Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

New Applications for Treatment Options

The longer I work with those facing chronic and life-threatening illness the more amazed I am at the growth in technology and treatment options.  One of the great things is the ability to take something that is out on the market and find new applications for its use.  By finding new applications you save lots of time in the creation of a treatment modality and refinement becomes the priority.

As you may have read in an earlier article I attended a conference on COPD (Chronic Obstructive Pulmonary Disease).  While walking through the exhibits area I met Jasti Salem the clinical area manager for Electromed Inc.-SmartVest.  We began talking about the SmartVest for its use with COPD patients.

The SmartVest is a vest that vibrates and as it vibrates it loosens the mucus that is built up in the lungs, obstructing the airways.  This treatment has been used for a quite a while for patients with Cystic Fibrosis (CF).  Usually the patient wears the vest twice a day for about 30 minutes.  Jasti showed me the research study showing the positive results for patients with COPD.  The vest is light weight and washable.

It’s this type of collaboration and thinking outside the box that works in the patient’s favor.  By taking technology that already exists and adding new features that not only increase the efficacy of the treatment but the comfort for the patient is important.  When treatment is comfortable and easy you’re more likely to be compliant with your treatment plan and gain big results.  This leads to an increase in self-empowerment.  It allows you to increase your quality of life.  When you increase your quality of life you become more optimistic and optimism is a key player in the mind-body connection.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Having a Voice, living with chronic illness, Living with Illness

Shame On Advair

I think I mentioned last week that I had attended a conference on COPD (Chronic Obstructive Pulmonary Disease).  COPD is a serious lung condition that results in many using oxygen 24/7 as the disease progresses.  One of the keys to living with COPD is becoming aware of your body, your lung function and those things that trigger pulmonary problems.

I was watching television the other evening and an advertisement for Advair Diskus 250/50 came on with a man talking about having COPD.  He credits Advair Diskus 250/50 with restoring his lung function so he can engage in every day activities.  I got to thinking about the advertisement because I was shocked and angered.  The man is working in a wood shop helping his son build a boat.  He’s using tools that create dust and put wood particles in the air.  He’s using toxic paints and varnishes to seal the boat and this doesn’t take into account the fumes that are created by paint and varnish.

Is the maker of Advair Diskus 250/50 (GlaxoSmithKline) for real?  You think it’s okay to put this advertisement on the air?  Placing someone in an environment that could and probably will cause irreparable damage is irresponsible.  The fact that this man with COPD isn’t wearing a mask or a respirator is a violation of common sense, good judgment and you as a company being socially and medically irresponsible.

The drug may help someone breathe better, but does it give them license to put themselves in harms way intentionally?  Would you really recommend that someone place themselves in harms way and then to alleviate their respiratory distress use Advair Diskus 250/50?

I would hope that GlaxoSmithKline the makers of Advair Diskus 250/c 50 would be more responsible in their advertising.  It gives false hope and is irresponsible.

Have you seen advertisements that aren’t reflective of good common sense when it comes to illness?  If so, let us know so that we can address it!!!!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Doctors Should Give Patients More Credit

This weekend I attended a conference on COPD (Chronic Obstructive Pulmonary Disease).  I was grateful to the coordinators for putting on such a diverse and professional program for those facing this great health challenge.  I went because most of my background is in infectious disease, oncology and Alzheimer’s.  My mother-in-law was diagnosed with COPD almost two years ago so getting the most up-to-date information is crucial.

The end of the day gave us, the participants, to select on of three breakout sessions.  I attended the session on sleep apnea.  The physician giving the talk was terrific.  He gave great examples, was patient with the audience members, was clear and didn’t try to impress us with big words we may not care about.  I felt that he truly was delivering information we needed to hear.  Dr. Teofilo Lee-Chiong from National Jewish Health was trying to give us the information we needed to be able to converse as a more informed patient.

As I said the doctor was answering questions throughout the presentation and then a few questions in a row really stunned me.  Audience members began asking the doctor questions based on information they were given by their own physicians.  Dr. Lee-Chiong would say things like, “that’s not true”, “you can’t determine that information from the screening your describing”.  I was predicting a huge number of calls to doctor’s offices on Monday morning asking their doctors about the information they acquired.  So I ask you this, who’s right?

I believe in going to the expert.  I feel more confident getting information from someone who is in the trenches every day, conducting research, concentrating on a particular issue (in this case sleep apnea) and someone who has interaction with a high number of patients requiring that expertise.  Unfortunately, unless we’re in need of a specialist, most of us see doctors that aren’t fully equipped to handle the complexities of issues like sleep apnea.  Before Internists were Internists (requiring a residency and passing Internal Medicine Boards) they were often classified as General Practitioners (GPs).  I personally want the expert.  I don’t want the doctors to guess.  I want the information that is current.  Why were so many audience members given wrong information?  Was Dr. Lee-Chiong wrong?  How are we supposed to figure it all out?

Interview your doctors.  Don’t just pick their name from a book.  Get recommendations!  See what specialized training they have.  If you’re going to a teaching hospital ask the doctor if they’ve done research and could you see a copy of the study.  Things change so rapidly and so frequently that keeping on top of information is overwhelming.  That being said, doctors should give us the courtesy and respect to either pass along to someone who has the correct answers or at least say they will consult with someone before giving explanations for things that aren’t correct.  It diminishes our trust and faith in the doctors ability and skill.  I don’t know about you, but when I’m in need of medical care I want someone I trust that they know what they’re talking about.

What do you do when you get conflicting medical information?  How have you handled the opposing views?  What have you done to get doctors to speak to you as someone with a brain?