My Life With Adrenal Insufficiency

4 Weeks on The Adrenal Pump Cortisol Infusion Therapy

adrenal Pump

4 Weeks on The Adrenal Pump Cortisol Infusion Therapy

I have been trialling the Adrenal Pump ( cortisol infusion therapy) privately for 4 weeks now and I’ve been asked lots of questions by lots of people. I decided today to share an update and answer some of the questions I’ve been asked.

adrenal Pump

Background on my battle to try out the adrenal pump

I’ve been trying to access a medical treatment called Subcutaneous Hydrocortisone Infusion Therapy for three years. It’s been a long battle to get to this point. I spent three years extremely unwell and have researched treatment options for Adrenal Insufficiency.

After lots of research and talking to others using this treatment I came to the view the adrenal pump is a good option for some and not for others. There are pros and cons but for me I felt it would be my best option and so I fought to get this far and find someone who could help me try out this treatment.

It’s been three years of asking and being told no by the NHS and I eventually found a private specialist and paid for the treatment myself. I only had enough money to pay for a trial to see if the Adrenal Pump would work for me.

It’s cost a few thousand pounds to get to this point but after four weeks I can say it’s been a success to this point. I am now used to having a pump. I prefer it to tablets. I don’t have the memory issues I had before and can think more clearly. I am much less nauseous and dizzy. My blood pressure is stable in the mornings and I can do more.

How has my health changed so far?

Cortisol infusion therapy has improved my quality of life to some extent and kept me out of hospital when usually I would have been admitted. It’s not been easy and is a learning curve and I now have the battle of raising the money for my own pump as I’m currently borrowing one.

The good news is I have been offered a second hand pump which will be able to keep me on the treatment until I’ve raise the £3000 I need for my adrenal pump. I’m keeping my fingers crossed this will happen.

Each week my health has felt a little better. I did struggle the week of my period and was stuck in bed exhausted and unwell, but usually I go into hospital with a period and adrenal insufficiency and so the pump has helped keep me home with my daughter.

The biggest difference is brain fog, pain, nausea and dizzyness. I have always felt this way for three years. Now after four weeks, I do feel this way but when it happens I can recognise it and do something about it, (increase my steroids medication) and rest.

I still suffer incredible fatigue but I feel I have more energy. Before I had no strength. I had to choose between the basics in the home such as do I shower or make some food or get dressed. I would often stay in bed and reserve energy for parenting and have stayed in my pyjamas so often.

Now, I am doing more. I am still making choices as I’m not better, I’m just managing this condition better.

Yesterday I managed to go out with John and Sylvia for two hours, but then had to rest in the afternoon and could not do any dinner. I also had to wait until today to have the energy to shower and then go out to the doctors.

So I’m still pacing myself but I am able to do more than before and I’m not having the chronic pain I was before. I do have back pain but that’s not the type of pain I’ve had for 3 years and is bearable. I’m also having headaches still but my mind is more clear.

Since going on the pump, I can notice when I am getting unwell and act. Before I would always be so ill I would not know when it was getting worse. Now I can tell when I suddenly feel sick and need to rest and I can bolus (take extra medication immediately) when I need to top up or stress dose. I never had that option with tablets and tablets take time to absorb and work.

I think because I’m finally getting continuous cortisol like a normal person, rather than it dropping in and out of my system as it has since I went on medication three years ago, things have improved. I am not better, I am not healed but I am improved.

I will always struggle and have Adrenal Insufficiency. I will still have low adrenal episodes,  adrenal crisis and struggle when I get a virus and infection or extra stress on the body but I do believe this treatment will allow me to do more for me and for my child and it is giving me a better quality of life.

I will keep doing what I can to better manage my health and pace myself and rest when I have to each day but I will also be able to enjoy life a little more and not feel as sick constantly.

I am excited and have 4 more weeks until I have to hand this pump back. I was fortunate to extend my trial as it was originally just for one month but it’s now for 4 more weeks to give me time to provide my own pump. I’m working on it and pleased to know that this treatment is right for me.

It’s taking some getting use to, having a small pump attached 24 hours a day, but its so worth it and I just feel so happy to have this opportunity. I’ll do all I can to keep saving and improve my quality of life permanently. This is worth it. I can handle the needles, the sets and the awkwardness of showering and having a pump. This is worth it and I am glad I have finally had this opportunity.

If your able to contribute to my Adrenal Pump fund please do so…. Here   xxx

14 Comments

  1. So happy for you Angela! It does take time to recover. I’m just starting my recovery! After so long being sick and stuck in bed, it takes a lot of time and work to get healthy again, but we will get there. We will always have to pick and choose what we spend our energy on simply because we only get so much to use each day, it is not renewable like others that do not have adrenal insufficiency. I’m so glad to hear you’re improving and I hope you are able to get the second hand pump in the meantime. 🙂

  2. I’ve been silently following you and I’m so pleased that the pump is working for you. It must really help improve your life quality being able to feel less fogged and weak 🙂 good luck raising funds for your own pump. If you setup a go fund me, I’d happily donate xx

    1. Yes. It is so worth it. The worst case senario is i dont get the funds in time and the pump i hoping to use does not come through and then id go back to being so sick and I dont want that so i’ll keep ging for gold and try to get what I need on NHS.

  3. I am so so happy to hear that things are improving and you are feeling better! I hate that everything is so difficult for you, and the road is so rocky :/ From being told ‘No’ for years, to everything costing so incredibly much-it’s very disheartening to me. I don’t know much about healthcare in the UK, but here in the US-it’s pretty awful. I seriously hope you’re able to get the pump that you need, so you can continue to improve! Sending love <3

    1. Thanks. It’s not been easy and I have been unable so far to get the right treatment on the public health system but I did get it private here although there is only one or two in the country so it’s not very good hear for people with AI.

  4. I’m newly on the pump as will, 3 months in, and my experience has been very similar. I can see improvements but still struggling trying to get balanced. Things will keep getting better for you! Good job listening to your body. Thanks for the blog and good luck to you!

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