Tuesday, May 22, 2018

Our Blog Has Moved

I have moved this blog to my personal advocacy services site: Metis Advocacy.  To read past blog entries and new ones, please click here.

Thanks to everyone who has been reading this blog and I hope that you continue to follow the rants and observations from The HealthScare System!

Friday, April 20, 2018

The Importance of Tracking Your Symptoms

Why track your symptoms?  

Well, have you ever visited a doctor and they asked: “How often have you been having this symptom or that?  How bad has it been?  Is there anything that makes it better or worse?”

If you’re like most people, it’s really difficult to remember all of this and more so if you’re not feeling well.  And, as you try to remember back more than a few days, it can get very fuzzy, very quickly.  Sadly, practically no one keeps a log of their symptoms except, perhaps, for diabetics who track their BGL and hypertensive patients who track their blood pressure.

But without accurate information, it’s hard for your doctor to make a good diagnosis and propose the right treatment.  For example, how is a doctor supposed to treat a headache which can have, literally, hundreds of causes?

When I was much younger, I had very bad headaches but I knew that they were not migraines.  I asked my doctor what could be causing this.  He said: "It could be stress...It could be a brain tumor.  Let's run some tests." (I know that sounds harsh.  I happen to like dark humor like that and appreciated his candor.)

Now imagine I came into his office with a log of my headaches for the past 2-3 months.  The doctor probably wouldn't have to run as many tests and could possibly diagnosis it right there and then.  And with a proper diagnosis, I would have received the correct treatment.  

The alternative is also true.  Without clear data, the doctor could have made an inaccurate diagnosis and given me a treatment that not only could have been ineffective, it could have actually been harmful.

So, here's what you should log:
  • Date
  • Time of Day
  • Symptom type (e.g., pain, dizziness, blurriness, breathing problems, etc.)
  • Location of the symptom (e.g., back of the head, chest, left kidney, neck, etc.)
  • Intensity (on a scale of 1-10)
  • What makes it worse
  • What makes it better

That's it.   You don't need to create charts, graphs, or have a lot of complicated information.  The idea is to keep it simple so that it's easy to log your symptoms and easy to read by those with whom you share the info.

That leads to the last, and perhaps, the most important aspect of a symptom log.  It must be easily shareable.  You will want to share it with your healthcare providers, family or other caretakers.  And the simplest way to do so is via email, text or printing.  Having a digital log (e.g., spreadsheet, word doc, etc.) is obviously the best format to enable easy sharing. 

There are many apps on the market that do this.  Most are very complicated and hard to use.  I believe that my app, My Symptom Tracker, is the simplest and easiest way to track your symptoms and share the info.  I invite you to check it out:

Click here:  My Symptom Tracker

Saturday, April 14, 2018

Diabetes 2 Is Like Having A Job

I have diabetes type 2.  To say it's been a struggle is an understatement.  I love bread, pasta, cereal...basically carbs.  Last fall I had a rude awakening and my A1c jumped to very high and dangerous levels after stable for quite some time.

After having the "scary talk" with my new doctor and being put on a new medicine cocktail (but no insulin), I re-committed myself to diet and exercise.  In three months, I dropped ~8 pounds and lowered my A1c to 6.5.  Quite an accomplishment.  She was amazed and I was very proud.

And then 2018 hit.  Stress eating returned. Lots of stress in January and February.  Then my wife and both struggled with illnesses throughout March.  I was forced to take a steroid for a week.  I ate like crap and couldn't exercise (bronchitis).  Late night snacking, too.  I put on a few pounds.

So, I saw my doctor yesterday and I got the results that I expected.  My A1c had jumped dramatically and I gained back some weight.  Then I got the lecture.  "Diabetes2 is a progressive disease...you have to get back to eating better...exercise more..."  Blah, blah, blah.  Heard it for years.

But then she said something that really hit home:  "Diabetes 2 is like having a job."

You can't go to work on a Monday and do your job well.  Then on the next day, tell your boss that since you did so well the previous day, you are not going to work today.  You need to do your job EVERY DAY or else you'll lose your job.

Diabetes 2 is just like this.  It's a job that you have to do each and every day.  Eating well and exercising yesterday doesn't excuse one from the obligation to do the right thing today.

So, I am now I have to start thinking as if Diabetes 2 is my permanent job.  The big difference is that instead of just losing my job if fail to work consistently, I could lose a foot if I don't do my Diabetes job.

That's pretty good motivation!

P.s. - Last night was day 1 without late night snacking!

Monday, March 26, 2018

Reasons Why You Need A Patient Advocate #14: Emotions

Even if you are a healthcare-literate, intelligent person, caring for yourself or a loved one can be a very emotional situation.  As we all know, when emotions run strong, it can be very difficult to make tough decisions.  The logical part of our brain simply gets overpowered and pushed aside.

I experienced this exact situation yesterday.  My wife has been suffering from the flu for the past 9 days.  It has really hit her hard.  Her fever has been spiking for almost the entire time.  And a couple of days ago, she developed a new symptom, a very sore throat.

Even with all my experience and training, I felt uncertain about the best course of action.  Should I take her to urgent care or not.  I decided to use the UCLA nursing phone service and spoke with a nurse practitioner.  She didn't tell me anything that I didn't already know.  But she was able to be objective and provide some very needed perspective on the situation.  It was incredibly helpful and calming.

Today, I recognize that my emotions were clouding my usual, confident, decision-making abilities.  This is a very common experience for caregivers.

Caring for a loved one who is very ill can make one feel helpless and alone (even if other people are around).  A patient advocate (in this case, the NP) can be invaluable to help one assess and process the current situation.

(Reasons Why You Need A Patient Advocate #14:  Emotions)

Friday, March 23, 2018

It's Easy For Doctors To Be Cautious...

An alternate title could be:  "How to waste a few hours and hundreds of dollars".

My wife has the flu. After a few days, I take her to her PCP.  They confirm that she has type B but it's too late for Tamiflu.  The oximeter was showing a lower O2 saturation of 91%.  But the X-rays were negative for pneumonia and her lungs were clear.  Just to be cautious, the doctor said that we should consider admitting her and the only way to do that would be to go thru an ER at a local hospital.  We drive 15 minutes, check into a very crowded (and scary) ER. They put an oximeter on her.  Her 02 is 98%+.  So we go home. No medicine necessary and nothing to do but for her to ride out the flu.

The doctor's visit cost me only $25.  The ER visit will probably cost me $300 since I have a PPO. 

I know that the flu can kill and it often does so thru respiratory distress.   I also realize that doctors are trained to be risk adverse.  My instincts told me that the doctor was overreacting.  Being too cautious.  And yet, I didn't want to put my wife in jeopardy.

An episode like this highlights a common dilemma faced by millions of patients every day:  how do you balance risks against financial costs?

Without a financial barrier, everyone would seek medical care for every symptom whether it is urgent or not.  That would strain the system to its breaking point since we barely have enough healthcare providers to deal with the current usage of the system. 

And yet, plenty of people are taking unacceptable levels of risks to avoid a large bill for a service that may or may not be necessary.    Hindsight is always 20/20.  It is easy to measure the risk/gain of a large bill for an unnecessary ER visit after the fact.

We trust our doctors to give good advice.  Ultimately, the patient has to make their own decisions.  But that is like asking an average person whether or not to raise the Fed Rate. A typical patient just doesn't have the expertise to make well-informed and educated decisions. 

Did I make the right decision to take my wife to the ER?  Definitely yes.  Will I hate paying the bill when it comes?  Certainly! 

Monday, March 19, 2018

The Easiest Symptom Tracker Is Now Live!

My Symptom Tracker app for iOS is now live! It's the easiest way to track your health-related symptoms and share it with your health team!

Why track your symptoms? Well, have you ever visited a doctor and they asked: “How often have you been having this symptom or that? How bad has it been? Is there anything that makes it better or worse?”

If you’re like most people, it’s really difficult to remember all of this and especially so when you’re not feeling well. But without accurate information, it’s harder for your doctor to make a good diagnosis and propose the right treatment.

That’s why you need My Symptom Tracker! With this app, you can:Easily keep track of any and all symptoms you experience! (You can even log symptoms that happened in the past!)

Log all the essential information about your symptom including the specific body part, intensity, date and time of day!Share your symptom list with your doctor, family or friends via email or text!

My Symptom Tracker was created by an expert patient advocate with over 20 years of experience. We know that the key to any tracking system’s success is to make it very, very easy to use. 

We also understand that sharing information about your health is essential to receiving effective healthcare. That’s why we’re committed to making this happen and help you become a better-informed, patient…with My Symptom Tracker!

Tuesday, March 13, 2018

Get Sick In One State...Move To Another

If you live in Illinois, then you are lucky.  It's not because of the Cubs. However, if your child has Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) and Pediatric Autoimmune Neuropsychiatric (PAN), then you are indeed very lucky.

That's because Illinois passed "Charlie's Law" in July of 2017.  This made it mandatory for all insurance companies in the state to provide coverage for IVIg infusion therapy for PANDAS/PANS patients.  Without insurance coverage, IVIg can costs families $1000's per month.

Now, using IVIg to treat these conditions is considered "off-label".  That means that it's an FDA approved treat for other illnesses.  But it is not approved for this particular type of use.

And yet, it works...very well.

So what are you to do if you live in Texas or any other state?  Where it is up to the insurance companies to decide if IVIg is an approved treatment or not?  Clinical evidence supports it.  But the FDA still has not approved it as such.

Even within a state, one company may agree to IVIg coverage while another might not.

So are you supposed to use up your life savings to give your child the treatment that works?  Or are you expected to pick up, leave your home, and move to Illinois?

Neither seems like a fair option.  A key element of insurance reform has to be creating uniform standards for coverage of efficacious treatments.