Two weeks on the Adrenal Pump an Update
Well this week has been an interesting one. Sylvia went to stay with my parents for her first week of the school holidays. John and I dropped her off in Yorkshire and then we returned back to Lancashire for the week off.
I have been feeling quite unwell for about 3 days. I felt exhausted, weak, tired and really sick. I got a letter from the Doctor saying I am low in Zinc, Iron and Folate, so I assumed this is partly why I was feeling so exhausted and weak.
I then discovered I had my period. (Something which is often irregular and effects my Adrenal Insufficiency) when it happens. So that on top of low Iron has made me feel very weak. I then woke up this morning with a virus, headache and runny nose. Having a virus really makes you ill when you have AI. I have had to stress dose my medication and because I’m on the adrenal pump, It was a matter of changing the rates over from the regular basal pattern to the pattern the nurse helped me set for illness.
So, after a day on double medication, I’m less weak and able to think clearly again. I feel crap and sick but for several days before I knew I was fighting a virus and everything appeared okay, I could not think for a moment, not think straight to email, to write or do anything. I always struggle with this but it gets so much more worse when I’m low in Cortisol.
I just didn’t know why I was so ill before the virus presented. That’s one issue with Adrenal Insufficiency, there is no finger prick test to check levels, it’s go by how you feel and sometimes if you get really ill and cant find a reason it can be confusing.
Sometimes when I get ill, I check my body for an infection or rash, under my chest or in other places and sometimes I find one and know why I feel sick. Other times there is no visible infection and we can only assume something is going on in the inside.
When I have infection, I need to stress dose but if I don’t know I have one, it’s tricky and I could end up in hospital.
On Sunday last week, I entered into the start of an adrenal crisis, with Diaorreah and vomiting and for the first time in my life, I didn’t have to take tablets which don’t absorb and give myself an emergency injection and go to hospital.
I actually hit the bolus button on the Adrenal pump. It gave me an extra 5mg of hydrocortisone and then I doubled my dose for the day by switching to the double rate. Within 5 hours I was really okay, sick but well enough to manage and stay home and not go into hospital.
Adrenal Pump 1 – Hospital 0
Then today after 3 days of getting more and more unwell, unable to think and weak, when the virus I have became apparent, I switched to the double dose rate on my pump and hey presto, in the afternoon, I felt sick as anyone would with a virus and cold but the AI was managed. Again, this would have put me in hospital before.
Adrenal Pump 2- Hospital 0
Also, I have always gone into adrenal crisis and been admitted to hospital when I’ve had a period. Every single time. I simply changed the rate as required, making sure I have cortisol to deal with pain through the night and hey presto- I didn’t go into hospital.
Adrenal Pump 3 – Hospital 0
This is no way means I am better. I will always have this condition and need to learn to manage it better but, the good news is, it has kept me out of hospital 3 times when usually I’d be at hospital. Now I know I had to pay for it but it was worth it.
I’m on a four week trial which is slowly coming to an end. I need my own pump. I have been too unwell to fundraise or sell much this week or do what I want to to try and get the funds but I will try next week. I know the pump is a tool for managing the condition better and it wont always keep me out of hospital but it will reduce my visits which is better for me and Sylvia and John.
So what has changed?
I don’t feel nauseous anymore. I used to feel this way all the time everyday. It was way worse in the morning, (like being forever pregnant) my BP would drop and I would feel dizzy. I have felt dizzy on occasion and nauseous when I’ve needed to increase my dose but no morning sickness and knock on sickness in the day.
I don’t have the stabbing pain in my body and muscles that I have had for three years. The stabbing pains in my muscles have almost gone. Its great to not be in chronic pain. I can now feel serious back pain and tell that I have a bad back as the stabbing pain has gone and helped me to figure it out.
I have a little more energy. I still feel tired and exhausted but then I am low in Iron and several vitamins so I’m unsure if this is due to the low Iron and AI or maybe something else. I need to give this more time.
What is still the same?
I still have Adrenal Insufficiency. I am still at risk of dying and crisis and need to monitor my medication carefully.
I still get tired very quickly doing things and need lots of rest.
I still get headaches- (I’m working on my water intake to see if that helps)
I still have brain fog- (but not as bad as it used to be and much better in the mornings)
Where to now?
I am trialling the pump for four weeks. I was told I’d be pretty certain after 4 weeks if it is good for me. I allready know the answer is YES. I’m not cured but my quality of life has improved in several areas and I feel a difference. I am still going to be unwell but I’d rather be on a pump and keep myself out of hospital and not have the continuous stress and worry of “not forgetting” medication. There are many benefits and I am seeing how it helps me.
I am hopeful things will improve more. However I have more than one health condition and I need to get my vitamins and Iron level right to see even more and need more time to see the full impact being on Subcutaneous hydrocortisone infusion therapy has for me.
So far, it’s the best medical decision I ever made.
-I am seeing a private doctor in London and getting treated privately. I am unable to share details of the Doctor at this point as I’m his first patient to trial the pump and he requested I didn’t go and tell everyone who he is.
It is my hope more of us can use this treatment to better manage Adrenal Insufficiency in future. I sure hope so.