Common variable immune deficiency

[BP135]

After having my antibody levels tested for haemophilius influenzae a few months ago, I got a call from my respiratory cons yesterday to say levels are low and she thinks I have CVID.

Shes sending me blood forms to check my antibodies against other bugs. Also asking my gp to give me the hib vaccine again then re test blood in a few weeks to see if I've built up more antibodies.

I've been doing lots of reading online to find out more. Which is probably not the best idea!

After 3.5years of endless chest infections I feel relieved to be finally getting somewhere. I always suspected bronchiectasis, and now I've been told I have it mildly. I feel positive that its been caught early and theres treatment for the CVID...not that I am looking forward to many plasma infusions. Its hard enough fitting 4 days a week of work around a 4 year old and 19month old without throwing more hospital appointments in. But I just have to be grateful for treatment.

Im also worrying about my little one as always because her eczema is out of control, I've been told since i was pregnant that they suspect she has polycystic kidney disease like her dad. And now seeing that CVID can have links to allergies and can be inherited. Little one has 8 food allergies and counting. Shes a constant source of worry for me.

I don't really have any questions, just looking for somewhere to vent where people understand.

Hope everyone is well.

Becky xx

[sassy59]

You’re in my thoughts Becky as you have such a lot to deal with. I hope you and your little girl will get all the medical help needed and that things will improve for you.

Take care and stay safe. Hugs.

Carole xxxxx

[BP135 in reply to sassy59]

Thank you Carole xx

[tomc]

Life sometimes can be a total pain but there are people hear that will Listen and sympathise with you.

I hope things will improve for you and the wee one.

Take care of yourself and your family.

[BP135 in reply to tomc]

Thank you tomc xx

[cofdrop-UK]

Vent away Becky. You have a lot on your plate and we do understand. You may not have questions now but if and when you do please don’t hesitate to ask. There will always be someone around happy with the info or support.

Love cx

[BP135 in reply to cofdrop-UK]

Thank you cofdrop x

[madonbrew]

Aww it sounds like you have lots going on! It’s hard when you have lots going on for yourself, let alone when you have a little person with lots of allergies too 😢 and two little ones to look after.

Sending hugs 🤗 to you

[BP135 in reply to madonbrew]

Thank you madonbrew x

[HighGables]

You’ve a lot going on Becky and your understandingly stressed. Everyone is here to listen, anytime. Stay strong your doing well. Jax. x

[Izb1]

Really feel for you Becky, such a worry looking after two children with problems let alone your own illness. Vent as much as you want, we are always here to listen. Thinking of you x

[Alberta56]

Hello Becky, I find mild bronchiectasis liveable with, most of the time. Hope you do too. Skin troubles are a pain- they seem to take forever to improve, but I hope your little one starts to get better soon. Best wishes to all of you. xx

[sassierbint]

Hi Becky. You have so much going in it can sometimes become overwhelming. I like you suffered years of chest infections. I probably started heavily with them in my early 30's. Doctor would give me 1 antibiotic after another to try and clear it. Eventually they put it down to asthma. I had joint pains and just body pains that would leave me laid up for days. When I hit 46 I finally got got referral for Rheumatology and they use to xray me saying my hands, feet, hips and knees weren't showing any signs of deterioration and discharged me. It got that bad that they re referred me a d he noticed my bloods hadn't really been right since I was very first seen. He monitored me and eventually sent me over to immunology. My daughter suffered exactly the same and she was also referred over. My 1st meeting with the immunologist she asked if anyone in the family was having immune problems, as soon as she pulled my daughters results up she knew straight away it wasn't right. Our results mirrored each other. We were jabbed and prodded, had pictures took of joints and our bad psoriasis. Out body's mimicked a good reaction to flu jabs etc and so we couldn't be considered for treatment. Our immunologist pushed for over a year and finally in 2018 we had genetic testing done. We started treatment in December 2019 on immunoglobulin therapy. I had a rough ride but y daughter settled into her 1st product. I am on my 4th and settled into home therapy. It does feel very intrusive and overwhelming in the beginning but it does help to deter any infections. Don't get me wrong you still get them but having that boost to your immune system really helps. I was constantly going to my doctors with ailments galore and you just know they are looking at you like, oh she's here again. When your suffering you want someone to try and join the dots. Unfortunately most doctors have never heard of it. It's usually Rheumatology or respiratory clinic that clicks on to it. I know it's so much for you to take in and u apogee for the long post buy if you need to ask anything then just ask away. It's extremely hard to fit everything around work at the best of times and you have little ones too. I really hope they get you sorted and try not to worry too much about the treatment. They will know exactly how many times you need to go. It's a lifelong treatment. My daughter goes weekly and has IV, unfortunately my body rejected 2 IV products and a sub cut product. I finally in Oct 2020 settled on to a new sub cut product and I now administer it weekly from home. I will be thinking about you hunni. Sending hugs.

[BP135]

Hi. Thank you so much for your reply, thats really interesting that you and your daughter mirrored each other. That's my fear for my little Adelin.

My next appointment with respiratory is 23rd march. She will tell me my results then so I'm assuming if any other antibody levels are low I will get referred to an immunologist. Looking online I think my nearest is kings. About an hours drive but I assume the IV is done at the local hospital. I do have so many questions but I will wait and see what my results are before I bombard you!

As you said, it feels like the dots are finally starting to join up. Which is reassuring in some ways but definitely overwhelming. The waiting for results between appointments is excruciating. Im so impatient!

My GP is ordering an adult hib vaccine in for me next week to see if that gives me a boost. The waiting game continues...

I will keep you posted. Glad you have finally settled on your treatment. Fingers crossed it keeps you well..ish! xx

[BP135 in reply to BP135]

I also have my covid jab booked in next week!