Hospital progress update
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 mum marched down to the surgery on friday and refused to leave until she had spoken to my own GP, who is much more efficient and understanding. She knows me well enough to know that when I say I need help...I mean it. Thankfully she made some phone calls and I was on my way in by mid afternoon the same day.
Unfortunately, with the weekend almost upon us there were no doctors from my team available....so I get the usual weekend treatment from junior doctors who don't fully understand my situation. By Saturday evening I had been in for 24 hrs and they hadn't given me any treatment other than my usual medication....and they even got that wrong 3 times running. So I asked the nurse why I wasn't getting fluids even though I'm getting so little from my NJ. She said that the doctor had checked my bloods and they were ok so I didn't need any. My reply to this? I had just been for my REGULAR Hartmans soloution at the clinic the day before I came in. I might as well have been talking to the wall because they still did nothing about it. Plus they thought my tube was an NG? I'm sorry but even I know that when you get a new patient on the ward.... you read the notes! At least that's how I rolled when I was nursing!!!
Needless to say, when the Gastro team returned this morning they went crackers and I was hooked up to an IV within minutes lol. They were very good and I've now met several members of the PN (parental nutrition) team. I had been worrying about having the line put in for weeks because local anaesthetic doesn't work well for me. Last time I had it...for my jej tube stitches, it was more like a trip to the tattooist for some form of extreme body piercing than a painless clinical procedure. At first he said that there was no way round it because they needed to get a line in straight away and I would just have to try and tolerate it as best I could....so I agreed to give it a go....cringe! THANKFULLY, he came back an hour later to tell me that he had spoken to the clinician who would be doing the procedure and he had refused to do it because it would be too painful.....phew! So the new plan is to put a temporary PICC (peripheral intravenous central catheter) line in so they can start the TPN while I wait for a space on the sedation list for the Hickman line.
I'm hoping that they will place the PICC line tomorrow because I'm STILL not getting any calories other than my 30ml of calogen per day. It's so draining I really can't describe how it feels....it just takes over your whole body and there's no way of getting rid of that feeling until I get some nutrients back on board. I have been getting IV pabrinex (vitamins) which usually makes me feel bright and alert again but this time I don't feel so much benefit from it.
I have so much more to say but I've been typing for too long now and I'm shattered so I'll try and pick up where I left off tomorrow, I need some sleep! xxx
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 mum marched down to the surgery on friday and refused to leave until she had spoken to my own GP, who is much more efficient and understanding. She knows me well enough to know that when I say I need help...I mean it. Thankfully she made some phone calls and I was on my way in by mid afternoon the same day.
Unfortunately, with the weekend almost upon us there were no doctors from my team available....so I get the usual weekend treatment from junior doctors who don't fully understand my situation. By Saturday evening I had been in for 24 hrs and they hadn't given me any treatment other than my usual medication....and they even got that wrong 3 times running. So I asked the nurse why I wasn't getting fluids even though I'm getting so little from my NJ. She said that the doctor had checked my bloods and they were ok so I didn't need any. My reply to this? I had just been for my REGULAR Hartmans soloution at the clinic the day before I came in. I might as well have been talking to the wall because they still did nothing about it. Plus they thought my tube was an NG? I'm sorry but even I know that when you get a new patient on the ward.... you read the notes! At least that's how I rolled when I was nursing!!!
Needless to say, when the Gastro team returned this morning they went crackers and I was hooked up to an IV within minutes lol. They were very good and I've now met several members of the PN (parental nutrition) team. I had been worrying about having the line put in for weeks because local anaesthetic doesn't work well for me. Last time I had it...for my jej tube stitches, it was more like a trip to the tattooist for some form of extreme body piercing than a painless clinical procedure. At first he said that there was no way round it because they needed to get a line in straight away and I would just have to try and tolerate it as best I could....so I agreed to give it a go....cringe! THANKFULLY, he came back an hour later to tell me that he had spoken to the clinician who would be doing the procedure and he had refused to do it because it would be too painful.....phew! So the new plan is to put a temporary PICC (peripheral intravenous central catheter) line in so they can start the TPN while I wait for a space on the sedation list for the Hickman line.
I'm hoping that they will place the PICC line tomorrow because I'm STILL not getting any calories other than my 30ml of calogen per day. It's so draining I really can't describe how it feels....it just takes over your whole body and there's no way of getting rid of that feeling until I get some nutrients back on board. I have been getting IV pabrinex (vitamins) which usually makes me feel bright and alert again but this time I don't feel so much benefit from it.
I have so much more to say but I've been typing for too long now and I'm shattered so I'll try and pick up where I left off tomorrow, I need some sleep! xxx
Hi Minxy,
ReplyDeleteIt just beggars belief that they would leave you without fluids over the weekend! Any normal human being needs water what on earth were they thinking.
Bless your mum for going down to the drs surgery and sorting things out for you. It shouldnt have come to that.
Hope it goes well today xxx