The Plan So Far
As you can see by yesterdays post, it was so long I didn't have any energy left to write about the current plans and arrangements they are making for my future care.
My GI and I disgused Manchesters recommendations and he apologised for giving us a sense of hope that my nutrition could be sorted out quickly. In reality it is likely to be another 6-8 months before we know exactly where we stand. It was a bit of a blow because I thought that the 6 week wait for Manchester was long enough to be suffering like this every day. So I have been really tearful today, all I want is some food!
After reviewing the letter he decided to try me on the Pregabalin and Refaximine to begin with while I'm in hospital and see how it goes before adding in any of the others and removing some of my old meds. I have been on them 2 days now, the refaximine is an antibiotic which specifically targets the bad bacteria in the gut and does not have the usual nasty side effects associated with powerful antibiotics. I am starting the Pregabalin for pain, slowly at half a dose twice a day and then moving up to three times a day in a couple of days. If I'm tolerating it well then they can increase the dose. As you can see from the letter there are lots of drugs I haven't tried so I still have some room for manoeuvre if I come across any problems.
Hemis arranging for me to have a new NJnfitted next week and has ordered a 7 French this time instead of the one I have now which is a 12! so I'm hoping the thinner tube will be more comfortable and a bit more descrete! given the fact that it is usually dehydration which lands me back in hospital he is going to arrange for me to go to a local day clinic for IV fluids every week or two just to keep me comfortable. thismisnthe best idea I've heard so far! the dehydration is my biggest nemesis so to have regular support as an outpatient would be great!
It is looking more likely that all surgery has been ruled out and my gall bladder will be staying put...it's a shame because I really do think that it is playing a role in all of this and has been right from the start. Don't get me wrong, I'm really relieved not to have to have more surgery but it means that I will never know now.
When we spoke he said that he would like me to start all the new meds while I'm here and he will try and arrange for the support I need locally, and make the referral to Newcastle ( my nearest centre for HPN).
This afternoon a doctor came round and said I could go home today!...eh? I asked him if he had spoken to my GI about it because there are a lot of things that need to be put in place before I go home. he hadn't spoken to him at all, just looked at my file and noticed that I am self caring and only on IV fluids so was well enough to go home. He didn't know that I am only getting 240mls of fluid through my tube in 24 hours so I asked him how he thought I was going to manage on that! So I told him I would rather see my consultant before I leave because at the moment I'm not up to going anywhere.
The whole scenario was ridiculous and even the sister questioned him about how I would manage. It put me on a real downer because I've been here so many times before...yes I'm freeing up a bed by going home but actually, I DO need the bed...I am fed up of being discharged only to go home and slowly deteriorate to the point where it becomes urgent again. I just can't keep doing that, it's not fair on me and it's not fair on my family. When I do go home I want everything set up ready to go so I know where I stand and I won't be left to soldier on alone as usual, I can't do it anymore, I'm too weak and far too tired.
I am really hoping that I get to see my GI tomorrow because I want all this sorting out before they try and turf me out again. As usual all this could have been avoided if doctors took the time to communicate with each other properly. They don't even have my medical notes on the ward, all they have is the information I have given them on the admission. It's beyond annoying!
So I have stood for myself for a change, I always rush to get out of hospital and every time I regret it so this time I just want to make sure it's right before I go!
the whole thing put me on a massive downer and I've spent most of the afternoon in tears at the prospect of suffering any more than I already have. I'm so sick of having to tell doctors how to do their jobs! I should not have to fight like this for my care...I deserve it!
My GI and I disgused Manchesters recommendations and he apologised for giving us a sense of hope that my nutrition could be sorted out quickly. In reality it is likely to be another 6-8 months before we know exactly where we stand. It was a bit of a blow because I thought that the 6 week wait for Manchester was long enough to be suffering like this every day. So I have been really tearful today, all I want is some food!
After reviewing the letter he decided to try me on the Pregabalin and Refaximine to begin with while I'm in hospital and see how it goes before adding in any of the others and removing some of my old meds. I have been on them 2 days now, the refaximine is an antibiotic which specifically targets the bad bacteria in the gut and does not have the usual nasty side effects associated with powerful antibiotics. I am starting the Pregabalin for pain, slowly at half a dose twice a day and then moving up to three times a day in a couple of days. If I'm tolerating it well then they can increase the dose. As you can see from the letter there are lots of drugs I haven't tried so I still have some room for manoeuvre if I come across any problems.
Hemis arranging for me to have a new NJnfitted next week and has ordered a 7 French this time instead of the one I have now which is a 12! so I'm hoping the thinner tube will be more comfortable and a bit more descrete! given the fact that it is usually dehydration which lands me back in hospital he is going to arrange for me to go to a local day clinic for IV fluids every week or two just to keep me comfortable. thismisnthe best idea I've heard so far! the dehydration is my biggest nemesis so to have regular support as an outpatient would be great!
It is looking more likely that all surgery has been ruled out and my gall bladder will be staying put...it's a shame because I really do think that it is playing a role in all of this and has been right from the start. Don't get me wrong, I'm really relieved not to have to have more surgery but it means that I will never know now.
When we spoke he said that he would like me to start all the new meds while I'm here and he will try and arrange for the support I need locally, and make the referral to Newcastle ( my nearest centre for HPN).
This afternoon a doctor came round and said I could go home today!...eh? I asked him if he had spoken to my GI about it because there are a lot of things that need to be put in place before I go home. he hadn't spoken to him at all, just looked at my file and noticed that I am self caring and only on IV fluids so was well enough to go home. He didn't know that I am only getting 240mls of fluid through my tube in 24 hours so I asked him how he thought I was going to manage on that! So I told him I would rather see my consultant before I leave because at the moment I'm not up to going anywhere.
The whole scenario was ridiculous and even the sister questioned him about how I would manage. It put me on a real downer because I've been here so many times before...yes I'm freeing up a bed by going home but actually, I DO need the bed...I am fed up of being discharged only to go home and slowly deteriorate to the point where it becomes urgent again. I just can't keep doing that, it's not fair on me and it's not fair on my family. When I do go home I want everything set up ready to go so I know where I stand and I won't be left to soldier on alone as usual, I can't do it anymore, I'm too weak and far too tired.
I am really hoping that I get to see my GI tomorrow because I want all this sorting out before they try and turf me out again. As usual all this could have been avoided if doctors took the time to communicate with each other properly. They don't even have my medical notes on the ward, all they have is the information I have given them on the admission. It's beyond annoying!
So I have stood for myself for a change, I always rush to get out of hospital and every time I regret it so this time I just want to make sure it's right before I go!
the whole thing put me on a massive downer and I've spent most of the afternoon in tears at the prospect of suffering any more than I already have. I'm so sick of having to tell doctors how to do their jobs! I should not have to fight like this for my care...I deserve it!
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