the right specialist

[kareniliff2002]

I am currently under Dr Jones in Wythenshawe Hospital in Manchester, I end up seeing different doctors every time I go. To be honest I really don't think they know or understand what PCD is and what treatment is needed. I went in January after suffering with pneumonia and pleurisy. I told them I still didn't feel like I was back to normal for me and all they did was send me for an xray and booked a further appointment in 4 months time. I have since been off work again with pleurisy and even ended up going to A&E in Bolton on one day as I was having chest pains, palpitations and really struggling breathing. They did some tests and then just got sent home and told to rest.

I don't feel I am getting the right care at the moment, I know PCD isnt curable. Can anyone please tell me if you live in the north West who you see and what they do for you in your treatment plan. I appreciate this is personal but any help would really help me understand what else I can do to keep the condition under control as much as possible.

Thank You xx

[PetraK]

I know I live in Canada, but here is what I have learned over the past few months. From connecting with this site my most affective change to my plan has been to go for Chest Physio- that has allowed me to get mucus up and help clear out my lungs. I also take a supplement R-NAC from the health food shop here in Canada that has reduced my coughing and helps with mucus too. I live with H Flu and at this point only take antibiotics when I am really sick after giving a spit test to ensure they give me the correct anti biotic as I am already resistant to one. I also have a device to help my body try to get mucus up and also get in different postural drainage positions (basically head lower than rest of body) to help too.

I also try to keep fit as I understand being fitter gives the body more to work with when you get sick.Not always possible as I find myself getting more tired. I am sure others in England will give you lots of advice as they have given me. This forum has been invaluable to me.

[fcfilice in reply to PetraK]

Does R-NAC suppress the cough reflex or thin out mucus, if so are you still able to forcefully cough out mucus with postural drainage

[PetraK in reply to fcfilice]

Here is a link about it;

life-enhancement.com/magazi...

I know that I do not cough very much since taking it. I still cannot often expel mucus so the lung flute or chest Physio with postural drainage that has helped me to get the mucus up and out of the body.

I finally saw a great new Specialist in Vancouver yesterday who explained the condition more, and said I need to be using a stronger saline solution daily and I will be seeing a different Physio in April to get a PEP mask set up for me. Thank you to this group the things I have put in place have been the right things and now it is fine tuning them.

I was told that in Canada the vest costs $10 000 and is not an option.

The new specialist also said to continue to get sputum tests for the correct antibiotics when I get an infection, but as I have mentioned in another post I live with H flu. He also said I should be tested at least 4 times a year to see if something has changed too- so a little more of a shift on pro active.

I hope that helps.

This group has been so great to be a part of- thank you!

[Rach29]

Hi,

I currently attend Liverpool heart and chest hospital. I am treated by the cystic fibrosis team and would say overall the treatment and I care I receive is good. I see my consultant every two months and I take antibiotics all the time and various other medications as well as regular physio which helps manage my symptoms. When I become ill I can always get an appointment within the week. When I get ill I will also see my consultant more regularly. I have a lung function test and sputum samples each time I attend clinic.

It might be worth getting in touch with one of the specialist PCD centres, maybe getting an appointment to what their opinion is.

Hope this helps

[fionac66]

Hi Karen

I am sorry that you haven't been well. I would recommend that you get an appointment at one of the PCD Centres for an MOT/Second opinion. Dr. Loebinger at the Brompton, Dr. Carroll at Southampton, Dr. Peckham at Leeds or Dr. Range at Leicester - appreciate that this is a long way to go but think it might be worth it. This can be done by referral by your GP.

In the meantime I would get a sputum sample off - sounds to me like you may have an underlying chest infection that hasn't cleared up properly. If they discover something make sure they give you two weeks of antibiotics too.

We are hoping to have a proper adult service from April this year - still waiting for confirmation from the NHS .... so watch our website for details. pcdsupport.org.uk

Hope this helps.

Fiona

CHair of PCD Family SUpport Group

[shelleymash]

Hi, there's a PCD centre in Glasgow were I take my daughter. Glasgow is probably closer to Manchester. We see Dr. Anne Devenny every 3 months atm and have a lung function test each time.

Hope this helps.

[Lizmcg0]

Karen I too see Dr Jones at Wythenshawe but I've recently asked my go for a referral to the Royal Brompton in London. In fact I've got my second appointment this week. Dr Jones was supportive of me going and I still see him too.

If you want to meet up sometime it might be good to get our heads together?

[kareniliff2002 in reply to Lizmcg0]

Hey Liz, I hope you are well. Can't believe you have to go to London. I don't think I can make it down there, Not very good on the motorway ha. It would be nice to meet up, finally starting to feel like im not alone in this since I joined this forum. If im being honest I think ive been oblivious to my condition up until now. But its about time I really started to understand what this means for me in the future. The last 12 months have gotten more and more difficult to manage.