Hi, I have Emphysema holes in top (start) and now bottom and rear of lungs. Anyway tues was my review by phone , it was a week late as they forgot to call me. Well got the call at 5pm and the review was done and dusted by 5.02pm ( TWO MINUTES). I was understandably not best pleased and had to wait till following day to post via the GP's app my issues with the review, so the first thing he asked was how could he help me even though he called me. Then asked if I smoke which I don't and it's in my records then asked how my breathing was (I said fine) then it was bye bye bye and hung up. The following day I messaged that I was unhappy and virtually got a call back straight away , but it was the same person (not awkward) . I asked why there was no CAT assessment as this happened every other year , his answer took me by surprise he said we don't do them because they are to robotic ( REALLY) and they want to find out about the person. I pointed out the two minute call, asked about the phlegm which I produce once a day he told me that happens and he would prescribe some pills (never asked for them) I take 13 pills a day which I find a lot , my mother is 86 and she only takes one lucky her lol. Then to top it off today my practice sent an email asking me to fill out a survey about my visit( no face to face), Usually these are quite short this one was very long. sorry for the rant but I needed to get it off my chest. cheers Kevin.
COPD Reviewish: Hi, I have Emphysema... - Lung Conditions C...
COPD Reviewish
I'd be putting a review on their website ASAP.
Scandalous It is possible to have copd without ever having smoked and doctors will know that, it looks as though he was looking for an excuse to blame you grrrrr
The practice should not read the surveys, but I never do them anyway.
Why no CAT SCORE - I got one - Seems like you are getting a raw deal.
What's a CAT score? xx
Hi, a CAT is copd assessment test a set of 8 questions you score 0-5 on each and add them up at the end and you have a score out of 40 . I did one myself this year and came out as 23/40 you can find the tests online just put in copd cat score in your search. when you do these it gives the clinician and idea of how well or badly you are doing before they other tests. hope this helps. Kevin
kev60 answered this well. I have a CAT score for COPD and a Breathlessness score for my dyspnea - I think that is 4, that ma change after I vistit my GP on Tuesday. xx There is also a Asthma score. I think mine was 14 last checked - I like the das when you popped into Asthma Nurse and everything was more simple.
Seems about right to me. Mine never take more than 5 minutes.This year I was 'lucky'enough to have lung volume reduction surgery but when I had my yearly review the Asthma nurse,as she called herself, had never heard of it.
Why are they trained for Asthma and not COPD or other Lung related illness's.
Hi Bluebelle, just wondering how your LVR was, as my consultant is considering me for it. I would love some insight, if you don't mind? xx
Hi,There are lots of tests you have to have before you are accepted, and I was borderline as my lung function was only 19% a,nd my weight was low, but I was lucky enough to ' have a go's at it.
lvr surgery( not valves) was OKish, I had to go to Barts in London and I live in Bristol so that was quite a trek to start with. The after surgery was quite sore with the chest drains and unfortunately I had to stay there for 3 1/2 weeks as I had a prolonged air leak. Once I eventually got home with 1 chest drain still in I was seen by local hospital for after care, I eventually had the drain out and was recuperating quite nicely and then contracted the flu,😞. The op was in January and I am only just getting back to pre op levels of exercise and breathing, so Ime still not sure if it worked or not.
I have pulmonary function and six minute walk test to compare before and after this week so I will know more then.
Thank you for taking the time to reply, much appreciated.
My consultant has instigated some of the necessary tests and if they go well it is Bart’s that he would refer me to as they “are the best”
It sounds as though you had a couple of setbacks, which given the delicacy of the op on already unwell patients is bound to be a risk.
I very much hope that you rebuild your fitness and exceed your old levels. I wish you all the very best in your continued recovery and hope that inspite of everything you consider the op to be a success. Take care and don’t catch anything else! Would love to know how you get on Laurie xx
Bart s are certainly the best, couldn't have asked for better care, if all does go well I might be able to have the other Lung done with the valves 🤔Good luck with your tests
Liz🙂
Oh good, I will keep my fingers crossed for you Liz 😊 keep well xx
Hi Kevin. I am not based in the U.K. but was absolutely bewildered to hear from a friend who does. He had a surgical consult which was facilitated by a ROBOT on the telephone and then asked to write a review about the robot. I kid you not. 🙄😏
I understand Kevin. I used to go regularly to see a lady about my COPD before COVID now it is non existent. I have seen someone twice in 4 years and all she said was how is your Oedema, we don't do lung function tests we go off how you are! How do they know when they never see me?! and you know you have to wash your Aero Chamber?! I was very annoyed after I came out. Complete waste of time. No one from my surgery has seen me in over a year and I know my breathing is getting worse but who do I see and do they care?! Sorry for the rant Kevin but like you had to vent. My neighbour goes to the pulmonary clinic at the hospital and says they are brilliant so will have to speak to my doctor as the pulmonary doctor is useless. Take care Kevin
Fairly standard, my GP practice COPD review follows the same lines, if I’m lucky I might get asked about inhaler techniques, how ever my consultant does face to face and normally I get an X-ray and basic lung function test at the same time.
Grrr! Your surgery needs a kick up the ....... Your surgery is not doing well by you.
I am so pleased you had the confidence to follow up the call. Patients need to give feedback to ensure services are accountable. xxx
Hi Kev, Well I have never heard of emphysema holes. We all have five lobes in our lung cavity - two on one side, three on the other. And emphysema involves the closure or deformation of the tiny holes in the tiny and also possibly deformed little cells called alveoli. I take 13 tablets a day plus four inhalations in two bursts and two sessions on a nebuliser. I am also on 24x7 O2.
So I think you need to get your GP (who is a Generalist not a specialist) to pass you one to your local COPD team who are experts in our diseases. Do please insist - some GPs think they7 are good at everything which cannot be true for anyone.
I am no clinician but if I can help more drop me a line.
Hi, when first diagnosed I was actually being tested for cancer under the 2ww. There was thankfully no cancer but the oncologist said they found 3-4 holes in the top of my lungs (Apical Bullae). I am under Respiratory clinic and two years on a follow up appointment they found holes in the bottom and rear of lungs but my breathing feels the same a the moment. I have been told they can be referred as chambers, hollows and pockets I think it depends on the specialists what they tell you sticks. they think the emphysema was caused by my smoking and my work (glass trade) breathing in glass dust in my case they said the glass wore down the walls inside the alveoli to create these holes / pockets. thanks for the input.kevin
Rant away. It seems that it was a poor attempt at your review You could complain to the practice manager first and then if no success to the health authority. Take care xx
Is your GP self employed and part of a large group practice, a lot now are and paid by the patients they see or ring a day.Thst is why GP surgerys are no longer fit for purpose
Well done for calling him out!! I have to say I didn’t get much more of a review, but I am seeing other respiratory nurses and consultants 6 monthly so I wasn’t particularly bothered. I would have been though if that was my only contact about my COPD!
Take care xx
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