Hey everyone. Wow so much has happened when we first created this page !!
More hospital visits, heart attacks, bowel obstructions, malnutrition, feeding tubes, unable to work, kidney and organ problems and mental health deteriorating just to name a few !!!
To keep updated it's best to follow our Facebook page https://facebook.com/jonoskidneyfight
Hey everyone. Its been a while since i have jumped on and updated. Living with kidney failure and dialysis means that things that may be cause for concern for others are just part of our every day life now. Feeling good, feeling crap, high blood pressure, low blood pressure, arguing with doctors about treatment plans, losing weight, fluid overloading, fluid underloading. Its all become part of our daily however its good to keep everyone in the loop.
Looking back in time it has now been nearly 12 months of Jono ending up in hospital and getting his chest lines put through for him to start hemodialysis. The past 12 months since that happened have been absolutely crazy and a huge roller coaster! Multiple hospital admissions, 2 surgeries, 1 heart attack, 2 bouts of pneumonia, malnourishment, low haemoglobin, blood transfusions and the list goes on !
I remember that day after getting his lines put in and him starting hemo. It was absolutely heart breaking for the both of us and i just remember looking at him and crying. There we were surrounded by the old, the sick, the diabetic and he just looked so out of place. How could the universe be so cruel and how on earth were we meant to get through this?
Well we did get through and we are so grateful for those who stuck by Jonos side. We are no longer naive or complacent with treatment and have learnt what is best for Jono NOT what the doctors say is best for him. Nearly every week Jono ends up arguing with a nurse trying to do something to him which makes him feel worse than before hand (such as wanting to dehydrate him by 3 litres). We have had some amazing nurses but we have also had some not so amazing nurses. In the case of dialysis and kidney failure, there is no text book way of doing things that encompasses every body and that Jono (as we all know) is definitely not a textbook case at all.
At the end of this month Jono will be meeting with his specialist doctor to see wether he will be getting the fistula or not. The chest tubes were only meant to be a short term access point but because of all the drama the past few months that hasn't happened yet.
I kind of struggled to want to update everyone on daily things as part of me felt that if i started updating again then i might end up jinxing him somehow? Silly i know but in this season of sickness and flu he is lucky he hasn't caught anything yet (including from me!!) thanks to people going out and about in their daily lives while sick and spreading germs. So just a friendly reminder if you haven't gone and gotten your flu jab its never to late ! You may not get the flu, you may have an awesome immune system but remember not everyone in society is that lucky.
Alicia x
