As some of you know, back in February 2012, I had 3 Pulmonx valves fitted to the upper lobe of my right lung, as a means to achieve a reduction in lung volume. The op was an enormous success, giving me a huge increase in my capacity to live a life. Basically my FEV1 increased from 16% to 32%. I've written about it, and you can find that in my early posts on HU.
I thought it was time for an update, so here we go.........
The new life takes some getting used to. I found that the best way is to forget about fast breathing, as it only causes some air trapping, that then needs some controlled breathing to get rid of. It's only useful when doing a function test, and then only for checking the elasticity of the lungs. For me, it's long slow deep breaths, but concentrating more on getting a good , steady out-breath, and every so often at the end of the blow, blow out a tiny bit more. Low air pressure, associated with bad weather systems affects me, increasing the need to blow out using 'pursed lips', to increase the pressure in my lungs. Breathing in looks after itself, just try to do it through your nose.
For those thinking about going forward for this, or any other procedure, this is not a cure. It is an intervention intended to give an increase in capacity by shutting down a bad part to allow the better parts more room to operate. Remember that the damage to your lungs will continue, due to inflammation and infection. So avoid doctors' surgeries and children!!!! (As if you can, ha ha).
The aftermath of the valve op, and indeed, the use of coils is largely uncharted territory. There aren't very many of us yet, and the aftercare is largely guesswork. GP's as yet have nothing to guide them, so I see my docs treating me as a patient with fully functioning (or nearly so) lungs. So a sputum test result which shows a 'normal' loading of bacteria or fungus spores is put down as of no consequence, whereas, for me with about 25% of my lungs working, it actually translates to 4 or 5 times a serious than for a 'normal' patient. That, I call significant, to me.
Keeping as fit as you can is important, as is pacing yourself. I am finding that as this progresses, more changes are happening. Some of the drugs I was taking before the op, I have dropped off, as the symptom they were treating has changed. I find that taking a NSAID morning and night helps to reduce lung inflammation with little or no side effects, just as well as steroids did with side effects (cataracts, aggression, and appetite). In fact, I would recommend that everyone with advanced COPD get a drug review every two years or so. Symptoms change over time, and so does the need for specific drugs.
Now, how am I? Im feeling pretty good. But (always a 'but' isn't there?) The damage continues. I did another seminar at Cardiff in May, and as part of the day's proceedings, a CT scan I had the week before was put up before the delegates. Wow. What a revelation. This was discussed by a couple of very eminent Professors of Thoracic Surgery, (one from France, Prof Pison from Grenoble Uni Hosp), my consultant, and about ten other surgeons in the audience of approx 60 medic professionals. Most noticeable was the difference between the depth of the lungs, because of the valves. But also the degree to which the damage had continued. I now have big cavities in both lungs (a bit bigger than golf balls), so the discussion centered on where to go from here. The final consensus was actually to do nothing, having considered valves, coils, reduction surgery, Bullectomy, and finally transplant. So here I am, not feeling bad at all, but aware that my condition can best be described as 'Brittle'. I reckon I am probably two years past my 'Throw it in the bin' date. So me and the family are definitely winning.
Would I go through the op again? Oh yes. Absolutely!!!!
Would I recommend it? Yes, provided it is suitable for the patient, and that the patient is suitable for the op, Whether it be valves, coils or reduction surgery.
May I wish you all, similar long term success, whether it comes from drugs or surgery, or just plain keeping fit and eating well.
All of you out there, breathe easy.
Johnwr.
Janexx
At Last .Results
Clinical Trial
Having a bad day, appreciate any advice
A sobering experience- and an update to an earlier post
