Update on Lung Valves

[Ef0lumps4]

Had my second appointment with the consultant at Wythenshaw Hospital and left feeling so dissapointed was hoping for good news but the breathing test I had just done which was 1 Hour long were quite tiring and not what I was expecting lots of puffing and blowing and repeats first time I have been asked to use a nebuliser and I have never been in a little chamber before a bit like a telephone booth ? the results were not great The consultant had said he wanted me to do a rehab course I am still waiting to receive an appointment or start date for which he was not happy about so I have been chasing my local Doctors surgery only to find nothing had been done on their side about the rehab course as it has to come from the local Dr and not from Wythenshaw so more lost time rrrrrrrrrrrrr so annoying. The consultant said he would see me again in 2 months time after I had done the rehab to see if any improvements have been made he mentioned several times about a collapsed lung if or when it happened he felt I wouldn't be strong enough to cope with this exact words and terminology tend to go over my head He said it's all about air trapping so I am guessing my breathing not strong enough for me to recover in the event of any problems having the valves fitted.

I don't like to do too much reading on line research wise I think I would just scare the pants of myself as I am nervous enough as it is and aware there are risks. I hope when I get to start the rehab course fingers crossed I shall be able to talk to the COPD team and learn as I go and get some reassurances from them, as I usually go blank in front of the consultant and never get to ask what I intended think I was just hugely dissapointed he did at least say looking at the CT Scan he could fit the valves to my left lung so just need to get my Fitness level improved.

Hopefully next time I chat I will have better news but already telling myself if I need to continue as I am without the valves so be it the rehab course will be a good thing to do anyway and looking forward to it.

Chat soon

Pauline 🙂🙂

[judg69]

Pauline, by all means do the Pulmonary Rehab. Trust me, it will likely be the best thing you have done for your health in years. Kind Regards, judg69

[Ef0lumps4 in reply to judg69]

Hi judg69

Yes I am looking forward to the rehab and can only be stronger for it and understand we need to be as fit as we can be, I must just be patient thanks so much for your reply.

Take Care

Pauline

[skischool]

Pauline,Try not to be too disheartened,these things take time to organise and consultant just wants you to be as fit as possible before what ever procedure is suitable for you.I am down as candidate for coils as valves and invasive lvr already ruled out. know it is frustrating as i am in the same position and probably under same consultant at wythenshawe,i have to get a current hernia sorted out then undergo various cardio and gastro tests before i am even suitable to be presented before a multi disciplinary team for procedure to be agreed so probably looking at 3 month min period before anything happens,chin up and we will have our day soon..................regards skis and scruffy cat

[Ef0lumps4 in reply to skischool]

Hi Skis

Thanks for the reply think I was jumping the gun a bit and didn't realise until I did the extensive breathing test just how weak I was using oxygen does somewhat mask it to a degree so my fitness level deffinately needs improving doing the rehab will be good and I am happy to wait until the consultant happy. I think we are in good hands as you say our day will come. Good luck to you.

Pauline X

[wheezie]

I have found myself in the same state with the consultants.Write your questions down make a list over a period of time before you see him or her and then go through them point by point with them.Make a note of the answers so you do not forget what they have said. At least you feel like you have had your 2/6d worth

[Ef0lumps4 in reply to wheezie]

Hi Wheezie

Good advice.

X