Back in November 2012, I wrote an article "Lung Volume Reduction using Pulmonary Valves. My experiences as a patient."
The content of that post is still relevant, and may help some of the new members.
So I decided to re-post it; Here it is:-
Lung Volume Reduction using Pulmonary Valves. My experiences as a patient.
johnwr 4 years ago 53 Replies
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.
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.
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.
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.
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!
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.
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.
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.
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.
Thank you for listening.