My Story Continued from Monday - by Guest Blogger Charlene Johnstone

My story continued from Monday…..

I had been accepted in December 2009 for a trial Gastric Pacemaker (Electrical gastric stimulation) which uses an electric current to cause stomach contractions bit like a heart pacemaker. Even though this was what I needed I was too unstable to have the procedure due to daily seizures and vitamin deficiencies due to malnutrition. Finally in February 2010 I was taken to Glasgow’s Stobhill Hospital and the temporary pacer fitted. Success is the only word I can say. I was eating orally and the vomiting was minimal and my gastric emptying study had improved from 3% to 76% which was massive. Five days later it was removed and I was transferred back to Gartnavel. It was heart-breaking as I was back to zapped energy levels and vomiting constant. I was told I was eligible for the permanent pacer but funding had to be approved after all patients have had temporary trials then we were told there was 11 candidates and only funding for 5 pacers that year. Sounds ridiculous eh, all to do with money! The thought of another year like the last one filled me with dread! Privately i could have had the operation done by the same surgeon but for £22,250!! A lot of money your thinking and I was too but my family could not bear to see me like this anymore and they were considering loans and re mortgages! However my Mum spoke to MPs and my Consultant pushed things as I was deteriorating quickly and they agreed to fund the operation and I was transferred to Glasgow Royal Infirmary for the permanent operation on the 18^th of March 2010. One month later, shows you how much influence managers and politicians have these days in our NHS.

Agony is all I can say, but pain was well worth it. After a few adjustments I was off enteral feeding and capable of eating and drinking orally and was discharged home in May 2010 with no artificial feeding and no medications. Apart from a few tweaks I was pretty much independent and went on holiday with my son, my friend and her son. The kids loved it and I was so happy to be free from everything. 

Healthiness continued then in December 2010 I went into urinary retention and was admitted to hospital for investigation and catheterisation. It turned out my bladder was paralysed and my bowel at that point hadn’t moved for 3 weeks. By Christmas Eve 2010 I was so ill and was due to get an operation to remove most of the paralysed part of bowel and see how much was contracting, however I spiked a temperature on Christmas day and had what I thought was a migraine until I was vomiting, rashy and my neck was aching and that night it turned out I had Meningitis. I do not remember Christmas at all and I was transferred to The Brownlee which is an Infectious Diseases Unit. I was terrified and in pain but was in and out of consciousness and doped up on Morphine. 5 days later I was transferred back to the Western Infirmary but kept in isolation. My bowel was causing significant problems and I had a NG tube fitted to decompress my stomach. I got a central line placed in my neck 3 minutes before midnight on New Year and I brought it in covered in sterile sheets with a few doctors, although being on the 10^th floor I could see the fireworks from my window. I also had a femoral line placed on the 3^rd of January as I was put on TPN through central line and iv fluids and meds through my femoral line. Constant morphine made me nauseas so was put on regular IV cyclizine for the sickness to. Despite several operations, interventions, and no matter how many procedures, my Intestines had totally failed and I was told I would be on TPN, nil by mouth and catheterised for life.

I was transferred after 3 months to Gartnavel General Hospital where my own consultant was and he carried out some last ditch attempts to get things going but to no avail. I then became septic due to my 5^th central line at this point and was quite ill for some time. I was also referred to Salford Royal Hospital where they have one of two UK Intestinal Failure Units. I was transferred down for a review from their team and it was agreed that I needed to carry on with TPN but to be admitted to their unit when they had a bed but there was a 3 month waiting list so I was transferred back to Glasgow where it was agreed that I would be trained on TPN and allowed home. My Nutrition Team and nutrition nurse Lynsey was fantastic. I couldn’t ask for any better. I went through a couple of ups and downs with 3 line infections but in May 2011 after 7 months I was discharged home on TPN thanks to my consultant and nutrition team and of course BUPA.

It was short lived as in June 2011 I received a call from Salford to say I was to be admitted the following day to their unit for investigation. I wasn’t happy as I was just used to being home and spending time with my boy but I wanted to get down there and get some investigations that they do not have here and to see if there was any chance of a normal life. I was admitted to the unit and testing carried out straight away. The nurses cared for everyone’s Hickman and Picc lines and were very meticulous in their technique and care. My TPN was increased and I was improving until the 3^rd week when I developed respiratory failure and ended up in ICU which even though I was only in England I had no family there at that moment and was very scared. I was unconscious for some time but when I woke up and my Mum and family were at my bedside I felt relieved I was alive and safe because they were there. I recovered respiratory wise and when I could breathe for myself and became stable I was transferred back to the Intestinal Failure Ward. Most tests had been completed by that moment and it was confirmed that nothing could be done and I would have Intestinal Failure and be TPN dependant for life. The following day I spiked a temperature and it was thought I was going into respiratory arrest again but it later turned out I had Septicaemia for the 4^th time. This was pretty disheartening so it meant further IV antibiotics for 3 weeks but the good thing was they transferred me back to Glasgow to my local hospital for continued treatment and rehabilitation. I was finally discharged home in September 2011.

I woke up on the 14^th of January this year, 3 hours after putting my TPN on, shivering, shaking, nauseated and with a temperature of 40.2. I stopped my feed and flushed my line. This made things worse but instead of going to hospital at that point I administered some PR Paracetamol and left myself disconnected. I remained in bed until morning by which point I felt dreadful. I was wary of going to A&E in case it was just a basic urine infection so I held off(which is something anyone should NEVER do with a central line in place). By lunchtime I was feeling even worse and when I set up and locked my line this made things deteriorate further. Cutting a long story short, I found myself in High Dependency Ward in Glasgow Royal Infirmary as I had went into septic shock. The bugs had spread so much my line needed removed immediately and a PICC was placed for antibiotic treatment due to poor peripheral access.

I was in hospital for 6 months, I didn’t respond to antibiotics and my family were called on on 3 occasions and told to prepare for the worst. I now have a port and use heparin locks and I am still on TPN 7 nights a week for 14 hours a day.

I recently made a video on my journey for more a personal reason but I did post it to youtube . The global widespread of the video has been amazing and I've also done my piece in the UK for the tabloids to raise awareness.  I hope we can continue to raise awareness of this awful condition and knowing we have each other for support is very re assuring. Hope you are all ok….