PCD Family Support Group (UK)

Pregnant!

We recently had a bit of shock and found out we are expecting a baby. It's very early days and we have an early scan booked next week as I'm concerned about ectopic pregnancy although Dr didn't seem too concerned.

In the hope that the pregnancy goes ok and we have a baby at the end..... are there any others on the forum with PCD who have had a baby and how did you find being pregnant? How did you manage physio and medication? I'm only on inhalers at the moment and antibiotics when needed, my PCD is very much under control but I still feel the impact of it every day and certainly over the last few weeks I've been more breathless. I'm a bit worried about how I'll manage physio when I'm "bigger", especially as I'm already finding just walking the dog a bit slower already so exercise is obviously going to be affected as well.

Thanks in advance.

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Congratulations! Probably worth getting an appointment with a pcd physio to give you some advice. Hopefully some of the other pcd mums can give you some advice. Keep us posted!! Xxx

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Thank you. Was a bit of a shock after 10 years of nothing!

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😁

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Hi Emma, I have PCD and have 2 children, now 29 and 32. My pregnancy was OK, I did get breathless and lying with my head lower than my hips for physio became uncomfortable. These days a physio can show you how to do autogenic drainage, where you can sit up and by a breathing technique clear your lungs.

Fionacc's advice is good, get a PCD physio to help.

I was given a prophylactic antibiotic injection when I gave birth, and the births were normal.

So congratulations! Accept any offers of help with housework you can get and keep moving gently and doing physio any way that works.

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Thank you Sylviejp. I will be under consultant led care and see the consultant in a few weeks so I'll ask for a physio referral when I see them.

Did you find it more difficukt in your second pregnancy when you already had a toddler? We have a 2.5yr old who is a little whirlwind and it's exhausting already!

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Well my toddler still had a nap after lunch so I had a bit of time then for physio, and then in the evening. I had not been diagnosed with PCD at that point, just told I had Kartagener's syndrome so needed to keep my chest clear.

Household cleaning was low on the agenda, But we got through! I am sure you'll be fine, just sit down when you can!

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Hello Emma

Many congratulations on your pregnancy.

I was fine during my pregnancy, at the time I had not been diagnosed with PCD, as far as I knew I had bronchiectasis and this was the cause of all my related problems. I was finally diagnosed with PCD when my daughters were around 2 years old.

I was admitted to hospital in the latter stages of the pregnancy, but this was more to do with the fact I was carrying twins (in fact I was in with a couple of other twin mums, so it is not so unusual). I was similar to you, in that I was only on inhalers, although I did need one course of antibiotics for a chest infection during my pregnancy.

Towards the end, I had a problem laying down flat on my back. So the physios helped teach me some ways of doing physio in a semi propped position. I would say physio was more of a problem for me after my girls were born, as I had a Caesarian and it hurt to cough and huff. Once you have your baby, you have to try and find time to do your physio, such as during nap time, not always easy when all you feel like doing is taking a nap yourself!

This seems to be an area where there is no information about, whilst there is information for parents who have a PCD child, I've never seen anything for PCD adults who have children, with advice on looking after your children, whilst looking after yourself, especially when you are feeling unwell, or even worse when they are poorly and so are you.

I wish you well during your pregnancy. Keep us posted.

Terry

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Thanks Terry, that's all good to know. I will keep you all posted!

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I was able to do my chest physiotherapy up untill the day I gave birth. Rest as much as you can and take care of yourself while pregnant and congradulation.

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Thank you all for replies. Had an early scan this week and I'm just coming up to 8 weeks so still a long way to go but we got to see a little heartbeat, it was fantastic. I've had my first midwife appointment and will see consultant in NY after 1w week scan if all is well.

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Just an update-now 13 weeks and things seem to be going ok although having some further tests as our Downs markers came back a bit high. Should know results by end of next week. My asthma/breathing has been awful, I cough so much and coughing fits make me throw up which is fun! Just waiting on consultant appointment which I'm told should come through this week. All very real now.....

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Congratulations Emma ! I hope it all goes well for you x keep us updated x

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