The Breath in my Lungs

Remember your graduation day? It could have been high school. College. With today’s new thinking it could have been Pre-K, Kindergarten, 5th, 8th or any other number of “graduation” days we have invented but that is for another day another blog.

For me graduation was high school. First most important day of our life events. We aim for that day. That day is marked on the calendar. Can’t wait for that day! I mean it is THE DAY! Graduation! What a day it will be and once it arrives…

There is the day after graduation. Do you remember that day? Remember, the sun came up. You didn’t have to go to school. What did you do? Your life was still ahead of you and your plans were grand. Or your plans were developing. Or there wasn’t a plan except to see the next sunrise. My plan was college and here are my proud parents in my dorm at Bowling Green State University. Didn’t I look like I had a plan! No. I didn’t think I did either and I was there.

Today, February 28, 2023 was a graduation day for me. Today was my 1 year anniversary of a bilateral (double) lung transplant. Just saying out loud gives me chills. Now that I have graduated from recovery school what are my plans? I mean like high school I have my whole life ahead of me right? Absolutely! Now all I have to do is work on that plan that I have planning for the whole year. About that plan.

Plan one was taken from Jim Valvano the head coach of North Carolina State national championship basketball team of 1983 which was survive and advance. That seemed to be the plan for a solid six weeks. All this while I planned more but nothing seemed to stick. I was searching for what I have no idea. My life made the quarantine seem like child’s play. While you were coming back into the world I had to hide.

Okay let’s make some new plans but first let me enjoy this graduation day for just a few more minutes. We (Cindy and I) ate out for the first time since before you couldn’t. It was a good plate of Romano crusted chicken at Cheesecake Factory. It was good. There were some sourdough cookies and milk. Tomorrow it’s back on the dietary regimen that has dropped 55 and counting but for today I think I’ll enjoy that last 11 minutes of February 28, 2023. Graduation Day if you will. Where’s the party? You know I’ll come up with a plan tomorrow but for now I’ll enjoy the day.

http://www.donatelife.net

Two types of distance running styles. Type 1 is to take the lead and dictate the race. Let them come and find you. Type 2 is to keep the leader in your sites and when the time is right you “kick” it in gear and catch them at the finish. Might be a third type. One that just is trying to hang on the whole way. Victory is in the finish. Victory is the journey. Victory is as Jim Valvano said never giving up. Don’t ever give up. One day I’d like to call myself a 1 or 2 but today I’m proud to be a 3. Here is how it went…

Really wanted something in the tank for this race which is hard to do when the tank is still working on getting full. I walked, ran, jogged, walked some more BUT was going to run the final 100 yards. 300 feet. THEN collapse. Well…in the final mile I made move to run and something popped. Upper, inner thigh. Ya, that part. Groin. Enough to make running extremely difficult. That said I told Christy (oldest daughter and running partner) if I have to drag it (leg) I am running the final stretch.

Trying to make the leg work for most of that mile was not effective. Walking fast was a pain but as we neared the top of the incline and the right turn home a camera man appeared. Time to run and ham for the money shot as you see above. In my line of vision was the family. Julie, Ryan (son-in-law) and the grands Elliot and Amelia. Amelia cheering with her “Go Pap Go” shirt and pom poms. What leg pain?

In a second she bolts for us. Runs to my hand and is running me home. In that moment I could barely contain my joy. Christy took her other hand and we covered the final 300 feet as one. I now wished this race could just go on and on.

My eyes were closed to pray thanks for this next step in the journey as we crossed the line. Once we crossed the fun really began. Amelia got my medal and she is convinced she ran the race completely. She got all the goodies and was one of the gang right down to the photo of me celebrating a personal record. Leading up to the race I said that no matter what time I ran it would be a personal record. Turns out it was my best effort! When I started running these races I was running with undiscovered cancer, cancer free but chemo loaded and finally with jacked up lungs pushing a stroller loaded with oxygen. No wonder this was my best effort.

Amelia wants to “run” another race so…New Smyrna has a 2k Dog Walk. Another BDR in May. The Pierogi Run in Cleveland July 1st. All these races are like that carrot dangled in front. Keep moving. Don’t give up. Don’t ever give up and don’t forget to kick. Kick all the way.

Well it’s not really a joke although everyday there were a ton of laughs all because of a simple card game-Euchre (Pronounced U-ker). It doesn’t matter if you don’t know the game, just know that the game was the first in many connections between Ed and myself. Just like Humphrey Bogart in Casablanca at the end of the film when he utters the infamous line “Eddie, this looks like the beginning of a beautiful friendship.” Well it was actually Louis but you get it.

Whenever our first encounter took place it was safe to say that the meeting of two animated characters went well. I know I asked before anything else if he played Euchre. I was obsessed from my college days at Bowling Green State University in Ohio. If the answer was yes I knew I had me a northerner. The game is a staple from Ohio to Wisconsin and points in between. It (Euchre) then moved the conversation to our home state and to places I would not have thought possible. We had a lot to discuss and thankfully we had the same lunch.

Lunch during our time at Durant was special. Mainly because it was a full 50 minutes long and if you had a conference period on either side you could really have a nice time. Enter the card game and a need for a couple more players. Since it’s a northern thing and our band director Dan Dubay was from Detroit-3rd slot filled without a hitch. For the fourth we simply told David Peacock he was in and he could learn on the fly. Science teacher and soccer coach. He had our lunch and was also a Thespian so let the fun begin.

Poor Dan was as straight laced and focused as you could be. Ed, Dave and Al uh not so much and that’s where the fun fit in. During any given hand of Euchre a simple gesture, word or look would result in us reliving scenes from our favorite movies all while playing cards. Each of us taking any character and switching on another day (after 10 years we had some reruns). Thing was we all were well versed in many the same movie. Monty Python anything including the TV show. Princess Bride. Blazing Saddles (and yes we are NOT that bloody stupid) was some of our best stuff. Man Ed could laugh. He’d cut loose and shake the room.

You know, the thing with card games is that it allows for simple conversations. 12 years of these conversations lead to much more. I found a friend. Not acquaintance. Not work buddy. The kind of friend that just makes you proud to know them. The kind of friend that made me better. The kind of friend that called me family. Ed and Anita actually have been a part of my life since March 1982 only we didn’t realize it until we connected at Durant 16 years later! (Crazy story not for today )

Euchre started it for me and Ed and 24 years later I tell you as much as he lived life to the fullest he absolutely met this final challenge with the same spirit. He never gave up. In many conversations in the past year he never BPM (Bitch-Piss-Moaned) about the cards he was dealt. He looked at that hand and kept playing. No fold. All in. Euchre is a simple game. Sometimes you get cards that make life easy and sometimes you are dealt a hand that just says oh well maybe next time. Ask David or Dan who was most likely to win a hand with absolute garbage. Ed. He didn’t win them all be but he never thought he couldn’t.

To the man who could take a Queen-9 off Ace and make it a winner I say thank you. Thank you for being my friend.

Remember that I am home and recovering well right now. Any mentions or pictures that look bad are not happening now. I think…

And much more! Initially the move to the lung transplant wing is exciting. It’s a move closer to getting out and getting better. I must tell you though, the actual ride from ICU to the (Halle’s) 7th floor was one that I barely survived (Halle’s was an old school department store in Cleveland and Mr. Jingeling was keeper of the Christmas keys. Click to listen and tell me what words you know we inserted on our own).

To get me from one bed to the transport bed a “Transport Team” was called to action. Mostly big guys that could lift and hold patients in place during transition. Can take a while to assemble them as they have other tasks. Well one guy that was part of the move Al movement looked capable of the job all by himself and he was pressed for time. No planning on his part he just hoisted me out of the bed to my feet and said I have to go. Good for everyone I was steady at this point. Not mobile. Steady. Once I flopped into bed the ride was just beginning.

The move crew debated which way to go. Once at the elevator I noticed there may be one way to get me on the elevator. Narrow hall. Little room to wiggle around. There was a cutout opposite the elevator door BUT you had to take a second to calculate the right approach. Well…I had three “new math” graduates plotting my demise. To not exaggerate but make it clear when we got to the third attempt I clearly stated what they should try now. One of them said, “Ya. That might work.” Once in the elevator they had to dismantle the footboard to get the door to close.

On the wing I now was getting introduced to the transplant way. A tight group of nurses and techs who made me feel like they really were concerned for me. Not that nicey nice thing but a genuine care to the point one night tech wrapped me up like in a swaddle. I was miserable. No sleep past two hours. In fact, two was a goal at first. Pain was bad. No matter what I tried I could not get relaxed. Forget comfort, I just wanted to relax for a bit. Well Michael did the magic trick and got me relief. Mind you I was on Tramadol, Fentanyl and epidural and it took a properly wrapped blankie to do the trick. The crew on the Lunger wing was amazing and a half. EVERY person was on their game a 7 days I was there. Did I mention amazing?

Time there was marked by vitals all the time. Getting out of bed and staying out. Walking and pooping (if possible) and rest to recover. That is hospital stay for everything, right? I planned on mastering all that quickly but the rest. Pooping had a special place too and I will only show you what they expected me to use until I could be sturdy enough for the actual toilet. I waited.

Daytime was filled with all sorts of visitors. Doctors, nurses, specialists and my wife and daughter. Reading was not feasible for me with the pain of hoses and tubes creating just enough distraction if you will to make it next to impossible for me. TV was great when I was stoned. I could hold off on the “good stuff” until late hoping to get some rest. Fentanyl was the good stuff for TGH and sadly in the past 20 years with my hospital excursions I am well versed in several of the name brand relievers. Let me state unequivocally that Tylenol ain’t one of the good ones. What is the point of passing that out except to pad a bill that is already amazing. Told a nurse once that I did not need any more Tylenol as I had traded them for Chicklets Gum (full size) because they gave the same amount of relief but tasted way better.

Back to the Relief Olympics...OxyContin was in 2000 for Uvulectomy (took out my punching bag), tonsils, and deviated septum (nose job). Liquid. This must be what Haight-Ashbury was like in the ’60s. Dreams like so bizarre and nice.

Gall bladder few years later brought on dilaudid. I felt it going through my veins. I was in intense pain in the waiting room and threatened to slam my head into the floor hoping to split my skull and then get relief. Bit of a drama queen. I remember telling a nurse after I had the juice flowing in me that I have people. People that I can call and they would be here in a minute to take care of things if I couldn’t get relief. Cindy was horrified. The nurse looked at me and said “Call them!” I’m bored!

Lungs brought me Fentanyl. Different but very good. Really a trippy high. Woke up once on it thinking my hospital room was a facade. Fake walls and actors pretending to help me! Am I sick? Did I actually have a transplant? I’m going home! I then was working my way out of the bed and walking out the door. Until all the tubes and hose gently reminded me maybe I am here for a good reason.

I’d call it a tie as to my “favorite” but really know how this stuff can get you. I started asking for more Tylenol next day.

I had to leave the “Land of Transplantopia” and start my life anew. New rules, new expectations, new disappointments and some old feelings that I had actually forgotten…like how to breathe.

We aren’t done with the journey of my own personal March Madness but I thought I’d like to give you a here and now update.

It can be so easy to just say “I’m doing great. Everything is going as planned. Just taking care of business and looking forward to being able to join in some reindeer games.” As true as most of that is, it’s a different world for me right now.

In the world of appointments and such I am whirling dervish (the wildly spinning kind not a Muslim religious order who has taken vows of poverty and austerity.) This week there was the acid reflux test where they put probe up your nose into you esophagus to monitor acid, if any for 24 hours) Annoying more than anything. Then there was the normal clinical complete with a chest x-ray, pulmonary function test and the usual blood work.

Wednesday was special. Bronchoscopy. Think colonoscopy but at the input end with a different tube. Doctor runs a camera into your lungs looking around. The squirts water in there, collects it and sends it off to look for bacteria, fungi, scuungi (I made that one up). Then they take a couple snip snip here, snip snip there pieces to look at. Awaiting results of more tests always a good time. I will say based on my results the doctor has pushed my appointment to three weeks. This is a good thing. So when I say I’m doing great it’s not a line. Right now doing great is just that. No time to get cocky. Stay the course. Nose to the grind stone. Pride before the fall. We will get there.

And now it’s Saturday after the practice run. Disappointed? Yes. Now what? Some friends were asking if we were going to work on Monday. Couldn’t think of a good reason to stay home. Still need the job. Staying home would just lead to bad thoughts. Come Monday it would be back to normal. I mean after Friday when would the next chance come? Week? Month? Year? Was that my best chance? You see how work was a much better idea than wallowing in that mess.

Got a favorite Monday song? Come Monday-Buffet. Monday Monday-Momas and Popas. Rainy Days and Mondays-The Carpenters. Monday Morning-Fleetwood Mac. Then there is my pick for this little ditty, Manic Monday by The Bangles. Perhaps you could listen a little while you read on. It’s about to be a full blown manic.

Rolled into Mann Middle School early Monday, February 28. Early is 7:00 a.m. as teachers aren’t due until 8:20 ish. No one there, great time to get stuff done. I missed Friday so I had stuff to do. Dragged in my oxygen. Double tank roller, POC and accessories to go with.

Lot’s of looks and questions from everyone. Nothing much to tell. Tried to give me burnt pizza lungs. No thank you. Here we are. A little after 9 Trinetta Williams stopped by the Media Center and asked if I could help her with a projector problem. About 9:15 I rolled into her classroom and went to work. Easy issue to fix but I wanted to make sure she could fix for in case there is a next time. At 9:25 my phone rings. Name? One I have never seen but because of the lungs I was told to answer everything that rings. Lung calls don’t all come from a Tampa General phone. Now students are rolling in the halls and trickling into the room. I hear something about lungs and transplant so the sharp spoon that I am I blurt out “Is this a joke?” For the record that was not the proper response. She got hot and told me she does not joke about lung transplants and then says “Do you want these lungs”.

I hung up and looked at Trinetta. She said time to go? She stood and I gave her a hug and said a prayer with her. Back up the walkway to media center to gather my stuff and go. When I walked into the media center Nicci D. was teaching the TV production class. She looked at me and said “You got another call, didn’t you?” After I got my stuff and was walking out the door her class clapped me out the door. This time we sent texts to brothers called the kids and headed in.

SSDD only the time table was a bit shorter. We got to the hospital at 11 and was told we were looking at a 5:00 start. Less time to think about the same stuff which was ok by me. Same suspects with me in Cindy and Christy. Needless to say we were all a bit reserved after the dry run on Friday. We get to showtime and all head to the OR. Different surgeon and staff but still relaxed and chatty which is my trademark. When the surgeon brings me the pics of the lungs they have I am stunned. My description of the lungs is that they look like plump Sam’s Club chicken breasts! Doctor said they were big and very healthy. Now it’s a go. Before they turned on the goodnight gas I asked if they could play a song for me. I knew I wanted to hear one and told them the doctor could then play his stuff. I asked for “Try Everything” by Shakira. I got some looks and then I told them it was a favorite of my granddaughter. Amelia would be singing it tonight before bed and I just wanted to connect with her. Out went the lights and when I woke what I felt is almost indescribable.

Monday became Tuesday after the 10 hour surgery. Ended around 3 a.m. I don’t remember what time I was coherent of surroundings but I remember being thankful. Here I am. This is going to be tough with this tube down my throat. All I wanted was that thing gone. As I chewed on it and got told to stop I chewed harder. That’s all I could think of. My family did not take a pic with the ventilator in. I do remember it as step one to recovery. I still had oxygen getting pumped in and it was high volume treatment. Check it out here if interested Thoughts at this point are a little blurred. Some things were crystal clear. Dr. Patel made it clear from day one that recovery starts with getting out of bed ASAP. Good luck getting me out of bed while on that happy juice. Maybe in 39 hours I’ll give it try.

Intensive care unit at TGH is just that, intensive. The comings and goings within the unit are still a blur. Lots of poking and prodding. There were four tubes (two on each side of my chest) draining blood, and other shizz from the chest cavity. There was the usual other tube draining other liquid from me. About the time I was getting comfortable it was time to go. Just to let you know one little weirdness. On the way to Transplantopia (all transplant patients, all the time) there was this ride on my bed to an elevator that only I could see the way this Tetris piece could fit. I only wish I had counted the number of bumps into the walls, elevator and then instruct my driver how it could fit. Thank goodness the Fentanyl was still flowing.

Well…nothing quite THIS funny but still we had quite the laughs. Let me share. A little long but some good stuff

Getting a transplant of any variety is quite the production. As mentioned previously, criteria one is to have lungs that are failing fast and maybe be within a year of shutdown and be in pretty good health otherwise. I was there and now was time to find out if I would be able to get on “The List”.

Three days of testing including a talk with a shrink, financial person, dietician and other physical tests. It all started with a PET scan. Positron Emission Topography. For those who never had to deal, it starts with radioactive sugar injected into blood. Wait a while and then scan. Looking to see if the sugar is concentrated in any one area more than others. Cancer likes sugar. If sugar is located in high concentration anywhere then cancer is likely. Doctors are looking to see if you “light up” on the computer screen. If the radioactive sugar glows THIS was the instant deal breaker. Got cancer. No transplant for you. Once you pass that there is plethora, cornucopia, crap ton of tests to get after. It ends with a heart catheter to make sure that thing is up to the task.

Someone forgot to ask the cardio department if anyone would be there the last week of 2021. Turns out they were short on staff so I had to come back the first week of Jan 2022. When I came back I had to take a covid test. Sure enough, I had it. How did I get it after spending a year and a half in middle school halls surrounded by germ factories? Well, I was in the hospital for three days. Now the catheter is put off for a couple weeks and I had to deal with covid.

Heart catheter and MRI on heart just to make sure are completed and on February 1, 2022 I am placed on the transplant list at TGH. NOW there is a not so subtle change in you. Now you could be called at anytime to come on down and get some lungs. Excitement and euphoria should fill you everyday but something weird happened on the way to getting lungs–they actually called.

In that second that you see the caller ID as Tampa General everything changes. All the plans to continue getting ready for the transplant are done. Whatever isn’t done isn’t getting done today. Passwords for accounts, bill paying, email and anything else had better had been laid out. What did I forget? What do I need to do? Where are my pants? Pants!? I’m going gym shorts and t-shirt. Crocs. May as well go commando too as I’ll be putting on that fancy dress/gown once I get there. Driver license and insurance card. Call came at 4 a.m. and asked if I could be there by 8 a.m. Uh, ya! Try to get things going. No food for you are going to have surgery today. Little water. No coffee. Called brothers and my three children. At 8 a.m. I am registered and on my way to a room. Wow this is fast. In fact it has been all of 24 days since I was placed on the list. February 25.

Fast forward 12 hours. Still in my room. Been poked and prodded and waiting. Wife and daughter with me all day. No worries. Ready to go. Square with everyone I can think of including God. Square with God for a long time. Challenges like cancer in 2015 and now lungs of 2022 just reinforce your faith or prove you lacking. If I go into major surgery and don’t make it out I won’t even know. I plan on being in glory but those left behind have the burden of the loss. I was ready.

8:30 p.m. Go time. Wheeled down to the O.R. and that talk with the anesthesiologist. There’s your special talk. That speech will scare you. Sign here as you might die, have a stroke, have a stroke then die. When they finished there was a nurse who would be with me in the OR. She leaned over and asked me if I was praying man. I told her yes. She and a colleague covered me and proceeded to pray a prayer that was amazing. It was also long. I mean a solid 3-5 minutes. When they finished I felt like game time was here! I actually let out a pretty loud LET’S GO! Away I went into the room.

Once there it was operation as usual. People scurrying around getting final prep for a long night. Doctor asked not to start anesthesia until he could inspect the lungs as they just got there. I could see the doctor through a glass wall looking at the lungs. Doctor came in with his phone in hand and heading my way. He was showing me the lungs. His conversation started by showing me a picture of the lungs and saying well I’d have to cut this off here and maybe cut this off there. You see these lungs are diseased. They could work for a short time like 6 months but then there would be trouble. What would be going through your mind laying on that table? I’ll tell you my thoughts. Those are not going into me. (Christy saw the pictures after me and said it looked like burnt pizza with black bubbles and all) I listened and wondered if he was waiting for an ok or not. I then asked if he knew Dr. Patel. (Patel is the leader of the lung transplant team and the guy who I had that great conversation on my introduction to the transplant team). The surgeon said yes. He is my partner. So I asked what would Patel say about these lungs? Told me he showed them to Patel and he said he wouldn’t have accepted them. I simply said why are we having this conversation then. Get me out of here.

Stopped for a McDouble on the way home. I was hungry. I was tired. No lungs for you.

The double exclamation points doesn’t do total justice to how I barked at the man who would hold the final vote in whether I made it to the lung transplant list. I mean I didn’t cuss him but we came to a place of understanding that day in November of 2020.

My lungs had progressed to a point where my pulmonologist thought it was a good idea to send me to see the transplant team at Tampa General. Just kind of an introductory thing in my mind that turned into a defining moment in my life.

The man in charge of the department had a way. He came in strong, cocky, a bit over the top and I knew we would get along just fine…as soon as I let him know who I was. He came in with an entourage of Transplant Coordinators, nurses and a cast of thousands (well it felt that way). He had all my records and just jumped in as to what it took to a part of the program. “Why can’t you lose weight? I mean you lose weight you gain weight. No discipline? You have to take care of yourself for a lifetime like you haven’t yet. There is getting in the best shape you can and then be as near death as you don’t want to be. Like be within a year or less of getting lungs or dying. Can you do that? Your lungs are stable enough now for you to keep going but they are not getting better.”

It was my turn to talk. What came out was me. I just blurted at him in my own strong, cocky and a bit over the top way which most might not find to have been the best plan. “You ever coached before?” I launched at him. He looked confused ( as did everyone else in the room). “You have kids?” was my next blast. He told me yes and then I just rolled. “You ever coach them? (head nods). Good. I’ll bet you coach like your bedside manner which is ok. You see I have been a high school coach for 30 years. Many sports. Head coach, assistant coach. Before that I was an athlete and you could not ask for a better one than me. I didn’t have all the talent but I took my coach’s instruction and followed direction like no one else. You want me do something to get this done then tell me what it is. What do you want me to do right now that will show you how serious this is to me!”

The room was actually still. I don’t think anyone had barked at him like that in this setting. That was my read from the nurses, coordinators and the cast of thousands. He then said I had to lose weight. Get my BMI to a decent place. Start with pulmonary rehab to keep the current lungs working until we can help you. Ok…when do you want me back. December 28, 2020. It was currently the week before Thanksgiving. Then the Christmas season of stuffing your face. Here we go.

Back at work the next day I asked my principal what he had been doing to lose weight all year. Impressive run. Tall man and like me just need to get after it and he had. He told me ACV. Huh? Apple Cider Vinegar with the mother. Protein. Cut the sugar. Ok. I took that bit of information to Google and found Dr. Ken Berry and the Keto way. This is not an ad or my time to push an agenda on you but that day I quit sugar, flour and most all carbs you could find. Did I mention it was the week before Thanksgiving? On December 28, 2020 the good doctor came into the exam room and just stopped. Looked at me and said stand up. He was stunned I was just starting. I lost 30 pounds. Forgot to mention he put me on 40mg of Prednisone to help with stuff in my lungs. If you know anything about Prednisone know that it causes you to gain weight. Want to eat everything. Make you edgy. Whatever…he just looked at me and maybe thought there was something to my words.

Still on keto today. Down 50 and keeping it off for 17 months. Half the battle. The other half was good too as I did virtual rehab. Continued to walk a much as I could. My lungs were not responding to my efforts but I kept moving forward. New job arrangement that happened in February of 2021 had me going to three schools! Two elementary and my Mann Middle. I took that circus of tanks and tubes on the road. So happy I did. I found some more amazing people. New friends. All these new friends also watched the decline and unfortunately for them only got to know me in that state.

Followed his directions and just kept moving until November 2021 when he said to me at a routine appointment, “You have done everything we have asked of you. Time for us to do what we said we can do for you.” I was at the same moment excited and horrified. There is so much to think of when actually getting this process moving. And then “A Funny Thing Happened on the way to Lung Transplant Surgery”

Not many sequels work out too well. We all can point the the Godfather II as the gold standard of sequels as many consider it to be the better I and II. (DO NOT MENTION III AS IT IS A MISERABLE WASTE OF EVERYTHING).

Getting that off my chest let’s continue. What’s your favorite #2? Rocky 2. Father of the Bride 2. Jaws 2. Back to the Future 2. Aliens. We all went and saw and maybe were just a little disappointed. You watched. You enjoyed, mostly but in the end it didn’t meet expectations. So how are you going to feel about “I’m Your Huckleberry 2”? For starters, what is Huckleberry 1 all about? Did it win any awards? Take a moment to reacquaint yourself with Huckleberry 1 which came out on July 19, 2016. Click here now and take a minute to see what is going on.

Hope you took the minute or two to (twain) see where it all started and now we can continue with more like a continuation than a sequel but here we go.

From that beginning in July 2016 I progressed down a road less traveled. Less traveled is an understatement considering what came my way. Synopsis is that in September of 2016 a biopsy was performed on my lungs and I was found to have IPF. Idiopathic Pulmonary Fibrosis. IPF affects .000002% worldwide with 100,000 cases in the United States. This disease is what the professionals call a “progressive” disease. That means there isn’t a cure. When I received that diagnosis I GTS (Googled That Stuff) and then told my wife Cindy not to look it up. Just don’t look it up. We got this is what I told her. I meant it when I said that to her. I believed it. I tried to live it everyday. It was difficult at times. I wondered who would care to work on a cure or solution to IPF with so few affected percentage wise. Thankfully there are people out there who don’t think like me. There isn’t a cure but there are treatments and ongoing research everyday. My drug was Ofev (O-fev). It’s job was to slow down the progression. Maybe buy you some time. It did and for that I am grateful.

Early on I thought this is going to be ok. I had things to do and see! In October of 2016 I had to get two portable oxygen machines to fly to Pebble Beach and officiate the wedding of my daughter Christy and son in law Jeff.

Then there were trips to Colorado to visit daughter Julie and husband. Grandchildren arrived and there we were. In 2017-2019 I could drive without oxygen halfway cross the country. Then as elevation rose I’d attach and get there. Each year got a little tougher. The air got thinner. My activity waned. Summer of ’21 was a real eye opener. I traveled with my house oxygen concentrator. This machine could produce 5 liters of oxygen a minute to supplement me. It wasn’t enough. I kid you not when I tell you I thought I would die playing ring-around-the-rosie with Amelia. (I’ll post that video on Facebook directly) It was right then and there that I truly thought for a moment that this might not end as I thought.

From the beginning of IPF I believed I would be healed. A miracle could and would happen. You see my faith in this journey has been my rock. When I would leave my lung appointments that first year after discovery I would tell the nurses, doctors and whoever was standing there to start thinking about who they wanted to play them in the movie about how we whipped IPF. I claimed Tom Selleck but probably am a better fit with Jim Belushi. I know that prayers can be answered in two distinct ways and I was preparing for both.

All this time I am going to work. By now my co-workers knew when air was low and why aren’t you on oxygen now comments were there to help me. My closest crew at Mann Middle are two of the finest people I know. Nicci and Nina. They are the age of my oldest daughter and became daughters to me. They watched me and helped me and saw me at my worst health wise. I could not have hand picked anyone better to ride shotgun with. The past year had me running 6 to 8 liters of oxygen from tanks. Even had double tank cart because I never stopped trying to do my job. Stories they could tell you and they would tell you today (if they were honest) that things had taken a turn in the past year. Just watching me arrive or leave school was a show. Ten minutes to load or unload my van and get into the building. Two tanks, a portable oxygen concentrator, a cart with laptops and other tech hoarding stuff and maybe a lunch. Maybe. Time for a miracle. Time for Huckleberry 3! Hah! Stay with me. Has to be better than Godfather 3. Right?