Welcome to my world…
As a young woman living with multiple chronic diseases, growing up I soon realised that I didn’t have a “normal” life and have been through some incredible life changing experiences, having gone through so much as a child, teenage and now an adult I’ve finally decided that I want to share this and my aim is to create an online community, not only discussing my illness and what I go through on a daily basis but would love to hear your life stories and be the support network that I never had.
Its unfortunate that I became poorly pretty much from birth, I was born in January on a cold snowy day and 6 weeks from that day my life was saved. I was lucky that when I was first born I spent a lot of time with my great aunt and great nan who noticed me deteriorate over the space of a few weeks, I wasn’t feeding correctly, kept being sick and my eyes we’re dark and had sunken into the back of my head. There was one day in particular when they we’re taking care of me that they we’re so concerned they took me to the nearest doctors to be checked over – I can honestly say, I will be forever grateful that they did what they did because I wouldn’t be sat here now writing this.
From the first meeting with a GP they picked up that I was suffering with dilated kidneys, of which they did more tests and it was confirmed. When I was three months old I was diagnosed with Hydronephrosis shortly after I was then diagnosed with Vesicoureteric Reflux – From then on, It was continuous visits to the hospital for tests and more unfortunate operations, from birth up until I was eight I must of had 13 operations on my bladder and kidneys and hundreds of different types of tests, and I mean some pretty awful tests for a child to go through – and all this so they can try and figure out why I had these conditions. While all this was going on my parents went through the stages you do when you have a young child, potty training etc – Because of the illness I suffered with countless UTI’s ( Urine Infections ) They soon noticed that I wasn’t grasping the potty training, I didn’t have control of my bladder – I could stand in front of you and not know that my urine was coming out, so you can image being in junior school this was really embarrassing and I go bullied quite a lot. The doctors couldn’t stop this, all the operations didn’t do what they were supposed to do, so I had one final operation and this was a last resort.
So when I was eight years old my parents had to make to extremely hard decision of giving the doctors the OK to operate on me. This was a life changing operation for me and couldn’t be reversed, needless to say it wasn’t a little operation.
The operation is called a Mitrofanoff, this would involve me being under anaesthestic and in theatre for 12 hours… Wow I know, I feel for the doctors haha. This would also involve me going into hospital 3 days prior to the op to ensure my body was clear of any infections and my bowels were empty. The clearing of infections was no bother it involved having some IV antibiotics which worked a treat… Now considering what I had already been through as a child the experience of having a NG tube ( nasogastric) fitted was awful I’m not going to lie, you just have to remember when their pushing it down to keep swallowing, this will help the NG tube go down faster and easier (so I’ve found)
Once my body was cleared out and fit and ready for theatre, the day finally came for me to have the operation, now at eight years old I didn’t understand why they were doing this, why I was going through what I was, so you just go along with it. Whenever I went to theatre my dad always came with me, I found out later in life that my mum was too scared, on this occasion for my major operation both of my parents came to theatre with me, I don’t remember a lot but what I do still upsets me to this day – Just before they put me to sleep I remember crying, screaming out for my parents and grabbing onto my dad screaming I don’t want to die… I don’t understand why I had this in my head, maybe I did understand what the doctors were saying after all?! – Needless to say, my parents left the theatre an absolute mess. They described the day as the longest day of their lives, no matter what they did, time would not go fast.
So after every operation my recovery has generally been really fast, because of the seriousness of this operation, afterwards I would need to go into intensive care for a few days – Only I would come out of a 12 hour operation sitting up and smiling 🙂 Intensive care wasn’t needed because my recovery had been so good, the look on my parents face was priceless. The recovery process is pretty intense and long winded, not only does your body need to repair itself but I then had to learn how to use my Mitrofanoff – I can remember the first time I catheterised myself clear as day light, there was myself and a nurse in the toilet – I took my time in inserting because to be fair it was pretty painful, as I was inserting the catheter my nurse faints!! – Priceless
After a couple of months I finally got used to the Mitrofanoff, obviously being as young as I was I didn’t like sharing this with my friends so only a limited amount new about it, little did I know I couldn’t trust them! When I started senior school the teachers were really supportive and gave me my own toilet away from the other school kids, when I say my own toilet I mean I could use theirs. This was great, but when your constantly being asked about using the teachers toilet it started to really get me down and then to top it all off my friend that I thought I could trust went and told whoever she did and before the end of the week my whole class knew about my mitrofanoff and why I have to use the special toilet – I remember kids bullying me about this, calling me a freak and teachers pet but really they didn’t understand what a Mitrofanoff was, how serious it was, it was just an excuse to bully someone – kids can be so horrible!
From when I left senior school ( My happiest day ) my health was going pretty good, my Mitrofanoff was under control, my infections were under control so happy days! It was when I reached 20 years old that I started having problems with the Mitrofanoff, I was struggling to push my catheter in, which as you can image is a pretty scary experience, seeing as this was my only way to pee! – It was decided my the hospital that I was to have my Mitrofanoff revised. Luckily the operation wasn’t as big as the first time, it involved doing some repairs etc so my theatre experience was only 4 hours – recovery again was pretty quick!
In 2012 I was taken into the QE Birmingham hospital with a bad UTI, this is nothing new, growing up I was always in and out of the children’s with UTI’s and always having the same ultrasounds’ and X-Rays etc…
After being in hospital for a few days the doctors was noticing that I wasn’t making any improvements, they decided to send me for an ultrasound to check on my kidneys and bladder – shortly after a doctor came and sat with me and told me I had a narrowing of the aorta (Aortic Stenosis) – my first word was “WHAT?!”
What is Aortic Stenosis?
The Aorta is the main Artery from the heart the feeds the oxygenated blood to the rest of the body. A narrowing of the Aorta restricts the blood flow causing the heart to work harder and the rest of the body to suffer from a restricted supply of blood.
So, the doctors were asking me if I had any symptoms related to the stenosis, I explained that I would feel dizzy, had shortness of breath, became tired easily and have problems when exercising, I.E. – pains in my legs when walking.
It turns out that the pains in my legs were related to the stenosis, after more tests it showed that I was only getting 25% of the blood going down to my legs, so this was the cause of the pain and swelling I would get when exercising and why I wasn’t able to walk properly!
I went through so many emotions after being diagnosed with this, mainly because I had been suffering with these symptoms for over 10 years and after all the operations, scans etc this was never picked up and no one at that time could answer me why?!
So the doctors first thought of trying to solve this was for me to have an Angioplasty This involved me be awake while they did the procedure, the doctors would numb my groin with anesthetic and then push a rod which enabled them to put a stent in place which would of held my aorta open. This had to be by now one of the most horrific experiences I have gone through, not only being awake while they attempt to do this but then to find out afterwards that the operation failed and them messing around with my aorta had actually made things worse.
The next step was for them to replace part of my aorta with a skin graft from a pig and cut out the diseased part of the aorta and replace with the patch…
This is still an on going issue in with I will share more shortly, I hope you have enjoyed reading what you have and I hope you continue to stay with me on this journey, trust me – It gets better!
Lets start spreading the word that no matter what chronic illness you may suffer with, life can be great so in the mean time please feel free to like, comment and share my page 🙂