Sunday 13 November 2011

PCD is here to stay

I think I may have underestimated PCD.

For two reasons really. 

1)  I assumed that nothing would be as bad as heart disease.

2)  I was very naive.

All of a sudden this deadly disease has reared its ugly head.

I was told by someone at some point to not look on the internet into the problems Georgia has.  This was probably the worst advice.  I wish I had looked.  I would have understood what the diagnosis of PCD meant for her quality of life and it would not have been such a shock when she became ill.

We have a visitor.  Pseudomonas.

This horrid little bacteria has set up home in Georgia's lungs and decided to make itself known to us via a cough swab she had done.

I was so shocked.  She had a little bit of a cough and was generally unwell but I didn't for a second think it was anything but being a little under the weather.  Note to self - she will never be just a little under the weather.  When she gets ill, she is really ill.

I would imagine this little bacteria has come from Josh being at pre school and bringing it home.  Mainly as Georgia has not really been out.  Now it has turned to winter we don't take her out for long amounts of time.  So all you mummies and daddies out there that send your kids to school when they are feeling ill, remember that they could be spreading those germs to poorly kids like Georgia!

So now we are on a course of oral antibiotics, not nice ones either!  This is the start of our battle against the pseudo that has taken up residence.  After the course we will have another cough swab done to see if we have won or not.  If not, off to hospital we go for IV antibiotics.  Anything to blast this little bugger away.

This is my first meeting of this particular bug, from what I have read it seems to be a tricky one to get rid of. 

All of a sudden I am more scared by PCD than I ever was of the heart problem.  She is going to be coping with this for the rest of her life.  There is no surgical fix like there is for her heart.  That's frightening.

I know you are all going to say that it wasn't but I feel like this was totally my fault for not being more forceful with physio.  So I have morphed into 'mean mum'.  She may not like it, she may scream and hit and kick but it is for her own good. 

I keep hearing from everyone that it will get easier. WHEN??????

So far every physio leaves us all exhausted, physically and emotionally.   I know it is just something we have to do.  I just wish I didn't have to fight her all the time to make her better.

Safe to say I am having a hard time with PCD at the mo.

It took so long to get a diagnosis for it, I really didn't understand the implications.  Even when she was diagnosed I just shrugged and said 'oh well, just another thing for her to battle'.  I didn't know.

Sometimes I feel really stupid. 

I don't know if anyone else feels this way.  Her respiratory team are fantastic but are miles away.  If it is anything urgent I have to go to our local hospital.  I have taken to carrying around the PCD leaflet, I am so fed up with explaining what it is. After reading it people just seem to underestimate the condition.  I told one particular doctor it is a chronic lung disease and she looked at me as though I was crazy.  I suppose that as she had not heard of it, I must be lying.

You say Cystic Fybrosis, people know exactly what you mean.  Everyone has heard of it.  Mention PCD they think you are talking about the Pussycat Dolls.  Its so frustrating.

Anyway, sorry about the rant.  I am only just discovering the wonders of PCD myself, it sucks.

On a lighter note Georgia has finally started forming words.  'Hello' is a favourite.  She also has become very artistic, she loves colouring in the walls!  Best not link my landlord to this blog now!

3 comments:

  1. Hi Kate

    I know exactly how you feel. After Soph appeared to be on the road to recovery after her TOF/OA repair, bam we were hit with her CF diagnosis.

    Thinking back I think we went through a period of grieving and coming to terms with everything that had hit us.
    I'll never ever be content with CF but we no longer allow it to rule our life or turn me into a jibbering wreck.

    I guess we've just become stronger and I know you will become like this regarding PCD.

    Pseudomonas is the bug that Sophie is colonised with and we know it very well so if there is anything you want to know please ask us.
    In regards to where Georgia picked it up, it's unlikely it is from your son. Pseudo is everywhere literally and also very prominent in hospitals. It is only bothersome to those with lung disease and low immune systems.

    There are a few things you can do to minimise exposure but in reality, it's impossible to hide from. What you need to focus on is getting out of Georgia before it has chance to set up home and there are a number of treatments available but her respiratory specialist should be able to help. If she doesn't have a CF consultant involved in some way it may be worth asking whoever deals with her respiratory side to liase with one as treatment will be identical to that in CF care.

    Hugs to you, you are coping so well and I didn't say last time, your children are gorgeous :)

    Take care xxx

    ReplyDelete
  2. Hi

    My 8 year old son Finn has PCD (diagnosed at 2 1/2)and very unpredictable asthma so I know exactly how you feel about it. Things are bad when they are as little as your daughter but it does get better - maybe never "normal" life, but normal for them.

    Finn was constantly in and out of the hospital for the first 4 or 5 years, with many a blue-light ambulance trip. Now he's in his 4th year of primary school and is doing good. During the summer months he was able to do a lot of swimming, hillwalking, trampolining etc, even though he was in and out of hospital with quite a few chest infections. Now thats its winter he's struggling a bit but noweher near as badly as he would have done a few years ago. Its now a couple of months since he's been in hospital which is great so fingers crossed he will make it to Christmas without another admission.

    Finn's medical team are great. He has a great consultant, who works as a team with his respiratory nurse and his respiratory physiotherapist and they are all only a phone call away. He has open access to the paediatric ward and tends to go there with every cold/green gunk etc, avoiding the endless GP visits. His school are great too and happily carry out a physio session every day - I think Finn loves the extra attention this gives him! All the staff are great at keeping an eye on him in case he is over-tired or starting to "brew" something.

    Finn copes great with his condition and never asks "why me?". He just gets on with things and makes the most of the energy he does have. His school attendance is over 90% and he loves running about with his 3 brothers and his sister. He knows that physio and physical activity, as well as all the medication he is on, are needed to keep him healthy and, since its all he's ever known, it all seems normal to him. He looks the picture of health and doesnt let it stop him in any way. Hope this helps a bit.

    Regards

    Angela

    ReplyDelete
  3. Hi Angela, Thanks for the info. It sounds as though your son is doing really well. Its great to hear as now I can see a little light at the end of the tunnel. Maybe Georgia will get better as she gets older. I just wanted to ask you about your other children. Do any of them have PCD? Is finn your youngest? I only ask as our eldest Josh has no medical problems at all. We have been to see a genticist and they have said we have a 1 in 4 chance of having another child with PCD. Although the PCD is managable I worry that the heart problems may happen again too as it was due to PCD that her heart developed the wrong way. Georgia's heart condition was not as bad as it could have been and I worry we might not be so lucky next time. Was she just a one off???? I hope so, we do want more children. Anyway hope Finn is doing great. x x x

    ReplyDelete