Posts - PCD Family Support Group (UK) | HealthUnlocked

PCD Family Support Group (UK)

618 members•302 posts

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Mistake with grommets

Hi I am 56 and been off work since January with complications with PCD. One has been extreme vertigo and blocked Eustachian tubes. In May, a local ENT...

Hi I am 56 and been off work since January with complications with PCD. One ha...

•3 months ago

Glue ear leaking

Hi,I have glue ear in my left ear, for quite a while it has been oozing a thick fluid, I have had 2 courses of antibiotics over the past 6 or 7 months, it...

Hi,I have glue ear in my left ear, for quite a while it has been oozing a thick...

•1 year ago

Advice on Dextrocardia standard checks

Hello, and thanks in advance for any assistance. A long time ago now, we were lucky enough to have a little girl with Dextrocardia situs solitus and no other...

Hello, and thanks in advance for any assistance. A long time ago now, we were l...

•2 years ago

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My Mother, part 2, 2000

My mother was one of 15 centenarians invited in year 2000 to St Paul’s for Queen Mother’s 100 birthday service. We had to be seated by 10.30, an hour before...

My mother was one of 15 centenarians invited in year 2000 to St Paul’s for Queen...

•2 years ago

Pregnancy and childbirth modality

Hi everyone, I'm Ana Carolina from Brazil and I have a doubt: anyone with PCD did vaginal childbirth or necessary was recomended th Cesarean section? My...

Hi everyone, I'm Ana Carolina from Brazil and I have a doubt: anyone with PCD di...

•2 years ago

Breathlessness

Hi, For the past few days I have been extremely breathless, the doctor is treating me for a chest infection even though I have no other symptoms. I am sure...

Hi, For the past few days I have been extremely breathless, the doctor is treati...

•2 years ago

Azithromycin and Group Practices

My Consultant knows that I’ve had bad infected two years. Now I’ve got rid of pseudomonas again she has put me on one Azithromycin every day. One GP I’ve...

My Consultant knows that I’ve had bad infected two years. Now I’ve got rid of ps...

•2 years ago

Adults with PCD & hearing issues

Does anyone here (adults) with PCD have trouble with their ears? I had grommets when I was much younger and used to hear ok-ish! But the last few years my...

Does anyone here (adults) with PCD have trouble with their ears? I had grommet...

•2 years ago

Question about communities from an outsider

Hello, Other than this forum, what 'communities' (forums, chat groups, meetups) or community groups do you use in regard to PCD? Many thanks, G

Hello, Other than this forum, what 'communities' (forums, chat groups, meetups)...

•2 years ago

URGENT Pneumonia

does anyone worry about flying with PCD? i have pneumonia right now. Do you think it is safe to take a 3 hour flight? I am on antibiotics but still not 100%...

does anyone worry about flying with PCD? i have pneumonia right now. Do you thin...

•2 years ago

post nasal drip

has anyone heard of post nasal drip? I have it and it’s severe on off all day and before going to sleep. It’s awful. Just wondering, if anyone can give me...

has anyone heard of post nasal drip? I have it and it’s severe on off all day an...

•2 years ago

RSPH4a Radial spoke

Good evening. Does anyone have mutations in the RSPH4a gene? I would like to hear experiences.

Good evening. Does anyone have mutations in the RSPH4a gene? I would like to hea...

•2 years ago

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I.v. antibiotics administered at home

I’m going to QE Hospital Birmingham tomorrow to be set up for Two i.v. Antibiotics to be administered at home by specialist district nurses. Haven’t had I.v....

I’m going to QE Hospital Birmingham tomorrow to be set up for Two i.v. Antibioti...

•2 years ago

Pcd and Ataluren

Good evening.I read about research on the use of the drug Ataluren for the treatment of PCD, a case of point mutations. Does anyone know something about it?

Good evening.I read about research on the use of the drug Ataluren for the treat...

•3 years ago

4th jab

I’ve had letter telling me to book 4th jab. As I’m having a nurse come to my home this week to take blood sample, I’ve asked surgery for the jab to be done at...

I’ve had letter telling me to book 4th jab. As I’m having a nurse come to my ho...

•3 years ago

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Spring Booster

Does anyone know yet if we are included in the group that will be having this booster? It says those 75+ and immunosuppressed then on website those at high...

Does anyone know yet if we are included in the group that will be having this bo...

•3 years ago

Stopping Azithromycin after 25 years

Anyone else been told to stop their alternate day dose of Azithromycin due to colonisation of Mycobacterium Abscessus in the lungs? I stopped taking it 14...

Anyone else been told to stop their alternate day dose of Azithromycin due to co...

•3 years ago

Pcd and parents

Hello Everyone. My daughter was diagnosed with PCD half a year ago. Since then, with inhalations and physiotherapy, she is much better. Still, I keep thinking...

Hello Everyone. My daughter was diagnosed with PCD half a year ago. Since then, ...

•3 years ago

Lung infection

Hi, can a lung infection go on from 2020 to date? I have a face to face with Brompton on the 2 March 2022. A&E have said it’s lung infection, I have been...

Hi, can a lung infection go on from 2020 to date? I have a face to face with Bro...

•3 years ago

Covid

Good evening. Husband and I had Covid 7 days ago, now we are negative. Our daughter has PCD, this morning the home test was positive, after 15 minutes the...

Good evening. Husband and I had Covid 7 days ago, now we are negative. Our daugh...

•3 years ago

Appointment with Brompton hospital london

Hi, I have an video appointment on Monday with Brompton. Are they good? Are the consultants highly trained? Thank you

Hi, I have an video appointment on Monday with Brompton. Are they good? Are the...

•3 years ago

PCD

Is this a considered to be a serious illness?

Is this a considered to be a serious illness?

•3 years ago

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PCD

What does PCD stand for? Thank you

What does PCD stand for? Thank you

•3 years ago

Hello, I’m new here my Name is nicola

I will have to start taking azithromycin 3 times a week as I have had 5 chest infections last year and twice ended up in hospital stay. The antibiotics did...

I will have to start taking azithromycin 3 times a week as I have had 5 chest in...

•3 years ago

HAPPIER NEW YEAR. to everyone

Let up hope and pray that 2022 will be better than last year

Let up hope and pray that 2022 will be better than last year

•3 years ago

NHS PCD Service Specification

Could I ask if members of this forum are receiving the services specified, wherever they live. I’m 86, was diagnosed when 32, have never received any of the...

Could I ask if members of this forum are receiving the services specified, where...

•3 years ago

PCD poem

Cilia, little hairs, you are so important Little hairs why don’t you move There’s many lives you could have saved If you could properly move Our lives would...

Cilia, little hairs, you are so important Little hairs why don’t you move Ther...

•3 years ago

Azithomycin

I read that some with PCD are on constant 3 day courses of azithomycin. Do you ha ve gaps in this treatment, I.e. 3 days, then few days off. I’ve been on...

I read that some with PCD are on constant 3 day courses of azithomycin. Do you ...

•3 years ago

Has anyone had problems booking a 3rd vaccination or a booster? Apparantly I am not ' eligible' but have PCD!

Has anyone had problems booking a 3rd vaccination or a booster? Apparantly I am not ' eligible' for the booster even though I received an email to book it and...

Has anyone had problems booking a 3rd vaccination or a booster? Apparantly I am ...

•3 years ago

Pcd rsph4a compound heterozygosity

Hello. My daughter is 2 years and 4 months old and genetic testing has determined that she has 2 heterozygous mutations in the Rsph4a gene, diagnosed with Pcd....

Hello. My daughter is 2 years and 4 months old and genetic testing has determine...

•3 years ago

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