A: Hi My Name Is Alice I Have a Baby... - PCD Family Suppor...

PCD Family Support Group (UK)

520 members253 posts

A

Elizabetg
Elizabetg

Hi My Name Is Alice I Have a Baby 9 Months Old Her Name Is Mary When She Was Born They Told Me Her Heart was On The Right Side Instead Of The Left She went For A Test when she was 3 Months old Nasal Brushing For Pcd I found Out yesterday she Was Confirmed With Pcd I'm A first Time Mum I'm 20 Years old Btw And I dont know Much About It I want Yo Hear Your Stories What Its Like To Live with pcd

3 Replies
oldestnewest

Hi Alice, welcome to the PCD family. My daughter is now 5 and like Mary was tested and diagnosed with PCD as her heart was on the right side. We are in Ireland so Erin's treatment may be slightly different to what Mary will receive but for us, Erin uses a nebuliser morning and night followed by physio and takes a preventative antibiotic 3 times a week. This is now just part of her daily life and is the norm for her. Apart from that she is a typical 5 year old, she loves singing, dancing, playing with her older brother and is a real dare devil! I hope you enjoy your first Christmas with your daughter. Merry Christmas.

Hi Alice (great name!)

I am 30 and only got diagnosed with PCD at 25. I also have situs invertus, so complete reversal of organs. My main issues growing up was having blocked sinuses and being a mouth breather. I sometimes found physical exercise (aerobic) quite tricky in Pe lessons and things and found an inhaler relieved things but it has never stopped me doing anything. I have always been very active and played women’s contact rugby for 2 years a couple of years back as scrum half so lots of running around. I am a full time teacher and manage to keep fairly well considering. I have this year had a chest infection which needed quite a lot of antibiotic treatment but apart from that, I do do respiratory physio (breathing strategies) each day to clear mucus from my chest and I have begun using a nebuliser daily to help loosen things up as well as an inhaler morning and evening to help ease airways.

For me, it has not been debilitating at all. Yes, sometimes I find aerobic exercise harder and I’m always blowing my nose but with regular physio and chest clearance, I’m well and healthy. I hope this helps gives you a longer term perspective on things. However, I am very aware that, like most things, PCD is on a scale so I may be a luckier one. I hope you’re daughter grows up healthy and strong. Alice xx

Alice,

I have situs inversus dextrocardia as well. I am just being tested for PCD and have confirmed mild bronchiectasis. Like you, I have been blessed to have a relative normal life … until last year. When sinus infections became more constant and cough attacks wouldn't stop.

Do you find you have body aches? I suffer from really bad lower back pain and what one doctor called Bertollotti syndrome … might be connected to SID (Situs inversus dextrocardia).

Any light headedness? Nausea ?Vision changes ?

Mash

You may also like...