Gastroparesis and Ehlers-Danlos Syndrome

Hi guys! Sorry I haven't been updating as regularly as usual! I'm stuck with the iPad while I'm in hospital and it's not so easy to post on here! I'm almost ready to come home and my discharge is arranged for Thursday (12th). I had three training sessions for self administration of the TPN. One for connecting, one for disconnecting and one for dressing changes. It was all pretty straight forward because I have my nurse training to fall back on, so after showing him that I could do it safely we sat and chatted about festivals and camper vans lol. I have been setting everything up myself since week one so there are no really concerns about that! I had my NJ tube replaced on the Monday, following my last post but it did not go very well. I spoke to the clinician who was placing it prior to them starting and explained that I was more than used to the procedure after having several already. I also told him that 4mg of medazolam is what they usually use and that wor...

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...

Hey everyone, I haven't forgotten you, I've just been busy trying to get myself back on top! I've had several appointments since I last wrote so I'll try and work through things as best I can. I have a bit of a memory loss issue at the moment so we'll see how it goes ha ha. I didn't get my NJ tube on the day we were expecting. We went for the initial appointment only to be told that they had no idea about the arrangement that had been organised on my discharge from hospital! So that was a waste of effort! It wasn't a completely wasted journey because I had my appointment with the pacer nurse in the afternoon but it was a VERY long day. I've had the voltage increased again so its at absolute max now. The rep said that they can still play around with the timings of it for me but I have to admit that I have almost given up on it working at all. Anyhow, we got an apology for the mix up and I did eventually get my new tube the following week. It was ...

Hi guys, So sorry for not posting when I got home Ive been spending time with the family after missing them while I was away. Sometimes you just have to switch off and focus on whats most important in life. Anyway, I got home on Thursday evening after a ten day stop over. I was admitted for dehydration as a result of my intolerance to jejunal feeding. I am currently getting 10mls an hour through the NJ tube which only amounts to 240mls of fluid per day. I am adding in as many tiny flushes of water as I can with my meds and between doses but again it's nowhere near enough. So my consultant is going to phone my GP to try and get them to organise for me to go and get IV fluids at a local hospital regularly so that I don't get so dehydrated again. In theory this is the best plan anyone has had for ages and it would mean I wouldn't have to spend so much time bouncing in and out of hospital with dehydration. However, based on past experience these kind of plans tend to fall ...