Here is My sheet on tips etc. Please add to It when we can compile it into a useful sheet.... I did send it to AUK at one stage.... not checked it is up to date so may be a bit old by a couple of years...
Hints and tips for s/c infusion pumps for Brittle asthma.
S/C Ventolin & Bricanyl and Graseby Syringe drivers. â€“ A bit about me and how I have managed with and without it. I used to use s/c bricanyl all the time since 1994 - it really helped me get through University. I managed to get a M.Sc. in Ecology.
I now only use s/c Ventolin when I really need I really need it as I became very dependent/ tolerant on it and needed longer and Higher doses of IV Ventolin when I was bad. I also had lots of site problems after a while with the Ventolin (bricanyl) not absorbing. Ventolin is more concentrated so you need less in the syringe and so less absorption problems. Needles - the best I have found are Sof-sets. I also carry s/c bricanyl as a bolus for acute attacks when I am not using my syringe driver.
TAPE TIPS - I use S/C Ventolin as a continuous infusion in a syringe driver sometimes. As this involves an infusion set such as a Graseby Flo-safer set or a Sof-set (I use sof-sets) it has to be held in place with some sort of sticky tape on to the skin. I have found problems with allergies to the various tapes. To find out which ones I was allergic to and which ones I could tolerate a nurse at my hospital suggested we stick all the possible tapes available, in strips, onto the inside of my forearm for up to 24 hours. Some I had to remove very soon due to irritation/reaction! I discovered which ones I could tolerate although I became sensitive to one of the new ones within weeks! Remember each person is different and everyone reacts to or can tolerate different tapes etc.
The tapes I have tried are as follows:
(I am not recommending any because some are expensive - If you try this, do it in collaboration with your GP, District nurse, Asthma nurse, Consultant etc as your Health Authority/ Trust may use different types or brands)
- Flexipore (a bit like Spiroflex, but still expensive)
- Duoderm (also expensive)
If you know of one not listed here please tell me about it - Thanks!
I found a brilliant web site on the internet which gave lots of helpful advice on Sof-sets.
For those of you not on the net, here are a few tips
* Make sure you rotate your sites! Overuse of one site leads to a reduction in absorption and hardening of the tissue.
* Damaged tissue can take at least a month to recover.
* If the plastic on the sof-set irritates your skin, place some tape on the skin first and insert the needle through it. (I found it helps to cut a small hole first!)
There are a lot of other bits of useful information listed. Hope the above are useful.
My own tips are as follows:
* With tough skin or sites and difficulty holding the sof-set due to arthritis I hold the sof-set between my first and middle finger with my thumb on the inserter needle. It is easier to insert and you can get more pressure to get the needle through the skin using your thumb. You can also get a gadget called a Sof-serter to help put them in. It is easy to use and can help get sof-sets in difficult places like your arms.
* I sometimes tape a bit more of the line down to make a safety loop to stop the tape being pulled off dislodging the sof-set.
* I use the blue infusion clamps to tie up the line when in the shower or when I go swimming. In the shower, I take the syringe out the pump, wrap the line around my middle and secure it again with the clamp. (I used to use tape.) Swimming, I use a bung on the end of the line, but tape it down, coiled up under my costume - this is OK if it is in your stomach.
BAGS FOR PUMPS.
How do you carry your syringe driver around? Do you use, or have been provided with the manufactures bags or do you use your own?
I never had a manufactures bag so at first I used a passport purse hanging round my neck. I then started designing my own. They started off very basic - a cloth bag with a belt loop, and then they got a bit fancy with flaps, Velcro and pretty material. I use an elasticated belt with a quick release buckle most of the time (I occasionally use my trouser belts). My friend and I have recently been exchanging patterned materials to make new bags - I now have quite a collection to suit different moods, outfits etc.
I also use a manufactured Passport pouch from a company that makes climbing gear - It has useful zipped pockets on it and is very robust!
I also keep details in my pump bag of what is in the syringe just in case I am flattened by a bus and end up in A&E, not able to explain what is (or was if the pump is also flattened! Enough sarcasm!!!)
The pump bags are easy to make, but if you are struggling, I can provide a pattern and some instructions.
Useful web sites
applied-medical.co.uk/index... Good info on s/c infusions, sof-sets etc
minimed.com/files/sofset_2.htm A US web site on Sof-sets etc.
FAQs. Adapted from the NAC message board.
These are some of the question topics that have been posted on the NAC message board with the suggested answers. (There is some repetition of what I have said above)
I have bruising and bleeding from where I put the needles in â€“ what is causing this and what can help?
Bruising and bleeding can be a side effect of the steroids. I find if I knock myself even it bruises badly. The solid butterfly needles are the thugs of the s/c needles! Try asking about Sof-set needles by a company (USA one) called Mini Med if you donâ€™t already use them.
Another idea is to use very tiny venflons - the yellow ones called neoflons as they are used for little kids and little babies IVs. They are similar in size to butterflies but as you can withdraw the needle it leaves a flexible plastic bit in situ. I have used them in an emergency when away and in other hospitals with no sof-sets!
I am having problems with leaking needles â€“ what can you suggest?
One way round the leaky problem, amongst other problems with s/c was to change to s/c Ventolin because you only need half the volume in the syringe. Most people are use bricanyl. Have you increased the rate and what dose are you on?
What sites are you using? The tissue (sub- cutaneous fat layer!) can become less absorbent with use, not helped by steroids. You can try other sites such as the tops of your arms, leg tops as well as the tummy area - avoid stretch marks if you have them - they definitely leak!
Ask about sof-sets if you are not using them yet.
My consultant has suggested s/c bricanyl infusion â€“ does it work?
I found it OK at first but after a few years I became very tolerant to it, needing loads of IV Ventolin when really bad and also problems with needles and sites. I now only use it when I am not too well (using loads of nebs) to try and avoid hospital but if I still deteriorate I go in - have a dose of IV Ventolin and sometimes use s/c when I come off the IV for a week at the max!!
It can help in the short term but don't rely on it. (Although I know of people who have been on it for years with little problems) Also, please take note of what your Doc says as it doesn't suit everyone.
If you do end up on it you can still do things like Rock climbing and Abseiling!!! Swimming, just bung the line off for a bit - Half an hour is usually OK without.
I do feel better without it most of the time now but have it as a back up.