Hi its my first post

[bamber]

I write to you after returning from holiday at the seaside in UK. I still live in UK - but its seems when ever I go away I come back and get ill. I have been shivering with a fever and feel like something is sat on my chest. Will have to see how it goes.

I was a member of the PIA previously the hyogammaglobulinanemia (spelling?) society since it began and worried about its change to a big society.

I have been diagnosed since 10 (now in 40's) and went through a long time without any one knowing anything and no society help. I am from North West. But do home therapy(sub cut) so not spoke to Hospital yet. Last newsletter from Hope hospital at Xmas was still talking about the PIA existing.

[john]

hi bamber,
welcome to our forum.
pia and its shortcomings will be a story we can all empathise with. never mind, let's draw that line in the sand and go forward with something manageable and supportive now, i'm speaking of UKPIPS!
sorry to hear you're sick AFTER your holiday - holidays usually pick me up and make me feel better when i get home!
i think you need to contact your immo and see what antibiotics you may need for this infection - i know that's more difficult when you do home therapy. i do IVIG in clinic, so i feel very connected with my team, and usually get what i need straight away.
so, welcome once again, and hope to hear how you're getting on soon
take care - john

[bamber]

Hi thanks for timely reply. I see UKPIPS - but will this forum follow it? As for any society help in General. I think that was partly me. As nothing existed when I was a child. My mum never had advice. So I mainly got on without it - with varying degree's of success. If you ask you ask sometimes you do get get help - but if you soldier on. Who knows you need it?

A lot of my problems later on were psychophysical and struggling to deal with the work place due to illness etc. Nowadays if things are picked up as child you get help with transition to work and education (or you did before cuts - but another story).

I think I will need to see my G.P first and only problem is if its not one of two, they will not give me strong enough antibiotics. My immunologist is about an hour away and tend to see me once a year. I could phone them if I have problems - but its such a pain,best try G.P first. But maybe for once this may be viral and not be bad - unlikely I know. Definitely started viral - feel so weak. Thanks again.

[mali42]

Hi Bamber
Sorry you are feeling ill after your holiday,
I have antibiotics at home all the time for when I get an infection which makes all the difference to treating the infection quickly, maybe its worth discussing that with your immunologist and he/she can sort it with your doctor so you don't have to wait so long especially when your feeling ill.
Malcolm

[liz2mac]

Hi Bamber,
Welcome back, if you were a member of the HGG society in Manchester then we probably met when Alan & I first came up to meet you all in Hope Hospital. We were VERY unhappy when it became the PiA but.......lots of water since then and here we all are now.
OK. In my opinion (and I am a big mouth, as those who know me will agree! lol) seeing an immunologist once a year is nowhere near enough. You should be seeing your team once every three months. You should have high doses of antibiotics in your cupboard and a team on the end of the phone to tell you which ones to take. That is the sort of good practice that I aim to encourage our Dr's to provide for us.
Meanwhile, since we've nearly built Rome in a day, but not quite, here's what I would do if I were in your shoes.
I would go get myself a new Immunologist. As it so happens, there are two centres in Manchester. The one in the Hope and the other in Royal Manchester Infirmary. This one is headed up by Dr Matthew Helbert. He has another consultant working with him and a team of two nurse specialists. It works very well, I know as my son lives in Manchester and I get pneumonia when I was visiting him. I rang and was seen within two hours.
How do you transfer? Easy, you go to your G.P and ask him/her to refer you to Dr Helbert for a second opinion. If the GP asks why, explain that the new organisationUKPIPS has suggested it. I am quite happy for the G.P. to ring us and we will talk about good practice etc.
We only have one life and it's not fair if we feel kless well than we could do because we're not getting the medical care we deserve.
Ring me if you want to talk about it, the nubers on the website.
Liz

[bamber]

I wrote a long reply but decided it was too detailed and self indulgent. I think I have ignored the problems for so long and just gone along with everything. I did start at MRI in the 80's after being seen at local hospital as a child. But they eventually concentrated on Allergy's more and Hope had a larger pool of HGG patients - so advised to go there.

I am monitored OK. But due to new patients coming along all the time. They get the more intense help. I am an old soldier I think. Still I am out of work now and connected to the local Mental Health Team. I am sure long term rare health condition not helped. I don't want to case any fuss.

[liz2mac]

whoa there. On this forum we are all looking out for each other and understand exactly how bad some days can be and I mean can REALLY be. I think you'll be able to find postings where an awful lot of us have been brought to our knees by trying to live with this thing sometimes. OK, I'm going to say this load and clear to anybody who wants to hear it. I HAVE DEPRESSION. I don't just feel a bit low sometimes, there have been times when I have felt so low that I have actually worked out a fail safe way to end it all. There have been other times when I laugh, love and simply enjoy. Thankfully, so far, I've had the help that I needed, when I needed it, to get me through those "black dog days" as Winston Churchill called them, and able to enjoy the sunshine. To have the need to be detailed is not self indulgent, but a basic human longing to reach out to others who understand. If you would like to talk to me about this or anything else, message me on this site with your phone number and I'll get back to you. I see my pyschiatrist every three months. One of the classifications of specialist we are trying to get on our medical advisory panel is a pyschiatrist or pyschlologist. PID causes depression and dealing with it can at times be hell. We're all here for you Bamber.
liz

[mali42]

Nicely put Liz.
The Big D crops up regulaly on our forum and can be a big problem for most of us at some time, I have learnt to spot the signs when it creep up on me without me realising.
Malcolm

[dianesistern]

Hi Bamber i am in my 40 s too and was diagnosed when i was about twenty i am also connected to my local mental health team i suffer from stress anxiety, panic attacks and depression i am sure it is connected to cvid and i also have thrombocytopenia and every time i look at myself there are more bruises which is also depressing as well as fighting infection all the time. Diane

[liz2mac]

Do many of us bruise easily? I have heard that it is possible for people living with CVID to laso have probs with this. I'd be interested to have your views.
Liz