This question might be lingering out there for some. Me, I don’t care what people think about our decision to adopt our two stellar boys because I’ve been in “get off my lawn” status for a solid 7 years already. Something about having issues breathing makes me really not care what other people think about a lot of things. 🙂 On the other hand, I have to still consider my other family members’ feelings if anyone is thinking that or (heaven help them) says something to them.

Just married

The year we got married, I’d had a rough medical year with a round of IV antibiotics at least three times and I got a central port placed. Things improved pretty markedly for the first year as I gained weight and shared the load around the clock. Even then, we knew that when we were ready to have kids, if we decided to, we’d adopt. At the time, all we knew about was private adoptions that cost tens of thousands of dollars, so we knew it’d be a few years.

So we just enjoyed each other and the freedom of life with no kids. Other than medical considerations, we had little to hold us back from packing up and leaving for a week or a month. We spent the better part of a month helping my grandma take care of my grandpa when he took a nasty turn with his health.

Something was missing

I was at the peak of health in 2012. My stats were way up and I still had most of my weight from my CF Fatboy time. We had plenty of time because my wife quit her job to stay home and be a home economist… and we doubled her lost income in business gains. We were ready to start a family.

For all the margin, freedom, and fun we were having, there was something missing. Some of our best friends had their first child, and then another, and another. We realized that our margin was full of untapped potential to love more.

In the interest of reading time, I’ll condense the next five years of our lives into a paragraph. When we looked into adoption, we learned that you can adopt out of the foster care system for free and change the course of life of a kid who had a rough start. We decided to do foster care instead, to the tune of over 40 kids over 5 years and we adopted the only two who stayed more than 3 months.

The ultimate question

After 6 months with us, one of our fosters was reunited with his birth parents. Words can’t adequately describe the pain of coming home to an empty home. That was the moment we knew for sure we needed to have kids around – they made for a life more fulfilling, with more purpose and joy.

I can’t recall the number of times my wife asked me a variation of this question to be sure we were doing what I wanted with my life:

If having kids is taking years off your life, are you sure that is what you want to do?

I’ve never hesitated with my answer. Absolutely. Kids make for a better life, a better funeral, and a better legacy. As parents, we pour our lives into our children in the hopes that something sticks and their lives are better having known you than not.

Who really makes families?

I’ve had this post in draft for over 2 weeks now. Yesterday, a friend finally put words to what I am trying to convey, so I can’t take credit for the concise delivery of this:

People don’t make families; God makes families.

If it was all us, we’d be childless because we’re unable to have our own because of my CF.

If it was all us but we still wanted kids, we’d have done a private adoption.

If it was all us but we had good hearts, we’d have done an adoption out of the foster system.

That last one is close, but isn’t the whole story. We went to an informational meeting about adopting out of foster care and decided to take the class to become eligible. After one class, we both, separately and together, decided to do foster care and not adopt.

Two years later, we were pursuing adopting our second foster placement to be our first son. Our family was complete, as far as we were concerned. He needs a little extra energy from us and attention comes with a price most days, so we were happy as a family of three, though we did wonder if he needed a little sister to have someone his age to play with and care for other than being a selfish only child (like myself).

We had begun fostering newborns who were being privately adopted. They were low maintenance and had happy endings. We took one in after a particularly good family time on vacation. Three months later, we were filling out paperwork and raising money to be his adoptive parents (him, not her – again, not how we even conceived of things).

You see, throughout the last 5 years, we’ve had so little control of our family planning, it really wasn’t our choice to do what happened. All we were was willing to trust that what we thought would be okay in our lives would work out in the end. We didn’t have the patience our first boy took to integrate with our family and get ready for school. I didn’t think I’d have the health to stay a foster dad for 5 years (I was only on IVs once – and just recently). We didn’t have any money saved to pay for a court-contested private adoption.

But God makes families, not us. That is why we are okay having a family of four facing a double lung transplant together. As a family. As a community. As a team.

I’ve seen an awful lot of insurance and political posts the last few months, ad nauseam. This isn’t going to be one of those. Just a rundown of what I’ve done/had/have/plan to have and how that affects transplant and life going forward. Keep in mind that just because I’m paranoid doesn’t mean they aren’t out to get me. 🙂 I played my cards well and I played them right (so far) to insulate myself from the ebb and flow of politics affecting healthcare.

I was on my parents’ insurance until I was 21. Yes, that used to be the old cut-off. Dad had various insurance companies through work my whole life and I believe the last was Prudential. As a kid, I wasn’t privy, nor burdened with their out-of-pocket expenses, but I’m not aware of anything not being covered up through then. I know that sometimes the 20% of the 80/20 was a stretch and I have no idea what their annual max was.

When I turned 21, I got a job at a hotel call center and got Cigna HMO. It worked great, which is wonderful, because I didn’t do any due diligence other than checking that my CF doctor was in the network. I had that job for a few months and moved to a startup with another insurance, but with every change of jobs in my 20s came a 90-day probation period where benefits aren’t allowed to be bought into. So I had COBRA several times, but this was to the tune of $100/mo back in the early 2000s.

Several jobs later, I landed on Aetna with a really good plan. It was something like $40/mo for me and when I got married, my wife and I together were about $100/mo. It was a $1,500 deductible and $3,000 annual maximum. Back in 2005 when I got the original plan, there was a $5M lifetime limit. Back then with what we made, those were small sacrifices to our lifestyle, but very doable… and since they didn’t change every year (remember when you weren’t issued a new policy every year?), as our income increased, it became less a part of our life.

When I left that company, I went on COBRA as I worked for a WordPress theme start-up in late 2008. They did offer insurance around New Year 2009, but we decided it was too risky, so I stayed on COBRA. The next month, on February 1st, we parted ways and I rolled out Petersen Media Group on Groundhog Day, 2009 (read: 8 years ago yesterday). At some point that month, we got a letter from my former employer who managed the COBRA that I hadn’t returned paperwork they sent and my policy had ended in January!

*enter full freak-out mode* *screaming, yelling, blaming, begging, crying, everything*

When I calmed down, I found out that Aetna offered what was called a HIPAA-guaranteed policy for individual policies. If you had continuous coverage and no 60-day lapse since last coverage, you were guaranteed issue with no pre-existing conditions. Of course, pre-existing conditions was never an issue with employer policies. They just didn’t exist – if you got on an employer group plan, anything wrong with you was covered. Now this was saying it’s the same thing… the group pays together to cover expensive customers.

If you can still get a job with benefits (those come with working full-time for a decent-sized company for at least 90 days), do it while you’re healthy enough- that insulates you from the pre-existing condition issue if that policy reverts to pre-2012. That includes all able-bodied CFers over 18.

So what started as something like a $413/mo policy with the previous deductible/max/lifetime, has increased every year between $40/mo and $160/mo but the deductible/max/lifetime didn’t change because they never issued me a new policy. Well, correction, in 2012, the lifetime max was killed because it had to conform to ACA rules, but that leads to another issue we experienced, but first a pseudo-political but logical explanation of our insurance decisions.

When ACA was signed, I decided that the system was set to fail at some point – and I did blog about that for written proof of this at this point, LOL – so we were dead set to pay whatever premiums came our way to keep our grandfathered plan. Every year at renewal, the letter said something like, “You’re paying a TON, are you sure you don’t want to shop the marketplace and use subsidies? Oh, but if you do, you can NEVER get this plan back. It’ll be gone forever and ever and ever, Amen.” So, we bit our lips and our lifestyle dropped year after year as our premiums rose until they match our mortgage. I’ve had the same plan, same account number, same coverages since 2009.

In 2012, all of a sudden, almost none of my CF nebulizer antibiotics were covered. We were looking at something ridiculous like $12,000/mo for the meds I’d always been on for $15-30 each. Full-blown freak-out again! We contacted the state insurance commissioner and opened a case and simultaneously started calling them every day to get an answer why things weren’t covered. Beating our heads against the wall would have made more progress… until I contacted Aetna on Twitter. I found intelligence! After a few days, the found the answer: the system had inadvertently converted my group to ACA plans! Yup… if we had switched to ACA, we’d have been screwed, that much was made abundantly clear to us in those conversations with the policy agents.

At least twice, but maybe it’s 3x now, we’ve received a letter in October that my plan will no longer be offered. Every time, they followed that letter with one a week or more later that said “oops, we were wrong.” One year we’d already bought a Humana plan and then we got an Aetna invoice the next month! “Oh, your plan is still active. Sorry.”

Fast forward to this year. They sent that letter/follow-up letter combo again. Then we got our increase letter and it wasn’t that bad. I’d already done doctor and med research on the plan I would get, but I also have confirmation that the plan would be replaced each year with a new premium/deductible/max each year. At this point, that plan is cheaper per annum than what I have now, but plotting those increases vs my premium increases, their lines will cross very, very soon.

Now that I’m done with the transplant evaluation the financial counselor already met with us. She had already run my insurance plan through the paces to see about coverage for the eval, transplant, and all of the meds I’d be on. She was, simply put, shocked how good the coverage was. Everything is going to be $15-$30 copays and my max is something we budget for in January each year, making the rest of the year free except visit and Rx copays (and premiums).

So that’s why I’m not freaking out. In summary: I never had pre-existing conditions because I always had employer plans with continuous coverage since 1999. I’ve worked the entire time and still am running Petersen Media Group with an individual policy that doesn’t get replaced with a new set of prices and rules each year… and that brings a level of peace that is hard to come by when facing a million dollar surgical event.

Some of you are shocked that I have cystic fibrosis because I lead such a normal, high-octane business owner life with a family, fostering, and two boys. Most of you are shocked that I am to the point where I’m ready to be listed for a double lung transplant because you just saw me as recently as September or December walking around a WordCamp. True, but I’ve learned over the years to carefully hide my issues and live life as normally as possible. However, now I’m about to get a handicap hang tag so I don’t have to walk as far when we go out, so that’s a whole new world.

Before I go into how I hide it, I’ll admit now (under the slight scorn of my wife’s shock that I feel this badly) that perhaps hiding my symptoms wasn’t the best approach to not overworking my system, but my “normal life” isn’t all about keeping on trucking with no stop.

One of my best approaches is to play my introvert card as heavily as possible. Just find a place to sit and people watch or pull out my laptop or phone and ensure I’ve got my heart rate down and caught my breath. It works very well. Until very, very recently, someone coming over and talking to me, even at length, was more an introvert exhaustion than a CF exhaustion. Now a long conversation does make me winded.

I’d make every effort to walk places alone so I didn’t have to talk to anyone and get behind on my oxygen consumption. I still managed to hide being out of breath most of the time when I couldn’t avoid this situation. I’d leave to the bathroom to have a huge coughing fit alone or in a stall to avoid a public display of turning 3 shades of red and purple. My spasms make everyone uncomfortable, which then makes me uncomfortable. A long conference day or long meal with lots of laughing often leads to an anxious search for a quiet corner or bathroom not flooded with people with bathroom needs.

I know that writing this all out seems like I’m ridiculous… in hindsight. I’d also normally not let anyone in my business network know en masse like this, but I see the transplant as a speed bump that people should be aware of for a multitude of reasons. Then I plan on being business as “normal” when I’m fully recovered and pretend I don’t have CF again. I pretty much won’t have CF except for the tight medicine schedule and becoming an overboard germaphobe. I have super-duper masks arriving tomorrow for comfortable wear to avoid situations where we find out someone is or has been sick.

Cystic Fibrosis (here on out CF) is a genetic disease by way of a mutation that affects the ability of chloride to pass through cellular walls. This results in a lack of water balance in cells because it flows freely out of epithelial cells… which is a problem with mucus. Both sodium and chloride need to freely pass through to keep a balance. Here’s  an illustration.

Lack of water balance results in thickened mucus that primarily manifests as a problem in CFers’ respiratory tract (including sinuses), pancreas, liver, skin, and digestive tract.

I’ll explain more soon. Still filling out site content.