TWO ANDA HALF YEARS ON, AN UPDATE.

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 other articles on this blog
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 more 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? I’m 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 that 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.

John

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My Daydream

This is What I Would like for COPD Patients

In an Ideal Situation this would happen. —– The Patient gets a first possible diagnosis of COPD. Within one week, a Lung Function Test (LFT) is performed, X-ray images are taken, blood gases are tested, a full blood test is done. Within one month, an interview with a Specialist Thoracic Consultant is arranged to confirm or deny COPD, using the images and test results. If confirmed, the patient would be given appointments for further tests, scans and follow-ups as deemed necessary, and enrolled onto a continuously running Pulmonary Rehabilitation Programme.
The Pulmonary Rehabilitation Programme should be a continuously run course of exercise sessions, two or three times a week, consisting of sitting, standing, and walking exercises, including bikes, stretch bands, weights, and treadmills. Once a week the course should have an educational talk added, to include many aspects of what affects COPD sufferers, rotating on perhaps a three month cycle. The course should be overseen by a combination of nurses, physiotherapists, and physical trainers, who have been trained to recognise the needs and limitations of COPD patients. Each patient should have a record so that improvement can be recognised, or problems identified at an early stage.
Before each session, the patients would have their blood pressure (BP) recorded, and also oxygen level and pulse rate (SATS). Also in comments, any recent changes in medication, or the occurrence of infection, etc. During the session, for each exercise performed would be recorded the name of the exercise, the number of repeats, the the patient’s SATS and degree of breathlessness at the end. Also to be recorded in comments would be any difficulties encountered. A one hour session with perhaps ten different exercises should be sufficient for each patient. Each session should start and end with a sequence of exercises designed for warm-up and cool-down, done as a group, and afterwards a time for a drink (coffee, tea, or a cold drink) and a light snack, and chat.
Once a week, after the exercise session should be an educational talk for about an hour, either interactive, or with a Q & A period after. Subjects could be (not an exhaustive list):
1. What is COPD, what causes it, and how does it progress?  ++ By a consultant or a doctor, or a Respiratory Nurse.
2. Explanation of a Lung Function Test.  ++  By a consultant or a doctor, or a Respiratory Nurse.
3. Drugs used for the control and relief of COPD.   ++  By a Pharmacist.
4. Nutrition and the importance of diet in COPD.   ++  By a Nutritionist.
5. Mobility and Mobility Aids.   ++  By an Occupational Therapist.
6. Benefits. What is available and how to claim.   ++  By a CAB advisor.
7. Advanced COPD. Treatments and possible procedures.  ++  By a Respiratory Consultant.
8. What happens when an ambulance is called to a person with breathing difficulties.  ++  By Ambulance Staff.
9. Exacerbations and panic attacks, and how to deal with them.  ++  By a Respiratory Nurse.
10. Carers and support for them.  ++  By a Local Authority Social Services Supervisor.
11. Oxygen. Benefits, equipment and use.  ++  By a Respiratory Nurse.
12. Pulse oximeters and blood pressure monitors.  ++  By a Respiratory Nurse.

Perhaps this could be on a basis of a period of one rotation of talks free on prescription. Continuation sessions can be attended for a small fee to help defray costs or help with equipment replacement etc.
Run as many courses in a week as is necessary to serve demand. Run evening courses for those able to stay in work.

What is central to this concept is that there are personnel whose job is specifically to run these courses, in a dedicated clinic. Another idea perhaps would be to include cardiac patients into the courses, and include talks and demonstration sessions relevant to them. The mobility restrictions of cardiac patients are similar to lung disease patients, as are their requirements to improve fitness, particularly before and after surgery. Many people suffer from both lung and heart problems, and so one course could help with both.
Education of the patient is essential for their motivation. If people know the reason for the exercises, the drugs, and what help is available, then they are better able to help themselves to be fitter, and healthier.

breathe easy, everyone

John