Friday, December 10, 2010

Spirometry - Pulmonary Lung Function testing (PFT)

Who should have a lung function test?

Spirometry machine used to perform a PFT

Spirometry is most common of the pulmonary function tests (PFT), measuring lung function, specifically measuring the amount of volume and/or speed flow of air that can be inhaled or exhaled.
Spirometry is an important tool to assist in accessing lung condition, lung health issues and lung function.
In the photos below;

One of the many pulmonary function tests I've endured to determine the complex lung health issues of my diagnosis of "Mounier-Kuhn syndrome". This time though, I was asked if a class of nurses could observe my testing. 

I hope they walked away with further information on the importance of this spirometer equipment, and never forget how they were enlightened about what in the world MKS is!

Who then should have a lung function test? 
(Hint; Watch the movie below, for you'll be surprised ....)


Friday, November 19, 2010

The importance of respiratory physiotherapy

We've been remiss for the past little while to post here, but assure you all will become much more active in the near future. We have much to share, and apologize if you've yet to hear back personally via emails, those too will be caught up very shortly. 

In the meantime, we'd like to share this brand new video clip produced by Dr. Roger Goldstein, the respiralogist in charge of the (cutting edge) respiratory physiotherapy program I attend twice weekly here in Toronto. Patients from all over Canada travel in the hope of being assisted here. 


Although this clip focuses on those with COPD, all those who attend the in or out patient program at Westpark Hospital actually represent many assorted and various lung diseases, and not just COPD. 

I spent seven weeks as an inpatient, living at this physiotherapy hospital almost two years ago now, the best thing to come my way since my diagnosis with "Mounier-Kuhn Syndrome" for sure! My wife jests with me often that it compares to the "Hotel California", because one can always get in but never leave. And I've never left, that's true. Even the staff there have informed me - I am theirs now (forever more), with at least one mandatory yearly inpatient refresher course to monitor my lung and overall health for continued care through both pre and/or post transplant.

My initial hospital exit pass from that seven week stay was only offered under the condition I promised to continue with three more months of twice weekly out patient sessions. These though have remained a constant necessity as the staff feel my case renders a longer and more continuous flow of monitored and charted health care. 

Here is where I admit, this hospital has steadily become a lifeline to me with care and support like no other, with staff (same as shown in the video who also care for me), and patients also suffering from lung disease who absolutely "get" what I'm also having to deal with. 

Thank you Dr. Goldstein for implementing this program, and for all other respiratory doctors across Canada who are bringing it to other cities in order to assist others with lung diseases. 





Friday, October 15, 2010

Now we are SIX

Two more people have made contact with us, two who have themselves also been diagnosed with Mounier-Kuhn Syndrome. 

Now we are SIX.

With each new contact, sharing information often becomes enlightening. For instance, take a peak at the comment introduction underneath of our "Hypoxia Altitude Simulation Testing" post.

From commentor "K" leaving a wonderful post of introduction, with that he/she has left two golden nuggets in the wake of posting. For instance, we had never heard of;
"Tracheobronchomalacia", a medical diagnosis strikingly similar to that of MKS. And then, secondly, we had never heard of ;
"Tracheobronchoplasty"; surgical central airway stabilization with posterior tracheobronchial splinting using a polypropylene mesh improves respiratory symptoms, health-related quality of life, and functional status in highly selected patients with severe symptomatic TBM.
Our thanks to "K" for posting these two tidbits of information from the personal story offered. This was great information to add to any MKS patient's portfolio, especially the latter when it comes to seeking a better quality of life when degeneration becomes of serious concern. 

For someone like myself, someone who is actively in the hands of an organ transplant surgeon, there are hopeful bits of information for alternative solutions which come our way definitely worth a personal research.




Speaking of appointments to continue tracking degeneration and future possibilities, we attended such an appointment this past week, once again reaffirming the fearful thought of being someone who must endure a double lung transplant. The prospect of such a life saving, yet life threatening operation and recovery, is overwhelming. 


Questions on the notepad for the next appointment continue to be jotted down, two at this time new for inquiry are;

- We cannot seem to find whether or not I was tested for a blood testing to check on my "CRP" levels,  which is invaluable for seeking levels of inflammation in the body. The normal level is "10" or under, and some folks with respiratory disease can show levels of over "200". When the body fills with additional stressors such as inflammation to extremes, it just becomes one more thing to contend with, and one more thing to create even more concerns over. 

- Tracheobronchoplasty is something we've now spent time researching, and though like all surgeries it does sound risky in many ways, the medical data around the internet offers information that four MKS patients have successfully sought this alternative surgery for better quality of life and the ability to have a greater pulmonary function. 

(So there are also three more out there somewhere sharing this disease...)

"K" our commentor did mention he took approximately six months for a total recovery and how it has assisted in greater wellness. Others can take from 6-9 months for full recovery from what we've read on this individualized medical surgery.

For further study, here are a few live links below you can click on concerning the topic of Tracheobronchoplasty, that is, if you care to read and research this topic on your own;



Thursday, October 14, 2010

Autumn; a time for colds and flu right around the corner now



Autumn...

In Autumn, there is beauty everywhere one looks. 

Mornings are crisp and cool, not so great for those suffering from lung disease. It hurts to suck in cold air, caution is necessary when breathing outdoors. 

This is the time of year when everyone seems to get a cold from the change of season, those very cold mornings and hot afternoons, when no one is really acclimatized just yet to the great temperature variations.

The flu shot clinics begin, and masks fast become the norm for people like us who have to protect ourselves from illnesses and the possibility of swift rolling lung infections that knock us over medically and can present very serious complications to our very lives. (And for those who have suppressed immune systems, or are extra sensitive to illness, please be very careful if you know someone who has recently received the flu mist, as it is still contagious for up to three weeks afterward.)

Simple protection in a home filled with children/teens becomes necessary, either for those who are well to avoid those who are ill, or to isolate the sickies from the rest of the family/friends. 

"Shoppers Drug Mart" in Canada is a large pharmacy store, one which stocks several types of surgical masks in their health section. 

At this time, we have two types in our home; super surgical masks with elastic side to wrap around the ears, or a lighter mask with double tie options. 

Everyone here seems to prefer the elastic around the ears, however the double ties are great too for those who prefer to avoid tension for any tenderness around the ears. 

The only draw back that we've seen so far is how easily the ties can rip off, or the feeling of clumsiness to get them tied up in the first place. I think when the tie backs are all used up, we'll resort to only have the elastic ones around here. 

If you are a mask user, which type would you prefer? Or can you recommend another type of surgical mask for those who require protection from sickies in their midst? Love to hear from you. :)





Friday, September 24, 2010

Hypoxia-altitude simulation testing

Air travel and respiratory disease. 

** Hypoxia-Altitude testing...ever heard of this test before? 
Neither had we, that is until the referral came from the respiralogy doctor advising it beneficial to have. The telephone call this week notified of the test on October 1st. 

Should it be a concern?  YES!  And we're very interested in hearing from any individual out there who has already had this test performed.

How does this affect someone with a respiratory disease? 

Since even a normal and healthy person can desaturate when altitudes are reached by flying, a person with abnormal lungs (read - lung diseases), can become particularly vulnerable to risk factors such as abnormal spirometry. Those patients with a resting oxygen saturation below 92% or 92-95% on air with additional risk factors are recommended to have a formal hypoxic challenge test to identify whether they are able to compensate for the altitude.  
What is this test exactly then?
"Hypoxia-Altitude Simulation Testing is used to to assess acute cardiopulmonary responses to the inhalation of hypoxic gas mixtures (equivalent to the inspired oxygen tension (PO2) present at 5,000, 8,000, and 10,000 feet above sea level) alone and in combination with supplemental oxygen (O2), also measuring arterial blood gases."
  

Highly recommended to those suffering from lung disease. Why not ask your doctor to refer you if flying is of concern for you? 

You can find out more about it here;
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Tuesday, August 31, 2010

Owning a personal Oximeter

We're in the middle of a heat wave here in Ontario, and the humidity is something else the past few days!

During times such as these when indoor living and ultra dependence on air conditioning enters the big picture, there are little reminders everywhere on how this type of climate affects folks with respiratory diseases.

The topic of air quality fills my husband's respiratory physiotherapy ward. Cautions are at the helm of his days to keep indoors.

Today, another little reminder remains in our focal point on our bathroom counter, right next to the blood pressure cuff machine.


The FED Ex man brought a little package. Such a fast delivery considering I only ordered it yesterday and it came all the way from Montreal, Quebec today.

Impressive!


This cute little device is modern technology at its best! So small and so cute! Can you guess what it is?


It's a finger oximeter machine.

Told you it was new and smaller, a wee one that rests on a finger and can calculate both oxygen levels and pulse rates.

It was strongly recommended, suggested in a stern way in fact, that my husband now requires the use of one at home to keep an eye on his oxygen levels at any given moment. Morning, noon or evening, we are going to be investigating why he plummets suddenly and hope to be able to begin charting differences in oxygen readings from various times of the day.

If anyone out there has a respiratory disease and can benefit from this little baby, here's the information for you below.

This is product number; NN9570 - GO-2 Oximeter, blue.


We found them available from both the
Proresp company, and Roxon Medi-tech. For a store near you, contact Proresp using their website or to place a FED Ex order right from the company directly to your home, try;
Roxon Medi-tech
(514) 326-7780
Just a warning though, both companies preferred a referral by way of a hospital, doctor of any sort, something likened to a prescription before they would sell one to assure a necessity on the patient's part.

The cost was steep. It was 183.00 Canadian with shipping and taxes included. But for a little peace of mind and a whole lot of respiratory care, this medical device is a health staple, offering incredible benefits to the user.

We've all tried it on for size, and numbers. Standing or laying down seem to produce changes in the numbers, so all have also tried both. Normal is 98-100% just in case you don't know that. (wink)

When I tried it on, I guess I was so excited about this cute bug, and trying to take the photos, my husband told me my pulse was a bit too high. smiles...


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Wednesday, August 11, 2010

Hand hygiene, a forgotten art.



Every time I attend one of my husband's hospital tests and specialty appointments, there are copious amounts of signage to direct folks towards hand washing stations or antiseptic and/or antibacterial hand pumps. 

There have been instances while enduring long waits, either for myself, my husband or both of us, when we sit quietly and observe the activity around doorways and biways, and especially elevator entrances. 

Much to my chagrin, I can honestly report, the worst offenders are not those who are attending appointments because they are suffering from disease, rather I have found some clerical hospital staff will use preventative measures in donning a mask if you dare go near to them with a lung disease induced cough, because they aren't aware one is not contagious. 

Still worse, and on the flip side, many of the doctors and most hospital staff I've observed are completely ignorant to their own preaching about the importance of washing their hands in hospital and patient settings. 

Three weeks ago, I took our visiting daughter to emergency for a bug bite when a severe reaction became out of control. While waiting in the emergency department to be seen by a doctor, I was able to observe the flurry of activity and the hubbub of hustle and bustle as patients entered and hospital staff attended to those in their midst. 



Rather than to throw caution to the wind, I was amazed once again to note attending physicians roaming from curtain to curtain and not washing their hands in between, before touching the next patient when deemed necessary. 

I suppose I've earned a loving reputation for asking a doctor not to touch anyone requiring care who happens to be in my midst before moving to the sink and washing up. It used to be the rule, no touching and observing a patient unless you wash your hands first. These days, many do not. 

Superbugs aside, what about the respiratory wards then, when hospital staff run amock and not pay attention to the signage themselves? 

As the wife to a man suffering from lung disease, might I suggest to you or yours that the discomfort of uninvited (polite) confrontation is a necessary evil when one is looking out for their loved one. In fact, silence could be mistaken as acceptance when nothing is uttered. 

Oh sure, admittedly it's not the most comfortable process to be placed in a position to forge forth and kindly request they please mind washing up before examination, noting it is nothing personal of course to them, rather you're just trying to keep up the protection of your loved one. 

Smile lots and be sure to keep a cheery voice. And to be sure, there is absolutely nothing lost but plenty is gained when avoiding possible in-hospital illness and other disease through germ carriers within medical staff. 

If you're not certain on the importance of this little tidbit of attention to health detailing, here is a link directing you over to the Canadian Lung Association's article entitled; Fight germs and wash hands properly.

Saturday, July 31, 2010

Tuesday, July 20, 2010

Welcome...

There is little by way of support for this rare disease called; "Mounier-Kuhn Syndrome", either around the globe or within the big wide system of cyberspace.

Hoping to cross the universe by way of this humble little blog on the intensely personal subject, reaching out toward others with the same diagnosis of said disease, or one of the three other lung diseases which one becomes predisposed to over time from the onset of MKS;
"Bronchiectasis, Pulmonary Fibrosis, Emphysema".
Unfortunately my disease has reached a stage whereby I've recently visited a lung transplant surgeon, and the preliminary red tape towards the latter end stage of my disease, quite literally rocking my world. 

The process has begun for me towards this next step in my medical journey.

Therefore, I would love to hear from you if you are also perhaps from a medical team and/or a transplant team who has questions or suggestions. Maybe you have a story to share of a loved one with a lung disease and can offer encouragement, support, good cheer or a few warm thoughts from knowing those who have walked similarly before me.


Please come again, and feel free;
  • to bookmark the blog at the link HERE
  • pass along the blog address to others who might hope for lung disease information or support 
  • email this blog post or blog address to others who may be interested in lung disease issues
  • help us to link-up to others to offer the world some sorely deserved "Mounier-Kuhn Syndrome" awareness
  • become a follower of the blog so keep abreast of news and information for others with lung diseases
  • or simply offer prayer for all those afflicted by lung diseases in general.
  •  drop us a note and introduce yourself. Maybe you can offer a suggestion for this blog. Either way, we'd love to hear from you. 

    Thank you so much for visiting this day!



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    Monday, July 12, 2010

    The sunsets in our days ...



    "Slip away and watch the sunset."

    ... there are more calls to finish

    "Those will wait. The sunset won't."


    ~ The Guardian, Dee Henderson




    For you who suffers from the effects of a lung disease;



    When breathing becomes labored
    know there is another who 
    suffers similarly as you

    Life is precious
    Be thankful for all life's moments
    And hug the ones you love often

    When morning's sunrise appears
    and the lungs beckon attention to clear
    the day will always offer you 
    multitudes of blessings 
    and copious amounts of good cheer

    No matter how tough your moments
    There is always a beautiful sunset 
    most guaranteed to be
    an exquisite crowning glory to your day

    Attitude counts!
    What will yours be like today?