What It’s Like Using An Adrenal Pump 12 Week Update
Today I’ve been on the Adrenal Pump for my Adrenal Insufficiency for almost 3 months. It’s not been an easy ride and I’ve had ups and downs but I wanted to share how things are going as I’ve not written about it in a while.
I’ll start by saying I always knew the pump would not heal or cure me, I just wanted a better quality of life and the pump so far has given me this. Before the pump I was having adrenal crisis episodes regular, hospital visits, low blood pressure every morning and trips to A and E.
Since going on the Adrenal Pump, where my cortisol is delivered continuously over 24 hours, my Adrenal health has become more stable. I did have struggles with Oral Hydrocortisone medication and am so so happy I no longer need to rely on those tablets to live.
I’ve not been to hospital for an adrenal episode since May and I’ve been able to manage my condition at home which means, more time with my family. I am still very unwell but have been able to do more than I used to do and for that I’m truly grateful.
Every experience is different and whilst today I am sharing my own personal experience, it wont be the same for everyone with my condition and as always I recommend any advice is sought from your own personal Endocrinologist. I’m not a doctor, just a patient sharing how my health is at the moment.
So I’ll start with the occasions when I’ve been very unwell.
I’ve had 4 infections (I get skin infections easily and other infections) and so I’ve had to increase my steroid dose to cover these times when I’ve been extra unwell, feeling dizzy and sick the same as I would be were I on tablets Hydrocortisone.
Before the pump I would have struggled to manage these situations, even with double dosing I would most likely have ended up in hospital as I have on many occasions in the past 3 years. Therefore, I can clearly state that having a pump where I can give myself an emergency bolus of medication and instantly double up my dose makes a huge difference for me.
Health wise I still have exhaustion and fatigue and struggle to do the things I’d like to do, where I used to stay in the home most days, I am managing to get out one-two times a week for about 1-2 hours. My blog shows our time out and it may appear I do a lot but the reality is I spend a lot of time sleeping and resting still. There is so much more I want to do but I’m not able yet.
Someone emailed me and asked how on earth I can blog and go out and about all the time with Adrenal Insufficiency. I can’t. Yes I went to a spa day a few weeks ago but I was incredibly unwell and spent a week afterwards still unwell. This week I went with my daughter to the Family Pet Show which I cant wait to write about but I was not able to stand for very long and had to sit on a sofa feeling dizzy and sick whilst my family looked around. The reality is I’ve had my mum visiting and helping out with everything and were she not here I would not have even made it to the pet show.
I am still cancelling plans and not able to go to many things I want to even with my pump. This week I had to turn down an invitation to a London fashion show and an invite to a movie screening in London. I simply cant go. It’s not just the blog events I cant do though, I’ve not even been able to get to the supermarket with my mum this week which would have been nice and I still cant make it to take Sylvia to school. I am too unwell to do many of the basics as a Mother.
I have some home help and my husband is helping me. I guess the difference from tablets to the pump is firstly that I’m not going into hospital and that I can do more such as walk around the house. I’ve not needed the wheelchair in a while which is great but I still get so so tired and need to pace and cant do what everyday healthy people do.
I think it will take time for my body to heal even more from 3 years of unstable health. I am still at risk of crisis but I can manage it much better with a pump. Also I don’t have the stress of worrying have I remembered to take my meds. My brain fog from when I had tablets has improved a lot and it’s no way near as bad as before.
Because of a run of infections I’ve been double dosing a lot and have not lost much weight in the past 7 weeks. It’s a little discouraging but I am hoping to get through and keep at my weight loss.
I think the biggest difference which is certainly adrenal related for me is the pain I was in. I was in chronic pain, which I was told was nerve pain or fibromyalgia type pain but it disappeared the week I began the adrenal pump and has not returned. I still have back pain which Ive had many years even before Sylvia was born but not the aching severe pain I had each day on cortisol tablets.
During the first 8 weeks of my adrenal pump I had no headaches but they came back 4 weeks ago and are really affecting my ability to concentrate and do things. I think this may be related to a vitamin deficiency following Gastric Bypass rather than the pump though and I will be getting all my vitamin levels rechecked this week.
So, the pump is great for me as it’s made me more stable. It has allowed me to spend more time with Sylvia in the home, (if I pace myself) and to go out once or twice in a week which is fabulous. If I do more than this I suffer chronic fatigue symptoms and it can take a long time to recover.
I’m much happier being able to do more. My quality of life has improved, although I am still chronically unwell and saving up and going to London to get the help I needed was certainly worth every penny.
I’d like to thank the 22 people who donated to my Adrenal pump fund. I appreciate your support. John and I sacrificed so much to save and pay for the rest of the treatment I’ve been undergoing but it was a sacrifice worth making.
I am still saving for a new adrenal pump of my own, one I can get guaranteed and Insured. I will be two thirds of the way there by the end of this month. Until then I will be handing back the pump I’ve borrowed as it is due to go back and I’ll be using my “new second hand pump” which I have managed to acquire from the USA. Exciting!
I’m really happy to be able to continue using the adrenal pump now my trial period is over and that I don’t have to go back onto tablets. It was a real worry trying to get the money together over the past three months. I am funding my own medications and supplies monthly which is not easy and in time as I demonstrate that the pump is keeping me out of hospital, I may be able to get the medication funded by the NHS. That is my hope. Pump medication is 4 times cheaper than the tablets the NHS prescribe me anyway and as the pump will help prevent many hospital stays I think eventually I will be able to sway the NHS although it could take many months.
I just have to be patient and pay my own way for now. The pump is so worth it and I hope it can help others too in the future.