Greetings from India
I made it here in one piece, more or less. The very early morning temperature is 85°F and the dew point is just about the same – we are talking major league humidity. I have recovered from the obligatory jet lag, but not from the nasty viral infection I picked up along the way. The past few days have become a fever hazed memory. But I do remember reaching for the Tylenol bottle several times, whenever the fever went beyond 103° F. Otherwise, it has been lots of rest and plenty of fluids.
Today I am feeling better. The only pesky symptom still bothering me is chest full of congestion. I swear I am just about sloshing as I walk around. Any amount of coughing is not doing an adequate job of loosening all that gloppy phlegm in my lungs and bringing it up so I can get rid of it once and for all. Not being able to breathe freely makes me wheeze at the slightest exertion. Fortunately, it does not take much energy to type or search the web.
Breathing: something we take for granted most of the time
My situation is trivial – I know I will get better in a few days. I got thinking about you guys, your increased risk of bronchial and pulmonary infections that make breathing difficult at the same time you may also be trying to cope with CLL caused anemia (reduced red blood cell counts) that decrease oxygen carrying capacity of your blood. I can only imagine how hard it must be for people with chronic asthma, COPD, cystic fibrosis etc who have to struggle for each breath they take – and learn to live with this horror for the rest of their lives.
I wrote several years ago about Singulair and its potential usefulness in reducing pulmonary infections – hopefully by helping keep the airways free of excessive and overly thick mucus that cannot be dislodged by mere coughing. I know cystic fibrosis kids with lungs choking with thick mucus often require daily special chest massages to keep the mucus from congealing into huge lumps, keeping the mess fluid enough that they can try to get rid of it by productive coughing. Won’t it be nice if there was a mechanical way of loosening mucus in the lungs without these kids getting beaten black and blue in these “special massages”? Increased mucus production that builds up as stagnant pools of phlegm in the lungs and airways acts as a breeding ground for bacteria – which can lead to potentially dangerous infections such as pneumonia.
The mucosal system
True, the stuff you cough up when you are trying to clear your lungs looks gross in the bathroom sink. But the mucosal system is an essential part of the respiratory system. Mucus protects the lungs by trapping foreign particles such as dust, pollutants, allergens and even infectious bacteria that enter it during normal breathing. It helps keep the lung tissue supple and moisturized – so that it can do the job of expanding and contracting properly with each breath you take. There are a lot more specialized functions of the mucus that we do not have to discuss here.
In healthy individuals the bronchial walls are covered with hair-like “cilia” that wave and wiggle in unison, moving the mucus up from the bottom of the trachea into the mouth where it can be spat out. Patients suffering from chronic bronchitis or lung inflammation due to irritants such as tobacco smoke have more than necessary amount of mucus production. Airway inflammation coupled with excessive mucus production means air flow is reduced. If the body produces more mucus than the cilia can handle, thick gobs of the stuff builds up and pretty soon the cilia are held captive, unable to move. When things are working right, the body initiates vigorous coughing as a way of dislodging the mucus and breaking it up into more manageable size globs that the cilia can deal with.
The “Lung Flute”
Low and behold, someone has invented a simple mechanical device that may help the process of clearing excessive mucus in the lungs and airways. The background of the invention is disarmingly simple. It seems the cilia move at a particular frequency – 16 hertz (16 beats per second) – and if a similar frequency vibration is applied to the lungs and airways, it may give a helping hand and break up the mucus globs. The cilia can then get back to work moving the stuff up where a good bit of vigorous coughing gets rid of the stuff once and for all.
How to produce a humming vibration at the right pitch was not obvious but the solution that finally did the job was both simple and elegant. The “lung flute” was born. Blowing through the flute is thought to send the right frequency vibration through the lungs doing the necessary job of breaking up mucus balls into smaller sizes.
The “lung flute” is patented and can only be purchased with a doctor’s prescription. It has been in use in Europe and Japan for a couple of years. One of the uses is to help collect samples of phlegm from tuberculosis patients. Some clinical trials in the USA have shown it is as effective as present day standard treatments for COPD.
Does it really work?
I do not know. It sounds like a nifty idea, and at $40 dollars the gizmo is not going to bust your budget. It also is a mechanical device and not yet another pill to pop with its own list of adverse effects. The flute does not make music, so you don’t have to worry about not being musically talented. If what it does is make it easier for you to have productive coughing so that you can more easily bring up the gunk blocking your lungs, I think the $40 is well spent. Here is a popular science article on the device that describes how it is supposed to work.
I doubt I can get hold of the lung flute in time to help me kick this phlegm in my airways. I am not worried, I will recover on my own pretty soon. But if any of you guys out there are struggling with constant bronchial infections and having trouble breathing, you may want to check out this gizmo. The company website has instructions on its use and how to go about buying it. I think the need for getting a doctor’s prescription to buy it is just a way of justifying the price, giving the darned thing the glamour of being a medical instrument. If you do go to the trouble of getting hold of the lung flute, do be sure to write and tell the rest of us how it worked for you!
17 comments on "The Magic Flute"
Chaya, I am sorry that you are suffering, and I’m glad that you have found a possible solution. My partner has COPD and other lung nasties and I seem to have had some damage from FCr to my lungs- constant infections from December till August, like so many of us.
The good news is to those of us in the UK is that there is a gizmo from the NHS (i.e., free) that helps move the yuck- it says ‘flutter’ on the side of it, I have one here. Also exercises, which you can learn at clinic, involving deep breathing, and yoga breathing helps too.
Thank you for the article Chaya, and to you and the rest of us dealing with the phlegm good luck and fewer infections.
Sian:
I looked up “flutter” after reading your comment. Thank you. It seems to work on pretty much the same concept as the lung flute. Here is the link to a PDF that describes how to use the “flutter”
http://www.bedfordhospital.nhs.uk/upload_folder/patient%20information/how%20to%20use%20your%20flutter%20or%20acapella.pdf
Chaya
Thank you for the article.Is nice to hear news from you.It is so much time flying.We hope your recovery pretty soon.
Jorge/Ana
Chaya,
Hope you get better soon. Thank you for an important article.
Get well,
Monique
Congestion of any kind is tiring and annoying. Here’s wishing you a quick recovery.
The lung flute or flutter sounds like it could work. It does seem like you could make a 16 Hz whistle for a dollar or two.
Thanks,
Jim
Chaya — mercy, please take care of yourself … you are very special person to many of us with CLL … regards, dan
An I-Phone app that makes the vibrator resonate at 16 Hz would also do the trick.
I get concerned now especially during winter when that thick green stuff starts to come up. Since I already play the Great Highland Bagpipe, this little lung flute thingy should be a breeze!
Dear Chaya
I have been delayed from emailing you on another matter because of a chest infection. I had pneumonia in the past and an ITU experience. Please check that you do not need Septrin as PCP is quiet silent when the chest is examined and it usually relies on a viral infection first. My current infection needed high dose Septrin and the chest is clearing well.
Any device which helps full lung expansion and movement of mucus with a harmonic fequency of 16 Hzs (to be proven) is worth considering when infection has been ruled out. Please do not over look steam inhalation as this has been a classic way to clear mucus from the chest.
Bagpipes have been mentioned and I am sure that the frequency is well covered with this instrument.
I wish you well and will be in contact soon.
Terence
Chaya get well soon. I might throw in for anyone with lung congestion to stay away from dairy while ill which creates a lot of mucus.
For the person with COPD my experience with my husband was interesting. He and I were against him taking inhaled steriods. He never was on oxygen. Everyone of the people in pulmonary rehab on oxygen had taken inhaled steriods and when they did get pneumonia ended up on oxygen. (I did an informal poll) The pulmonologists never agreed with us, but had to do what we said. But he just used a nebulizer several times a day. Copd was very advanced but that was the least of my husband’s problems.
Marilyn
Chaya, thanks for your insight. Having lived with CLL for 22 years now, I am familiar with lung problems. In my case it was diagnosed as bronchiectasis, but the symptoms are the same as COPD and they may be manifestations of the same condition. I was on Singulair for years, as well as trying Advair, Symbicort, chest massagers, nebulizers with hypersaline, and the device you describe, which is called a flutter valve in my neck of the woods. Then something really strange happened. For a completely different problem, sleep apnea, my doctor had me tested and then prescribed a CPAP machine with humidifier to help with my breathing at night. In a few months, the symptoms of bronchiectasis decreased and then disappeared! I have now been using the CPAP machine for almost two years and my lung function is much improved. I stopped using all the other devices and drugs except for Symbicort, and I probably could stop that but I think it still has some benefit. None of the doctors are sure why the CPAP worked this way, but don’t look a gift horse in the mouth!
By the way, my last CLL treatment was FCR in 2006-2007 at MDA and locally. It cleaned out my bone marrow once again, but after 3 years the CLL cells in my bone marrow are 13% of the total with a doubling time of about 4 months. My oncologist at MDA and locally are going to put me on the Arzerra (ofatumumab) protocol starting this month. They believe it may be more effective than the single-agent Rituxan we tried in 2005, mainly because of the higher doses with this drug.
Best wishes to you in India and on your move to Maryland.
Bob
Los Alamos, NM
Chaya, take care of yourself nothing worst than having chest problems on a hot climate.
I suffered from such problems throughout my life, excess production of mucus and infections always followed having to have antibiotics.My sinus problems were horrendous for years, and used to take antihistamine very regularly.
Then sometime during my late forties or early fifties my son mentioned a connection between dairy products and over production of mucus, I researched it and found that might be the course of my problem as I used to drink cows milk and cream in great quantities.
Since I did a full cleaned up of dairy products I am glad to report I have not had a sinus problem or any such related problems for 20 years, I do eat cheese and cream in moderation but only goat milk for my drinking chocolate.
A well informed friend of mine once told me that when a baby has a congestion, the milk is stopped and only water is given to the baby to help clear the mucus congestion.
During my three months in Brazil doing voluntary work I had the luxury of having therapeutic massage twice a week,the practitioner put me through a very rigorous practice of breathing exercises, something I keep today even though no as strict as she made me do then, I think over all the combination of things has helped me to be free of those old problems for the past 20 years. Even with CLL I can only recall two minor colds during the last 8 years and non of them needed any medical treatment.
Glad you got the energy to keep us informed.
Get well soon
Best Regards
Chonette
(Just back from a week in Houston and a week in Mexico city)
18 months post SCT
Chaya – hope you feel better soon! Crossing our fingers we don’t get anything like that this flu season. Can be brutal in the Midwest! I will pass along this info to my friends. Just love the idea of something non-pharmaceutical as a solution!
Barb & Blair
Hi Chaya
Jolly interesting. As a mountaineer I’ve found the fairly regular chest infections after two chemo treatments to be somewhat more than a scunner. In a recent trip to the Alps I caught bronchitis and could have done with a lung flute. Fortunately on what was quite a long trip I was able to build up pleanty of extra red blood cells which meant that I seem to throw off the infection with the help of antibiotics pretty fast.
Hope you get better soon.
PS I have also enjoyed climbing in India before I was diagnosed with CLL but I’m not sure I would risk a trip to the Himalayas now a days.
Kindest Regards
Speaking of phlegm — I have had episodic difficulty across the years with feeling like I am choking on my own secretions. I had some relief removal of my [??CLL-filled??] uvula, then, when the problem returned, some relief after removal of my [documented] CLL-filled thyroid. The problem returned again recently, and this time I was found to have clumps of lymphoid tissue at the base of my tongue plus nearby enlarged lingual tonsils. After consultation with four various specialists it was concluded that surgery was too dangerous in my case [I lost 2 units of blood during the thyroid surgery], but I have had considerable relief with over-the-counter guaifensesin tablets. Now I begin to feel like I am about to choke but then feel the mucus/ phlegm/ whatever slide down my throat despite the obstructions. My current dose is only 400 mg per day, but I have been told that, as long as I can steer clear of nausea, the top dose is 2,400 mg per day. I do not know how many other CLL patients have the problems I have been having with excess lymphoid tissue in and around the throat, but your note on the Lung Flute prompted me to mention this OTC solution for a related problem.
PS: I strongly recommend that anyone with CLL have a pre-emptive consultation with a pulmonologist. When I had my first consultation years ago, the pulmonologist commented, “I usually meet people like you in the ICU.” My response, of course, was, “That’s why I’ve come to see you while I’m still healthy.” In order to keep at least one step ahead of pneumonia I’ve added meds year by year — and now use salmeterol, theophylline, and pentoxifylline, plus L-arginine to suppress CLL-related pulmonary hypertension. I feel great, but notice breathing problems almost immediately if I skip any of these “ingredients”.
Chaya: Get well soon. My brother was told he has Cll three weeks ago. I am trying to learn everything I can about this condition. I worked in hematology-oncology for two years at Duke. This was a new disease for me and for Gerald. It really is informative to read the comments that others leave on this site. Thank God for you and your followers.
Best Wishes, Brenda W.
Dear Chaya, Thank you again for taking care of this site. I am intriged with the notes people have written in. How many patients diagnosed with CLL have also been diagnosed with bronchiectasis and /or proliferative lymph disease? I have read that skin cancer is common in CLL patients but are there other diseases we are susceptible to? Just curious. Anna
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