After many years of being fobbed by various drs and hospitals I have been referred to RBH who are great and sound so positive. I saw the consultant last week and have to go back in 2 weeks. He said they would probably start subcut terbutaline and I know some of you are already on it so am looking for any advice, questions I should ask and any tips on how you go about day to day with the infusion in situ. I am a nurse and will obviously have it on whilst at work - long days and nights.
I am currently waiting for subcut and I have been told that due to the funding for the pumps many PCT's are turning patients down as it is a unliscensed drug or something like that so might not happen!
In relation to funding and the pumps that deliver the medication, when I was with RBH they supplied the syringe driver and billed my local PCT, so as long as you are under RBH wouldn't worry about who will fund that. District Nurses are usually responsible for supplying you with syringes, needles and giving sets from your local GP practise. Bricanyl is a licensed drug. and is available in vials for the delivery of one off injections, just the chosen method of Bricanyl delivered via a syringe driver is not licensed as such. But I wouldn't get overly concerned about this because the method as been used for many years, and RBH being an internationally known Lung and Heart Hospital who have used this method of treatment successfully for many years would not suggest this treatment if it wasn't highly successful in many of their other patients.
There are various things I could tell you about sub cut Bricanyl, but rather than this post become awfully long winded, pm me and I will happily tell you about my experiences with this form of treatment.
Kind regards
Katina
Thats what Heartlands do but they have to apply to the PCT before trying you on it as they dont want to get you stable on it to take it away when the PCT argue!!
They are turing down allot of people at the moment I got told by my asthma nurse at heartlands
The RBH give you a pump and the words house and brick spring to mind, my local provide syringes and needles, my district council collect and replace my sharps bin door to door service, the terbutaline is provided by GP.
McKinnley T34 is the name of the pump. It comes with a carry bag that has defied all attempts to work out how to wesr it!
Good Luck with everything
I forgot to mention, having to tote around a pump 24/7 means you need something to put it in and you need bags for all occasions and moods. When RBH switched from the graseby I had over 30 pump bags Sadly only a handful will take the new pump but the Cath Kidstone mini saddle bag is perfect and it comes under ""asthma emergency bag criteria"" watch out credit card here I come....
Bex
ps the larger saddle bag is ideal for all the medical stuff I need to cart around just to leave the house and has the virtue it does not scream ""poorly person"" at people
PPS youngest says the bag is lovely but the wheelchair, oxygen etc do enough screaming for my bag not to count
Hi
I'm sorry to hear that you have to start on a pump.
I have been using a grasby pump for 15 years now, when all other treatment fails i have to put it in for 10 hour periods. I have found that putting the butterfly into my thigh works best for me and yes it is inconvenient carrying the driver around, I was given a pouch with shoulder strap when i had mine, but find it easier to wear trousers with large side pockets lol
I have salbutamol in mine and over the years find that i am best to connect it in the evening and keep it in through the night as it makes me shake severely and very unstable on my feet after a couple of hours. I also have to inject myself with Brycinal which is less agressive treatment and seems not to give as many side effects. Have you tried the injections????
I think must drugs affect people in different ways. I found it better for me personally to use these treatment at night due to intense pain in my legs and back, so using them prior to going to bed helps as i can sleep through most of it.
If you would like to know anymore please dont hesitate to ask.
Good luck xxxx
hiya,
i nursed whilst having a pump on , i still wore dresses at the time so had a hole on the inside of my pocket for the line to go through, that way nobody knew i had the pump on,
good luck, g x
Hiya Ive been on it for a while now but it takes time to get used to it. I have a crono
A couple of things.....
1. I changed the horrid blue strap to a cream one and made it longer so it hangs on my hip
2. Don't do what I do and forget its sitting on a chair and stand up
3. watch out for door handles LOL they seem to attract the set wires
other than that give it a go and see how it's doing.... I have a feeling mine isn't working as well as it has done so bit worried it will be taken off of me again here's hoping this is just a blip
Oh also regarding funding.... I had a problem recently. The hosp didn't want to pay for it and then my GP wouldn't so was in limbo for a while. Hosp now providing it but worrying until it gets sorted!
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