Grrrrrr no flexibility of treatment

[dianesistern]

I need a rant i have been having immunoglobulins for over 20 years at N+N and papworth laterly at N+N never had to cancel an appt at short notice ever but i was unexpectedly given two tickets to se Norwich V West Ham well i am a Norwich fan and my partner is a west ham fan so i could not pass up the opportunity of the grudge match of the century now that we are both in the premier league so i asked if i could change my treatment day well here begins my rant the unit that i am treated on is so busy that if i dont keep my saturday appt i cant be treated for another two weeks making it five weeks between treatments, am i not entitled to a life and its not my fault that the unit is so busy so what do i do pass up my treat to the football or go down with another infection grrrrrr i feel like being a teenager and stamping my feet and screaming I HATE MY LIFE !!!!! Nurses on the unit cannot do anything and i spoke to the lady that does the booking in and she just said its just my job to book the appt" i do my job and go home at the end of the day." so now what i am in limbo land feel like saying well dont bother i just wont have any more treatment and again grrrrrrrrrrrr

[mali42]

Hi Diane
I would be upset to and its a shame they are not more flexible, Have you ever had the chance to do home infusions which would help with situations like this, i normally do mine on a sunday when its quiet but Pat was working so we swapped to saturday.

Malcolm

[dianesistern]

Hi Malcolm yes sub cut is more flexible done it for 3 years but i seemed to be getting way more infections so back on ivs. I saw my consultant on tuesday and we discussed going back on sub cut but i know its a bit vain and health comes first but i hate what it does to my stomach Diane

[bob]

Well, trust it must be a very busy unit if there were no other times available!
I do IV IgG at home, with total flexibility, as many times I don't feel well enough to have the treatment. So what happens if you have to miss an appointment due to being unwell?.....do you have to wait weeks?
Does your local NHS support home therapy?
Bob

[mali42]

The drawback of home ivig is you need a willing partner I'm not sure if you need one for subcut.
Malcolm.

[dianesistern]

yes having a willing partner for home ivig might be a problem as my relationship is very up and down and not sure if i could rely on him being there regularly even though we live together, he used to be around for subcut but these where very fraught occasions with either of us getting angry nad uptight not very condusive for treatment, i cant really have ivig at home as i have a propensity to have anaphalactic reactions, not pleasant, the unit is very busy but funnily enough when they needed my bed for a wednesday appt they had given me they miraculously found a spot for me...... but ime now in for two weeks iv antibiotics so we will see how that goes. Diane