Friday, 12 February 2016

New Way Of Living... (TPN)

The Beautiful City Of London Was my Company! 

I hope everyone is doing as well as they can! xxx

You might be wondering why I have named the title of this entry as New Way of Living? Well over the past couple of months I have had many challenges. 

As many of you know I am completely dependant on a Feeding Tube, well what happens when that Feeding Tube decided to beak in half and fall out in the middle of the night? 

I woke up in the middle of the night drenched in my feed. I was so worried that I thought I had wet myself (which has never happened) but there was a much bigger problem waiting for me. I lifted my night shirt up and quickly realised that the jejunostomy had broken in half. Half of it was inside me the other half fallen out. So my initial response was to keep the stoma site open at any cost. I tried to push the tube back in to the stoma site but boy was it painful! It would not go in, the stoma had closed. 

So I emailed my Consultant (who is the most Amazing consultant there is!) and he emailed me back first thing in the morning instructing me on what to do and would be expecting me in A&E. I am so thankful for the NHS and the wonderful team of Doctors, Nurses, Porters, Cleaners... for their hard work and dedication! I went in early in the morning and was admitted in at midnight. They couldn't do much except to keep me comfortable and hydrated.

Fast forward my PEG had too become infected badly. I was taken down to surgery to get it removed and to place another jejunostomy. All is not very difficult as I have had done it many times before. 

But boy was I wrong! 

As soon as I come out of theatre I was in so much unusual pain (not the normal pain that I usually have with this surgery) by the evening I was spiking temperature of 40°C and sometime above. And then there was a lot of blood pouring out of the tube, I started to get worried, the nurses got worried too. I was given medication to lower the temperature but it did not help. It was one hell of a night and little did I know that many more were to follow. In the morning we removed the dressing and it was horrendous! the insertion made, the new and old tube site were full of puss and obviously I had caught an infection. I had excruciating pain in my lower tummy too. I could not move. I could not breath with out it being painful. I had never experienced such pain. 

The Insertions stitches had started to open and as everyday went by it would open even more!  By the third day it was an open gaping mouth full of puss. The new jejunostomy was taken out immediately. I started getting treated for the infection with 4 different types f antibiotics. the infection had travelled deep into my body. The temperatures never came down. I was feeling very weak. I had thought that I knew pain. but  I was wrong.  I had lost a lot of weight. They were not going to do any surgery on my tummy so I had a PICC Line Inserted in the hope that when the infection clears I will be put back on the Jejunosotmy. I had puss collections all over inside my tummy. 

Then after a few days the pain went away so they stopped the antibiotics. what a terrible decisions they had made, because a day later the horrendous pain shot back in. Worse than before. As soon as my temperatures came back down I was taken own to get a Hickman line inserted to my heart. This was to be a new chapter in my life. 

I was told that the infection is ferocious and that  I would have to go home with a Hickman Line and having regular antibiotics. I started to get trained on how to use a Hickman. Let me tell you something being told that this you're last option at keeping you alive is a scary thing. Especially when this come with much greater risk as it sits in my heart. I though I had changed my life style already for the jejunostomy and PEG but little did I know that I had to change it even more for this little lad. 

I have had to differ my last year of University due to this and that was the hardest decision I had made! Anyone who knows me knows how much I love education. I thought this illness had already taken a lot from me but hey it wanted to take this away from me too.But I am more than determined to finish it! evermore so! 

Fast forward... I am now fully trained on how to use and have gained my weight back and am having a much better quality of life with this tube because I haven't experienced pains such as my old tube ones from this tube. My Consultant was very proud of me for sticking to and trying over and over again with the other tubes. He had said we should have given it to you earlier but hey at least I tried my best. Knowing this is my last option staying alive haunts me everyday. However, we cannot allow it to stop us from living our lives to the fullest. 

Living with illnesses like this everyday I am reminded that life is very short. Something so small can kill me. 

Here is to Brighter Days! 
Only recently, I was about to get ready to start my TPN feed and something in my mind told me to check my phone. And I did. I had one missed call and one voicemail. I checked. They had said that my TPN bags were contaminated and that if I had taken any I had to go to hospital and tell them how much I had taken. In that mili of a second I was saved from unforeseen disaster. All I have to say is just be thankful for what you have. Be grateful for life. 

I will be writing an article for the Huffington Post and you can decide what it should be about! Just leave a comment to be a part of raising awareness. 

Sending my Love to all of you! 

"A Smile Cures Anything!" "Making the Invisible Visible!" 

Go and hit Like on the Smiling With Gastroparesis page!