I am currently at the Brompton hospital, just starting some home IVs as after my amazing holiday to Rhodes, I became very ill. The usual symptoms of coughing, exhaustion, painful joints but this time it seemed much worse and I the pain just wouldn't budge. I also couldn't keep much food down so have lost weight again :( 44.8kg at the moment.
All my life I have needed to eat very fatty/high calorie foods to try and gain weight. Sounds good to most people: as much chocolate, crisps, cakes, fry ups, mc donalds as I can eat! But living with the reality isn't as tasty. I would LOVE to be able to have a salad for lunch or a bowl of fruit for dessert. I have only had one salad (as a meal) in my life and it was sooo yummy! But without drenching it in salad cream/dressings, there isn't much fat or calories in it. Therefore, it isn't much good to me to be eating it regularly. The dietician tells me I need at least 3000 calories a day, every day to put on weight. It is a continuous struggle and can be very stressful when you're not feeling well and don't have an appetite.
So, after trying exceptionally hard over the last 6 years and still haven't put on and kept on any weight, despite trying many supplements too; I have now pleaded with the dietitians and doctors to consider me for having a PEG fitted. I was close to having one a few years a go, but we decided then to give it another year or so of trying to manage my weight more naturally. A PEG is like a little tube that goes from your stomach out to the surface of your skin. You then attach "feeds" (high calorie liquid) at night so that as you sleep, you are taking in more calories! I only remember a few details of the PEG and the operation from the talks a few years ago, so will ask docs at my next clinic app in Sept.
I am very excited at the possibility of having this op done, if it is a success and I am able to gain weight from it, my lungs will benefit as my body will be stronger to fight off infections. Plus, I might be able to eat a salad every now and then! ;)
