I had an appointment at the Western General Hospital with a consultant I have never seen before. The Team she is with is The PACT Team. This is Patient Experience and Anticipatory Care Plan Team. The main purpose of the meeting was to discuss my health problems and for the consultant to take notes and later write up a care plan which can be accessed by A & E staff and out of ours doctors, to better understand my health problems and my preferences. Once the plan is written up a copy will be sent to my consultants, my GP and myself.
It was rather a daunting experience, chatting about any possible imminent admission to hospital. The consultant was lovely, and she explained everything. It gave me every opportunity to talk and ask questions. We discussed what brings me into hospital and what is best for me and what staff would benefit from knowing. She asked me some very personal questions and I gave her truthful answers. It was easy to chat to her, she was kind and caring. She turned the computer screen round so I could see what was type written about me. There it was in black and white: various medical conditions that affect every day life. Just for a moment it was once again like hitting that brick wall. I looked at the screen the words were a blur. Seconds later we were chatting…………
Do I think I will benefit from the care plan? Hell, Yes!! The Doc took note of all the problems; e.g. carcinoid syndrome, profound hypoglycaemia, labile blood pressure, gastrostomy feed tube (leaks), poor co-ordination, photosensitivity, hydrocortisone replacement therapy, lanreotide injections every 21 days etc. etc, etc. And she made a note of what staff need to have available for me. Fingers crossed Im not in anytime soon.
Eleven months ago I switched from nasogastric tube feeding to gastrostomy tube. After a lengthy stay and several other stays in hospital with complications, sepsis and months of continual leakage. It is apparent that the surrounding area is never going to totally heal. The health professionals have tried their best. I am lucky to have such a dedicated team. We have tried many different creams, ointments and dressings. My tummy at times resembles an active volcano and erupts a molten lava of gastric fluid leaving my skin red raw, blistered and very sore. After the trial and error of creams the best one and the one to stay is the cavilon lollipops. They act as a barrier, and its a wonderful life saver I can tell you. As for the dressings, well many have been tried and tested. At one point I looked like I had been shot. I was covered from my breasts to my waist. The nurse on the ward thought it best to keep it all sealed. This didn’t work, after several dressings later, we realised I am allergic to micropore, elastoplast, dressings, and good old fashioned crepe bandage. The dressing that worked was the foam dressing. A hole was cut in the dressing and it was wrapped round my peg. The only trouble with this is the amount I leak out. The dressing takes the leakage but after a time it starts to sit on the dressing and then build up on my tummy.
My nurse, Evelyn, that comes in and changes my dressing at home noticed this. Evelyn is a dog with a bone. One day she came in with a booklet and a different dressing.
Do you fancy giving this a go? She asked me. Can only give it a try was my answer.
So she sat me down and we went through the booklet together, she demonstrated how she was folding the dressing and how she was going to apply it. This dressing is designed to absorb the leakage. And guess what – it does it so well 🙂 I have even noticed a reduction in the odour. The combination of the barrier and the new dressings, my skin is much improved. Its far from perfect and it will always leak. But with the perseverance of Evelyn on the look out for a more suitable dressing life has become more bearable and a tad less painful. Cant see me shifting from the Keramax dressings in a hurry. And as for my nurse well she is a star.