Spending your life in waiting rooms

Hello all, this is bit of a random blog today, but the idea came to me while sat in a hospital waiting room looking at all the bored faces and then I started to think that as neph patients we do tend to spend a hell of a lot of time waiting round for our various appointments. Don't get me wrong i'm not complaining I know how busy doctors are, but with a lot of eye appointments at the hospital and the opticians, not to mention kidney check ups I honestly feel like I've hardly been out of a waiting room in the last few weeks.


I mean I'm 20 years old so waiting isn't such a difficult task for me, but I have to hand it too the parents of young kids especially those on steroids that managed to keep their kid entertained, it bothers me however when people don't understand that kids want to be playful even when in a hospital- these children are going through as much as any other patient in there and we should give them respect too.

In my previous blog I talked about my eye problems and due to this I have spent far more time than I'd care to admit in the JPH eye department and although the staff are fab you end up spending an awful lot of time waiting about for different test and eye drops to take effect and even though I'm big enough too look after myself dad still comes along with me for support, so a big thanks to him for spending his Saturday morning in a waiting room; which is enough to drive anyone slightly mad (picture to show the madness that developed!).

I've added some pictures different times and different scenarios of my time in waiting rooms (id like to add my phone was on airplane mode and please excuse the snapchat filter and focus on the state of my pupils!) which I think sum up what its like to live life with an invisible illness, when a lot of people ask you why your their as you look far to young and healthy to be at a nephrology clinic. I also hope that some will make you chuckle at my experience of the eye clinic. But wether its waiting for doctors, prescriptions, opticians or a ring back from your nephrologist: having nephrotic syndrome or living with someone who does tends to give you the patience of a saint when it comes to waiting around.

Look after yourself

So this weekend I took another blow on my nephrotic roller coaster. After a routine eye test a few weeks ago my optician found a blind spot in my eye, he tested my eye pressure which is something they worry about on steroids, which were fine but transferred me to the hospital just too look abit deeper into this blind spot. 

So on Saturday I went to the eye department ( a nice change from renal!) and had the works done; eye scans, field tests and even had my pupils dilated so I looked like a vampire for the rest of the day. The blow came when the specialist established that I had the early stages of glaucoma and although my eye pressures were fine currently, when I had been on high steroids for long periods the damage had already been done. Steroids seriously have so much to answer for, the doctor advised trying to get off them but of course you all know it's never that easy!

Fortunately at the moment it can be treated with eye drops and should all be okay. I was just in shock from how much steroids truly wreck your body and I was extremely lucky that I have regular eye tests due to poor eye sight and therefore this was caught early. 

I've never been warned about steroids effect on your eyes really, not to this extent and wasn't sure if others have been. I just wanted to post this to make sure people do keep a check on it especially parents of young suffers as I'm sure that eye tests are the last thing on your list with everything else you have going on but you don't want something like glaucoma to contend with!

At the moment I feel like all this is really testing me but by sharing it might help someone else avoid it! Forgotten what it's like to have a quiet life, nephrotic really does take over every aspect.