Monday, August 20, 2012
My Life Changed Forever, Part 1 - by Guest Blogger Charlene Johnstone
So there I was, lying in a hospital bed in agony and vomiting bucket loads as my Mum cradled my 4 day old son. This can’t be morning sickness. I was vomiting since I was 3 months pregnant which is unusual as that’s when morning sickness is meant to subside but I’m always the exception to the rule. I was quite poorly by the time I gave birth as I had a very rough pregnancy, was told he was going to be small and my son was 10lb when he was born!!
He was healthy but I still deteriorated even after he was born. I was transferred out the maternity unit to the Western Infirmary which is an adult hospital. I had x–rays, scans, blood tests , you name it I had it and they finally took me to theatre 2 weeks after giving birth. Here they had a good look around and washed out some blood n free fluid in my abdomen. However nothing changed. Was still in pain and being sick up to 10 times a day and remained on a drip and a cocktail of pain and nausea meds. The surgeon I was under decided to take me back to theatre to check my gall bladder and appendix. He removed my appendix but then told me that it wasn’t my appendix that’s causing all of this but he took them out anyway as you don’t need them and it’ll save me ever getting appendicitis!! Needless to say I wasn’t very happy. After 4 months in hospital and weighing 6 stone 1oz I was referred to a gastroenterologist. Straight away he said every test and investigation was to be postponed as he wanted to deal with my symptoms and control them much better before they proceeded further. I was put on a syringe driver with cyclizine and morphine and this instantly relieved some of my symptoms. He then explained that my stomach wasn’t tolerating anything and they’ll do a gastric emptying study soon but in mean time he said I need to get some nutrition as my blood works were pretty bad and I was very malnourished. He placed a NJ tube in endoscopy and this bypassed my stomach and fed me directly into my bowel. Slowly but surely my weight crept up as the feed and rate was increased and I felt a lot better, but I was still relying on pain and nausea meds and tube feeding to keep me stable.
After a couple of weeks he booked me in for a Gastric Emptying Study (GES). This showed considerable delay in emptying and after the 4 hours under the scanner 94% was still in my stomach. My consultant Dr Matt Priest based at Gartnavel General Hospital confirmed it was severe Gastroparesis and I would need to remain on NJ feeding. This was set up and I was trained how to administer this and my meds and in July 2009 I was discharged home, 7 months later to my family. November was a challenging month. It started off badly and I was vomiting so excessively I had to have my NJ replaced 4 times. During 1 of those procedures Dr Priest informed me he was going to try Botox. It was highly experimental and it was injected in to try relax the pyloric muscle in my stomach, thereby allowing the stomach to release more food into the small intestine but this failed to make any difference and excessive vomiting continued with dislodged NJ tubes. That meant feeding was virtually off that month and it saw my next hospital admission for a seizure. That was scary, well when I woke up I was in HDU and didn’t know what had happened but luckily because I hadn’t been well my Mum was there so witnessed the whole thing and called the ambulance. I seized in resus and my NJ tube removed for access to my airway. I was kept in over Christmas and New Year. I was seizing up to 4 times a day! It was a vicious circle. Malnutrition was the cause of the seizures with tramadol making them worse however they were not controlled so when I did have a NJ re inserted it would either be pulled out for access during a bad seizure or my feed would be stopped for 48 hours after a seizure for fear of aspirating into my lungs. I did not have a seizure ‘free’ day so no feed only iv fluids by this point through a central line in my neck.
My consultant told me about a possible treatment that might make things more normal and maybe be able to come off the tube feeding. It was a gastric pacemaker. Enterra Therapy is its real name but it was exactly same as a heart pacer except it regulated my stomach to contract, therefore food emptying which meant I’d be able to eat orally and stop the NJ feeding and it would hopefully stop the pain and sickness as things were moving as normal. The biggest challenge was getting the funding for t. It was still in its trial stages so was not an approved therapy from NICE , therefore some health boards were refusing to fund the cost of the device and the surgery to place it. My consultant, my mum and my family all worked together and put forward a case for me to have this implant. This was not a walk n the park and we were told we could go private but would cost £22,550! It was the same surgeon who also works in the private bupa healthcare, that works in the NHS hospital that was able to carry out this operation. He was the only surgeon in the UK at that point who could carry out the operation. So it was either pay £22,550 or appeal to the health board and get him to do it on the NHS. This is where our fight began………..
To be continued on Saturday 8/25