Time for a Catch Up!
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 a much better experience this time round, I know my doctors read my blog from time to time and I'm so grateful that he gave me a larger dose of medazolam this time round.... thanks Dr K x As I've mentioned before, I usually have 3mg of medazolam and I remember everything during the procedure and then forget everything for several days after. This time with the 4mg I didn't know anything until the nurse woke me to go home! Yes I'm still forgetting things now but I don't mind, I didn't feel a thing lol.
My new tube is so much more comfortable. Compared to my last one I can barely feel it all! Plus, it's white and not that awful yellow colour that makes you look even more ill! (things like this matter!). I only have one drawback...thinner tube means more blockages. Yup, hubby has been kept busy trying to clear the tube from blockages. We thought it was a goner this weekend after several attempts with everything recommended and had no joy. We decided to have one last go before making any phone calls and BINGO we got it going again! It is only really an issue because my feed rate is so slow that it solidifies in the tube. Hopefully when I can manage higher rates again this won't happen so much.
I've had several visits to my gp to re-organise my medication and to arrange for my outpatient IV's. I'm controlling my own increases of pregabalin up to 300mg a day but I'm taking it very slowly because it is making me feel very wobbly and somewhat out of it at times. I get episodes of vertigo and my head feels fuzzy all the time so its really limiting my activity. I don't like it but maybe it will pass as I get used to it a bit more.
After using the wheelchair so much in hospital I finally decided to go and get a new one! I got a really light self propel that folds up to actually fit in a car boot lol. It's also a slim fit so it fits my body frame better. It's so much easier for me and anyone helping so I think it was worth it. I've been putting it off for a long time but the way things are now I think it will be a while before I'm fit enough to leave it at home. It will give me the chance to go out more this summer so I'm happy.
I finally got my first lot of IV fluids on Friday evening after a lot of ring around to find out where and when I needed to be going! With it being a 4 hour infusion we didn't leave the hospital till 9:00pm so I was shattered when I got home. They were really efficient at the hospital and seemed to know what the plan was so I trusted them when they told me to ring on Monday to find out when to go back. Of course, when I rang this morning nobody knew anything about it! Five phone calls later I eventually get someone to fill me in. I'll be going twice a week starting tomorrow. I can't even begin to tell you what a relief it is to finally have a regular arrangement for my fluids. I have been dehydrated for so long my body thinks I'm a camel!!!
My dietitian rang me last week to see how I'm getting on. She was most alarmed by the whole situation and said she was going to ring my consultant straight away lol. I was expecting it so I didn't bother to argue this time and just agreed to let her do her own thing! I'll just carry on as I am, doing as much as I can to increase my intake. She couldn't offer me an appointment until the 13th of June.... even though she is so alarmed by my intake? So no one is officially monitoring my weight at all for the next month??? It's a good job I'm a sensible patient!
So, I think that's it for hospital updates but I have some more exciting news!
I met my first fellow gastroparesis patient! It was so nice to finally meet up with someone like me!!!! We had loads to talk about and we have started to make arrangements for some fundraising and awareness. I spent so long thinking that I was alone in all this, a year ago I never thought I would ever find anyone like me let alone meet someone who not only has gp, but comes from the same village as me!!! Honestly, I would never have believed it but strange things happen and I just know we are going to be able to achieve some good things!
That's all for now folks, keep smiling xxx
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 a much better experience this time round, I know my doctors read my blog from time to time and I'm so grateful that he gave me a larger dose of medazolam this time round.... thanks Dr K x As I've mentioned before, I usually have 3mg of medazolam and I remember everything during the procedure and then forget everything for several days after. This time with the 4mg I didn't know anything until the nurse woke me to go home! Yes I'm still forgetting things now but I don't mind, I didn't feel a thing lol.
My new tube is so much more comfortable. Compared to my last one I can barely feel it all! Plus, it's white and not that awful yellow colour that makes you look even more ill! (things like this matter!). I only have one drawback...thinner tube means more blockages. Yup, hubby has been kept busy trying to clear the tube from blockages. We thought it was a goner this weekend after several attempts with everything recommended and had no joy. We decided to have one last go before making any phone calls and BINGO we got it going again! It is only really an issue because my feed rate is so slow that it solidifies in the tube. Hopefully when I can manage higher rates again this won't happen so much.
I've had several visits to my gp to re-organise my medication and to arrange for my outpatient IV's. I'm controlling my own increases of pregabalin up to 300mg a day but I'm taking it very slowly because it is making me feel very wobbly and somewhat out of it at times. I get episodes of vertigo and my head feels fuzzy all the time so its really limiting my activity. I don't like it but maybe it will pass as I get used to it a bit more.
After using the wheelchair so much in hospital I finally decided to go and get a new one! I got a really light self propel that folds up to actually fit in a car boot lol. It's also a slim fit so it fits my body frame better. It's so much easier for me and anyone helping so I think it was worth it. I've been putting it off for a long time but the way things are now I think it will be a while before I'm fit enough to leave it at home. It will give me the chance to go out more this summer so I'm happy.
I finally got my first lot of IV fluids on Friday evening after a lot of ring around to find out where and when I needed to be going! With it being a 4 hour infusion we didn't leave the hospital till 9:00pm so I was shattered when I got home. They were really efficient at the hospital and seemed to know what the plan was so I trusted them when they told me to ring on Monday to find out when to go back. Of course, when I rang this morning nobody knew anything about it! Five phone calls later I eventually get someone to fill me in. I'll be going twice a week starting tomorrow. I can't even begin to tell you what a relief it is to finally have a regular arrangement for my fluids. I have been dehydrated for so long my body thinks I'm a camel!!!
My dietitian rang me last week to see how I'm getting on. She was most alarmed by the whole situation and said she was going to ring my consultant straight away lol. I was expecting it so I didn't bother to argue this time and just agreed to let her do her own thing! I'll just carry on as I am, doing as much as I can to increase my intake. She couldn't offer me an appointment until the 13th of June.... even though she is so alarmed by my intake? So no one is officially monitoring my weight at all for the next month??? It's a good job I'm a sensible patient!
So, I think that's it for hospital updates but I have some more exciting news!
I met my first fellow gastroparesis patient! It was so nice to finally meet up with someone like me!!!! We had loads to talk about and we have started to make arrangements for some fundraising and awareness. I spent so long thinking that I was alone in all this, a year ago I never thought I would ever find anyone like me let alone meet someone who not only has gp, but comes from the same village as me!!! Honestly, I would never have believed it but strange things happen and I just know we are going to be able to achieve some good things!
That's all for now folks, keep smiling xxx
Hiya Minxy,
ReplyDeleteglad you eentually got the hospital situation sorted out in the end. Fingers crossed you can increase your feed rate soon and start having more energy.
I didnt get on with gabapentin at all and ended up coming off it. However there is always pregablin to try.
Hope everything continues to look up for you and well done with the Sunday Mirror article I look forward to reading it!
Love
Rach