First ever infusions

[syd]

Hello,

I'm due to start having replacement therapy very soon and I'm a little worried, both about the treatment itself and my work.

Will I be able to fit this treatment around my work? I mean the first 3 infusions. How have people handled this wth their jobs? My girlfriends thinks I should just quit my job!

Also, what can I expect? If I have a bad reaction, how long can it last?

Cheers,
s

[slf]

Syd
I can remember feeling exactly like that,worried about the reaction I might have.
Fortunately i was told that a reaction is quite rare,and when I had my first infusion I wondered what all the fuss was about,it did'nt affect me in any way(lucky eh!)
I am not sure what your circs are with work,I did find that a whole day every 3 weeks did make life difficult for me,it all depends on your employment,I did agency temp work,so I was'nt under pressure but did lose money or use up holidays. The alternative I feel sure you will be offered is SCIG whih you can do at home for a short time weekly,and you may find this suits you better.
But please dont give up work or worrry over reactions,it may never happen,I ahve only once had any sort of strong reaction in 3 years,probably because I was sick at the time.
Take care
Steve

[mali42]

Hi Syd

Its natural to be worried about your first infusion and like Steve said afterwards why was I worried,
They take extra care on your first few infusions just for that reason, reactions are rare these days,
I feel washed out on the day of infusing so I use it as a lazy day.

I had no problems with fitting my work round infusing but I did get a headache 2 days after so I took paracetamol which helped and I hardly ever get them now but it was not bad enough to stop me doing my full time job.

Malcolm

[john]

hi syd,
it's only natural that you are worrying, because this is going to be something outside your own experience.
when i started on ivig it was so long ago and no-one ever mentioned the possibility of bad reactions and they never happened!!
i was working for an understanding employer (in medical research actually!), and they were perfectly happy to let me take a day off every three weeks, specially as i endeavoured to make up that time by working extra when i needed to.
i certainly never ever thought of giving up my job.
as steve says, and it goes for me too, the number of bad reactions to ivig i have experienced can be counted on the fingers of one hand. i can usually see exactly why i got them, poor hydration, being in a hurry or having an untreated infection at the time of infusion.
i normally feel absolutely knackered after my infusion, but can get myself home on the tube/train and when i get home i just rest up and fall asleep! next day i'm right as rain, full of beans and ready to go, certainly well enough to go to work.
you can use your infusion time to read. write, listen to whatever or just rest. i see lots of folk in my clinic doing work stuff, so they don't miss out there!!
so... try not to worry - you'll be fine syd,
take care - john

[syd]

Ok thank you all, I guess I won't quit my job then! I work as an English teacher at a language school and my boss is happy to make other arrangement when I have to go in. Nonetheless, I'd heard stories of people reacting and being very ill for a couple of days and this kind of thing is a lil harder to predict and therefore a lil harder for my boss to plan for.

On your first infusion, how long did you stay in hospital for? Here in Spain, they've told me that I may have to stay in hospital for 24-48 hours so they're booking me an over-night bed. Is that the same in England?

[john]

hi syd,
that sounds like caution above and beyond to me!!
i never heard of infusions, even the first infusion, being anything but a day clinic job!
if your girlfriend is free to accompany you for the first couple of times, that might make it less stressful.
anyone else heard of inpatient arrangements for the first?
glad you're not giving up your job!!
take care - john

[slf]

Syd
I have never heard of this happening in england before. The one occasion I did have a reaction they waited for me to sleep it off,about an hour and called me a taxi.I joked later that I was too ill for hospital:) Sounds like the spanish really take care of you or are finding a way to up the bill!
I am glad you have decent employers, that makes life so much better, Iwould treasure them wish I had found one like that.
Steve

[syd]

Oh wow, ok so it sounds like they do things quite differently here. I have no idea why? I'll try to find out and put it in my blog!

And Steve, it's another subject I'm interested in. What peoples' experience of working and finding a job with this disease has been. And whether anyone has felt they have experienced discrimination. And also, what rights we have in the work place. But I think I'm going to put up a different post about that.

[tinasparkle]

Hi Syd
I had my first infusion last week. I was quite shocked when I was told that I would be starting on IVIG infusions, but as others on the forum have said, the medical staff looked after me really well. I didn't have any reaction, other than a headache and fatigue (but I have those most of the time anyway!) The first infusion took about 5 hours for me and I felt fine afterwards and was able to travel home (2 hour train journey) by myself. I think it would have been better if I had had my boyfriend to travel home with me, but it was too far for him to travel to pick me up and he couldn't get the time off work.

As regards getting the time off work, I have experienced very different responses over the years from Managers. I have to travel a long distance to my Immunology Clinic so I have always needed to take a day off work to attend routine appointments. Some Managers have been fine and just let me attend without having to take annual leave or sick leave, or make the time up. Some have insisted that I have to take annual leave (even though there is meant to be a degree of discretion within the NHS where I work as in theory attending the Immunology appointments helps me to remain well!) I was discriminated against and bullied by my last Manager. He made my life miserable and eventually I left the job. I found another job and he wrote a very, very bad reference for me and the job offer was withdrawn. He basically stated I was unrealiable, with poor attendance and time-keeping, none of which were true and I have never previously had any issues regarding attendance, performance or conduct raised by any other Managers I have worked for in the NHS over the last 17 years, even despite a couple of quite prolonged periods of sickness absence due to infections and post viral fatigue. I am currently in the process of taking that NHS Trust to Employment Tribunal - so far it has taken 1 1/2 years and we haven't even got past the stage of deciding whether I am covered under the disability provisions of the Equality Act 2010!! A Tribunal Panel decided that I was covered under Equality Act last August, but the NHS Trust are appealing against that decision and it's taken almost a year for them to hold the Appeal Hearing - it is a nightmare, stressful and exhausing, but I am not prepared to let them get away with it as I am a hard-working, conscientous individual who just happens to have a PID!

I am lucky that currently I work in an Occupational Health Department so the staff are more understanding of unusual medical conditions and my Manager has been quite flexible on how I work my hours so I have been make the time up for my last infusion.

I am sure that others on the forum would agree me that even if there is legislation to protect people with chronic medical conditions, employers can be entirely subjective in their interpretation of it. Within the Equality Act 2010 here in the UK only a few conditions are definitely convered under it's auspices, every other condition can be, and is, debatable regarding whether it falls under the legislation - and will depend on how others perceive the impact that your medical condition has on your day-to-day activities and whether it is 'long-term'. It's a bit of a minefield really.

I hope your infusions go well.

All the best - Tina

[syd]

Tina, thanks for your reply, that's really useful info.

I've been researching recently and looking at the equality act and found, like you, that it's not very useful! I kep thinking i must be missing something, there has to be something more kind of solid for people with chronic illnesses but apparently not.

And what an absolute....the only word I can think of is "ARRRGGGHHHH" concerning the reference. It must have just been so infuriating. I feel for you alot. The symptoms of this disease are one thing but then being treated like that is another. Would it be possible to use your story in my blog?

Syd

[mali42]

From what I was told but not sure how much is true, we can't be under the The Disability Discrimination unless it is proven that we have a disability and In one of my letters from occupational health it said I was likely to fall under the DDA so managers have to be careful how they treat us,

I did not take that much time off work and went in unless I was ready to drop so towards the end i was hoovering on and off 1st stage warnings which was up to the manager taking it at that time if it was issued or not but their strings were pulled by senior managers who's policy was to issue regardless and one manager made that mistake and told me and the union rep and there was hell to pay for him.

But then I had 3 minor ops which laid me up for 4 weeks at a time and I went to a 3rd stage warning which meant I could possibly be dismissed,

My letter was sent the second day I was off ill by special Del saying that I could be dismissed and there was no good reason for my sickness.

I had had several infections that year and could not get back in the swing of things and had 2 silly accidents at work IE falling down stairs which I didn't get hurt but was really lucky and all because I was so exhausted,

I was so sick of meetings reminding me I had cvid so at my last meeting which was threatening me with dismissal I suggested going part time 4 hours a day and he agreed and because the all the jobs in the office were being changed that would not have been a problem,

In the end he went back on his word and just offered me a 6 hour a day contract but I would have to sign to say I would complete which in reality meant I would be worse off than what I was doing.

By this time life just was not worth living so i spoke to occupational health and was paid off within 2 weeks after 18 years there.

I just wish I had the strength to fight them at the time and I would still be part time there now.

Malcolm

[syd]

But how do you know if your illness falls under the disability act?It seems like the act only comes into action in the court room by whih time it could be too late, if it were decided that you're not disabled.

People need to know if their illness falls under the act or not in order to know how to deal with jobs and work and so on. Otherwise it's more or less upto the discretion of the boss.

[mali42]

But thats the trouble and we are left being uncertain where we stand, most managers are aware of this and know they have to be careful if it goes to a tribunal and they may have to pay out and get bad publicity.

But that does not help us especially when being victimised while being run down and exhausted from fatigue, and also the feeling of guilt because we have an invisible condition and generally look ok.

I agree its something we need to know and maybe thats something UKPIPS can change.

[syd]

I agree, maybe we can do something

[slf]

Hi Mali
As I understand it the Disabilities Act states you are disabled if your illness effects your day to day life. I am not sure this is much help,it certainly did'nt help me at my benefits tribunal,in their opinion being disabled does'nt mean you cant work.
Before I was diagnosed I found employers far from understanding,but that was'nt helped by me not understanding why I was ill so often myself. Unfortunately my working life was not extended by diagnosis,but that's another story.
Steve

[mali42]

Hi Steve
Its proving that this condition affects your day to day life and thats hard when managers really are not interested in how we are feeling, OP stated i am likely to fall under DDA but they would not commit themselves.

So we are in limbo if a managers thinks we are taking the mickey,

I remember going in to work feeling terrible and looking terrible for a change and knew I would no be able to complete and asked for help and the manager shouted back I CAN'T GET YOU HELP JUST LIKE THAT those days are gone and I thought to myself I should have just phoned in sick. I had only ever asked for help once before so it wasn't something I did often, When I finished after what seemed like an eternity I flopped into the office looking even worse than before and I made him feel bad and he did appologise but the damage was done.

Malcolm

[s162216]

Hi,

This does actually represent one slight fear that I do have regarding me having CVID - I am studying for a degree in Pharmacology and of course that gives me a career working in a lab, potentially with infectious agents; I might be unduly worrying, but I do fear that my CVID could make it difficult to get a job as the moment a potential employer finds out, they could turn me down on the grounds of heath and safety or just being concerned about me not being at work if I'm ill. Its already been difficult enough just to do animal handling at University, they wouldn't let me do it until they had a wavier from my immunologist as they were concerned I would sue them if I should get bitten and get an infection (not that I would do that, lets keep things in perspective!).

I hope that things go well with your tribunal as its not right that you should be given a bad reference etc just because you were ill for reasons that you have no control over.

Sam

[mali42]

Hi Sam
I never thought about it from that side and asks the question do we tell future employers that we have cvid or not and is it a requirement to declare it by law, employers would not really know what it is or undersatand it and probably give the job to someone else with no disability,

I know they can't do this by law but who would know and proving that would be to hard.

I have not been in that situation jobwise so haven't any answers, it would be interesting to see what others have done.

Malcolm

[john]

hi all,
i used to refer folk to this resource when they were asking about problems with work

www.direct.gov.uk/DisabledPeople/fs/en

i also got an employment lawyer friend to write a practical guide for us when i was at pia, it was good but has sadly disappeared along with most of the other pia publications. if anyone out there has a copy of it i would love to see it again!
anyhow, have a look and see if the link helps. it's all a bit academic for some of us as we caved in and got out, if only for our sanity!
hope you're all keeping dry!
take care - john

[liz2mac]

Hi everyone, I'm sorry that I've been away whilst this has come up. I strongly believe that CVID and XLA are covered under the disability discrimination act. I feel that this is most certainly an area which UKPIPS will be actively involved in. I am in the process of drawing up an advice sheet about it all, which will have to be approved by our advisors in HR and by a specialist team of solicitors. However, for the record, this is my personal take on it. CVID & XLA are life long conditions which have an effect on our daya to day living and require substntial treatment in order to keep us alive /well. In view of this I do not see how anyone could win an appeal that says we are not covered by the Disability Discrimination Act.
As to employment. Some CVIDs & XLA's are so well that they may chose not to tell their employers about their diagnosis. This is their choice and it is a valid one. However, you cannot then expect your employer to recognise you retrospectively under the act if your health declines. If you are diagnosed during the term of your employment then you may chose to tell your employer and ask to be considered as disabled under the act. If you chose to tell your employer you can ask for "reasonable adjustments" to be made for you. This (as I understand it) means that any adjustment you ask for must be workable within the business that you are working in. For example, in an office based job, the reasonable adjustment may be that you ask to be allowed to work from home on a laptop on the days of your infusion. It may be that you ask for the amount of time your employer allows for sick leave before the "warnings" begin are extended to be longer than for other employees, this would have to be negotiated with your employer. If you work in other types of occupation it could be that you ask for your shifts to be worked to accomodate your infusion days, thus these would fall on your days off. The same goes for your regular appointment with your Immunologist. When should you declare that you are disabled? I understand that if you do not declare it at the time of interview (I personally wouldn't do it beforehand, at least you can gaurentee getting through the sift to interview stage without fearing discrimination) and it is then discovered at the pre employment occupational health interview, the job offer could be legally withdrawn.
If you have declared your disability and can "prove" that it will not impede your ability to undertake the employment you are seeking and then they withdraw the offer for no reason other than your disability, then you are protected by the act.
Hope this helps. I am horrified by what is happening to you Tina and I want to help. That it is a health authority makes it all the worse. Malcolm, I am so saddened at what happened to you. We all have so much to offe in terms of skills and abilities and it is so sad that our variable health leads us to the employment junk heap at times. However, we must remember that there are some of us who are really well and are able to hold down demanding and rewarding jobs. UKPIPS wants tio enable those who cannot work to get the benefits they are entitled to without having to teach those examining us what PAD & PID are, and to enable those who are well enough to work to do so without falling foul of discrimination. Sam, your problem is an interesting one, however, off the top of my head, if employers have proper health and safety procedures in place and you follow these, I cannot see that you are any more at risk than anyone else. If any employee is at risk of contracting infection from their work then it is imperative that the employer takes all reasonable steps to protect them. I will talk to our health and safety adviser about this and get back to you. By the way all, most of the peole we go to for advice are our members, not bad for those of us on the employment scarp heap eh? We all have so much to give, even if we are currently too unwell to work.
Liz