First Infusion since being in hospital

[john]

hi all,
tomorrow i am going for my first ivig since i was sick in hospital three weeks ago.
whilst there i did my own infusion in the admissions ward, and maybe because i was on "nil by mouth" all that day, or maybe because i didn't take the ibuprofen that i have been pre-medicating with lately, but i had such a nasty reaction to the infusion leaving me freezing and shuddering. so much so that sue had to pile SIX blankets on me, which stayed there overnight (remember how warm they keep hospital wards!!
naturally i'm feeling a bit apprehensive about what will happen tomorrow.
i'll pre-medicate, drink plenty, eat lunch and take it really slow.
wish me luck, and any good tips will be appreciated!
take care - john

[bamber]

Hi John,

Hopefully as you were very poorly last time. The little blighters ;)that are the antibodies of the donor of the blood used for the immunoglobulin, would have had had a hard job to do and had to run around trying to fight your infection. This meant they caused a reaction in temperature change in you. Now you are feeling better, the job they do will be easier and you will not get the same reaction.

I know if I have a full blown infection the infusions can cause some side effect especially with body temperature. I once had a severe ear infection and was in hospital and had to have my iv infusion at the time. I was very poorly during the infusion. I was told I had to put up with it as it was helping to cure me.

Along with your usual precautions hopefully things will be better this time. The only other time I needed extra help due to bad reaction to infusions I given a steroid injection first.

[mali42]

Hi John
With the bleed thinning your blood and remember we should drink plenty to swell up our viens I think thats why you had a reaction and not taking ibuprofen probably didn't help,

So as a professional pid I think you will be ok tomorrow :-)

Malcolm

[liz2mac]

Hi John, I do hope you go on ok and feel better (at least from the point of view of peace of mind). I had a bad reaction when I was in hospital with the chest infection. Woke up in the early hours with a migraine from hell and actually thouight i was going to die! When you've been stabilised on IViG for so many years its scary to suddenly react.
liz

[john]

hiya liz,
it IS awful to get a reaction to infusions, especially when you're just used to it going well, and when you spend time telling newbies that they probably WON'T get any unpleasant side effects!
i think i know exactly why this went wrong for me, i was SO dehydrated and hungry, worried as hell and in a strange (for me) environment without my lovely team on hand.
yesterday it all went swimmingly, i let them pump me and took 4 whole hours to infuse, which is very slow by my standards.
sue delivered me and collected me by car to avoid the rush hour and voila, i was home safe and sound, with nothing more than mega-tiredness to deal with!! wonderful!!
looking forward cautiously to saturday,
hope you're feeling more like your old self now
take care - john

[liz2mac]

Hi John,
So glad it all went well. I don't think that there is a need to be cautious about Saturday, it is, if nothing else, a chance for us all to get together face to face and enjoy each other's company. I will bring UKPIPS badges for those who want them and leaflets to give out. Health wise,I'm at the point where I can recognise that there is a light at the end of the tunnel and I do dare to believe that it may not be the on coming train that is creating it!
See you on Saturday.
Liz

[beckag87]

Hi all,

I am learning so much from reading your posts. I am extremely nervous about the IVIG but my immunologist who was presenting at the event has said that as I have no veins I may have to have subcut.

Tony asked the panel to explain the differences/pros and cons of each but I was asleep for most of that session - I have been very poorly over the last few days with a pneumonia that I'm really struggling to shift.

I do feel much more positive now that I know that there is some sort of diagnosis but am very skeptical about the infusions.

Becks

[liz2mac]

Hi Becks,
Don't be sceptical about the infusions, they WILL help you. It may take some months before you really notice the benefit, but believe us, you'll notice and your life WILL get better.
Liz