Pulmonologists and COPDers – take note – patients really do WANT to be educated and too many physicians are shy about encouraging patients to exercise and WHY WE MUST EXERCISE to have a life.
Following is the noted exercise guru for the COPDer, Mark W. Mangus, Sr., BSRC, RRT, RPFT, FAARC of San Antonio, TX answer to a patients question about her FEV-1 and FVC decline. Mark’s answer was posted on my online support group, EFFORTS. www.emphysema.net.
A gentle reminder that Mark had to move beyond traditional COPD treatment because his daughter, Kim, born with Cystic Fibrosis was not helped by traditional medicine methods for lung patients. Kim’s only hope was to stay alive until she was old enough for a lung transplant. She has had double lung transplants now and currently works for Vanderbilt Medical Center.
I wrote about their miracle story February 6, 1011 http://pugetsoundblogs.com/copd-and-other-stuff/2011/02/06/meet-a-copders-guru-and-lifesaver-mark-w-mangus-sr-bsrc-rrt-rpft-faarc/
Hi _ _ _,
First, let me say that there is nothing you can do to stop the decline you
are experiencing in your FVC and FEV-1, though you CAN slow the inevitable
progression to some (unknown) degree by exercising increasingly VIGOROUSLY
as you embark on your pulmonary rehabilitation effort.
Your stress testing and echo tell a story of long developing pulmonary
hypertension which has advanced with poor intervention with regard to timely
detection of hypoxemia and earlier oxygen therapy support. Your breast
cancer bout and treatment are potentially responsible for part of what you
are currently experiencing. Radiation treatment is notorious for triggering
a process of radiation fibrosis, though it usually happens more profoundly
in treatment of lung cancer than more superficial cancers like breast
cancer. But, if lymph nodes under your arm were irradiated – in other words
- the radiation was applied broadly over an area larger than simply the
breast tissue, chances are that you are seeing some effect from that. A
high-resolution CT of your lungs, maybe with enhancement, if deemed helpful,
might better illuminate the presence of fibrosis and its extent and progression.
Your FVC has dropped disproportionately with your FEV-1, the FVC dropping by
almost double that of the FEV-1 during the same period. This is also
suggestive of the possibility of fibrosis. As well, your DLCO being reduced
to around 30 % of what it should be AND the confirmed and significant
hypoxia discovered with your walking and sleeping oximetry tests correlate
with the reduced DLCO and FVC. The reduction in FVC is yet further
suggestion of a restrictive process being combined with your obstructive
lung disease process.
I am disappointed that your 6 minute walk was conducted as it was, but,
unfortunately, not surprised, as it is one of the most variably conducted
tests done in this area of medicine. You SHOULD have been allowed to
continue – hypoxia detected or not – as long as you were able to AND at a
pace that YOU chose. If monitoring was to be done, then it should have done
no more than to document the extent of changes – NOT signal a point at which
the clinician decided to stop you and THEN to totally alter the validity of
your test by setting your pace! So, the 620 feet you walked is meaningless
to determine anything with regard to the clinical state of your disease
and the limitations it imposes upon your ability to ambulate or to
extrapolate any determination of functional adequacy. None of that is your
fault. It is due to the poor understanding of the test purpose and method
on the part of the clinicians.
Your sleep saturations are very telling of significant hypoxemia that is
more likely associated with your fibrosis and pulmonary hypertension.
Pulmonary hypertension aggravates hypoxia, making it worse, which in turn
makes the hypertension worse, which in turn, makes the hypoxia worse . .
You can see where that is going. That is why you bottom out so low at 78 %
First, I hope that 2 liters during sleep is keeping you saturated to at
least 88 % as a bottom low point. If you have not had a follow-up sleep
study to determine the effect/benefit of the oxygen during sleep, you should
push for it to be done. You should ALSO be using oxygen for ALL ambulation
and exertion – and possibly more like 4 to 6 liters – as I’m doubtful that
any less will saturate you adequately to counteract your pulmonary
hypertension. Treatment of the pulmonary hypertension should be a point of
primary focus for you and your medical team. Oxygen, at this point is the
most powerful and effective treatment you can use to slow the inevitable
progression towards profound heart failure you can expect if the pulmonary
hypertension is not controlled a LOT better than it has been over the recent
past. That wll likely ‘do you in’ a whole lot sooner and with much interim
misery than the combined lung disease process that has caused it.
It is good that you are starting a pulmonary rehab program. I am surprised
that they don’t have a pulmonologist directing the program. Do you know
what kind of doctor is acting/serving as their medical director? Make the
most of it. Push hard to learn to work against the difficulties of the
breathing symptoms that accompany your disease, especially at this point.
Don’t let the staff hold you back because of hypoxia. Push them to give you
all the oxygen you need to be able to push yourself to the maximum. Short of
such an effort and you will be mostly spinning your wheels. Working hard to
breathe and overcoming the difficulties and fear it can impose upon you are
not easy. NEVERTHELESS, working hard to breathe – even when it makes others
uncomfortable to watch you work so hard – will NOT harm you, despite what
many might opine. It may ‘feel’ like it’s gonna kill you. HOWEVER, it will
NOT! It is not an easy path you must travel. But, others have traveled the
same path. The good news is that you still have 29 % FEV-1. That might
creep back up to 35% with hard work. AND, it would be worth it because that
little 5 % raw change represents a 20 % change in your overall FEV-1.
If you have further questions as you go along, I am happy to try to answer
them for you. Best Wishes, Mark
Mark W. Mangus, Sr., BSRC, RRT, RPFT, FAARC
San Antonio, TX
COPDers, a new study indicating what I have shouted about for years – recumbent cycling (trike)…
“…This study showed that an eccentric cycling protocol based on progressive increases in workload is feasible in severe COPD, with no side effects and high compliance…”
COPD. 2011 Jul 5. [Epub ahead of print]
Eccentric Cycle Exercise in Severe COPD: Feasibility of Application.
Rocha Vieira DS, Baril J, Richard R, Perrault H, Bourbeau J, Taivassalo T.
Respiratory Epidemiology and Clinical Research Unit (RECRU), Montreal Chest Institute, McGill University Health Centre, Montreal, Quebec, Canada,1.
Eccentric cycling may present an interesting alternative to traditional exercise rehabilitation for patients with advanced COPD, because of the low ventilatory cost associated with lengthening muscle actions. However, due to muscle damage and soreness typically associated with eccentric exercise, there has been reluctance in using this modality in clinical populations. This study assessed the feasibility of applying an eccentric cycling protocol, based on progressive muscle overload, in six severe COPD patients with the aim of minimizing side effects and maximizing compliance. Over 5 weeks, eccentric cycling power was progressively increased in all patients from a minimal 10-Watt workload to a target intensity of 60% peak oxygen consumption (attained in a concentric modality). By 5 weeks, patients were able to cycle on average at a 7-fold higher power output relative to baseline, with heart rate being maintained at ∼85% of peak. All patients complied with the protocol and presented tolerable dyspnea and leg fatigue throughout the study; muscle soreness was minimal and did not compromise increases in power; creatine kinase remained within normal range or was slightly elevated; and most patients showed a breathing reserve > 15 L.min(-1). At the target intensity, ventilation and breathing frequency during eccentric cycling were similar to concentric cycling while power was approximately five times higher (p = 0.02). This study showed that an eccentric cycling protocol based on progressive increases in workload is feasible in severe COPD, with no side effects and high compliance, thus warranting further study into its efficacy as a training intervention.”
[PubMed - as supplied by publisher]
COPDers–talk to your doctors- get educated and educate them to what patients CAN DO.
Thanks for reading… Sharon O’Hara