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

Breathing Techniques

First of all, what is ‘Breathing’? This is the means evolved by nature for animals to facilitate the exchange between blood and air primarily of Oxygen and Carbon Dioxide. The lung developed in early animals to do this job in a protected part of the body. The membranes and blood vessels associated with the gas exchange are delicate. Another major function of breathing is controlling how acid (PH level) our bodies are.
In a fit healthy person the lungs have the ability to service the body in extreme activity, while in very challenging environments, such high altitude, bad weather, and bad air conditions caused by chemical fumes, smoke or poor ventilation. At rest, this fit healthy person breathes very slowly, and shallowly. This is as much as they need to do to maintain the body. They are probably using between five and ten per cent of their lung capacity.
When a person’s lungs start to get damaged, whether through smoking, environmental conditions, or illness, the reduction in capacity does not really get noticed until about fifty per cent of that capacity has been lost. As we continue to lose capacity, the importance of breathing correctly so as to make the most of what we have becomes more and more important.
When we consider how we breathe, think about posture. If we are sat, sagging forward with a curled spine, then we are restricting our lungs ourselves, the bottom part of both lungs being unable to expand, and our diaphragm cannot operate properly. When we hold our bodies straight,whether sat or stood, with an erect spine, then the lungs and diaphragm have room to function.
The next thing to consider is that if we are not breathing, and are relaxed in an upright attitude, then the neutral position of our lungs is that they are between half and three quarters full. Then it stands to reason that the easiest first movement is to breathe out. So when in difficulty with breathing as we get with COPD, we need initially to concentrate on breathing out, to make room for a useful inward breath.
Now let us consider how we breathe in. When all is well, we are relaxed, not demanding much oxygen, then we tend to breathe gently in and out through the mouth. This just uses the very top part of the lungs, using chest expansion by the ribs and associated muscles. This is not very efficient, but for most people at rest, it doesn’t need to be. Next, let us think about breathing gently in through the nose and out through the mouth. This brings more of the lungs into play, and is starting to get the diaphragm working. Better than mouth breathing, but when those of us with severe COPD get into trouble, it is not enough to get sufficient oxygen into the blood stream, and carbon dioxide out. To do that we need to breathe out through pursed lips. Think of trying to whistle. Then shut the mouth and breathe in through the nose. Then out again through pursed lips. Sit up straight. Shut the mouth. Breathe in through the nose. Practice this when we feel good. You can feel the diaphragm working. Breathe long, and deep and slow. Those of us with a pulse oximeter, if we put it on before practicing deep breathing, will see that our resting O2 level is probably low to mid nineties. Now start deep breathing, it will take about a dozen or maybe as many as twenty breaths to get full use of the lungs. Watch the meter, over a period of a few minutes, you should see an increase of three or four per cent. Keep it up for ten minutes or so, and we feel good, but this is taking effort. It is difficult to sustain for long periods, and concentration will start to lapse. So doing it all the time is not what we need, neither is it natural. But for those of us with limited lung capacity, it is a good idea to practice the technique when we are well so that when we get breathless and struggle, we have something to help get us back on an even keel. Most of the time, we have a wife, husband, partner or carer near us. If they know the technique, when our breathing goes wrong, they will have something to help us with, getting us sat, reminding us to breathe in through the nose, blow out through the mouth, watching us, telling us. When we panic, it is difficult to think right, and we tend naturally to gasp through the mouth, and we need reminding of the best way. Be tolerant of those telling us, they are trying to help us. If you are in the carer role, be tolerant of your patient, in a breathlessness event, they are going through a difficult time.

While we are doing our good breathing technique, what is going on inside our lungs? Probably not quite what you think. In the middle of a deep breathing practice session, each breath in takes about four seconds, and a breath out about the same or a second or two longer. The diaphragm is working properly. All is good. As we breathe in, there is some chest expansion and the diaphragm pulls downwards, making the lungs expand and lowering the pressure in them, causing air to enter from the atmosphere. This is important, the lowering of pressure, I mean. Because of the lower pressure, carbon dioxide is encouraged to leave the blood stream, pass through the membranes into the alveoli (the small sacs at the ends of the smallest airways where the gas exchange takes place). When we breathe out, the chest contracts, and the diaphragm pushes up to make the lungs empty. The pressure inside the lungs increases, especially if we use pursed lips to cause a constriction. This is how we blow balloons up. Inside our lungs, the increased pressure pushes oxygen through the membranes to be taken up by the blood stream. This is not how we normally associate our breathing with our lungs and blood stream exchanging oxygen and carbon dioxide. Usually we think of it as the other way around.
When we get a problem with breathing, it is usually because our technique falls apart, the diaphragm not working properly being the usual reason. How can we help ourselves avoid emergency situations due to breathing. Be self aware. When we first sense that something is going wrong. Stop. Sit. Try and relax. When you can, if need be, move to where there is fresh air. Use this deep breathing technique. Use your inhalers. If you don’t regain control quickly, get someone to call an ambulance.
When ambulance staff or paramedics attend someone with breathing difficulties, their standard procedure is to first of all get oxygen going into the patient, then to get a nebuliser going.
The nebuliser will normally be loaded with salbutamol (Ventolin) and Atrovent (Ipratropium Bromide). Salbutamol works by acting on receptors in the lungs called beta 2 receptors. When salbutamol stimulates these receptors it causes the muscles in the airways to relax. This allows the airways to open.In conditions where there is narrowing of the airways, such as asthma or chronic obstructive pulmonary disease (COPD, eg emphysema and chronic bronchitis), it is difficult for air to get in and out of the lungs. By opening the airways, salbutamol makes it easier to breathe. Ipratropium works in the lungs, where it blocks other receptors called muscarinic receptors that are found on the muscle surrounding the airways. A natural chemical called acetylcholine normally acts on these receptors, causing the muscle in the airways to contract and the airways to narrow. Ipratropium blocks the muscarinic receptors in the lungs and therefore stops the action of acetylcholine on them. This allows the muscle around the airways to relax and the airways to open. This makes it easier for people with asthma or COPD to breathe. The combined action gives a rapid response that quickly leads to easier breathing. With the return to more normal breathing, relief soon brings a feeling of being back in control and you become calmer.
After you are stabilised, you will probably be taken to hospital for tests and observation. At the hospital if infection is found you will be given appropriate antibiotics, and a drug regime established or your current one reviewed. The most common result is you leave with a bag full of drugs including Ventolin, Spiriva, Uniphylin tablets, and others to deal with side effects. The important one with regard to the subject of this article is Spiriva. This is drug is closely similar to Atrovent being intended to help your body maintain good control of your breathing. The difference is that Spiriva is intended to be a one dose daily drug to give 24 hour cover, whereas Atrovent is quick acting but short lived in the body. If you have Spiriva prescribed, take it, once daily. Do not take Spiriva and Atrovent on the same day, except under medical supervision.
I hope this article help you as patients or maybe as carers to understand what goes on when we breathe, and to be able to help ourselves or our charges when it goes wrong.

Remember, breathe easy,

John
PS. I am not a medical professional. I am writing this to try and fill a gap in general knowledge about COPD. If I have written something wrong, say so. We all have something to learn, especially me.
PPS. The PS above was proven when a comment made me check The actions of Ventolin and Atrovent. I have now amended the article to give the correct information. 

Lung Volume Reduction using Pulmonary Valves. My experiences as a patient.

The following is a transcript of a presentation that I gave at a seminar at The University of Wales Hospital, Heath Park, Cardiff. This was held on November 13th 2012.

THANKS TO MY CONSULTANT AND THE TEAM

I would like to start by expressing my gratitude to my consultant and the team for the skill and professionalism shown when performing the lung procedure on me, and in the aftercare shown in the difficult time I had afterwards. Their confidence and cheerful attitude helped me no end. Thank you all.

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GIFT OF TIME

This operation that I’ve had, the fitting of pulmonary valves into the upper lobe of my right lung, has been of immense benefit to me, and my wife. Since the operation, my wife has told me that in the opinion of various doctors who have seen me at Bronglais Hospital, Aberystwyth, that my life expectancy was short. That was two years ago. Obviously I’m still here, and my opinion is that it is all because of this operation. So what has changed? No diseased tissue was removed, no good tissue was added. I am not a professional expert in these matters, but I have read quite a bit about lung disease and various techniques and procedures used to try to bring about improvement in the lives of those who suffer. It is my opinion that the procedure alters the the areas of lung tissue in play, increasing the effectiveness of what good tissue we have. I think this is the best option we have now, and will probably be so until someone gets lung tissue to repair or regenerate without producing scar tissue. I hope that success in this is not far away. I live in hope that I will survive until that success can be brought into general use, and applied to me. Until that happens, I benefit from the greatest gift that my consultant and the team could have given me. Time.

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DESCRIPTION OF MY CONDITION PRIOR TO OP

A person who has become a good friend over the last couple of years who also has COPD, described the condition as “Death by chair”. Prior to the operation that definition fitted me to a tee. I was on oxygen, needing about five litres per minute at rest. I was having difficulty walking more than a few yards, and would then need several minutes to recover. Talking for any length of time was impossible. I would regularly have episodes where my breathing technique would fall apart, leaving me gasping, very short of breath, and close to panic. Luckily,my wife learned how to put together a nubuliser, loading it with salbutamol and iprotropium bromide, driving it with O2 at six litres per minute to get me back to a stable state. There were times I think when I must have terrified her.
In that period, I was taking a large quantity of drugs that needed to be taken at various times throughout the day, so much so that I needed a spreadsheet on the computer to keep track, and make sure I was getting the right drugs at the right time, in the right quantities. We also had to be aware of possible conflicts between certain drugs, for example certain antibiotics and multivitamin tablets containing trace metals. My life could only be described as “small”, and reducing.

About a year and a half prior to my op, my local consultant referred me to see a surgeon in Cardiff, with a view to having Lung Reduction Surgery, involving the surgical removal of the most damaged parts one or both lungs. At the end of the interview, he turned me down saying I was nowhere near fit enough. He was quite sure that I would not survive an operation of that magnitude. He sent me away saying that if I got myself fitter he would look at me again. I managed, with the help of my respiratory nurse, to get onto a pilot pulmonary rehabilitation course that was being held at my local community hospital. I considered that course to be a tremendous success. We had a series of what for most people would have been very gentle exercises. For those of us who were participating, they were stretching our abilities quite nicely. We also had various health professionals giving relevant talks and holding discussion sessions. I see these as essential for patients in my situation, because if you know what the problem is, then you can solve it, or at least reduce the effects. It is also important that we don’t feel alone. COPD, because it makes us homebound, isolates us, and leaves us lonely. These courses give much needed companionship. Unfortunately, at the end of that course I was taken ill I think with a virus infection, that set me back.
With the knowledge gained from the rehabilitation course, and from ambulance paramedics, I have learned to manage the COPD fairly effectively, in fact, enough to keep myself out of hospital even though I was having breathlessness attacks quite frequently. I also keep antibiotics at home so that I can start a course immediately I feel an infection starting, along with increasing my doses of Prednisolone. My personal opinion about the year or so prior to my operation is that I was suffering from a low level virus infection that did not show on any of the tests done on sputum or blood samples taken through that period. It did seem to clear itself quite suddenly about two months before the op. I just woke one morning feeling a lot better than when I went to sleep. I feel lucky that it has not returned.
I am still not sure who referred me to my consultant but she saw me, and very kindly took me on her list.

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EXPERIENCES IN HEATH HOSPITAL, CARDIFF REGARDING AFTER EFFECTS

When I awoke in the recovery room after the operation, I was told the operation had been unexpectedly successful. Apparently, with most patients, the collapse of the part of the lung operated on usually takes several days. In my case, it was pretty much complete by the time I came out of the anaesthetic. As a result of this rapid reaction, I then suffered a pneumothorax, with a tear in the upper lobe of the right lung. A chest drain was fitted, and I was hooked up to suction. I think it was expected that the lung would start to heal over the next few days. This proved not to be the case. At that time I was taking large doses of steroids, and using a nebuliser four or five times a day. This, I was told, stopped the healing process. X-ray images taken over the next few days showed that when off suction my lung fell away from the chest wall and my breathing became severely restricted. While this setback was occurring, I was finding out the benefits of the operation. An exercise bike was brought to my bedside, where the oxygen and suction could reach, and I found that I was capable of doing what I considered then to be substantial sessions on it, five or six minutes at a steady pace. For me that was a considerable achievement, bearing in mind that pre-op a ten yard walk even with the benefit of O2 at 6 lit/min would leave me gasping and distressed for several minutes.
About a week after the operation, X-rays showed that as well as no improvement in the pneumothorax, the affected area of the chest cavity had migrated, meaning the chest drain was now in the wrong place. A second drain was inserted, and after x-ray examination adjusted for best placement. Two days later(?), as the pneumothorax was still not healing, it was decided to give my chest a Doxycycline wash-out. Not a pleasant experience. Also it did not kick-start the healing process. A second wash-out was tried a week later, successful result this time. I should mention here that between the two wash-outs, after several requests by my consultant I had a consultation with a steroid specialist. This consult resulted in a drastic reduction the amount of drugs I was taking. Some being removed altogether, others being reduced. I believe this review of drugs was at least helpful, if not being a major factor, in the success of the second Doxycycline wash-out. Several days after the successful wash-out, after x-rays showed favourable improvement the drain was removed. A few days later, when healing could be seen to be well established, I was discharged. An expected stay in hospital of about eight to ten days actually turned out to be the whole of February.
Was it worth it? Absolutely! Would I go through it again, with all the complications? Definitely!
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DESCRIPTION OF MY CONDITION AND PROGRESS POST OP

The success of my operation can be seen in a number of different ways. Physically, what happened? The placement of the valves caused a deliberate collapse of part of the upper lobe of my right lung. Previously, the lung was hanging so low that the bottom of the lung was sitting on my diaphragm to the extent that the lower part of the lung was compressed and not able to work very well. Post-op, the lung is now hanging free above the diaphragm. The bottom part of the lung is now performing as it should, and as the condition of the membranes is far better than the closed off section, my breathing is now giving far better gas exchange. This is shown by the different results of tests pre and post-op. An FEV1 test done in November 2011 gave a ratio of 16%. Another test done by the same technician on similar equipment in early May 2012 gave a ratio of 31%. Almost 100% improvement!! I think that since then further improvement has happened as the bottom part of the lung cleared of rubbish and simply got used to being used again. Although I have not had measurements done lately, I certainly feel that more improvement has taken place. Another major benefit of lifting the lung free of the diaphragm is that the sheer effort of simply breathing has been reduced from the major expenditure of energy that it used to be, often without the spare capacity to even be able to say more than a few words. Now I have to be told to ‘Shut up’. Benefits come with costs. I have paid for this improvement by gaining about 40 pounds in weight.
Another major influence on my performance has been that I have had cataract removal operations on both eyes in the last few months. This required several weeks of inactivity after each operation while the eyes were in a very delicate condition. Now that the eyes are healed, I can start fitness work again. In the period after the lung operation, but prior to first eye operation, I went through a period of several months rehabilitation fitness therapy at our local community hospital where my performance was documented. I think my consultant was pleased to see these when I visited for a follow-up consult in May.
Before February, I was using oxygen all day at approximately 5 lit/min when at rest. After a small exertion, such as a visit to the bathroom, I would often increase the O2 to eight or even ten lit/min for five minutes or so, to effect recovery, such was the state of my health at that time. I still use oxygen, and the devices that I use are generally set at 4 lit/min. It is worth noting however, that all use nose canular and my portable equipment have conservers fitted, so they only supply oxygen when I take a breath through my nose. I am by nature a mouth breather so I am weaning myself off oxygen gradually.
Drugs and the nebuliser. After a spell in hospital about two years ago, I realised that Spiriva (Tiotropium Bromide, a 24hour controlled release drug), wasn’t giving me the supposed 24 hour cover. In fact, I doubt I was even getting 16 hours. So I asked my GPs if I could try Atrovent (Iprotropium Bromide) via nebuliser instead, as it was one of the drugs the paramedics used, being fast acting and, for me convenient to use. The GPs agreed and I then used the Atrovent combined with Ventolin (Salbutamol) several times a day. This was much more satisfactory for me, although it added to the complications of taking my drugs. In fact, for 18 months prior to the lung operation, I was taking such a drug load that I needed to record my usage on a spreadsheet to keep track. The consult with the steroid specialist while at the Heath Hospital was very valuable in reducing this drug load. After discharge from Cardiff, I found I was needing to use the nebuliser less and less, and very quickly relegated it and its drugs to be used only when necessary. I gave up using it at the end of May altogether, just using pocket inhalers only when required. Taking my drugs now is only about four or five minutes twice a day, instead of half an hour or more up to five times a day. For me, that adds up to an incredible change, apart from what the savings in drug costs must be for the NHS.
A further measure of the success of this procedure for me is the fact that I have just returned from a trip to the West Coast of the USA. San Francisco in fact. Just that I could even consider such a trip is fine testament, but to achieve it? Well I can only say that in the most literal sense of the word; WONDERFULL. Because this trip was really for my sister’s benefit (she got married for the first time aged 60). We had over 20 of my relations there for the occasion. I had to endure shopping trips of industrial proportions, whirlwind sight-seeing trips, and parties that seemed to go on for days. I came through it all OK. In fact, I learned that my resilience is far higher than I appreciated. Other people who are not used to making allowances for my needs unwittingly caused me to let the battery on my O2 concentrator to run flat several times. This proved not to be such a big deal if I could sit quietly and move slowly to somewhere I could get plugged in. I have to say that I did not meet one unhelpful person in all the time we were in the USA.

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IMPORTANCE OF A REHABILITATION PROGRAMME BEFORE AND AFTER THE OPERATION

As I mentioned earlier, a good friend of mine, who also has COPD, refers to the condition as ‘Death by chair’. I have to say that I agree with that statement. Because we get so breathless so quickly, we become very reluctant to be out of our chair and moving about. An extension of this is the way we convert our favourite chair or desk or place at a table into a kind of nest where we organize our small lives into a comfort zone where everything is within arms reach. This is a kind of protection, because when you are ill, who wants to deliberately make themselves breathless? We always remember the last exacerbation, where breathlessness leads to great discomfort and panic. This then becomes a kind of death spiral. Movement hurts. Don’t move. As a consequence, our bodies become more unfit, and to do simple things require more oxygen and energy than a fit person to perform the same activity.
If a patient is to undergo any surgery, then it is obvious that a fit person has a better prognosis for recovery than someone who is not fit. But simply saying ‘Get fit’ to a prospective patient is not enough. Few enough fit people could put a fitness programme together, and COPD patients are unlikely to be fit. There are problems in dealing with COPD sufferers, motivation, equipment, which exercises are appropriate, how much to do, monitoring, and more. So organised exercise programmes are essential. So is education in other matters related to COPD, and the situation patients find themselves in. The structure of a well run course such as the one I experienced a couple of years ago, gives confidence as well as fitness. I found the social aspect of the course to be beneficial. As well as exercise sessions organised as circuit training, we had talks given by pharmacists, dieticians, oxygen technicians, occupational therapists, and others.
The fitness training part of the course was supervised by a very experienced physiotherapy technician with help from other interested healthcare professionals. They always tried to get a one to one ratio enlisting the help of patient family members where possible. The exercises were two minute sessions of gentle exercise where the number of repetitions was recorded, as well as saturated O2 levels and degree of breathlessness. Over a period of several weeks, it became easy to see where fitness was improving, and also where people had problems, for example if someone had a small infection starting, that was otherwise unnoticed. Getting the patient used to this type of programme before surgery has the benefit that after the operation, they are ready to go on getting fitter, and indeed, should be keen to do so.
My thoughts about rehabilitation courses is that they should involve both pre-operative and post-operative patients. This would help with confidence as pre-op patients see the success that post-op patients are enjoying, while going on to higher fitness levels. I would like to see rehabilitation courses become permanent features of selected local clinics. From my perspective, not to would be such a waste.

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IMPORTANCE OF A REVIEW OF STEROIDS AND OTHER MEDICATIONS AT SUITABLE INTERVALS

Earlier I mentioned that while at the Heath Hospital I had my medications reviewed by a steroid specialist. This was the first time that my medicines had been comprehensively looked at in total. Because the treatment and control of advanced or severe COPD involves the taking of so many different drugs, it is understandable that not all doctors have the knowledge to work out the interactions between them, in particular, the steroids. By definition, GPs, who do most of the prescribing, have a general knowledge of drugs. Specialised knowledge would only come from the experience gained by treating patients with specific problems, and where they take a particular interest. So it should be no surprise to learn that after several years of adjustments to my drug regime, things had got a bit out of hand.
The recommendations that were made included:
Reduce Seratide dosage by half. This drug has a ceiling beyond which there is no further benefit, but side effects do continue to rise.
Cut Pulmicort altogether. The effect this drug has is more than adequately covered by other drugs that I was taking.
Pleased that I was using nebulised Atrovent (Ipratropium Bromide) instead of Spiriva (Tiotropium Bromide), because of cost and effectiveness.
Recommended weaning off Prednisolone asap down to bare maintenance level.

I must say here that I have reduced my drug intake considerably since the operation mainly by cutting all nebulised drugs. I have used my nebuliser for three doses since May. That was because of an infection, and that was more for comfort rather than desperate need. For Salbutamol and Atrovent, I now rely on pocket inhalers, but don’t even use those very much.

One of the effects of prolonged use of steroids at high doses is the production of cataracts. Since the lung operation, I have had cataracts removed from both eyes, with complete success if I might say. Increased heart rate and blood pressure are problems that other people have suffered, luckily I have not been adversely affected in these ways. Obviously, there are other side effects from these drugs, but I personally have no experience of them.

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CONCLUSION – ENORMOUS BENEFIT OF OPERATION TO PATIENT

To conclude, I would like to emphasise just how important this operation has been for me. Before the operation, I was having a breathlessness attacks at least once a week. These are distressing events, often involving a certain amount of panic. My wife and I learned how to manage these by using nebulised drugs driven by bottled oxygen. These events sometimes happened while out shopping, we must have frightened a few bystanders. Perhaps worthy of note is how rarely people offered assistance. Just to stand up from sitting in a chair was a huge effort. Walking more than a few yards was impossible.
Since the operation, I have managed with, the help of my wife, to regain my life. I am now more able to do shopping, visit places of interest, do some cooking. I am starting to think about driving again. In short, life is getting better for me.
What do I want in the future? I want a method to be found to facilitate tissue regeneration in our lungs, so scar tissue can be replaced with healthy membrane that can pass the required molecules in and out of the body.
In the mean time, I am more than happy to have what I have, thanks to my consultant, and the team, and all the other people that have helped, and that is time, hopefully for the future to happen in.