PCD Family Support Group (UK)
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Wife of a PCD sufferer

Hi, Im new to this forum but I was just wondering if there are any adults with PCD living in South West Wales. My husband is 35 and has PCD.

Thanks :)

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Hi - sorry don't know anyone specifically in the South West Wales area with PCD but happy to talk to you on here! Fiona

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HI Fiona, I think I spoken with you before, me and my family were going to attend the family day but my husband had sudamonus.

Paul has recently been prone to more infections and his breathing is getting a lot worse. He's had to cut down on his working hours and slow down in general but he's struggling with coming to terms with it, I'm trying my hardest to be supportive and understanding of it and I've tried to get him to speak to me, but him being a man's man says nothing is wrong!! People look at him and think he's fine and that theres nothing wrong with him and just say "aw he'll bounce back its just a cold/chest infection" and I just want to scream at them!! When Paul was 27 he had Pneumonia and was put in an induced coma for 3 weeks and he's never fully recovered from it, he says's that every time he has another infection and get's put on IV's its taken him longer and longer to bounce back.

Sorry for the venting its just so good to have someplace where I can talk to people who understand.

x

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Hi - sorry to hear that he isn't very well. Might be worth getting a referral to the Royal Brompton to see someone who sees a lot of PCD patients for a review of his treatment. Not sure how it would work in South Wales but worth asking GP or his respiratory consultant. I would also recommend a physiotherapy review ... sometimes a change in physio technique can really help. Happy to talk to you or get one of our adult PCD people to give you a call. our number is 0300 111 0122 - leave a message if necessary and we can call you back

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Hi,

I'm not from South Wales, but am an adult with PCD, quite a bit older than your husband.

I'm afraid that over the years I have had a few ups and downs, but I find that if I am really vigilant with my physio and avoiding those with coughs and colds as much as I can, without wrapping myself in cotton wool, then I have managed to improve how I feel. Exercise is one of the most important things I can do, which is especially difficult if feeling unwell, but little by little and doing a bit more each day then I am able to achieve more and more and start to find I begin to feel better and my breathing improves.

Another thing is to keep on top of infections and know when to step in with a visit to the GP to be tested whether antibiotics are needed. It's good to have a plan for when he begins to feel unwell, whether it be a call to the GP, hospital consultant, respiratory nurse or however things are done in your area. It seems to vary for all of us, depending on where we live.

As you mentioned, he looks well and this seems to be the case for many of us, even when struggling, everyone seems to say, "You look so well", I've even had doctors say it to me, but then when they check me out it 's another story. It does make it difficult for friends and family to fully understand how you are doing and that you may not always feel up to keeping up with everyone else.

As Fiona suggested, a review at the Brompton may help.

All the best to you both.

Terry

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Thank you so much for the reply. Paul has an appointment with his consultant this month and I have asked him to ask for a referral. He is doing exercise when he can as he says it does help, his GP gives Paul the medication he asks for, azythromycin, carbosistine, colymicin, nebules, mucodin, ventalin inhalers, and steroids as needed.He's also on nebuliser and oxygen - which he is relying on more and more these days. He has IV antibiotics in the home when he is really bad.

It's so hard to see him not being able to play with our son who is 4 like other dads do, football, running and so on and as much as he tries to keep up I know deep down hes upset and frustrated that he cant. I try to keep his spirits up but he wont talk to me and when i suggest that he talk with someone in the PCD group he gets defensive and says he dont need to talk to someone. I fear hes afraid to talk to someone, especially someone that is a little bit older than him and he comes face to face with the reality of what is going to happen as he gets older and his condition worsens.

Thank you for listening to me its so good to be able to talk to people that understand.

x

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It's interesting that you mention your four year old son. When I had my twin daughters, I was fine at first, apart from the lack of sleep, but it was once they started at nursery school that I found I went downhill for a time. I believe this was because they were catching all the usual bugs that children do and then I was catching them as well. I was in and out of hospital, needing IVs and treatments I had never needed before in my life.

What I can say now, is that I did get through that period, which I initially thought I was going to be like for ever and a day and I did manage to build myself up. I was able to do all the usual mummy things, taking them to swimming, dancing, brownies, having their little friends over, etc., something I had thought I would not be able to do at one point.

I think it is not so unusual for your husband to not want to talk to other PCDers, we have found we have few adult males in the PCD group compared to females, it just seems not so many men 'do' support groups. It's a shame because I'm sure they would get quite a bit out of it, even if it's only to know, that others know how they feel. I also know how difficult it can be to be the wife, as my husband is a terrible 'patient'!!

As I mentioned previously, I have had my downs, but each time things have eventually turned around for me. I have been through a Pulmonary Rehabilitation programme a couple of times, the Brompton physio team gave me some great exercises to follow at home and which you build up on, I definitely think they made a difference. Maybe you could see if there is something similar available where you live, it's always worth a shot.

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I am a PCD Wife too and what you are saying sounds very familiar to me! My husband doesn't want to talk to anyone either, I think it upsets him facing the feelings that he tries to suppress. It's hard for us to be always supportive, encouraging, and patient. I try to use humor as much as I can, and try not to tell him what to do all the time :) I'm probably successful only half the time, but I'm trying to do better! But it's good to share here because people on this forum really hear you like no one else. You and your husband are in my thoughts!

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Hi

I am an adult with PCD. I was referred to the Brompton in my late 20's when I was having recurring infections and constantly on antibiotics. I was living near Southampton at the time. I live near Oxford now but I still make the journey twice yearly to London. They are excellent and always at the end of a phone call if I am worried about anything or not sure if my GP is giving me the correct treatment.

I can reiterate with Terry on the childhood infections. I have one child who is 20 now but all through primary school he often came home with a niggle of a cold which would last a day and then I would get an infection and have it last a couple of weeks ending up on antibiotics, steroids etc. It does get easier when they get older and I do try and avoid people at work or friends/family if they say they have a cold.

I brought my son up on my own and where football and sports were concerned I would let other families help out and in return I would take their children swimming, which was something I knew I could do. I do understand though that it is harder for a man. I think women find it easier to talk to other people and to accept support when it is needed.

As well as the physio, which is a must, I have found exercise to be very good at moving things around. I walk a lot and swim. Some days I find it relatively easy and then some days it is a struggle. I have learnt to accept that there is no consistency. On a good day I just do more than a bad day.

Living with PCD has its own challenges but, saying that, with the best advice and treatment plan you can lead quite an active life. I am in my 50's now and do get very tired but am relatively well. I recognise my symptoms and understand at what stage I need to start taking antibiotics or to increase my physio.

Hopefully you will both get some reassurance from the replies on this forum and that your husband gets the support from his Consultant.

X

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