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Overview of the Issues with My Lungs and Some Health Challenges History

by Hawke published Jan 27, 2024 02:10 PM, last modified Jan 27, 2024 04:38 PM
Since I've had to explain this a number of times (even though I'd rather just keep such personal struggles private), this comes up enough times that I have to explain it, that I guess it is time I post it here so I can just point people here if they are interested enough in knowing what the deal is when I mention my lungs or breathing treatment issues.

I have significant lung damage scar tissue from an illness that began around 2010-2012, and continued for years before we tracked down the causes and started to turn around the death spiral. I'm getting better now, but best prognosis is maybe 40% lung function.

Some Health Challenges Brief Overview History

While I was born with asthma, I generally could handle it with just meditation, diet, and fitness. I started doing martial arts at 4 years old, which helped a lot.

I didn't need an emergency inhaler until around 5th or 6th grade, and that only generally to help me stay on the basketball court longer between breaks to catch my breath (because of my height I was always the team "Center"), dunking in 6th grade, and slam dunking flying layups by 8th grade, not a great dribbler or shooter, I was "The Wall" (skinny, taller than everyone else on the court, but with a martial arts solid stance that others bounced off) and a dominating rebounder, a team player happy to pass and support, not a ball hog.

At my peak I was 6'8.75" with an average weight of only 180 (if I worked really hard and ate constantly I could get up to a solid 220 at best, but would lose 20 pounds in a week if I stopped shoveling food), but was freakishly strong. As a mechanic I pulled 4 cylnder engines out of cars by hand, and as property maintenance manager I carried full size refrigerators up 3 flights on my back by myself (no dolley). This is relevant later to compare and contrast the decline...

An Exceptionally Active Life

I stopped needing to even use the emergency inhaler by 9th grade or so, and was completely without any inhaler from around 15 years old until, I think, my early 40s.

The '93 Car Accident

In '93 I was a passenger in a car accident that damaged the meniscus in both knees, that was the beginning of my physical life changing, and the first time I went through extensive physical therapy (PT) to try to get back to functioning, I opted for PT over surgery, and I am glad I did so.

The '99 Meth Lab Duplex

Around 1999 we lived in a duplex that unfortunately turned out to have been a very large meth lab run by the previous tenants, but the landlord had only painted it over and cleaned the carpets. A few months into living there I developed a severe case of pneumonia, completely filling up one lung, and half of the other lung. It was touch and go at the emergency center for a while then.

When we saw the red and yellow stains coming through the walls, we quickly called the health department and they condemned the place, and we rapidly moved elsewhere. The landlord had to strip it to the studs and floor boards and rebuild it, and had the gall to ask us to come back (we didn't). I recovered after a few months, but it was the first scar tissue to my lungs, it looks like I probably lost about 5-% of my lung capacity from that incident.

The '03 Radio Tower Incident

in '03, one of my businesses was MaladNet Wireless Internet Services Provider, and I was working on one of my 30'+ telescoping towers in a blizzard while on a 16' A-frame ladder, when it slipped, and came crashing down, I stopped it from beaning me on the head, but the energy transferred through my arms and tore several discs in T regions of my spine.

I made it home, but then was bed-ridden for weeks, and then caught strep, and was bed-ridden a few months (btw, my grandmother died from strep, because of genetic allergy to Penicillin (as am I)).

Then in early '04 I fell down some stairs (I was so weak from the injury and illness), that I ended up briefly in a wheelchair.

I underwent 3 years of intensive daily PT to get back to daily walking/life, and 2 more years, to get back to being athletically active and teaching martial arts again.

I had a good run from 2007 to around 2010/2012, from '07 to '10 things were great. I was back to teaching martial arts, hiking, rock climbing, camping, canoeing, motorcycling, paint-balling, shooting, fishing, traveling, and much more, very actively sharing with my 3 young sons as a full-time single father.

Then the Lung Issues began around 2010-2012+...

The Lung Illnesses Begin

Then around 2010-2012 onward I increasingly and inexplicably started developing bronchitis and pneumonia.

They would give me steroids like prednisone, steroidal breathing treatments like budesonide and others, Tylenol cough syrup with codeine to stop the coughing rupturing blood vessels and bruising my ribs, antiobiotics, and many other meds.

The illness and meds would lay me out for a while, but then I would get better within a few weeks.

These meds made it very difficult to walk, talk, think, etc., but they kept me breathing and alive.

Then 2-4 weeks later it could come back.

So the doctors would start another round of meds, upping the dosages and duration. Each time it would clear up, then come back some weeks later.

This went on for several years, and they couldn't figure out why.

Each time the illnesses were worse, my immune system was weaker, and the medication dosages higher and for longer periods to "try to wipe out whatever it was that was lingering", they thought.

The Ongoing Recurring Illnesses and Meds Nearly Killed Me

I kept getting sicker and weaker each year.

Every time it turned into pneumonia, I developed more lung scar tissue, further reducing my overall lung capacity. Also some of the damage was making it not only difficult to get O2 in, but increasingly difficult to get CO2 out, and that is still a big problem even now, my CO2 levels can build up very rapidly in my blood, and become very difficult to get out of my system.

Furthermore the meds were taking out my liver, kidneys, and other areas. I developed increasingly bad whole-body edema, and many other complications. Which meant more meds, and more consequences.

This very nearly did me in.

And Yet, Somehow I Still Had Some Remarkable Accomplishments

Somehow during all this, I still kept doing all the things I did with RPG Research, RPG Therapeutics, going to EWU sporadically, working at various information technology and security companies, my own projects, building ZOE's TFN SVOD OTT platform in my house, working on the house repairs, cooperative music jams and drum circles, creating the wheelchair accessible RPG Mobile fleet, raising three sons as a full-time single father, and much more. 

All of this was at a much more impaired rate than I would been at my usual functioning though, and most of the fun physical life stuff became less and less frequent.

Unfortunately these recurring bouts of illness went on for so long, my boys don't really remember the years that I was healthy and most of the great things we did together during those years. When I show them photos or videos of those times, they at best have vague memories because they were so young then.

After years of this, I was down to less than 20% lung function!

Still no doctors had any idea what was causing it, and the side effects from all of the increasingly higher dosages and longer duration of the meds, (many not meant to be used more than very short term), were also killing my liver, kidneys, my entire hormonal balance, homeostasis, etc. 

These meds also put a lot of weight on me, which was a new experience as well. I went from 270 at 6'7" (I used to be 6'8.75" inches before the tower-collapse injuries that briefly put me in a wheelchair), to over 350 from the meds.

Any time I can stay off them, I'll lose 20-30 pounds quite rapidly without having to do anything but stop the meds. I am normally a highly active person (when allowed), so the weight gets back to my normal for my height, pretty quickly if I can just stay off those darn meds long enough, but my muscle tone goes to crap during these boughts of illness or being on the meds, and I have to spend  long time building back up to my normal strength, tone, flexibility, and especially endurance.

The illness, and medications, have severely reduced the physical activity and diversity of my normal life. They also impact me cognitively, sometimes quite severely, albeit temporarily.

The Original Cause

Finally after seeing dozens of specialists, one doctor figured it out, Dr Drain from Spokane Asthma and Allergy, she found an auto-immune reaction in my blood work to my kid's parrots.  She pretty much saved my life.

The research is solid that it is important for children to have pets to improve empathy, etc. But the boys were allergic to most typical animals, like cats and dogs.  

So for the youngest one with the fewest allergies had a guinea pig, the middle one had some bearded dragons and a Sun Conure (small parrot), and the eldest a Green Check Conure.

Which was great. And while the boys were at school (I was a full-time 100% custody parent of the boys since 2007), I would have the parrots hanging out with me since they are highly social creatures. 

It turns out that was killing me.

I was having an auto-immune response to the dander specifically just of parrots (many other animals were tested and found to have no reaction, this was very specific).

The dander would land on the lining of my lungs, and my immune system would attack my lung tissue and cells as foreign objects, which would inflame my lungs, cause a low-grade fever and exhaustion, reduced breathing capacity, and rapidly turn into bronchitis and pneumonia, this is in part called hypersensitivity pneumonitis. This particular variant is sometimes nick-named "bird lovers lung".  Worse yet, at an unpredictable point, the inflamation damage can become permanent and rapidly turn into the dreaded deadly "crackle" of a type of  Pulmonary Fibrosis. If it turned into that, I would most likely only have a few years left, so it was critical to keep taking these meds to stave off it turning into that fatal permutation.

All of this caused a lot of permanent scar tissue to my lungs.

The latest estimates are still that I am only expected to ever get back to 40% capacity at best.  Unless I can get my lungs transplanted, or some kind of stem-cell or other (also incredibly expensive) treatment becomes an option.

Beginning the Long Up and Down Road Toward Healing

Anyway, once we figured out the cause, I stayed away from the birds, we did isolation, and other techniques which helped a lot, but I the dander could be on the kids when they came upstairs, and so it is was still challenging.

Eventually, against my wishes, we had the parrots moved elsewhere, much to all of our hearts breaking.

However, the damage done has left me highly susceptible to inflammation and tearing when the weather gets very cold, or during "smoke season" (also CPAP tears my lungs we found out later), and also we have found, since my wife's family in the greater Seattle area, that any time I spend more than 1-2 days in that region, for some reason something also inflames my lungs badly, and I have to get back on breathing treatments within 2-4 days.

When that happens, I have to get back on (usually just) the nebulizer breathing treatments machine with respules of Albuteral and Budesonide (steroid) inhaled breathing treatments. I

f I don't, then it will rapidly devolve back into bronchitis and eventually pneumonia, which then requires all of the other meds to clear it back out.

I have had to live a lot like "bubble boy" 6 months or more of the year due to these issues. Which for a super kinesthetic hyper active, normally extremely high energy person, is pure torture. I used to spend weeks or months out in the wilderness every year. Now it has been ages since I could get my outdoors fix to any real degree. My quality of life is far below what it once was, but I am slowly improving, and keep hoping that I'll get more of my original life back eventually.

A Long Struggle, but Incrementally Getting Better!

It took years to figure out all these things.

Fortunately, I've been able to stay off the prednisone, antibiotics, and most of the other meds except the breathing machine meds, now for about 3 years (yay!), but I have still ended up needing the breathing treatments from the various aforementioned triggers.

The only way to not have that happen is when I basically stayed indoors or at the RPG Center almost entirely (with the air purifiers running full blast), except  in the spring and fall when it is neither too cold (below 60 degree Fahrenheit), nor smoke/smog season. I also, for some unknown reason, can't stay in Seattle more than a day. Lots of theories about mold, and other things, but none of the doctor tests have anything conclusive.

18 Months Meds Free!

Back around 2021-2023, I made it a whole 18 months without having to use any of the meds, which, combined with supplements, etc.

I was able to start healing my badly damaged (from the meds) liver and kidneys.

The Fall of 2023 my kidneys finally made it from the "Red zone" to the "yellow zone", and finally just within the "green zone" as far as numbers (which means my edema is doing much better now).

Winter of '24, Relapse Due to Seattle

Also around this time my liver was finally out of the "red zone" and in the yellow zone, and just a few more points away (before I had to go back on breathing treatments this November/December because of visiting family in Seattle, because my wife's mother is dying from cancer) from being back in the green.

Any time I have to be back on  any of the meds it wreaks havoc physically and cognitively, but I muddle through.

I was at 4+ breathing treatments per day in December, as of the last week of January I am now down to just 1-2 per day, as long as I try to stay inside as much as possible. I urgently need to get back to the 0 -per day so I can get back to full function in that area. I am juggling a lot of responsibilities across multiple organizations (what else is new), but get really slowed down when I have to take these breathing treatments again. When one them, right after taking them, I basically can't walk for about 30-60 minutes, and can barely think or speak, and have a lot of memory loss.

Then for a few hours I'm wobbly, but improving and can do some not too cognitively deep work, and then a few hours later, usually a window of about 3-6 hours, I am functional enough to get a lot of work done, albeit probably only at best around 25-50% of my normal functioning without these meds.

Once I get to zero treatments per day, I see steady improvement in my physical and cognitive function, walking, talking, etc. But it takes several months to fully recovery cognitively. This means that generally Spring and Fall are my most productive times, and then once smoke season starts around summer, and cold temperatures of winter, I may end up back on the breathing treatments temporarily.

Why Don't I Move Somewhere Else?

Often people, including my sons, ask why I don't move somwhere away from the winter and smoke seasons, so that I am not in health jeopardy each season. Would that I could do so alas.

Number one, right now I am so far in the hole due to the 10+ years of  medical bills, as well as supporting the RPG Community Center when donations have plummeted (recently).

Unfortunately my wife's family are all in the Seattle area, so there is no option for me to move to a warmer and safer climate (my mother lives in Arizona), which is a point of concern for my boys, but we don't have the means for such a major move to any location (including Seattle area) any time soon anyway, so it is just a moot (as in the correct definition of up for argument) point, but without any potential for resolution any time soon.

Please Be Patient, We'll Get There

So, when these issues happen, all I can do is ask that people try to be more patient with me when I'm on the breathing treatments.

I accomplished all those things listed earlier, and much more, during the worst of these struggles, so bear with me during the more difficult seasons, and my apologies if I am struggling sometimes with the time estimates, especially when medicated.

People get "spoiled" by how well I'm functioning in the Spring and Fall, and the amazing amount of productivity I provide them, then Summer/Smoke or Winter/Cold come around, and I begin to struggle again, and they get confused and frustrated at the significant change.

During these times I am slowed down, but I can still get things done, it just requires more patience from myself and others. It also throws off my time estimates, because what I could do during Spring and Fall is totally reasonable, but becomes very inconsistently difficult during Winter and Summer, sometimes still working out on time, other times due to more breathing treatments than expected falling behind on weekly planning.

So, I find myself falling back to the mantra I used with my boys, especially when they were teenagers, I need to apply it to myself, and hope others will as well:

"Patience and Love".






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