tapes everywhere, forms to fill, applications to do and why would a doctor want to try something new they are unsure of?
Well this is my life and I would like to at least try out the Adrenal Pump to see if it makes a difference to my life the way it has to 3 people I know in the UK, those in the research I’ve read and the people in the USA that I know who are on an adrenal pump for Adrenal Insufficiency.
The sad thing is one hospital admission would generally cost more than the cost of starting the pump privately. I have been in hospital about 18-22 times, since diagnosis and I’ve lost count. This could save the NHS money but there are rules which actually waste money.
My monthly tablets are £120 but the liquids for an Adrenal Pump is only £30 per month.
The only thing I can do having exhausted all options is to get the Adrenal Pump privately. I owe it to myself, to my husband and my child to at least find out if this treatment can improve my life. It’s not a cure but it might just allow me to shower more often, cook, spend more time with my child, go to the shop, leave the home and be more normal.
What if.. just what if I could exercise and one day work more efficiently or even have a child with John??
I will never be as a healthy person but I can get better than where I’m at now. So here is the good news. After 3 years of searching I’ve found an Endocrinologist willing to allow me to trial this pump and see if it helps improve my quality of living each day. The Doctor thinks this will make a big difference to my health.
The not so great part is – It’s not on the NHS, this is private. I have to pay fees to set up the pump, to pay for the pump and then £150 a month thereafter which is £30 for medication and £120 for pump wires/needles etc.
It seems unfair because by getting the Pump I could save the NHS thousands in hospital costs. Yet they wont pay for the medication, the liquid hydrocortisone. They will only cover tablets or even consider this option.
I can start my pump trial once I have the money. I need £5000 to cover all the costs including staying in London for a week while the pump tests and rates are set up correctly, the cost of seeing the private doctor, buying the actual pump and a years worth of medication.
I set up an adrenal pump fund some time ago and had one or two kind donations which I added my own savings to to attend my first appointment.
Now I need to raise £5000.
I am selling everything we have that we don’t need. We are fundraising. Sylvia is doing a sponsored jump. So far we have £85 in donations. Again this is wonderful but I’m hoping for more support. I have so many friends who I’d love to help me. Just £1 would make a difference or a share online, it could help me to get more well and be there more for Sylvia.
So I am doing what I can and hoping to get the funds together. I’ll keep coming up with ideas and ways to get what we need. What my family needs for me to have the opportunity to try this medical treatment which sounds so promising and which I know deep down inside will make a difference to our lives.
Please do share this and or donate and support me if you can.
Disclosure: The Doctor I am working with has asked not to be named at this stage and of course I have to respect this. I don’t have a choice in the matter. This is still a new treatment/research and will help others wanting the treatment. The more who get the pump the better and the more Endocrinologost will feel confident about using this treatment. We should not have to fight for this and I want it for others with this condition as well as for me. I guess taking this step could open the door to others in the future too.