Tuesday, January 26, 2016

Managing Difficult To Treat Asthma: How My Allergist And HEPA Air Cleaners Enabled Me To Handle A Life-Long Illness

Managing Difficult To Treat Asthma: How My Allergist And HEPA Air Cleaners Enabled Me To Handle A Life-Long Illness

I wrote this a couple of days ago for a friend who has asthma and severe allergies.  Her family has these issues too.   As a long-term asthmatic with severe, persistent asthma since age 2 ½,  I've been through almost every imaginable kind of treatment for it.  Even now, a $65,000 dollar per year biologic medicine, means it usually blocks a molecular receptor site to help prevent a disease process from moving forward, named Xolair has saved my life.  It's moved my breathing function named FEV1 (forcibly exhaled air volume in one second) from 47% of normal to a new all time high for me of 87% of normal.  I take 3 vials of this monocolonal antibody every 2 weeks.   Even using this medicine and others would probably not help me very much if I did not keep our household air extremely clean.  We've been doing this air cleaning for over 30 years starting when I began to have a resurgence in my asthma about 35 years ago.   All of a sudden, while working on a grant project at home, I found myself having a very difficult time with post-nasal drip.  It left me unable to breath through my nose and the drainage was going down into my lungs too.   My asthma was becoming much more severe again after thinking I had grown out of it during the ages of about 24 to 33.   That was not to be.  I started a steady decline again.   We started using three HEPA air cleaners in our little two bedroom apartment.    Things turned around for me in about ten days.    That one step, cleaning allergens from our inside air, made my asthma manageable again.   I persisted in using the air-cleaners and they along with my several asthma medications helped keep my asthma manageable.  

I did not need to take any more medicines until about 2007, when no matter what my allergist and I did, we could not turn things around.  My breathing was at 80% in 2004, but started on a steady, unbroken decline.  By the summer of 2007 it had dropped to 47% of normal on the FEV1 test.  My allergist thought about this all through our appointment.   Then he said, "Frank, I may have something that will work for you. It's new, but it's shown quite a bit of promise for people like you, whose asthma has not responded well to almost all the traditional first and second line treatments.  Would you like to give it a try?"  I only had to think a few seconds and replied, "Yes, Doc., let's get going."  He said, "OK, we'll get this approved with your insurer and then you're going to need to come here to the office every two weeks religiously.  If you do that, you'll have the best chance.    I started in May of 2007 and soon my breathing started to improve.  It was slow at first, three or four percentage points at a time, but toward the middle to end of that time, the improvements became larger as we tested month after month.  About two years later, I reached 87%.  That was a remarkable turn around that enabled me to walk and ride a bicycle again.  I still had diabetes, severe chronic pain, lymphatic system dysfunction in my legs, and some other chronic illnesses, but this enabled me to start trying to get in shape again and not be constantly out of breath and feeling so hopeless.   I could finally see some progress and to hope again for parts of a normal life.

We had to throw many medicines at my asthma so that I could breath, but if I knew at least that if I was very careful, there was one serious issue not to worry about.  I just needed to follow through, be persistent, give myself credit for all the hard work I do to work through many issues and insurance problems.  I believe the air cleaning has been a big part of this, but like with the medications and Xolair, I have to always keep up with my appointments, take my meds as directed, and exercise and keep myself in good shape.    That's the life of a severe asthmatic with several other chronic illnesses.  

There's a ongoing mandatory routine many of us follow day by day, month by month, and year by year. It's very difficult and time-consuming. It gets very boring.  It is very frustrating to spend all this time dedicated to treatment and taking medicines.  In the end, I've had to learn and understand emotionally that there is no way around this. I and we need to stay steady, dedicated, and keep our eyes on the long game.  That goes a long way toward keeping serious but manageable and treatable medical conditions in check.  Even more than this, if I keep this up and if we do the same, a sense of mastering problems and trusting ourselves to take important actions and being able to take care of ourselves emerges.  As we learn how important all these little steps and actions are, we learn to live life on its terms, but with our little twists of individuality.  Each of our disease patterns are a little different and we each learn to know how to handle these idiosyncracies alone, but bolstered by a sense of accomplishment in handling so much.   We are problem solvers of the very first order.  We have learned to overcome so much. Managing our illnesses with a medical regimen and by getting along well with our health care providers is one part.   Another part is managing all the appointments and the cost of all this.   Still another part is trying to maintain some fitness and learning to exercise as much as we can and learn how to push boundaries there and in other matters too.  Another part is managing the machines that helps us to live.  Here is another important part of the puzzle for me.  It's all the HEPA air cleaners that have helped me survive and still do.   Each of us will have our own machines.  Mine are these and this is what I've learned about them.

As I've written, another big part of this has been using HEPA Air Cleaners.   We buy mostly Honeywell's because they have been in business a long time in the Heating, Air-Conditioning, and Ventilation business.   They call their most efficient household cleaners, True HEPA and they remove 99.5% to 99.7% of all particulates down to .3 microns in size.  That means most all hair, dander, pollen, mold, and smoke is removed from the air.   This has been very effective for me for many, many years.  What it leaves though is all the time outside our home when I worked and had an active social life.

Our several ( 8 if we have all running) true HEPA air cleaners remove almost all dander from our house air. We also use a Dyson true HEPA vacuum cleaner.  We vacuum the pre-filters every two weeks and replace them as needed. We change the main filters every 6 months to year.  We have a filtration system close to our DISH receiver and also others near the three other computer spots in our house.  You wouldn't believe how much cat fur they pull in.  The great thing is that when our computers need repair or upgrades the service staff tell us that they are very clean inside with virtually no dust nor hair.  It is working well for our furnace too by using all these very efficient filtration systems.  They remove either 99.97 or 99.99 percent of all particles down to and including 0.3 microns in size.  That includes smoke, bacteria, mold, and all allergens.  The pre-filters screen out larger particles.    Upstairs we have all wooden floors. I vacuum them thoroughly weekly or more often.   Most of ours are Honeywell air purifiers (http://www.honeywellstore.com/store/category/air-purifiers.htm  ), but we have some true HEPA Hunter filtration systems too.  They are generally quieter than the Honeywells, but the motors don't last as long. (4 to 6 years versus 10 years plus and still running)   I've considered getting a couple medical grade filtration machines, but my desensitization to the highly irritating protein in cat saliva and fur worked incredibly well as did desensitization to pollen, mold, and fungal irritants that were a big problem for me and unavoidable if I went outside.  If we purchased a couple of these, the level of protection would include the removal of viruses and remove even the tiniest particles and include ultraviolet light systems that kill any viruses or bacteria living in the filters. It's overkill for our needs. ( Perhaps only one tiny particle out of 20 million or so would get through.  https://en.wikipedia.org/wiki/HEPA ). We're able to find some good discounts of 15% to 40 or even 50 percent by shopping carefully and using online sources sometimes.

Here's another section I added to what I shared with my friend based on a question she asked on how many air cleaners she should get and what size.

We've lived in a much better and much cleaner environment ever since we started to use these.  I remember that when we took a nice medium-sized Honeywell one to her house when we were cleaning out and sorting through 70 years of accumulated papers and personal notes and family history types of things.  There was paper dust and mold from old papers all over the living and dining room.  We started that True HEPA Air Cleaner up.  It had enough capacity to clean rooms totaling about 175 square feet.  Within a hour or two we all started to feel much better. Sneezing and runny noses started to stop.   Mary's sister was amazed and said, "That really works doesn't it?" We nodded and soon she bought a couple for her home.  Just be sure to buy the ones that are True Hepa and clean 99.5% to 99.7% of all the particles and dust out of the air.  If they say "Hepa Type",  DO NOT Buy. Those are not anywhere close to as good.  They only clean 90% or so of the particulates out and leave many of the small particles like pollen in the air.

We try to get several medium capacity ones as opposed to just a couple of big ones.   We feel the smaller ones in capacity give us the opportunity to put air cleaners close to spots that we tend to be located in a great deal.  The other advantage is that it gives us enough to have one for each bedroom.  We spend more time in our bedrooms than any other spot; spots where we spend much of our lives are a must for particulate, dust, and pollen/pollutant control.  More means you can arrange them as needed.  It also means that the failure of one machine of two does not leave us with inadequate filtration for several days as we hunt for a new one.   You're welcome.  I enjoy writing this type of thing and helping.  It puts my curiosity to good use.   Ha....  :- ))

P.S. I've read recently that the washable kind aren't tending to be as cleanable as was once thought.  So, we vacuum our charcoal pre-filters several times before replacing them.  Basically that vacuums up all the cat hair and helps that filter work for a while longer for larger things in the air.  When we vacuum the pre-filter, we also vacuum the front side and back side of the HEPA filter too with our round brushes about the size of a fist.  We always use a HEPA vacuum cleaner when we do this or most of that dust goes right back into the air you breath with many vacuum cleaners.  We do that every two weeks.  We're not compulsive, but almost always do it. Sometimes when life is very hectic, it goes for three or four weeks, but not often.  You'll find that the Honeywell's circular air cleaners are quite a bit less expensive than the towers and are much more frequently on sale.  We always buy ones with at least 3 speeds to help us to control noise.  On high-setting they can get irritating at times, but we've adjusted gradually to the rushing air noise they make. Yes, you will get used to the noise. It takes patience and ear-plugs sometimes, but you'll sleep well in the end.  Hope this helps you.  I had all kinds of serious allergic issues too including hives, severe itching, and contact dermatitis, since age 2 1/2. Thankfully new medicines like Xolair, a biologic, inhaled steroids, improved allergy desensitization, and better and better air-cleaning equipment have totally turned my life around again in the last 8 years.

I am very fortunate to have made it all this way.  All of you too have made it.  There's so much we have accomplished, still, the most important thing is to learn to trust ourselves to act when we need to and to keep on solving the issues we have with health and knowing we can think our way and act our way continually through those issues every day.  Let's all learn to trust ourselves and give credit to ourselves while asking good questions and seeking the best answers we can find. Never forgot to ask questions and seek help from others. Doing that will enable each of us to have courage and self-confidence. We move forward knowing that each of us has the skills and the inner determination to solve our problems, ask questions, and seek the best path forward for ourselves most every day.