Well..... I always get asked, what's wrong with you? What's your diagnosis? What's your prognosis?
The awnser is.... we dont know! I have lots of diagnosis, like my lung disease and type 1 diabetes but because all my conditions have not been seen together before all in one person they dont know! I have been told Atypical Cystic Fibrosis, Pompe Disease, Progressive Muscular Dystrophy and many more possiblities but none totally fitted 'me'. The most Likley thing that I have been told is an unknown form of Mitochondrial Disease which does explain and fit 'me'. I am under investigation for this at the moment but im not hanging my hopes on a diagnosis; im just happy being ME and i suppose i just have to accept that im weird!! haha But i would like to know!!!
So here is the LIST of my Diagnosis -
.Bronchomalacia, structural lung disease (only 2 lobes in right lung ect..)
deficiency – (weekly immunoglobulin infusions were tried but did not raise my immune system)
.Chronic pulmonary embolic disease with stable Pulmonary Hypertension
. Unknown form of Progressive
. Mild Asthma
Not a lot.... haha
Prognosis - well, life expectancy - i dont really believe in this, i think if you want / need to carry on living then you can, if your tired and have done what you need to do and have put up with a fight for long enough, then you can just let go and breathe easy. My lung function is low at around 26%, im hypoxic on arterial blood gasses (im in type 1 respiratory failure)*Update i now have a high co2 when well on blood gasses but my Bi-pap helps this* and when im sick i go into type 2 respiratory failure and have to be fully ventilated or on continuous Non-invasive ventilation. This on its own reduces my 'life expectancy' but i go by thinking if i try and not get any infections (which is impossible lol) then my lung function will hopefully stay stable or just drop a little bit, my last infection left me at 14% but with 4 weeks of IV's and antibiotics it is now stable at 26%.
So yes, my life will be shorter than the average person but then again the truth of the matter is anyone could be hit by a bus and die any day!
As you can imagine i take A LOT of medication But im going to put my routine on another page :)
Some people say, oh poor you, you must feel awful. But im like, well no; not really! Yes i do feel like total crap by the end of the day being of my ventilator (Bi-pap) for so long and when my sugars are not right or im ill yes i feel like total crap but on a good day i can do anything i want!! (within reason) and believe me, when there is a will there IS a way!!! I do spend most of my life in hospital's but when i'm not, i have an AMAZING life, family, friends, carers and there is no way on earth i would ever give that up! My little sister is Amazing, wonderful, beautiful and she does not know how brave she is!!!