As I turn 21 tomorrow, I’m hoping for a ‘fresh’ start and a probably unrealistic turn in my luck, so I felt it appropriate to bring you all up to date on my health – as we don’t want to still be here at Christmas, I’ll keep it brief!
One of the most significant additions has been a currently unexplained Potassium deficiency; for those of you who don’t know, a normal Potassium range is from 3.5-5.0 mEq/l. I had a phone call from my GP after a routine blood test to say that mine had dropped to 2.8 mEq/l and so supplementation had to be put into place. A week later I had my bloods repeated, and thought nothing of them, until at 03.45am the following morning, our house phone rang and it was the path lab at Queen Elizabeth Hospital; they’d been processing my blood sample, and it had come back showing that my Potassium had now dropped to <1.2 mEq/l which is a critical level, I was at risk of a cardiac arrest and I was to be rushed into A&E.
My levels were ‘stabilised’ to a level which allowed me to return home, which had to be sooner than the doctors wanted as they couldn’t get blood from anywhere (foot, wrist, arm, groin etc) and there was no one in the entirety of A&E able to access my port-a-cath, and so we had to rely on the district nurses coming home every two days for bloods, and adjusting my dose of oral Potassium from there. This is still what we are doing at the moment, but there is currently absolutely no explanation as to why this problem has arisen. It could be due to my inability to absorb, although it seemed to come on too quickly for that.
In addition to this, over the past few weeks there has been a severe deterioration in my POTS. I can’t even always transfer without passing out, and with the maximum dose of a lot of the treatments tried (Midodrine, Ivabradine, Bisoprolol, Pyridostigmine, Fludrocortisone etc) we are beginning to exhaust our options. There is the possibility of starting Octreotide which is an injection 2-3 times a day, but it has gastro side effects and with my bowel already failing to work, my teams are still trying to weigh up whether or not this is a viable option.
Considering the complexity of my health conditions and the multi systemic nature of them, UCLH have decided that the only real option is for me to have a planned admission to get the various health professionals together and try to stabilise things as much as possible. To begin with, I’ll be admitted for a minimum of a fortnight and we will go from there as to whether it’ll be longer and what procedures/operations (such as the siting of a PEG) need to be carried out. The whole situation is far from ideal, but realistically there isn’t a choice as we can’t carry on with how things are at the moment. I hate admissions as it is, and the hospital environment is one I find extremely hard to cope with, but I am holding on to the fact that it should be worth it in the long run.
Despite it being my 21st Birthday tomorrow, I still have district nurses etc coming as, with chronic illness, there is never a day off even as much as I’d like there to be. However, my family and friends who have been there for me through the good and the bad times have done everything in their power to make it special, and for them I am eternally grateful.