Welcome Stuey!

[john]

Hi Stuart and a big welcome aboard!
You seem to have everything under control, and I know that the Cambridge team are excellent, so you're in good hands!
The pervasive problems of tiredness and aching.... Just about every patient I ever talked to complain of these two, me included!
My best advice is to pace yourself and not take on more than you can manage, and also to find out what makes the aching more tolerable, such as supports, compression bandages, massage, hot baths... i've rried them all!
Post often, and ask anything, we are a very easy going bunch and like a chat with fellow pid patients!
Take care - John

[Stuey]

Hi John,

Thanks for the welcome, the team at Addenbrookes (Cambridge - UK) are amazing but I am in the process of relocating to Derbyshire and with that comes the stresses of having to transfer all my treatment and care arrangements to the equivalent hospitals in the Sheffield area.

Luckily my consultants personally know their counterparts in the area I am moving to so have gone 'over and above' by meeting in person to discuss my case/history, hopefully this should result in a reasonably stress free transition (touch wood!)

[s162216]

Hi Stuey and welcome as well from me!

I'm under Addenbrookes as well at the moment, and agree they are a very good team. They diagnosed me with CVID two weeks before I was due to go to university in Nottingham, but they were able to arrange for everything to continue in Nottingham at the Queens Medical Centre as well so hopefully you won't have any problems transferring over. I infused at Addenbrookes during the university holidays, and am now back there full time as I finished my degree last July.

About the one criticism I've got with Addenbrookes is the way in which the infusions happen as I've never actually met another person having IVIG there (for PID anyway - I did meet someone a couple of times who was having it for systemic lupus) whenever I've had an infusion there - being able to have it any time of the day/week is probably why though. I will admit that I did much prefer the QMC's system of having a dedicated IVIG clinic once a week as then I'd see the same patients, immunology specialist nurses etc every time, and it was quite a social atmosphere talking, sharing out cake etc. Apart from that though Addenbrookes certainly do a good immunology service.

Sam

[Stuey]

I've been in at all times of the day for my infusions but the past few months have come in early evening 5pm to try and minimise the disruption to my working life (it can all add up with treatment visits, clinic appointments,lung function tests, CT scans etc etc)

I agree with your observations of different folks, a dedicated IVIG clinic sounds good, you all have things in common and makes a good forum for information sharing.

My only criticism of Addenbrookes would be that they had a superb immunology support team, one lady in particular who moved to another department, she was full time, but on my recent telephone call to the immunology nurse bleep number it appears they only have 1 person now only working on a Monday, and whilst the person in this post is very good, they really need her in that role more than 1 day a week, but as I understand it, it is a financial issue!!

However, I know a lot of other departments/personnel who will bend over backwards to find out anything for me or pass on messages, I also have given consent for the immunology consultants to email me directly, and have on more than one occasion emailed Dr Kumararatne directly, and he generally responds very quickly!

Good to know about your arrangements being re-organised successfully, generally Addenbrookes have excelled in provision of care, in my personal experience.

[s162216]

To be honest one of the biggest pains for me though is getting to Addenbrookes! I live just outside Bedford, and unfortunately Addenbrookes is the nearest place that does Clinical Immunology so it means a lengthy trip of several buses (as I don't drive) every 3 weeks. I know that I could potentially do it as home therapy, but I am quite difficult to cannulate, and subcutaneous is not really possible for me as I don't really have very much subcutaneous fat, and the little I do have I need to use for my subcutaneous insulin pump which remains connected to me all the time. Plus I already put enough needles in myself so its nice to have somebody else do it for a change!

Sam