One of the skills a CFer has to learn as they grow up is knowing what their body is telling them. In clinic, they don’t just pay attention to the hard numbers if we are telling them a different story based on abilities or general feeling. This update has found me in the state we call “below baseline.”

Health update

I finally ended up calling in about how I was feeling on Tuesday. I had one more day of Levaquin remaining but my cough was increased and was feeling generally junky as detailed earlier. They called back after speaking to the doctor and they decided to not do anything unless I run a fever, so we established what number that is. I am typically 97.9-98.4, so they said to call if I even hit 99.5 for a while and immediately if I hit 100.

With that, I’m supposed to keep calm and stay hydrated and eat or night feed as much as I can. On that note, I did get permission to double up my Prilosec to avoid night feed heartburn but I need to call tomorrow to report in. I’d say it was much better last night.

I’ve had several “bad lung days” where I feel short of breath a lot or weird coughing or just plain tired all day. When I try to do something but I can’t, it’s much like one of my favorite Far Side frames. When the next day is still the same story, all the more so. Also, despite my wife telling me that my anxiety is causing all sorts of odd reactions to situations, I am still no more successful in changing that, so I’ve started taking a micro-mini dose of Xanax to bring me down.

Yesterday was a particularly bad morning, so I decided to take the entire day off to watch DVR and nap. Nana took our toddler and my wife went to the beach. At one point, my heart was still going 120, so it was time to Xanax up.

One recent example is when our toddler opened the cabinet door under the sink and grabbed the drink bottle brush to play with. I lurched and gave him a startling, “No, don’t grab that!” “It’s fine,” she said. “He plays with it all the time. It’s clean.” I thought it would be all nasty from cleaning out the dishes… because when I leave a drink in a bottle too long, I go for gold and it’s usually a science project when I take it to the sink.

The next time he went for the brush, I was in the kitchen catching my breath on the stool and playing a phone game when she yelled, “Jesse! He’s going for the brush!” and started laughing. She’s got an effective method, eh?

On the funnier side, I keep thinking one day I’ll do something entirely ridiculous in public, like in Sunday School and then it will be more like this:

Waiting list update

At some point last week, someone was transplanted. I never did hear any more about it. When I ran the report today, though, someone had moved to the inactive status since yesterday. I’m now competing against 7 other people in the hospital.

One friend on Facebook did point out that if the lungs aren’t local, I’m competing against the region. Our region extends to Louisiana and Georgia. Florida has 14 centers and is more than half the centers in the region. Today, I did some Googling and learned that A type blood can receive organs from either A or O donors. So if there is an O in need, they will most likely get the lungs, but if I’m the closest match for size, then they could come my way. This is all so fascinating to a geek like me.

That’s all, nothing much happening other than waiting and working on my sites.

As of writing this, the counter in the sidebar says I’ve been listed 42 days and 21 hours. Those of you who know me really well or are a fan of really good, classic sci-fi books will know why I want the call in the next 3 hours.

Speedy recoveries

I attended my second transplant support meeting this week. I enjoyed it more this time. My new grandpas and grandmas were happy to see me again, too. A new guy came right before we started, and since I was sandwiched between two guys with transplanted lungs, I kept my germy self masked up for their safety. The new guy blew me away. He walked in the door and I was half expecting someone to hobble in behind him, but he had on a common post-transplant mask brand. Sitting on my left, I assessed him to be about 60-65 and well-educated. He also carried himself well, so I settled on a guess that he was at least 5 years post and doing fabulous.

No.

He was 4 weeks post. TWENTY-EIGHT days. Not a month out of the hospital, but a month from surgery. He was only admitted for 9 days, and even that was delayed by a weekend. They wanted to boot him at 7 days but it was a Saturday. He had a loud voice and had absolutely no outward signs that he’d had both his lungs ripped out and new ones put in. He had no pain and said that the entire experience from the moment they arrived after “the call” through that day was exquisite. I asked him and the guy who was at 96 days post what incision they had and they both said they had wings. “Getting your wings” is when they go in through the ribs in the back. The younger guy I mentioned earlier also had wings. This is my personal second choice of incision, so I’m quite happy about that.

I don’t think that any single conversation I’ve had in my life has made me so excited for transplant as the one with him at support group. I’m ready!

Earthly security

The really good news since the last update is that I’m still alive. That and I’ve now signed our estate plan documents this week. My wife was sick so we didn’t get to sign our cooperative documents regarding the boys, but I’m all set. She’s going in next week to sign those and her documents with me. The entire estate plan process has been another blessing. A lawyer friend from our church group called in a favor with a former classmate who went into estate plan law and he took us on pro-bono. We’re about the same age and he also has two boys and our situation felt right to him for this privilege.

At no point did he rush it, either. He explained everything, even educated us on estate law when we asked an interesting question that could involve unintended consequences if we chose poorly. We covered our wills, health care surrogates, durable powers of attorney, and temporary health care papers for the boys if we are ever both out of commission for a while. The full package. After we learned about how we were exposed before and how we are covered now, words can’t adequately describe the peace this brings knowing that we have an estate plan. I can’t stress enough how important an estate plan is – do it the moment you have $500 – before your next vacation. This is WAY more important than a vacation.

Setting up with a story

I’ve had a long and storied life… for a CFer. At 38 years old, I’m more than double what the doctors said when I was born. As a kid who had to sit in the hospital for a minimum of 2 weeks per year because his lungs suck, I didn’t think too much about life as a grown-up. In college I was still playing intramural flag football and men’s softball. All this time, I was still getting sick and doing 1-4 two-week IV treatments per year and would bounce back. Around 22-25 years old, I started experiencing the more scary CF things with my lungs and the word “transplant” was uttered to me the first time.

When we got married, it was looking like transplant was just a year or two away with how the previous year was, but over the next 6 years, I significantly brought my lung function up and went 7 YEARS without IVs. It enabled me to run our business between success and the skin of our teeth since 2009 (the number of times we needed between $500 and $7000 in the last week, if not day of the month is well over 50, but it was provided, even if not on the day we wanted, always in time, though). It’s enabled us to foster 35 kids and adopt two through long, ugly, heart-wrenching contested trials, and the delays of the county and state.

Where am I going with this?

Real security

Looking back and seeing why things happen how they do or when and why they do is a favorite past time of mine when I have a chance to slow down and do so. Most often, the lesson I’ve needed to learn has been patience. I feel like I’ve got a PhD in patience since I’m now the guy who waits so long to get things, sometimes they’re 75% off or even free. After ordering something, I’ll wait a week without a status change on the order and then check in to find out the order got held up, so I should have been a squeaky wheel earlier. I’m the one telling other people to be patient… except in traffic. It’s my weak link.

I’m going to make like a glass and go transparent with you and dig into a little Knowing God by J. I. Packard for the duration, but it’ll be good.

Transplant was one thing I didn’t think I’d have to be patient for. This life situation is exhausting with pulling around a 50-foot oxygen tube everywhere I walk, dragging tanks when I go out, and wearing out my wife until she gets sick. Of course, that makes a bad situation worse, because I can’t help to the extent that she gets better and it wears me out so I’m worse off. So I really didn’t think we’d be like this very long. Quite a few people at my hospital waited less than a month and I thought with my score I had a good chance of being like them, but our household guess is before Day 60.

Then I got to the two chapters in the book this week for men’s group that met last night. The majesty of God and the wisdom of God. When you systematically and intellectually put those two together, life gets really interesting. I think I’ll use bullet points generally intending top-down order.

• God is all-knowing and all-powerful – nothing is a surprise.
• With words, the universe and space and all creation was brought into existence from nothing.

I could stop right there, couldn’t I?

• But God is also personal, having walked with Adam, bringing him animals, and later debating Jacob in person.
• Think about the most big or powerful thing you can imagine and then take the logical leap that God is more powerful.
• God is the perfect embodiment of wisdom. “Wisdom is the power to see, and the inclination to choose, the best and highest goal, together with the surest means of attaining it.”
• The highest goal is to bring glory to God in all things.
• Sometimes the answer isn’t “no,” it’s simply “not yet.”

Both I and we have experienced “not yet” nearly countless times. However, it was after reading these two chapters that I realized this might not (and likely probably not) have anything to do with me, yet, not until after transplant. When we talk about perfect timing and this transplant, there are dozens of other things to consider. Someone will be dying to donate lungs. Those circumstances are entirely in God’s control and expand out way further than the donor. It could have something to do with the donor, their family, their possessions, the first responders, etc. Perhaps we aren’t wise enough to see the best timing (duh) regarding the boys and our support network and the millions of factors that affect all of them. Even then, it may seem like horrible timing to us, only to force leaning on God more and realize again who it is that is in real control of things. Everything.

Even so, with all that said and spelled out with logical reasoning, my reasoning and emotions still exist and are having a really hard time waiting any longer. Yes, it’s slowly and very effectively breaking me, which I was hoping wouldn’t need to happen again, but then again, I’m still not all-knowing, so who am I to take a stab at knowing best?

Several times per day, I’ve run through most of this list (and now I will run through all of it) to come to the place where I can still be happy and at peace that perfect timing is the best thing anyone can hope for. Now that I’ve written this down today, I’m there again until I have to run through my loop once more.

No, I’m not exaggerating. Very exciting, but first, we need context. Today was a clinic appointment as a 1-month follow-up from my feeding tube surgery. I’ve officially been listed 34 days.

In the last month, I’ve gained 1lb. I’ve skipped lots of meals from loss of appetite or feeling full from tube feeding, but a negligible gain is better than slipping down below 100lbs. They spent pretty decent time considering times, amount, and speed of the feeds to try to:

1. get me more, better sleep
2. continue eating during the day
3. ensure I am comfortable feeding at night

We’ll see what we work out.

My off-oxygen saturation was 91% with a pulse of 100. My blood pressure was high and my temperature was a tad high for me, so they started considering if I’m needing IVs to ensure I don’t get sick and need admission to the hospital. My PFTs showed my FEV₁ was a steady 23% and only 0.03L different than last month. If they dropped too much, they were going to admit me. I still may get a call today or this week that we’re starting IVs.

The cool, exciting news

We met a different coordinator for the first time today. She walked in and immediately established who my wife was. She said she was one of the coordinators but since we didn’t know her name, we correctly guessed she was from the post-transplant side… so I’ve officially been passed on to the post-transplant staff now. With those formalities out of the way, we were off to talking about health. After a little while she said, “I’ve been seeing your name printing.”

??

When an organ comes available, candidates print out on a list. I’ve printed out multiple times already! The lungs either went to people with a higher score than me or the lungs were not accepted by the surgeon.

I can’t remember if I talked about a “dry run” yet, but we have new readers, so here we go. A “dry run” (or “try run”) is when you get “the call” and go in. They draw blood, check you out from head to toe, you shower, change, and generally get ready for surgery. You can be eliminated that day for dozens of reasons, but if you’re healthy it’s pretty good you’re set.

Meanwhile, one of the surgeons from Tampa goes to the donor lungs (they may be local) to check them out there. He then decides if they are viable for transport and transplant. The lungs can be eliminated right then and there.

Then the lungs travel (or wheel) to the center and when they get close, you’re prepped for surgery. Everyone gets their hugs and prayers in and you’re wheeled into the cardio-thoracic transplant suite. The transplant can be stopped at any point here, even after going under, as happened to another person recently. I can assure you, that would be devastating for me for several days.

You could also be a secondary call. The primary may fail the blood test markers or have unsuitable vitals that day and you’d get bumped up. If not, it’s at least a dry run for you, if not both people.

So a “dry run” is a lot of hype and adrenaline with no happy ending. However (!!) it is a “try run” because your entire support network kicks into gear and you find out what fell short and what worked great. It’s more common than not to get at least one dry run before a successful transplant.

That’s exactly where I am now. I could easily be a secondary call from looking at the donor database and hearing that I’m printing out. I could be a primary, depending on the tissue type or donor height or, or, or.

The call could come any day.

That photo above is CF Fatboy. He weighed 135lbs in June or July 2010. This was on a California vacation. Here I am now. Shocking. 105lbs – keep in mind I’m 5’4,” though. That’s what CF is doing to my body at this time.

The long and short of this week has been that everyone in the house appears to be sick except for me. Boy brought something home over a week ago. I took him to Wednesday church, but that was the last day he was acceptable to be with other kids. I started massive toddler nose-wiping on Friday and moved the hand sanitizer next to me and the Kleenex box. By Sunday, he wanted to learn how to use the hand sanitizer. Rub, rub, rub!

We skipped Easter services – my wife went alone on Saturday evening and I pulled up the live service Sunday on my iPad and used AirPlay to watch on the TV. Unless there’s a hospitalization as a kid I’m not remembering, that was my first missed Easter in person.

Feels like I should have been getting new lungs for that personal record falling. #grin

Clinic this week

We head to clinic on Wednesday morning. They need to see me monthly now for lung function tests and a new tissue type blood sample. I’m sure I’ll cough up something that grows a need for more oral or IV meds. Ideally, I’d like to see a more or less stable situation with a 1-2% point drop in lung function, just to keep the need real.

New home concentrator

We’d noticed an issue since the second day we got an updated concentrator. We asked for a new one because the first one was too noisy and the beep it made when it turned on was like a shriek. The replacement wasn’t too much quieter but the beep was still loud but at least half the volume. Well, this one would start at 3L and drop to 2L within a couple of hours, and after a while, it just gave up and would be running 1.5L or less after 12 hours. I started getting headaches again and using tanks for couple of days.

We got a replacement that is the same model, but we can crank it all the way to 5L and it holds steady. The next day my headache was gone. I’ve since upped my home level to 4L and I run a pretty consistent 96%-98% saturation now. I run 3L when we’re out on a large tank and crank it to 5-6L while walking from place to place.

Exercising

Being listed for transplant, you sign a contract with your Center to be 100% compliant with your treatment plan. They told me to be sure I keep up with exercise because after surgery, you aren’t able to push yourself up from a chair with your arms – you have to do a seated squat to rise.

My legs, while they have lost mass, have not been my problem with my decline, as my recovery will show everyone, but I’m still compliant.

My wife walks two neighbors’ dogs for extra money, so our plan was for me to join her each day at 11:30 to do the 1/4 mile walk to our first client’s townhome & have me grab our mail from the community mailboxes and catch my breath.

Walking there was fine. We even talked halfway there on 5L/min (I can’t believe I’m saying this next part). Then I stop responding because it’s time to breathe for me to get there. Yeah, no talking and walking.

On the way back, I was already silent starting out. 2/3 of the way home, I felt my saturation levels drop, my legs got sluggish, and I looked for the closest spot and said, “Stop. Catch. My. Breath.”

“You can’t even walk home? Stop sucking,” she joked (yes, she’s allowed to joke this way without hurting my feelings because I’m putting strain on her).

After 60-90 seconds, I felt my head return to normal and we strolled along, hand-in-hand now.

In our driveway, I let her go ahead to open the door and I staggered and paused in the drive before deciding to go inside instead of taking another break outside with my tank.

So after 2-3 weeks of difficulty after my feeding tube surgery, I’m back in business and back doing business. It was a good week, especially since I didn’t get sick, even though I didn’t feel well enough to go to Easter services. I did make it on Wednesday night, which ended up being more walking than the previous Sunday morning.

Meta data and the incredible database

Warning: this is very geeky and technical, but I think I explained it well enough for anyone who is interested in the donation waiting list.

Because I’m such a geek, I wanted to spend some time illustrating how cool the waiting list database is. If you recall a couple of years ago when the whole Edward Snowden thing broke out, everyone was talking about meta data. People were saying things like, “Why do I care if they know call times, duration, incoming and outgoing numbers, and some GPS data? It’s all anonymous.” Yes, a lot of data is anonymous, but with enough data, you can create a fingerprint or portrait, no different than putting together a puzzle that is unrecognizable by looking at any single or small number of pieces.

But this isn’t about call monitoring, it’s about the date of listing, organs, transplant centers, blood type, age, LAS, disease diagnosis, etc. With enough of those data points and enough filtering, you can find specific people. Another set of data would be just as effective for me, such as: age, gender, marital status, car situation, home situation, city, and career industry (employer would be a VERY small set). I doubt there are any other 38yo married males with a 2000 Altima living in a townhome in Tampa who is a WordPress developer. Very unlikely.

So about 14 days after I was listed, I ran a report on the database. It showed me that at Tampa, there were only 14 people waiting for lungs with my blood type. However, five were inactive, so that leaves nine. Four had a lower LAS than I do and I was grouped with four. One had a higher score category.

When you read down a little further in the report, you see them broken down by wait time. There was only one listed fewer than 30 days: ME. I ran this report with the LAS reporting so I could verify that the person in that time bracket had my score. Verified. You can click or tap the image to zoom in or get a full-size image.

Today is the day we’ve been waiting for ever since: the day I’d roll off the <30 bracket into 30-<90 days. You’ll notice in the first report that there was one person with an LAS of 30-<35. I played around with building the report different ways and found a nice, concise format.

Sorry for the size, but I wanted to preserve the query and date at the top instead of the most narrow view.

If you want that, here it is. Within the 30-<90 day range, there is one person, they have an LAS of 35-<40, and they have cystic fibrosis. Hmmm, that must be me since there is now NO LONGER anyone waiting for <30 days. You can also see that the 90 days – <6 months category is gone (because it’s empty) and the next bracket gained a person in the same LAS range as the one who left the 90d-<6m bracket  from the previous report period.

Unless someone is added to my blood type for lungs in the next 60 days, I’ll be alone in each bracket until the 6 months to a year bracket. I hope you enjoyed this data half as much as I do.

First of all, I wanted to thank you all for your incredible generosity to my medical leave fund. It’s been a really significant relief of several burdens, including stress from my to-do work list, earning enough for our house and business expenses, and guilt from napping when I’d normally be working. Interestingly, unlike our adoption donations, the vast majority of help has been $25-$50 donations with many, many people I don’t even know who they are. Simply many giving people from the WordPress community who are giving to a fellow contributor to our livelihoods.

At the time of this publishing, the count-up timer reads exactly 25 days, 11 minutes on the active list.

Despite all of that napping and resting, I finally finished (after more than two years of delays because of client projects) the first theme I started for sale. It’s actually the theme this site is running on, so if you run a self-hosted WordPress blog and like how this site looks, you can have the theme on your site, too. So for those family and friends who know me from years ago but are far away, that’s what I do now. I’ve been running my own WordPress digital agency for over 8 years. I’ve been spending the last 2-3 years transitioning away from client work to products and educational courses in long-term preparation for my transplant and the unpredictability of life without an immune system afterward.

Yes, I’ve been planning for this time for years… but life threw us so many curveballs (and blessings in the form of two happy and healthy boys) I just couldn’t get it all done in time.

Family and friends

We’ve had lots of help at home recently. Nana continues to come over to clean and cook us a meal or two per week, as well as periodic school runs, watching the boys, and staying until bedtime so I don’t have to baths or bedtime routines. They did some major de-cluttering of our one-car garage last week. I can now dump my wheelie O₂ tank out the passenger seat and pull it alongside the car to the door now.

The weekend before this, Nana and Papa got cedar flowerbed edging and put them in and re-did our flowerbeds. With Papa’s recent pressure washing of our walks and drive, we have curb appeal for the first time in our 9 years here. They’ve also deep cleaned both of our upstairs bathrooms with bleach and caulking so there is no possibility of mold to get to me.

This weekend my dad hung the entry light we had in our apartment for me. I gave it a shot a couple of years ago but it was a tough situation. It took both of our brains to figure it out because you’re working blind to get the screws into place, but he finally got them in and we love it. Then we did a Home Depot run for one more section of garage shelving to finish getting stuff off the floor and mini-fridge. He drilled all the holes I marked and sawed the boards because we got tired of waiting for the board ripper person to come help us at the store. My wife immediately filled the shelving up with the outdoor toys and beach toys.

Our church family keeps asking how to help but we’re truly at a loss pre-transplant. Our moments of greatest need are getting ready in the mornings and getting the boys fed and to bed, but everyone has kids to do that with their family, so we’ll probably be holding off on their help until after I get the call and the boys need meals. We’ve already got my wife’s meals planned for the hospital and Nana and her sister-in-law will probably be her main source of food while she’s still tending to me so much when I come home. Transplant experiences after discharge vary so greatly, we really don’t know what to expect as far as my abilities, restrictions for healing, or my pain/anxiety/hallucination levels.

We all made it to both hours of church yesterday. I learned walking in that 3L/min is NOT enough for walking that distance any longer. I used 4L to walk to class for second hour. Still not enough. Walking out, I bumped it to 6L and that worked, but it’s really blasting up my nose at that level and feels like a hot poker. I suppose it’s something to get used to. We took a walk today and I used 6L again and did pretty okay for my half-mile.

Oxygen, antibiotics, and feeding tube

In all of this going on, I’m pretty at ease with the vast majority of it. That’s definitely an advantage to be had from having so much advance knowledge this was the ultimate “treatment” for my cystic fibrosis. That said, some things are getting old quickly or are some level of frustrating and discouraging. I need a little rant, partly because my family is done hearing it and because it shows that I’m okay with the big issues and that it’s the little things now that are getting to me.

First to resolve is getting off this 10-day round of antibiotics. I’m getting up at least 3x per night and not getting enough sleep as a result. It’s really messing with my night feedings.

We ramped up to full volume and rate on my feeding last night and it’s really not comfortable. It ran from 8p until 4:20a and I felt uncomfortable and was burping intestines for an hour after waking up. I can’t adequately convey how much I hate that. That didn’t happen with 2 cans of formula and it doesn’t happen with 3 cans at full rate so it finishes early enough to keep sleeping after I disconnect and flush the button. My most recent frustration was a discovery in the car on Friday. I can’t cross my arms while relaxing with the feeding tube button placement. Unless it’s completely touchable and movable at some point, it’s out of the question.

Our home concentrator runs 24/7 while I’m home. It’s supposed to be rated to 5L/min. If we leave and come back, turned on all the way, it gets to 4L for a while, but slowly creeps down to 2L, which is too low for me now. I’ve been waking up with headaches again. We last turned it on after church yesterday and It’s now right at 2L. So we’ve got to call and see to getting a new unit. It’s silly to mention this with the litany of real issues, but we’re all the way done with this 50′ hose. It snags on corners, stools, pillows on the floor, kids’ feet, gets pinched in the baby gate, has to be maneuvered to go up or down the stairs, and is an extra tube at night with the tube feeding. The call can’t come soon enough.

It’s now been almost 3 weeks since my feeding tube surgery and I’m almost used to it now. My pulled rib muscles have eased and the nerve pain is gone. Now it’s strictly the passage (stoma) itself that gets a little irritated with jostling or big coughing fits… yeah, stomach acid burns. I even made it to Boy’s baseball game on Saturday. Wore my backpack oxygen instead of dragging my tank on tiny wheels! We swung by Redbox on the way home and I got Dr. Strange for my first viewing of it and my wife went to a baby shower and hung out with her sister until late while Nana and Papa had the boys until half an hour after she got home. I watched the whole movie and all the extras and really recharged my geek batteries.

When clinic called

I was having a rough energy day on Monday that prompted me to step away from my desk before lunch and grab a few winks. Then I repeated around when school was letting out. Right before everyone came home from school, my phone rang. It was the clinic number. Of course, now this incites much involuntary excitement but I’m pretty sure it won’t be a clinic number calling – hospital prefix, maybe, but not clinic.

It was my new awesome pre-transplant coordinator saying that I cultured strep and they wanted to put me on a round of oral antibiotics. I hadn’t been feeling the best for the past 3-4 days but I’d attributed it to pushing it at my desk too hard. I guess we can see now how a raging lung infection affects me with 26% lung function. It doesn’t feel great, but they clearly caught it super early since I didn’t call them yet. This made me feel super safe with them going forward post-transplant.

Now I’ve had 4 doses and am feeling considerably better (which is odd to say since I’m still on O₂) than I did on Saturday and Monday.

Making new friends

I’ve made quite a few new friends on Facebook since I re-joined to make our secret page for family and friends. I joined a global lung transplant group and one that’s just for my hospital. Having a lung transplant is starting to feel like an initiation into a super cool club. I guess the evaluation and waiting on the list is their idea of hazing. 😀

While I felt really grateful to everyone in the support group we visited recently (I forgot to mention that), they were all seniors and none of them had CF. Their knowledge and care is evident and I’ll be sure to tap it as long as I can and still live my life with our family, but there is something missing in camaraderie when there’s a 30-year age difference and they were faced with sudden transplants because they hadn’t lived with CF their whole life. Well, then I found one.

In support group they kept mentioning one young guy who came, got his new lungs, and stopped coming to go live his life and I found him when his mom answered a question for me. I read his whole story from listing to now, at my hospital, living life in the Tampa area. I can’t put my finger on why, but reading his story and seeing his photos at the actual hospital I’d be at and dealing with CF after transplant really put things at ease. He just celebrated his 1yr 2nd birthday, as we call transplant day, on March 31st.

Some interesting facts for the readers here:

• His lungs were put in from the back. It’s called “getting your wings” among lung transplantees.
• He gained 23 pounds in 2 months and was blowing a 94% lung function.
• 33lbs ater 5 months and 102% lung function.
• The docs discharged him after only 11 days after transplant!
• He felt so good, he went to a Lightning hockey game a couple of days after coming home, but that didn’t end well, so I’ll learn from his example.

New stuff

You may notice that I put a ticker in the sidebar set to the exact time we got an email from the coordinator that I was live on the transplant list.

I found myself using meta data and searching the national organ list database. I’m the only person at my hospital listed in the last 30 days, so it was pretty easy. Yes, I’m that geeky.

I’ve created a new segment in my CF Fatboy MailChimp account so you can subscribe by email for updates to this site apart from Facebook. I don’t believe you can get multiple emails per day if I post more than once per day. I’m going to set them to go out at 11am every morning to hopefully ensure the doctors have done their rounds and I’ve done any morning stuff the nurses need me to do. The form is in the sidebar.

These posts will almost all be from me, but my good friend Ben in North Carolina may do daily updates here based on the Facebook statuses and keeping in contact with my wife. I don’t want her feeling like she has to post to too many places because I’m in infoholic. As soon as I’m able to post (and not use the force to close windows on my MacBook) I will be. No multi-day lapses here, folks! I’m ensuring full coverage, as it’s very important to me to document this for me and for anyone else coming along after me to know the whole deal.

I leave you with a video of me trying to use The Force while on muscle relaxants and pain killers after my feeding tube surgery.