Gastroparesis and Ehlers-Danlos Syndrome

Time to finish that post I started! Sorry I've left it so long I'm sure you all understand though ; ) I left off last time having just met the team who are caring for me and arrangements were being made for me to get my Hickman line so they could start my TPN. As mentioned before, they agreed to arrange for me to have sedation for my line insertion because local anaesthetic doesn't work for me (because of my EDS). They initially thought I would have to wait a while and they had planned to place a temporary line while I waited. As per usual the plan changed again and they managed to get me a space on a list at another hospital in Leeds, (Leeds general infirmary) meaning I didn't need the temporary line after all! My NJ tube had blocked the night before so it was perfect timing considering I have no other route for meds etc. Wednesday morning came round and everything went as planned. The patient transport arrived on time to take me over there and they were expecting ...

Well, what a week it has been! As usual nothing is straight forward and plans have been changed again. Following on from my last rant, I finally made it to hospital on Friday after my mum staged a sit in at my GPs office lol. We had spoken to my GP on Wednesday and asked him to contact the hospital following the advice of my consultants secretary. He was supposed to ring them and let them know what the situation was with my feed rates etc so they could prioritise my admission. Unfortunately this particular GP still lives in the dark ages, before telephones and emails and decided to post a letter marked URGENT instead....yes really! By this time I was really at the end of my limit, I hadn't had any feed at all for 10 days and only 240ml of water per day through my NJ tube. I might be used to starvation but everyone has a limit and I reached mine quite some time ago. I really couldnt cope with it anymore and literally felt like I was just going to fade away. So as I said, my mu...

AAAARRRRGGGGG! This is going to be one big rant, I'm a calm person really I promise ; ) Lots of you already know that I was due to get my Hickman line on Tuesday, so by rights I should be getting some food by now. But remember...this is me, queen of the cock-ups, disaster magnet extrodinaire... or is it just that I'm so laid back that people think "its ok she won't mind"?  Which ever it is... I DO mind! As mentioned in my earlier post, I was due to be admitted on Sunday ready to get a hickman line on Tuesday. Unfortunately there wasn't a bed available on Sunday.  Not to worry, just a quick change of plan....go down to my GPs office to get the MRSA screening done and all will be ready for Tuesday.  After all, I'm "DEFINATELY DEFINATELY" on the list!  So I skip my regular IV day which was much needed, to head down to the GP to get the screening done, expecting that it would be ok because I would be getting my fluids on Tuesda...

Where to start? Well it's been a while since I sat and spent any time writing and as usual lots has been going on. Last time I wrote I had just started taking Pregabalin for pain and Refaximine for bacterial overgrowth which had been recommended by the team at Manchester. I'm now on the full dose of Pregabalin and have finished the course of Refaximine yet I'm still having big issues with pain and feeding. The IV therapy has been keeping me afloat for the last few weeks which has been helping me manage while I wait for a better long term solution. I have rubbish veins though so it has meant repeated jabs into veins that are already scarred from overuse. They are really good at the unit though and they have been keeping a close eye on me. I wasn't so good when I went last week and they had a Dr up quick sharp to come and see me. To put it politely, I hadn't "been" for 6 weeks straight. I had spoken to my gp about it but their opinion was that I wasn...