Just diagnosed CVID please help me understand?

[liz2mac]

Hi Ronnie, how are you doing? The advice I was given for you was to get yourself to an Immunologist, which pretty much sums up what we said I guess. I do hope you're doing ok. Let us know how you are?
Liz.

[justacarer]

I feel a bit of a fraud signing up to this forum 'cos I don't have any immunity issues - as far as I know!
So, the best I can claim is that I'm a carer - as my wife 'has it' and I'm finding it very difficult to get information out of the 'average' doctor about primary immunodeficiency. The ones I've met so far seem to suffer from a rapid glazing of the eyes and leave me with the distinct impression that I may know more about this disorder (having seen it affect her in many different ways) than they do? All this is probably highly unlikely, so I'm hoping that by joining here I'm going to be able to pick up meaningful and relevant info that will clear some of my current confusions. So, if it's all OK with y'all, can I just sit on the touchline and watch the cyber traffic going back and forth? Cheers, Charlie

[slf]

Hi Charlie< I am so glad you found us,please don't feel any guilt about being a carer,more right as you chose us and weren't chosen.
As you will have seen from the above advice,it is so important to see an Immunologist,most other doctors wont have heard of you're wife's condition,I was staggered the other day that my dentist even had the faintest idea,very impressive! Take your main advice from the immunologist,but hopefully what you find here can help fill those worrying gaps in knowledge.
Please don't be afraid to ask,and relay your own experiences
Take care
Steve

[john]

hi charlie,
welcome to our forum, it's for ANYONE involved with pid, and that includes you as a husband and as a carer.
i have been afflicted with pid for many years now and i don't know what i would have done without the care and support of my wife.
often i hear of partners who are not supportive, and that distresses me, because although we have our immunologists and our medical teams, they are there by appointment, but our partners are there 24/7, and always when we need them most.
so no more "just", but more "the main" carer!
feel free to ask absolutely anything you want of us. someone somewhere will have had the experience to guide you to ask the right questions of the medics you and your wife see.
take care and thanks for joining us - john

[ronnie]

Hello everyone it's ronnie. I'm so sorry I haven't posted anything re my progress I've been very busy...my 5 year old started school! (Yes I cried!). My doctor has organised for me to have IVIG.....today! I actually have to leave in about 5 minutes for the infusion. Terrified doesn't even begin to describe what I'm feeling! I really appreciate having met you all on here and I will definately update you, hopefully tonight on what has gone on.

Thank-you so much for your enquiry Liz. I'll talk to you all soon.
Ronnie.

[mali42]

Hi Ronnie
I felt the same way on the day of my first infusion 7 years ago and it took ages to set me up which didn't help, I hope it went well but remember its still early days and will take a while to fully feel the benefits,

Charlie,
That goes for me too, your more than welcome here and ask away,
Malcolm

[dianesistern]

Hi Ronnie re your first post i have 3 children i was worried about having the ivig during pregnancy one dr told me to stop it but my immunospecialist at the time said no carry on with it and as i got more heavily pregnant to have even more to take into account the weight gain, i went with what he said he was the expert i had normal pregnancies apart from this and gave birth two 3 healthy children now 23, 20, and 15 who are regularly checked with blood tests to see if they have inherited the cvid because my dad sister and cousin also have it . Diane

[kerryspence]

Hi, i would like to talk to u about this, I have just had my second child and have been recieving treatment for cvid for 2 years, I know what u are going through and would l9ve to talk privately. IF you would like this please email me- (deleted by moderator) thanks kerry

[bamber]

Just a gentle reminder please don't give out E-mail by public post as you can put yourself open to any one. Please use the PM system.

[bamber]

Kerry/ and Ronnie (who I hope is still about)

I have two children 9 and 17 and have been diagnosed with CVID for the last 37 years (I am 47) I have received treatment all that time and through both pregnancies like Diane.

Please Kerry Keep posting I hope you are OK.

[dianesistern]

Hi Ronnie, i have had ivig whilst pregnant and the pregnancy birth and baby were fine my amounts of ivig where raised while i was pregnant to take into account of the growing baby, i also have low platelet count and clotting problems, i was diagnosed with thrombocytopenia(low platelets) before the cvid, i have 3 children all grown up the youngest being 16 and expecting a baby so we are looking at hereditary factors again, being pregnant is always an emotional time and you have extra concerns which hopefully this forum can help you with Diane

[liz2mac]

Hi Ronnie, hope your infusion went well and that you will slowly begin to feel the benfits. It does take time, as everyone has said, but I am sure that you will be amazed at ho much better you will feel after a few months.
Charlie, we are very aware of the needs of our Carers at UKPIPS, as John has said, we'd be in a pretty poor way without you all and I know that there must be times when the frustration of having to cancel yet another social engagement as illness gets in the way must be very draining. Then there is the issue of nobody understanding, not family, not friends, not Doctors. I'd very much like to put together a "welcome" and "information" leaflet to go on the website for Carers of PAD /PID patients. This can involve partners, adult children, parents or even young carers. If anyone is willing to help me with this, please either contact me on the UKPIPS email address ('A PID Organisations Email') or else send me a private message on the forum.
Liz