New Lungs for Jesse

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

May Week 3 Update – The New Normal

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Life has more or less calmed down into a rhythm that is more or less like it was in early January before my hospital stay. Aside from my dependence on supplemental oxygen, the tube that goes with it, and my feeding tube, things pretty much are how they were.

When I was admitted and they said it was time to get evaluated, it still seemed like it was unnecessary because I had just been hiking with no air tanks. Then the realization hit me that “this is what it feels like” when “it’s time.” For months, and years at times, it just seemed like getting older or a bad month or day. Then we fixed my heart last January and thought things would get better. Then the stress of a second adoption was over.

It became apparent that I was out of excuses for feeling this way and, while 30% lung function wasn’t my transplant trigger, 23% was.

Now it feels like I’ve hit a new normal while waiting for The Call. More and more we have a normal routine day with a regular schedule we have grown accustomed to over time, kid-adjusted, of course. I no longer get up at 4:00 but sleep until 5:30 or 6:00 most mornings. I’ve caught up on sleep because I no longer need an afternoon nap to function or stay “well,” but that doesn’t make me immune every day from falling asleep on the couch after dinner. Regardless, it’s way less often than it was in March and April.

Most weekdays I’m at my desk for 6-8 hours, but work has dried up, so I’m slowly working on long-term business projects that will help when I’m back. I take breaks when I want and watch streaming movies at my desk. When work does pop up, I get it done and that extends our window a bit. One client is ready to hand me something with a rush tag next week, so that will be fun. My skills are once again honed, unlike what they were when I got back to my desk in March.

Lest I feel like life is still business as usual, I still get knocked around if anything happens to my oxygen. Yesterday I went out into the garage on room air only to re-connect a car seat using the quick-connect hardware. The belt was short enough that I had to get up into the seat and bounce on it with my knee in the seat to get it to click into place. I knew while doing it I was getting into trouble. I stumbled inside and grabbed my air and laid on the tile floor like a fish on the beach.

Yeah, just in case I thought I was okay… no, there is still a knife’s edge to be walked. Things are fine under certain conditions. I must stay within those certain conditions. Vigilantly.

Last post update

Moments after I published last week, my phone buzzed with a message from a relatively new friend (I’d only had his phone info for less than a month). He was asking what they could do for my wife to recuperate and recharge. After throwing out ideas of what she likes and can/can’t do, he said to hang tight… she’ll love it. Well, they got her a spa day for Mother’s Day! She’s never done a spa day, so it was perfect. Now she just has to choose when to go — pre- or post-transplant. I think she should go ASAP because once I am home, I’ll quickly be surpassing how I can help now.

List update

The list is growing and shrinking. They’re doing a lot of transplants recently. One CF person we’re following got her call on Mother’s Day after two previous dry runs. Very happy for her… as she’s already doing laps and will probably try some today without the walker. Her sister reported doing 800 feet yesterday.

Mother’s Day was hard for us. Not sure why, but despite my belief that I have learned patience and was satisfied to wait for perfect timing, I got it into my head that we’d get the call on Mother’s Day. Celebrations, drinking, distracted drivers, etc. — I guess I just believed my phone would ring and there was no reason for it not to. So after a fun day, I came home sad.

Now it’s official: I’m done expecting the call at any given point. This isn’t my script and I’m not calling the shots. When it’s time, we’ll rock and roll.

Never before

I don’t know what was in our baked potatoes last night, but we laughed so hard at dinner. Things that Boy said were funny. Things I said had my wife laughing until she was red and I saw a vein on her forehead. That was a first. I didn’t know there was a vein there. i knew I should have written down what I said that was so funny so I could share it.

I think that Boy liked that we were still able to laugh so much with all that’s gone on. I know I liked it.

May Week 2 Update – Don’t Worry About Me

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Per normal, I’ve been checking the waiting list every weekday and there has been a lot of activity. People being added and transplanted at a pretty rapid pace. The transplant team is a well-oiled machine with this many going on! Most additions are O-type blood, so they get priority over O donors, but there are now fewer A blood type recipients on the list “ahead” of me.  At this point, for a local donor, there is only one person I am reading the list as being “ahead” of me. Aside from that, either by not being local or being an O donor, it’s all going to come down to being the best match. If you’re interested, I found this neat page on how they allocate donated organs. I received this from one of the coordinators after she returned from vacation:

I only have donor offers from 5/4 until today and you [sic] name appeared twice but they were not local donors so you were pretty far from the top of the recipient list. Remember the donor hospital gets the offer first and then the offer continues to go out 500 miles until someone can accept it.

That was sent on the 9th, so between the 4th and 9th, my name printed out twice… but I digress.

A change of view

I’ve fully come to the viewpoint to remove myself from this equation of receiving a transplant. It’s not about me or any attention it brings or reminders that my life is different than most people can imagine now. At this point, I’m sleeping as well as normal unless I have a bad feeding tube night. I’ve always had bad lung nights, so that’s no different since being listed. My brain has calmed down during the day and falling asleep never has been difficult.

There are other forces at work that are being orchestrated to procure a donor who has the perfect set of lungs for me… or the perfect set of lungs that will continue the narrative that my life is supposed to follow on for a greater purpose.

Last night, the guys in men’s group, acknowledging that I’m the master of disguising how I really feel, asked how I’m really doing. I responded with what I said above because that’s really where I am right now. I’m not at all sweating the big things. I panic over little things like timing day-to-day activities, seeing things the boys do and feeling like I need to rush over and stop them, etc… but that’s new. Perhaps it’s because too much of my brain is blocking off major issues that it’s not handling the little things, but I’ll leave that to a psychologist to figure out.

Who does need the attention

My support network is more of a concern regarding burn-out or wearing out. Everyone has been on hand basically since the start of February and on alert since I got listed 8 weeks ago. Several of my family members in support have their own health issues or food allergies that make the added work and stress worse off for them, too, and every person in the support team is important to sharing the load and filling certain roles, so it’d be a sticky situation if any of them fall out of play. Someone would surely step in but it’d be a scramble we’d prefer to not have.

My donor, too, and their family. Someone is going to die in order for me to live. That doesn’t sit lightly with me. I’ll forever be different after that day — I’ve already felt a difference since facing this. The gravity is too great to be ignorant of the sacrifice. For this, whatever I’ve given or contributed to so far in my 38 years will no longer be enough. The bar will be raised when restored to full health so as to drive even harder.

May Week 1 Update – Below Baseline

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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.

What to Expect After Transplant

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Warning – this is my longest post yet, but I think it will serve well as something to revisit when I get the call and for months after. I will probably make a To-Do/Do Not Do list later.

We’ve got some indicators that the wait may not be too much longer. There was another transplant performed with one of the 9 active people with my blood type at Tampa General, so now there are only 8 people to compete with. You can see from the report below that only 2 absolutely have a higher score than I have at 38.859, but I don’t know where the 3 of us in the 35-40 range fall against my score. I’ve emailed one of the coordinators to see if my name printed out for this transplant or any others that didn’t happen since my clinic visit. I’ll update this post and our Facebook group with the reply if it comes after I publish this.

What happens to the patient after transplant?

The stories vary a bit here, but the general timeline stands if there are no complications. This is a combination of what we’ve been told about our center and what I’ve learned from following CF transplants for a decade.

Surgery lasts 6-12 hours and they come out or call to update every couple of hours like, “The left lung is in now and it is a perfect match and fit. They’ve started the right lung.” The large variation in time depends on how difficult it is to remove the diseased lungs and how good of a fit the new lungs are. I’ve read on numerous CF blogs and in the transplant groups that CF lungs sometimes attempt to grow into the chest wall in a desperate attempt to survive. In those cases, the lungs aren’t simply disconnected and pulled out, but scraped out.

After surgery, patients are sent to cardio-thoracic intensive care (CTICU) for several days for very close 24/7 monitoring. One guy in support group said “Your job in CTICU is to give the nurses information about your status any time of day they ask, it’s not for rest or sleeping.” Once I’m in there, the primary support person is able to see the patient through their room window and are then told to go home and rest for 24 hours when they’re allowed to return and be in the room.

— I’m going to switch persons here to make the audience other patients because it’s about to get weird in this person (which also reads weird, too). —

You are secured by your wrists with restraints so you do not pull out the ventilator tube (being intubated), which is the natural reflex to do. The nurses are there when you wake up. They make sure you’re okay and stabilized as they wean you off the ventilator. At some point they pull out the tube that is all the way down your trachea and have you cough to get out any fluid that built up. “First breath” stories vary from being underwhelming to a mountain-top experience.

At some point before or after that, I’m not clear which, they sedate you again for a while. Within the first 24 hours, they have you sitting up in a chair. This is to let the lungs hang down and expand to fill the chest cavity. As someone with CF who has had his lung function slowly decline over 25 years to where it is now, I no longer take anything near a normal person’s deep breath. My normal breathing is a pitiful thing for someone with healthy lungs. The big challenge with new lungs will be to learn to take a deep breath worthy of the gift that’s just been received. Sitting up helps that. They also have bedside breathing devices that measure inhalation instead of exhalation. Right now I’m lucky to get 2L in a deep breath. Remember that figure – it will be wildly different post-transplant.

After surgery, they have two types of drain tubes placed in the chest cavity to prevent fluid build-up that would impinge the new lungs. They place between 4 and 6 larger tubes and a couple of thin tubes. They are uncomfortable, to say the least, but they are pretty quick to give an epidural for pain. No one I have spoken to at Tampa General has said they were in pain after surgery, which is an incredible relief to hear since lung transplants are the most difficult and dangerous of all solid organ transplants.

Between 18 and 48 hours after surgery (the next day seems to be what I see most often), the nurses stand you up and gather all the drainage tubes and devices, IV poles and tubes, and take you for a walk around the unit. It’s slow and steady (or unsteady) to start because of how much is hanging out of you,

As the days progress, they will remove more and more tubes and you walk further and further – miles, even. Things start to feel more comfortable and getting around gets much easier. All the while, they continue to draw blood every few hours to get your levels on the meds and adjust accordingly. They do everything for you. Now that I have a G-J Tube, I can get feeds without eating, but after a while, they perform a swallow test to approve you to eat by mouth. One recent person chose Mt. Dew and a candy bar. I’m right there on the drink idea.

As you gain in strength and adjust to being on so many new meds, they teach you and your support person about the medication routine, telling you each time what each one is for and when you’re taking it. In the past, for my entire life, medication has been the biggest issue in the hospital, so to see how it’s meant to be done by the best of the best will be much appreciated. I will finally let my guard down and trust the staff to not do something horrible.

What’s the deal with the new medications?

Any new organ is seen as a foreign invader to the body’s immune system, which says, “You are not like the rest of me, so I will eradicate you.” This eradication is called “rejection.” Organ rejection can take a couple of days or months, depending on why there is rejection and how acute it is under the supervision and medication. “A few missed doses of immunosuppressant meds and you’re toast,” is what I was told. This is one reason why CFers are so successful with transplants compared to people who smoked and got COPD or someone who got some acute pulmonary illness that took them from healthy to dying. We are used to taking meds every day. We’re also typically 1/2 to 1/3 the age of most of the other diagnoses when transplanted. The people in support group could all be my grandparents, so I’ll naturally bounce back from surgery faster than them just based on age.

Immunosuppressants will take my immune system all the way down, just shy of chemo state. In fact, chemo is used when nothing else is helping solve a bad case of rejection. They simply nuke the immune system away until the attack stops. This means I will live in a bubble for a little while. I’ll wear a mask any time I go outside for 2-3 months and for several months after that when I go inside with other people, like the stores or church.

Also some foods are off the list after transplant are undercooked meats, so no sushi or steak less than well done. Yes, I am a rare steak eater, and that will be my biggest sacrifice post-transplant. Buuuut… breathing… rare steak… living… rare steak. Ok, well done steak, it is!

They also discourage gardening, buffets, and doing much of anything where water, mold, and dirt are involved together. There are many fungi in situations like mowing, garden dirt, or pressure washing. I currently have a fungus in my lungs that prevents me from staying on Prednisone to feel better because the fungus would thrive in that environment and take me down instead of feeling better on steroids. Some foods interact with the meds, like grapefruit – I hate grapefruit anyway.

However, most precautions revolve around infection potential and these warnings vary from center to center and you also have to decide if you’re going to live in a bubble or go enjoy life. It’s an incredible balancing act.

I should be cutting out most, if not all of my inhaled meds and chest physiotherapy that makes me get up 2 hours before everyone’s day starts. Some people and some centers keep people on some inhaled antibiotics for a few weeks or months, but rarely longer than that, but since you can catch something so easily, the need might arise to take antibiotics at any point.

One of the big dangers post-transplant is cancer, due to the immune system. Skin cancer is all the rage with Florida patients and our newfound love and ability to go out and enjoy life. I’ve long been living a shady life – a solid decade at least. My golf tan from my HS golf team days has long been gone. We’ve stayed under the trees and a canopy our entire time dating and in marriage. I stay under the cover at the neighborhood pool. I’ll start wearing long-sleeve shirts and hats even more than I do now.

With the nasty, infected lungs gone, your body no longer needs to fight against such a raging infection 24/7/365, so we start to put on weight in a massive way. Between tube feedings and my food not being spent on infections, I fully expect to gain 10lbs per month for 3-6 months.  At that point, we’ll be doing a fundraiser for new clothes. I kid, I kid! We love Goodwill and I have lots of clothes from my brother-in-law that are too big for my ideal weight.

What happens for family and friends after transplant?

It’s pretty common for everyone to want to come over and see the newly transformed friend or relative. As I said earlier, I’ll live in a bubble for a little while. Whenever anyone does come over, we have a sanitation station complete with a mask and glove box. When Boy comes home from school every day, he’ll go straight upstairs to change his clothes into “home clothes” and wash up.

I’m switching to first person now because this is what we’ll be doing, or what I/we plan at this point.

A quick note, things could go less than ideal before discharge. The number of complications are vast, but usually revolve around gastro issues or temporary issues with getting the lungs to settle/inflate/heal in the “normal” amount of time. One person was recently in for over a month and had and additional surgery that delayed leaving. Barring issues, I expect to be home within 14 days. There are also issues that carry with the new lungs. One of them is cytomegalovirus (CMV). It’s what causes mono in kids and often never shows symptoms, but is carried unseen. With a weak immune system, it can flare up, much like shingles do decades after getting chicken pox. These things will forever be a possibility and something that we chase down numerous times.

While I’d love visitors in the hospital, that’s probably very close to out. It’s definitely not ideal while in CTICU, but manageable in the step-down unit. I think I’d prefer to FaceTime and stick to this site and Facebook. I have my wife to update them and a close friend who has access to this site to publish and keep up with donations or sidebar items. Most of our friends have school-age kids or grandkids and could be carrying something without knowing it. I’d rather not take that chance in the hospital.

Instead, the sidebar has the mailing address for the hospital (don’t forget my name in the address). It’d really lift me up if that got flooded and we could put cards everywhere and I’ll be spending a lot of time in the chair and out walking when I’m discharged. I promise we will be taking lots of photos and videos. I might even brave a Facebook Live walk down the hall once we have some saved on our devices and can possibly schedule a walk to announce it beforehand. How cool would that be!?

While admitted, we will need the entire townhome and both cars completely sanitized from my past infectious germs. My mother-in-law is leading the charge there but the list includes:

  • dusting and wiping all surfaces… possibly re-painting the walls (I don’t think we have a consensus on that because of how much stinking work that would be)
  • sanitizing anything that I use – keyboards, pens, toiletries, glasses, drink bottles, etc.
  • deep-clean the carpets and tile
  • burn my car to the ground, collect $300 insurance
  • clean/sanitize air ducts/vents
  • sanitize or replace indoor air handler (currently very suspicious condition)
  • UV light in the air handler
  • replace all air filters, everywhere – vacuum cleaner, car cabin filters, A/C unit
  • replace water filter in refrigerator
  • I have a reverse osmosis filter kit that someone could look into installing in the kitchen

So you can see there is a lot for my support network to handle for me while my only job is to stay alive with improving excellence in breathing for a solid month. How do you like me making two jobs into one? That’s something only an English degree can buy.

After the point we get me back home, we don’t have a clear picture of what we will need and what we should accept with concerns about any dietary items or safety protocols we still don’t know about.

The biggest change apart from my ability to breathe will be my medication and morning routine. I’ll make no effort to work for the first 2-3 weeks after discharge, so I think my new routine will include a lot of deep breathing, walking around, exercises, and enjoy not being tethered to an oxygen hose.

The second biggest change will be that I will not be allowed to be left alone for 3 months. I can’t stay home while my wife does the school runs or errands. I think we’ll get lots of quality time together if she’s not tired of me after taking care of me for a week or two in the hospital or however bad I get before I get the call. 🙂 The morning drop-off is quick, but picking up takes about an hour. Everywhere I go in public, I’ll be wearing my 99% particle blocking mask.

I’m going to be quite eager to get out and see people in public places to catch up with friend and family and maybe dance a jig or do some jumping jacks. Some things will take coordination, like if my wife drives me to men’s group, I’ll need a lift home or if we are out doing an activity, someone will need to stay with me at all times, so I won’t be getting any introvert time on long days with people. Being an introvert was a bit of a built-in help when I was having a bad lung day because I’d sit and chill while everyone went around the kid’s area at Busch Gardens. Now I’ll be right there with them or we’ll be going with others. Minor things, really, but things to sort out.

Hey, alive beats dead!

After my meds stabilize, I’ll be cleared to drive again. Then drive alone when my wife feels comfortable. Around that time, we’ll probably start doing extended family stuff in homes.

The big rule after transplant is that if anyone has been around anyone who may be sick, they need to not come or I need to not go if it’s their house. It’s hard, because when people make plans to do something, it sucks to cancel because you have a runny nose or sore throat. What sucks more is a life-threatening infection. I’ll definitely wear a mask at church because no one stays home when they’re sick. I’m even guilty of that.

I think this is enough words – pushing 2500 now.

April Week 4 Update – Dragging On

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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.

April Week 3 Mid-Week Update – Exciting Clinic News

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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.