New Lungs for Jesse

Jesse's journey for bilateral (double) lung transplant for cystic fibrosis

Preparing the Household for a Transplant Stay & Coming Home

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Our process of preparation has begun already. I’ll write about preparing our business separately, but I did start signing up new things and moving services with an end-game in mind. Be that a failed transplant, missed transplant, or as I call it, “got hit by a bus protocol” because it could be any of our days any time we get in the car. I felt like this was necessary so my family would have some income for a while as they figured out how to sell the business or clients to my friends.

Family

The current status of the household is still simmering somewhere below freak-out. My wife is still a bit freaking out about me and the boys, I’m freaking out about the business, and the boys are freaking out about things feeling different. The good news is that our families have really come together to support us even while we adjust to the news and I adjust to life on oxygen.

For example, my sisters-in-law took the boys to the park Saturday. I could tell my wife was still stressing about the state of the house’s cleanliness after so many days of me in the hospital, so I sat on the bathroom floors and cleaned the toilets and sucked on O2 and listened to podcasts… and she felt much better about the house. Just as we finished, the girls texted and asked if we had dinner plans. We were going to have our bacon and orange slices night, which must have sounded pitiful (but we really do like that dinner) so they went to the store, fixed us dinner, and cleaned up and put the boys to bed.

Can we just say how awesome that is? Yes… it was awesome.

De-stressing

This week, our moms are here helping with the baby and making a family master list of things that will take stress and to-dos off our plates. My mother-in-law is our “agent” for the process and is spearheading the distribution of tasks to interested parties who can help. Her primary goal is for my wife to be of sound mind through the whole thing (since she is her mom’s daughter) and for me to be at my peak health possible (awesome that she cares so much). No wearing me out living our normal life allowed while I’m at such a physical disadvantage. I am to ask for help… or else. 🙂

She brought us dinner to fix last night and it was delicious. I was asked what my mental health days would look like. For me, that’d be putting a LEGO set together, going to see a Marvel movie if one is out or Redbox if it’s old, napping, and maybe coding for fun. My wife would have her mental health day on the same day and everyone would bring the boys back at night.

Then there are date days and sleepovers for the boys. Also tagging along for family days, like Busch Gardens, will help ensure nothing stresses us out and I can take as many breaks as I need. Doing things will become harder, but the boys need normalcy and having aunts, uncles, and grandparents along makes it more fun!

Shocked

We’ve had a very stressful past three years, but it seems that those were just warm-ups for life’s big trial. A few things have shocked me so far that I didn’t anticipate with my years of mentally preparing myself for lung transplant. I’ve known it was coming since 2006 when I dipped into the <30% lung function range after a drug trial placebo left me hanging. That’s a long time to prepare, but still…

  1. I didn’t expect to see such clear damage to my lungs – visually – with a CT scan. I’m looking forward to seeing my old lungs in the lab after surgery, but to see their insides with cysts and mucus was a shock but made how they physically feel in my chest a much more real and visceral status going forward.
  2. When we read an article about the new transplant pulmonologist arriving at Tampa General/USF, one thing caught us off-guard. In order to be considered for transplant, you’re not expected to live more than one or two years without this life-saving surgery. Yeah. No one said that in so many words to me before. “You’d be dead in two years if you weren’t moving forward.” My mind and heart wasn’t ready for that.
  3. I didn’t expect to feel so discombobulated and wrecked. I’m strong. I’ve prepared for this. I’ve fantasized about it since at least mid-2010. I want it so much… so why am I stressed? Thinking it may have to do with the first two points, but I’m not sure.

Plans/to-dos

We’ve made plans for who can be here with the boys when we get “the call,” who will stay/transport them so my wife can be with me 24/7 for the first few days, and how people can help when I come home.

There are a lot of meals to prepare and freeze for her, a bag to pack and leave in the car, ensure our laptops always have some charge on them, ensure the cars don’t get below 1/4 tank, extra phone cables, and a hand-off plan for my business items.

Just inside the door, we set up a sanitizing station with masks and a hand sanitizer and I got a washable 1-micron mask for pre-transplant. Amazon has the post-transplant mask I want, but we didn’t go that extreme yet. Then there is pressure-washing the mold and mildew on the sidewalks and driveway and top-to-bottom cleaning the house so while I’m recovering it doesn’t take as long cleaning before I come home. I’ve got part numbers of air filters to replace.

Some people go through this with a significant other and maybe a parent or two, but we have eight family members ready to step in and a church group asking how they can help. With so much family, we’re actually thinking of gaps that our plan has to give them an opportunity to help.

It’s good to be so well loved.

Telling Your Kids You Need a Transplant

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We finally had the talk we’ve dreaded for years: telling Boy (7yo) that there’s something seriously wrong with Dad.

Ever since he can remember, I’ve been up before he wakes up and I am doing my medicine in the same spot every day. He used to be my couch buddy and sit up under my armpit and we’d watch TV while I did nebulizers. He liked my Vest shaking him. Now Parker is my couch buddy and likes the Vest’s soothing noise and shaking.

What we’ve always told Boy is that my lungs were made differently and need medicine to stay healthy. When I’d get sick (which has been once other than colds), I needed different medicine or rest. When it was my heart, it was my heart. So we’ve always been able to skirt around the idea that Dad is different, even though he’s the only dad who sits for every sports practice and game instead of helping out at least once per season.

That night, I needed to put the air on to catch my breath and relax and Mom decided it was time. She texted me to be sure, and I told her to go for it, because I knew she’d positively put more than enough thought into it. To nearly quote paraphrase:

“Do you want to know about it? Dad’s lungs are sick and need more help, so these tanks and that machine help him breathe so he can still do things with you. But his lungs are going to get sicker and sicker until they are all the way sick. (“all the way” something in this context has always been our way of saying “until something is dead”) But his doctors have a plan. They are going to give him new lungs.”

At that notion, he started cracking up, which was a bit distracting, and I wasn’t sure if it was a coping mechanism from the previous thought about “all the way sick” or just the crazy idea that you can just get new lungs. Of course, we weren’t going to get into the details about what has to happen to another person for me to get new lungs, not yet.

“So when they give him new lungs, he’s going to be gone for a long time in the hospital and you won’t be able to see him. But when he gets better, he’ll be all the way better and he’ll be able to play more and do more. You know how some dads run around at soccer? Maybe Dad will even decide he wants to run! (I don’t like to run, but you bet I will!)”

This made him very happy and we went on with our evening. I went out with the guys for Bible Study since I missed the last one being too sick and I don’t know if I should keep going out that late. When I got my Everything Bagel with 8oz of cream cheese and sat down, she texted and said “He wants to plan a party after your new lungs to celebrate.” Yeah, I almost cried with happiness that he got it and had processed it that well… and that he cares.

So, that’s how we did it. How did you do it?

My Health Insurance History and Situation (and why I’m not freaking out)

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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.

But You Seem so Healthy

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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.

What the Double-Lung Transplant Process Usually Is Like

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Since 2006, I’ve done a lot of research and friend-making in the CF and lung transplant community. This stepped up in 2016 when I began to realize that I was below 30% FEV1 (predicted lung function measuring volume expelled in the first second based on my age and size) and I suspected that it wasn’t going to bounce back. My wife was much more optimistic about it and that’s why she continued in mini-denial as this process started 2 weeks ago.

I’ve walked online (as you’re now doing with me) with at least 20 people who were either on the list, recently transplanted, or were being re-transplanted (you can receive a second transplant if you’re compliant with your regimen). I’ve read more than my fair share of journeys that brought this hard-shelled guy to tears at the joy of breathing deeply for the first time they could remember. I’ve read more than my fair share of journeys that ended either without lungs or without a second set of lungs and read the description of what kind of death that is.

Once I got married, there was no question that I was getting a transplant. Once we adopted our first son, I found out that there is another level beyond “no question.” Now that we have a 15-month old… yup, there’s another level beyond that. My story isn’t done. I’ve got more to do here, and that includes seeing a couple of careers and families start and pass on the family name.

What transplant looks like

When a donor pair of lungs become available, they check the immediate area first and then go out in bands of 500-mile radius in turn. They will search up to 24 hours for a new host. CF doctors are more picky about the donor than most because we, as a population, are much younger than, say a COPD or emphysema patient. Shocking, but it makes no difference in your list ranking if you were born with a lung disease or self-inflicted your lung disease after 50 years of ignoring surgeon warnings on packs of cigarettes.

Once listed, you can’t travel more than 2 hours from your transplant center so you can arrive quickly. That means we can visit Orlando and some gulf beaches, but not the Atlantic beaches or a conference in Miami or Jacksonville. When you get the call to come in, you don’t know if you are the primary or secondary recipient. They run lots of tests on you and the lungs. When the lungs arrive, you’ve often been waiting 6, 12, 18 hours and are prepped for surgery and ready to go.

My transplant center (if I read their information correctly) makes an incision on each side and spreads the ribs far enough to slide lungs in and out. Another option is a long incision along the underside of each pectoral muscle all the way across the chest. Google for images if you want – I’m not going to flash them in front of everyone.

Once under anesthesia, they make the incision and prep for new lungs. They then inspect the lungs on-site and make a call on whether to proceed with removing your lungs. Depending on your ability to survive on one diseased lung, they may place you on a heart/lung machine. While closing back up, they place two chest tubes and a drainage tube to allow the fluids from swelling to drain and to allow the lungs to fully expand in the chest cavity.

Surgery takes 3-6 hours, but sometimes much longer if the diseased lungs are severely plastered to the chest walls. Our center has a really good system for updating family on the progress of procedures and I expect that to be as good or better for something like this… and I REALLY hope someone takes photos or video of the whole thing for me.

After surgery, it’s time to go to CTICU (cardio-thoracic ICU) for 3-5 days. At this center, they let you recover for a few hours or a day but then they want you sitting up to let the lungs hang and start to creep into all the spaces of your chest cavity. I was informed during evaluation that my doctor is very anti-opiates and will manage pain with an epidural until discharge. I know at least one person who has been transplanted under his care, so I’ll be asking him about the pain.

After CTICU, we move to the transplant unit, which has nurses who are very familiar with the situation and bring another level of care that isn’t on the main floors. They are in charge of monitoring for rejection, administering the pain plan, antibiotics, and getting me used to the medicine schedule as soon as possible. It’s around this time that they ensure you don’t need to be intubated again and can have the chest tubes pulled so everything heals up.

Before long, really just a couple of days if things progress well, they get you walking with assistance. When they’re sure you’re able to get about enough to come back, do your own meds, and are tolerating any pain, they send you home after 10-21 days in the transplant unit.

For about 3 months, I’m not allowed to be left alone in case I need something or something happens and I’m incapacitated. So if we need something, I need to go with my wife, someone needs to come here to be with me, or someone needs to go do the thing we need… for 3 whole months.

The first month also includes two weekly trips to TGH for rehabilitation of my lungs and all the limbs that slowly lost mass and strength as I reached this point. I noticed leaving the hospital that my skinny jeans are no longer skinny – I have quite a bit of room in them now. It’s pretty easy to reach both hands all the way around my thigh, which I haven’t been able to do since pre-Fatboy.

Then there are once weekly rehab trips, numerous bronchoscopies, biopsies, daily home PFT tests, and getting into a routine taking medicine throughout the day, not just whenever I wake up and whenever I go to bed.

That’s all I can think of now. Anyone who is on the other side of a transplant, feel free to chip in. When I am on the flip side, I’ll link to this and link this to that one and see how similar they are.

Update:

My hospital has now performed over 500 lung transplants!

https://hscweb3.hsc.usf.edu/blog/2017/03/09/tgh-celebrates-lung-transplant-milestone/

Evaluation Process for Bilateral Lung Transplant

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This is going to be a long one, but it will illustrate and explain everything that has happened in the last week while I was admitted to the hospital for my poor lung function.

Before someone can be placed on the list for an organ transplant, they need to be evaluated. For a double (bilateral) lung transplant, this list was quite extensive. I don’t think I am missing anything in this list because I took notes, but I’m not 100% sure it has every little thing and I don’t need some items based on age, gender, and previous treatments.

  • Upper GI exam
  • Bone density scan
  • Ventilation–perfusion (VQ) scan
  • Chest CT scan
  • Chest x-ray
  • Approximately 18 vials of blood
  • Blood type/tissue type test
  • Organ ultrasound (everything in your trunk)
  • EKG
  • Echocardiogram
  • Heart catheterization
  • Full pulmonary function work-up, including 6-minute walk test

I still need an appointment with my dentist, eye doctor, and a dermatologist. That’s it for me as far as physical exams, but the evaluation didn’t stop there. I met with every member of the transplant team, which included:

  • Transplant pulmonologist (my usual CF doctor)
  • Transplant coordinators (3)
  • Transplant social worker
  • Transplant financial counselor
  • Transplant psychologist
  • Transplant pharmacist
  • Transplant cardiothoracic surgeon, fellow, & nurse practitioner
  • Transplant anesthesiologist (I guess this comes later)

I have some notes on my personal experiences with these exams and then the experts who met with me/us.

Exams

Have you ever had 18 vials of blood drawn at once? I have. They butterflied both arms and started to work. It took about 5 minutes, which is longer than it takes me to donate a pint of blood.

The upper GI is only unpleasant because barium is unpleasant, but I’ve tasted many worse things… sometimes at a dinner table. I’d place the taste as drinkable marshmallow, but almost as thick and without the initial punch of sweetness. Definitely a dessert aftertaste, though. This tests for reflux, and I bombed this exam so a future procedure called a nissen fundoplication is possibly in my future to prevent passive acid from coming up my esophagus and drip into my new lungs. It’s a big reason for organ rejection after transplant.

Of course chest x-rays and CT scans are completely non-invasive and are quite quick. The CT scan was shocking to see how much of my lungs have been ravaged by CF with mucus, scar tissue, and cysts. A very large portion of my upper right lung is filled with cysts and other unusable tissue.

The chest CT was, hands down, the most shocking information I’ve ever received about my health. It put how I feel into a very real, visceral sense of what is happening to me – to an organ I can neither see nor touch.

EKGs are super quick and painless, as is the echocardiogram. The ultrasound takes quite a bit longer, but it’s also just a laying down and relaxing exam.

Now for my favorite exam: the VQ scan. It’s used to compare the airways with the vascular area so they can determine if there is a blood clot or bleeder anywhere. For the first half of the test, you breathe in radioactive gas (you wouldn’t like me when I’m angry) and then it lights up a fluoroscope for 5-10 minutes. After that, they inject a radioactive dye (I have a central port so I didn’t need an IV poke) and they watch where it goes for 5-10 minutes. I asked the technician why it’s not all over my body and is restricted to the lungs and he told me it’s because the particle size gets filtered by the lungs and gets stuck there until it disappears.

Then my least favorite exam came the day before discharge: heart catheterization. Most of my anxiety over the exam was because I had already been catheterized for my tachycardia surgery last January. I was fully awake and had nothing for anxiety, but I was given plenty of morphine once things began. How much it helped, I have no idea, but I would guess it didn’t start to touch my pain from the procedure. So I was nervous going in that I’d re-experience the pain… coming from someone with a VERY high pain tolerance.

Happy juice never came and the procedure was a replay of last year except this one used much smaller sheaths so inserting the sheaths and catheters was no big deal this time around. Still, on my scale of 1-10, it’s still a 12 for me. I told them this didn’t get any easier the second time and that’s off the charts pain. The technician assured me that I rocked because I didn’t actually scream or cry and he’s seen many battle-hardened marines cry like a baby on that table.

So there’s that to prepare me for what to expect in recovery from having my body torn apart and put back together. I’ve already put a stake in the ground and said I’m going into this with the goal of exceeding every expectation and mark they have and set for me. I was never able to join the Marines because of CF, but I have always felt like one.

Experts

The majority of my visits were just someone popping in to introduce themselves or a quick 3-5 minute series of questions about either my history or some family medical history. Some of them went on for 20-30 minutes, so here are the longer ones.

The pharmacist ran down all of my current meds and showed me a list of post-transplant meds. Of interest was the complete lack of nebulizers or inhalers. None. Not a single inhaled medicine. A general cross-section of the list includes two anti-rejection meds, an anti-viral, and anti-fungus, and a spattering of other meds that I’m already on in one form or another. Soooo… I’ll be stopping about 5 inhaled meds and two hours of every morning in exchange for about 5 pills.

The social worker needed to ensure I have a support network in place to take care of me after transplant. I’m not allowed to be left alone for 3 months, even to go pick up groceries or our son from school. So I either need to go with her everywhere, have someone else stay with me, or have someone else do our thing. I’m very blessed to have both our parents close by and both of my wife’s siblings and their spouses also in town, so we have lots of hands to share the load between taking care of us and the boys.

The financial counselor needed to ensure that we can pay for transplant and the meds that come after. No problem. I’ve got a grandfathered health insurance plan that we pay out the nose for with premiums but the deductible and max hasn’t changed in 8 years. I’ve never felt so justified paying these rates and resisting to participate in the current insurance market. My paranoia has finally paid off on this long-standing financial decision. When all is said and done, it’s possible that my meds and visits will cost insurance and us less than we currently do.

The psychologist just interviewed us about who we are, our family, what I enjoy (LEGOs!) and do for a living. Then he asked about our mental history of counseling, treatment, and medication. There’s a support group for pre- and post-transplant once a month that we may visit because I’m one of the few able to come pre-transplant. He said it’s all post-transplant now because the others on the list aren’t able to make it. So why not make an appearance and see what they have to say about where I am now knowing where they are now?

That’s enough for one post. More on transplant and how I feel in two other posts.