New Pumps and an update

[floopyjim]

Hi All,

Hope youy are all well.

Had my 6 month Immunology clinic visit and things are certainly clearer now.

The consultant said that my PID is more like CVID than anything else - up until now I just had the classification 'PID' which caused a lot of questions amongst other doctors who kept asking me what type of PID and I just said I didn't know.

So that means I am definately on SCIG for the forseeable future - given that I haven't had an infection for 7 months now means it's definately working.

The Specialist Nurse also asked if I wanted different pumps that would infuse faster (knock 30 minutes off each pair of infusions) - this sounds like a great idea - it already takes 3 hours to infuse and to get an hour back would be great. She mentioned they would be Crono pumps and would use diferent syringes?  anyone else use crono pumps? are they easy to use?

Now all I need to do is sort out this Prolapsed disc and I can get my life back.

Cheers,

James.

[john]

Hi Jim,
I use a crono pump...it's OK, discrete and easy to use once it has been programmed, a procedure I found very complicated!!!
It uses a battery which someone told me costs £25 odd pounds, but the battery does last a long time!
It also has a lanyard so you can hang it round your neck.
The syringes are called reservoirs and are 50ml, so I use two, one after t'other!!
Best of luck with it all and I hope your back gets better soon
John

[floopyjim]

Cheers John,

What rate do you infuse at?

£25 for a battery? Blimey! Glad I don't pay!

James.

[john]

45 ml per hour!

[lm3]

Hi James, I'm new to the forum, but thought I'd reply to your post.
I've been using the crono pumps for few years now they are great, easy to use, compact and come with a lanyard as mentioned above, so that you can hang them around your neck. Great if you want to get up, move about or do something around the house it does make it a little easier. I'd suggest to go with the infusion rate recommendation from your immunology nurse and after a few wks see how you feel (obviously with no adverse side effects) and if you can cut down a little your infusion time each time you infuse or over a few infusions, gradually reduce it. I have the same issues wanting to reduce the time it takes to infuse as I have a young family and need to be moving about trying to get things done.
Lynne

[prickles]

Hi James

Caitlin used to use the crono pumps before going back to IV. She infused 40ml each side over an hour into her tummy, looked like she had another set of boobs when finished she preferred to use the belt to the lanyard because of the tubing getting caught.

Sue

[floopyjim]

Thanks all - I am really looking forward to getting some of my Saturday afternoons back - not sure if I will be moving around - I have tried it a few times but I always end up with massive bruises where the needles have been so I tend to stay where I am - it gives me a good opportunity to watch netflix or play games - on second thoughts, I wonder if I could slow it down?

James

[floopyjim]

So, no new pumps, the nurse got it wrong. Apparently she thought I was on 5 infusion sites, not 4. I do wonder if any of the NHS staff read my notes?

I realise I should be grateful for getting infusions in the first place but what with the prolapsed disk in my neck, the CVID making it heal very, very slowly, chest pain and coughing, painkillers making my stomach hurt, I'm not feeling very grateful about much at the moment.

sorry... I really am getting to my wits end.

James.

[john]

Hi James...sorry to read this, it's typical for things to go up and down with cvid, specially during the winter when chest infections are inevitable. Seems to me that if your cough wont go away you need a different antibiotic, and if you feel that the infusions delivered by SCIG are not suiting you, why not ask to have a break and go back to IV for a break? The five site thing I just don't understand...speak with the consutant and get his view. As for your neck, I can see that coughing is gonna exacerbate the pain, but that is the only link and it's been going on for too long not to be getting some special treatment of its own. Hope you soon get some respite from your pain...John

[floopyjim]

Thanks John, it's very much appreciated. I don't really mind the infusions, I still see them as a really good thing, I just don't like people dangling a carrot in front of me and then snatching it away.

The cough isn't too bad - not bad enough for antibiotics; I cough every day, it's just part of my rubbish lungs when I have a cold (my 7th cold in 5 months!).

I had an epidural in my neck last week but it doesn't appear to have done anything yet. I have emailed the consultant (I went private as the NHS said there would be a 6 week delay) as I am worried it's done nothing to help - it was a bad prolapsed disc - it surprised the radiologist who did the injection!

Sorry for the rather whiny post - all these things seem to pile up at the same time and it leaves very little room to feel positive.

James