ILOPROST

[Anteater]

Admission for Iloprost today - not so likely, no beds yet have to wait till after midday to see if anyone is going home - here we go again !!!

[Roamer]

Damn. Hope they get you sorted soon.

[Anteater]

No beds today, calling me tomorrow morning with update

[zenabb]

I am in the second day of my three days Iloprost. I hope you get yours. Mine have a special unit for that sort of thing, does yours?

[Anteater in reply to zenabb]

Hi Zenabb,

Yes, mine does have a special unit for Iloprost and other daily infusions that people might require - in this unit you are on Iloprost for approx 6 hours a day and it is open from 8am -8pm Monday to Friday.

Unfortunately, I have it on 0.9 ml hour continuous for 5 days and require a bed. I cannot tolerate any higher and I suffer from terrible migraines whilst on it.

Keeping fingers crossed there will be a bed available tomorrow.

[SandraMarie]

Do they not offer you pain-killers and anti-sickness medication before you start? and usually if you're booked in, a bed would have been reserved for you, as in my experience the patients on the iloprost such as we have, need to be lying down because of the side-effects??

[Anteater in reply to SandraMarie]

Hi SandraMarie,

Yes, they do offer painkillers etc but I still get the migraines, I suffer with migraines normally. And yes I agree, you would think that if are booked in a bed should hv been reserved but the ward I get admitted too is not just for Iloprost patients and it is very annoying because my hubby has to book time off work.

The ward you can go on a daily basis is open between 8am and 8pm Monday - Friday you have Iloprost over 6 hours and have to sit in chairs. I tried this and was the most uncomfortable experience and I cannot tolerate it over six hours.

Hopefully, a bed might be available today.

[suzy66641 in reply to SandraMarie]

If only this were true! All I get at my local hospital is a chair to sit in (should recline but its broken!) plenty of tea tho and lovely staff so I thank my lucky stars

[SandraMarie]

We have to book months in advance, I presume to ensure a bed is reserved?? Good luck!

[zenabb]

I hope that you have it now. I can see the difficulty the hospital have if you are in fact an in-patient for 5 days. A disagreeable experience but a necessary one. I have finished my three days and I am thinking about you.

[nannysue1950]

I sympathise with you - the same happens to me. You get things organised (home, work etc) so that you can be in hospital for 5 days and then, on the day of admission, there is no bed available. Then I have to phone the next morning to find out the bed situation and so on. Admittedly, this doesn't happen all the time and sometimes I do manage to go in on the date I have been given. It's bad enough having to go into hospital without having the uncertainly of whether or not there will be a bed available. The thing is you can't get mad with the bed managers as they are really trying to do their best in an impossible situation - too many patients, not enough beds and then they have to prioritise. If they have an influx of emergency admissions then the routine ones have to suffer. However, knowing all this still doesn't help - my admission may not be an emergency but for me it is essential. Fingers crossed that you get a bed soon

[Alexandra-M]

Hello!

I am keeping my fingers crossed for you,and hope that a bed becomes available.I tried Iloprost twice and couldn't tolerate the severe headaches and have wimped out ever since,you are a brave lady!Good luck ! Best wishes Alex

[Anteater]

Hello, got a bed on Wednesday so not too bad x on my 4th day now

So home tomorrow evening x

[suzy66641]

That sounds familiar! Glad I've decided not to have it any more but all the best, hope you get a bed soon x