Low DLCO. What does this mean for me?

[Eco1]

Hi all. I have Asthma and Emphysema and have regular PFTs. My FEV 1 has declined over the years to 47% but after a bout of Pneumonia last year it has now increased to 79%. How, I do not know. However, I have received two PFTs in the past 6 months and each one has noted that my DLCO has been recorded as 30% and 33% respectively.

My Sats remain good when at rest although I do find I struggle on any exertion. A recent 6 minute walk test was stopped at 4.30 minutes due to my Sats dropping to 83%.

Does anyone have any advice please? Am I a candidate for ambulatary oxygen? I am due to see my Consultant on 13th January 2020 and would like to know what questions would be useful to ask.

Many thanks. Christine

[skischool]

I imagine that your consultant may well ask his team to assess your requirement for ambulatory O2 on exertion given your resent desaturation on the 6 min walk test.

Your low DLCO results could well be the reason why your sats drop on exertion as they are a measurement of the efficiency of your gas transfers within the lungs.i am sure that your consultant will explain all at your next meeting and hopefully given your relatively high FEV1 measurement there is some other event happening that can be resolved easily.

Good luck with your consultation.

Ski's and Scruff's

[Eco1 in reply to skischool]

Thank you both for your reply.

I try to be very patient but lately am getting extremely fed up of being told that my sats are fine. I know they are but it doesn't stop my daily struggle to breath during simple daily tasks.

My FEV1 is also very confusing as it was steadily declining to 47% until I had Pneumonia 7 months ago. I cannot see how it could have improved so much, yet my breathing is still so bad. I just feel so frustrated.

Sorry for rambling on.

[skischool in reply to Eco1]

No problem,i imagine that something is amiss with the spirometry results as your FEV1 would be unlikely to improve by 32% especially given that you had a bout of pneumonia and one would have expected it to decline as well but it is pointless either i or anybody else speculating when you are going to see a professional fairly soon.

[Eco1 in reply to skischool]

Ok. Thank you Skis.

From my experience, the Docs are very good at giving information when asked but not necessarily so, if the right questions are not asked.

What questions do you think I could ask to obtain the information. I feel I can be fobbed off easily.

[skischool in reply to Eco1]

I wouldn't even bother to ask for an explanation from a Gp,they are just not specialised enough in lung conditions.wait until you see your lung consultant and just ask him to go through the items diagnosed by the radiological consultant one by one and ask him how things may progress,what you can do to mitigate that progression and what aids such as oxygen and medication you can use to help you on that journey.

[Eco1 in reply to skischool]

Sorry, I didn't explain. I have an appointment with the Consultant next week, having had a CT scan today.

Two Consultants have previously suggested transplant to me but my Consultant does not feel that I meet the criteria just yet.

I feel that I do not ask the right questions to obtain the best information but I will keep your suggestions in mind. Thank you.

[skischool in reply to Eco1]

i would tend to listen to the last consultant who thinks that you do not yet meet the criteria for transplant and work with him on how you can improve your life and condition if only to be strong enough should transplant ever be the best route for the future,

[Eco1 in reply to skischool]

That seems a sensible approach Skis. Thank you for your time.

[Hidden]

Hi Eco1 my Fev1 increased for a short time after Pneumonia from 25 to 40. In my case it was due to the plugging of one of the bronchial trees with post Pneumonia scarring. As time went one the scarring separated and the bronchial branch opened up again and my Fev1 dropped back down to 25. I've got a feeling this is how the recent development of blocking off bad bronchial airways came about. "Airway valve treatment" if they put a valve in to block off a bad airway it improves lung function and improves exerercise capacity.

[Eco1 in reply to Hidden]

That is interesting Lyndenese. How did they find that this was the explanation for it please? Was it evident on a CT scan?

Thank you for your reply.

[Hidden in reply to Eco1]

CT showed the "plugging" as they called it caused by pneumonia. I was physically aware of the "plugging" gradually repairing (it felt like tearing within my lungs) (grose I know!) this went on for about 6 months and gradually as this happened my Fev1 got worse.... Future scans showed the "plugging" had got smaller. Like a scab I suppose. So 2 and 2 together I arrived at the reason it had happened. I don't get enough help or advice from medics for them to make an educated diagnosis I'm afraid.

[Eco1 in reply to Hidden]

Ok. Well thank you for that. It may provide one explanation for the changes.

Thank you for your time.

[Hidden in reply to Eco1]

It helped me understand how the valves would work. I cannot tell you how good it felt to go from Fev1 25 to Fev1 40....huge difference! I hope you find a solution to your problems. Good luck 🍀

[skischool in reply to Hidden]

The valves are one way and block air going down into the airway but allow stale air and co2 to go back up the airway and be expelled so the plugging caused by fibrosis or pneumonia doesn't rely explain the phenomena of an increased FEV1 unless of course the other parts of the lung are overcompensating to balance against the blocked airway?

[Hidden in reply to skischool]

I was thinking that what happened was the air I breathe in, went into good branches of my lung rather than into the first diseased branch where it got lost and unable to be expelled because of the floppy damaged air sacs. There for was a more efficient breath in.

[skischool in reply to Hidden]

That would be correct as the air tries to enter all associated airway passages available,in my case my valves block off air to the the area being targeted but allow gases to transfer backup the same route,the object is to deprive the area targeted so that it shrinks down in effect reducing the residual volume of my lungs leaving no dead spaces for air to become trapped and making the rest of the lung do all the work but unfortunately this hasn't occurred and no atelectasis or shrinkage has happened. x

[Hidden in reply to skischool]

Ah, so it would be why the "plugging" in my case worked to increase my Fev temporarily then. Have you found benefits to having the valves re increased mobility etc, in spite of the atelectasis not happening?

[skischool in reply to Hidden]

No benefits will be obtained unless the shrinkage occurs so in effect i stumble through life with some rather expensive bling inside me doing nothing. x

[Hidden in reply to skischool]

Oh that's a shame, the valves might work better if they completely block off the deseased area like the plugging does then 😉

[skischool in reply to Hidden]

For various reasons the valves can become ineffective,our airways are dynamic living tissue and can and do change their structure all the time,checks are made to ensure their seating via CT scans and chartis bronchoscopy and changes in collateral ventilation between lobes can render them ineffective but i would recommend to anybody wanting to have them inserted to give them a try if they meet the criteria as many people have achieved better functionality when they do perform as intended. x

[Hidden in reply to skischool]

I asked about the procedure when I first heard about it around 10 years ago. But all they wanted to do locally was a lung transplant. They still do not offer this procedure to patients locally under any circumstances. They promote either lung reduction or lung transplant. The medical situation where I live is rather dire re respiratory help. Our choices are GP and low level respiratory nurse at hospital once every 6 months. (low level as in not qualified to prescribe) and the nurse I have, trained in this specialty whilst I have been going (under a superior nurse who left) and she qualified and took over the role late last year. So I feel I have around 10 years more knowledge than she does. 😔 No consultant help offered.

[skischool in reply to Hidden]

Try looking up a decent hospital reasonably close to you with a decent respiratory dept,find a consultant who operates within that hospital and demand that your Gp refer you to him if he is accepting patients.

My local hospital although having three consultants are positively dangerous and managed to neglect my wife to the point of death hence i did my research and got all my respiratory needs transferred to a local centre of excellence 15 miles away and they are the ones that arranged and did the procedure and even reinserted the valves plus one extra when they appeared not to have achieved their purpose,

i am now awaiting an LVRS procedure done under the minimally invasive VAT s procedure,i.e keyhole surgery and although my thoracic surgeon says it will be a high risk venture given my limited lung capacity and bad transfer rates they are prepared to proceed once i sort out a current swallowing problem and it will be for me to decide if i want to take that risk. x

[lKeith]

Ecol

Hi, you may be accepted for ambulatary oxygen I've just got it , but I had to be refered by my GP, that's the only route.

You will asked how you cope, do you plan your work or events, and take breaks at regular intervals or when you feel out of breath.

Do you rest well and for a reasonable time between event. Apart from the walk test which you may already have failed, they should be able to give you a trial on it. The interview will probably last about 1.5hours then comes the walk test.

I have to say that it has been useful, but cumbersome. but you must take instruction for it be good for you, don't think you know better.

Go with it, seems you have a good case.

IKeith

[Eco1]

Thank you lKeith for your reply.

It appears that matters have now escalated following my CT scan but maybe this issue can be re-visited in the future.