New Lungs for Jesse

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

June Week 4 Update – Another Holiday Passed

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Here we are at Day 104/105. Wow. Just wow! We really thought I’d be pretty much healed up by now.

[long pause]

Straight up, I’m tired of waiting and ready to get on with life.

A quick rundown of every day

There has never been a wait of any of my many waiting periods in my 38 years like this wait. No papers to file, no ears to bend, nor efforts to make. I can’t call, email, or pester this into the squeaky wheel getting the oil. I don’t like it.

When it’s quiet or I’m at my desk and finish a task, that’s when the eyes water and throat stiffens.

Then the flash of anger. Sometimes it’s a what I’m working on. Sometimes it’s the closest person to me who has irked me in the slightest. Sometimes it’s at God for not getting this show on the road. Nothing could be easier, so why must I — and my entire family — wait this long?

[short pause]

As soon as the fire reaches white hot, a tiny reading voice in my head reads to me, “Where were you when I created the universe by speaking?” That’s usually enough for me, but sometimes I’m a real hard-head and need to wait for the voice to continue, “You tiny, tiny person. Who do you think you are? I’ve got a gift for you and you’re acting entitled. All you have to do is wait.”

Who am I to even consider being impatient? I’m reminded once again that this isn’t about me.

Statistics

Of course, there are always statistics to look at, which clearly have no actual bearing on anything for each individual situation. Every day, the odds of it being the day is the same. However, as more days in a row are strung together without a result, the odds increase. We verified this with my mathematician brother-in-law on Saturday. It’s been a very long time since the Yellowstone super-volcano erupted, so as time passes and the tremors increase, the odds rise each year even though the odds of it being any given year are very, very low.

It’s another holiday coming up. We’ve passed a few lame US Mail holidays plus Memorial Day, Mother’s Day, and Father’s Day with one call but no information that it was from a holiday-related reason. Now we have one of the biggest donor days of the year coming up in a few days with it being a very long holiday weekend until the actual day with the possibility that any accidents would cause delayed termination of life support well into the week.

With this set of circumstances, my wife and I are on pins and needles in anticipation of the call coming at the worst timing this time to the point of keeping my devices obsessively charged up and not hungry lest I go NPO for the next 2-3 days at any point.

Now that I’ve been reminded of my place once again, I patiently do my stuff while I patiently wait.

 

Hemoptysis: My Bloodiest Day

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Raise your hand if you know what hemoptysis is. It’s when your lungs spring a vascular leak and you start coughing up blood, which is different than vomiting blood – those are totally different issues from different organs. I have talked about it in regards to CF on my old blog here, here, and here if you want to go off-site to read about it in general first and then a couple of episodes several years ago.

I’ve had two more advanced bleeders in recent years. One was on a super hot day last summer preparing for an adoption garage sale for our now toddler. I was in the garage looking up prices to set for things and I got a bleeder while my mother-in-law was inside on a call. It was bad, but we kept it confined to paper towels and mopped up anything that hit the floor before she finished and was completely unaware. We finally told them either in November or February while discussing other health issues… because it’s something CFers hide.

Then, for the first time ever, our sons and anyone passing by our car leaving church one Sunday a couple of months ago got to see it. It was my worst to that date. I was coughing for at least 10 minutes and we were deciding if I continue to cough in the car while she drove across the street to the dinky hospital for help or a helicopter ride to TGH, but the bubbling finally stopped. We mopped up the step board and a bit of the pavement, and left with a massive headache. I was down and out for the rest of the day.

A whole new ballgame

Then there was Monday, June 12th, 2017.

The day before, a friend in Sarasota (about a 90-minute drive south of my exit in Tampa) said one of our podcast friends was visiting and wanted to know if we could get together. I almost immediately turned it down because I turned down another person who was in the area, but that one was going to be much more of a first impression time. We’ve all either been friends for years or been on multiple video broadcasts, so impressions have already been made. So I decided it’d be nice to get out and eat at a restaurant, which is rare treat.

We went to our usual hole, Tijuana Flats just 2 miles from my house. I had soooo much enchilada, nacho, taco goodness! Oh, and a full root beer and a refill to go. We got up just a couple of minutes after 7:00 because they had a long drive home and walked out. I had snagged the first parking spot, which I backed into per my normal self. They continued on to their car and I was still on the restaurant side putting my double tanks in the passenger seat. I had one cough and suspected it “wasn’t good” and proceeded to the driver’s side and got in and closed the door.

As I got my nasal cannula back in, I coughed into my mouth what I immediately knew was blood. It’s often hard to tell by consistency, but the iron, metallic taste is unmistakable when it’s happening. I put it in a Kleenex and folded it up.

Immediately, another cough. This time it filled a Kleenex more than the first. A third cough. More blood than the first two. “This is not good,” I thought. “At least I have a full box of Kleenex after the church episode.”

The coughs just kept coming and I remembered that there was a family sitting at one of the outside tables and they’d be able to see me, so I started the car and drove left towards the lot exit but pulled into one of the spots on the other side where I had more room/time/privacy to let this settle down.

Big mistake

I started to openly cough into a handful at this point. I set the handful down and grabbed another out of the box. I opened the door a flung my root beer out and started spitting into the 20oz cup. It was quickly filling up. Easily 2oz per cough that cleared out.

As I was coughing, I became aware that my breaths were getting shallower and shallower. I started feeling faint. Then I felt the blood inside my right lung just percolating with the coughs. No, not wheeze or gargle. Percolate. Right through my lungs from the arteries. Air was getting stuck and popping, but my body wasn’t receiving the oxygen it needed.

I was in panic, the most panic I’ve ever had in all my years of CF and life scares. “I am going to die alone in my car in a Tiajuana Flats parking lot.”

I had already started to text my wife “Leaving. Massive bleeder.” This would not be a wholly unusual text. She’d find out how it was going minute by minute but mainly be aware. As it got worse, I tried to send it. There was so much blood on the phone that my finger inputs weren’t working. I wiped it and typed “Calling 911” and hit Send.

Rather than die in the car and be found later in some gruesome bloodbath and make people try to figure out who I was and use my Medical ID info on my phone to contact people, I stumbled out of the car with my cup and phone and just bent over coughing onto the pavement about 5′ from the car. For a photo gallery of the scene, click this button. Do not click it unless you want to see the photos.

Good Samaritans

After what seemed like forever but was probably only two minutes, help arrived. There was a massive pool of blood, the likes of which I’d never produced. I’d also started coughing up stringy chunks, which I surmised was lung tissue breaking off because it sure didn’t look like airway mucus. Whichever it was, there was a lot of “material” in the pool, too, which as a completely new event for me.

I was no longer afraid of drowning, but rather of opening up a hole so big they couldn’t stop my bleeding.

While I doubt they were from Samaria, a very concerned 40-something mom and her teenage son who was wearing a baseball uniform and the sports flip-flops and socks approached and she asked if everything was okay. I shook my head “no.”

“How can we help? Can we call for an ambulance for you?”

“This hospital… is too small… to treat it. Trying to figure out… best… plan,” I coughed.

“Okay. We’ll stay here and think with you. Do you live close?” she asked like a concerned mom with good professional presence.

“Yes, just through… Northwood. Wife is home… with boys.” Northwood is a quick shortcut between this road and our development’s road.

As we talked, an older man of about 50 came up with an entire roll of paper towels and two bottles of water. He offered me a handful to wipe the tissue dangling from my beard (I’d already taken photos of it like that to document how I died). Then he poured water onto a handful and handed me that to wash my hands. Such kindness.

About this time, I also stopped gurgling. It only took a few more coughs to cease the event. I stood up and greeted and thanked my helpers. My shirt, sunglasses, jeans, and shoes were splattered and smeared in bright “bloody murder red.” It would have been very difficult to explain if I had been pulled over.

My wife still hadn’t read my text (this is a recurring pet peeve since I don’t let my phone leave my side or pocket, but I accept this as how she is) so I assumed she was upstairs putting the boys to bed and maybe would decide to shower. Okayyyyy. Now what?

“If I dial 911, I’ll need the ambulance to take me all the way to TGH… but now it’s stopped for the moment and an ambulance is overkill unless I start again, which would be very unusual. I’ll dive home and we’ll take the boys with us until someone can meet her to pick them up,” I concluded.

“I’ll follow you home to make sure you’re okay and you make it, if it’s okay with you,” she offered.

“I’d surely appreciate it. It’s just through Northwood and into the townhomes on the other side. Thank you so much.”

I thanked the man and he handed me the rest of the roll and a fresh bottle of water and I hopped in the car and started rolling away until I saw I had a car in tow and then calmly pressed the pedal down a good ways to get on my way and it was clear that she was going to keep me close.

I called the clinic line and was immediately called back by the on-call coordinator because it was after hours. I conveyed the details and we both waffled for a little while. We landed on coming in to the TGH ER so the team had access to me and the full power of the trauma center, surgery, and ICUs. On the call he asked what my sats were, but I left it at home because my jeans pockets don’t have enough room for all of my extra crap now. He called back a couple of minutes later and told me he’d spoken with the doctor and to come to the TGH ER.

Home

I was pleased that we caught the light green and both turns at the main road were clear to go. The gate was even up and open at our development! I got out of the car in our garage and walked to the back of the car and thanked her again. She even got out and confirmed a few feet from me that I was okay.

I hobbled inside and said, “Help. Help!” loud enough to be heard but not loud enough to rouse the boys. I immediately heard a rushing down the stairs and a hurried, panicked “What’s wrong?! What is it?!”

It only took one look to tell. I’d clearly frazzled her beyond comprehension, which is quite an accomplishment. I could see her thought process as she pressed both hands to her temples: okay, the boys are in bed, we can call the ambulance or go to the ER, let’s get Mom over here, I need to pack stuff.

She headed upstairs to get ready and get help to stay at the house. I heard her end of the conversation and I felt bad for having to receive a call like that, but that’s where we are now, aren’t we? This part sucks, but we are in this together.

“Please get me my pulse-ox,” I asked as she continued to insist that I sit on the step stool in the kitchen and try to calm my breathing, which was off the charts. I got an 81% and a pulse over 150. Knowing it was against protocol, I called the number he called from because I could tell from the prefix that it was a mobile number and this was an emergency.

“It’s only 81% – do we still drive ourselves in or get an ambulance?” I asked him.

“If you can’t get it up over 90%, you need an ambulance,” he replied.

I was already on the 5L of O2 from the home concentrator and it doesn’t go any higher, so she got the double tanks out of the car that started this whole mess, replaced the one I’d used, and we cranked it to 10L. I climbed to 91% and she went off to prepare more.

Just as she came down, her mom walked in and got a few details, saw me covered in blood, and we left. People! I didn’t even pack my laptop or my phone charging cable. This is how you know this was serious if none of the blood above (If you clicked) was evidence enough.

The hospital

Just as life would have it, it was raining. Then it was pouring. We were still making pretty good time going into town after-hours and my sats were staying over 91%, sometimes even hitting 96%. As soon as we exited, I said, “Good job, Honey,” because I saw how stressed she was dealing with this from different angles and driving. For the first time ever, we used the valet parking at the ER ramp. After we confirmed we weren’t crazy just leaving our vehicle there running, we went inside.

There was a line of people at the same desk that was empty on Friday. A line! Do you see this man covered in blood, people?!! I had the presence of mind to carry in my half-full Tijuana Flats cup as proof of some of the volume… and to serve as a bloody visual cue that something is wrong with this picture.

Not much more than 30 seconds after we got in line, a big, beefy nurse came out of a triage room and he said, “I’ll get you a wheelchair.” He cut through the line and had me sit in it and he hoisted the double tanks onto one of the feet. Then he instructed everyone in line to back up (including a woman in a wheelchair who was starting to roll up to registration next) and for her to rush register me. She asked 2 or 3 questions and put a band on me.

Mr. Beefy was named Grubbs, and Grubbs took charge from that point on. He commanded Mr. Door Opener to let me into Triage 1. He took my vitals while the nurse asked my wife questions. Grubbs read them off to her and we backed out as she got on the phone to find out we were going to Trauma 2. Mr Door Opener obeyed another command and we were off to the races through the ER almost as quickly as we did for my tachycardia.

Trauma 2

As soon as we got into the bay, Grubbs started working on the air situation and a doctor was there within 10 seconds. Then another and navy blue RNs by the handful. As the doctor was taking assessment of me and the situation, within 90 seconds, a tall, young woman in sea green scrubs walked up and introduced herself as the attending physician and asked a couple more questions. They listened very carefully to the Tijuana Flats story, past episodes, and more of my history.

All the while, Grubbs started two IVs, hung a bag of fluids, and got my wife situated within sight and hearing but out of trample danger. Their immediate concern was my heart and respiration rate. I was pushing 35-40 respirations per minute and my heart was still over 140, sometimes hitting 150. That’s about where the cardiologist set my limiter last year.

We tried a Vagal maneuver to get my heart rate down. It didn’t do much, so I asked for some Ativan. 0.5mg helped me but didn’t help my heart. We finished the dose and it helped a little but sure made me sleepy. It’s hard to sleep in that situation, though, so we kept going.

Another doctor came, a pulmonologist from the critical care team came and we discussed a bronchoscopy and intubation and the risks with my heart going so fast, so I declined while we had the present situation and no bleeder. Sure, if I start bleeding again, take care of the heart any way possible and fix my leak.

At this point, I’m not sure what they really decided other than to get me up to CTICU for monitoring overnight and see how my heart fared in a quiet room. I easily dozed off and I remember my wife in the bed next to me like we sat on Friday waiting for lungs, but I’m sure that couldn’t have happened on that narrow bed, so we’ll just say how much I love Ativan. At some point, I took that photo of my wife looking annoyed that I was taking a photo of her watching me relax on good drugs… oh, and she asked if I thought she could get a blanket out of some microwave-looking thing next to me. Of course, I agreed it was okay. Anything was game, as soon as I took a nap.

They wheeled my bed to CTICU, some of which I remember and some of it I don’t… and that’s where we’ll leave this entry.

June Week 1 Update – Updated Feeding Tube

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This week was another clinic appointment… one that we both thought we’d be canceling because I’d be in post-transplant clinic instead. Other than the disappointment of the appointment existing, it was a good visit.

As far as days go, the day before was a “bad lung day” and clinic day was a “good lung day.” I was a bit grumpy about how good I felt after doing my treatments because the evening before and when I woke up included some wheezing and “snap, crackle, pop,” which I finally had explained to me during evaluation as mucus making noise as my airways expand and collapse. It’s a tiny, wet schmuuuuuk sound as a soggy tube gets forced apart under pressure. Doing my treatments and a lot of coughing generally rids me of these symptoms, at least for a couple of hours.

Since getting to clinic is almost a quarter mile walk from the parking garage and then 3 big efforts doing my pulmonary function test (PFT), any audible symptoms are gone by the time anyone bothers to listen to my chest. In the end, they don’t really care about that since it’s just part of the disease at this point and my PFTs were consistent at 23%. My raw volume has barely changed since my hospital admission at the end of January.

They called me “stable!” Ha! If only they knew. I lost my marbles about 35 days ago.

At this point, I’m exactly where they’d want me for transplant. The previous pulmonologist who saw me for the better part of 20 years said I’m the ideal candidate for transplant when the time came around. I can walk for miles with supplemental O2. With my tanks in tow, I’ve changed very little about our lifestyle and have started going out more now that we doubled the number of air tanks we have and I got a double-tank cart and don’t have the anxiety of running out of air. I avoid excess trips or long days in the sun that the rest of the family does, but that’s about it.

That feeding tube

What they did focus on was my weight and my feeding tube. I mentioned again that it’s still seeping goop and I have to wear a gauze pad and change it at least every 24 hours, if not 12 hours and I showed them that one side is still red and irritated. We collectively agreed that the peg between the inside and outside of the part that goes through me is too long, so it’s not creating a seal against my stomach. This is allowing acid to come through the hole while I cough or roll over in my sleep.

They said we’d get a consult in interventional radiology and swap it out since it’d almost been 3 months since it was installed. You’re supposed to change it every 90 days — since I have the J-tube, too, they have to do it as a sedated procedure. If it was just a G-tube, you can pop it out and put a new one in yourself.

So that was our yesterday.

Upon looking at the skin around the opening, the IR nurse practitioner agreed that the stem was too long. I was wheeled into IR Lab 3 about 30 minutes before my scheduled slot and met everyone in the room as they came in and got me situated on the radiology table. I was allowed to keep my contacts in because they didn’t plan on general anesthesia and decided it’d be okay to leave them in if it was an emergency. Either way, it’s supposed to be under 40 minutes total time in the room.

We discussed the situation, they examined it, also, and they pulled the tubes they wanted to consider. One nurse strapped me down so I didn’t raise my arms and knock everything they put on me onto the floor (they treat you like a table), another hooked up the IV bag to my port and acted as “sedater in chief.” Then the nurse on my right side prepped me with a lidocaine gel in some manner that hurt, but that wasn’t a needle… so I have no idea what he used.

Then in strode the doctor. He gowned up, gloved up, masked up, and walked over to me. He introduced himself and the “sedater in chief” pushed in some versed into my IV and I was ready to party! After a few minutes, he was done and they wheeled me back to the prep area. I got a sandwich and juice and waited about 30 minutes, and they sent me home.

I walked in and pretty much just grabbed a pillow and passed out on the floor for an hour or so. When I woke up, it was because the lidocaine wore of all at once and it was mad at me, so I took a Percoset and felt okay for the rest of the day until it hurt again at bedtime. I have no idea how I was so awake at the hospital, but I was pretty much “off” until dinnertime.

Today feels pretty normal other than my energy level being lower than usual.

That’s about it.

May Week 4 Update – Hurry Up and Wait

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As 70 days on the active list rolls over to 71 days, time is beginning to play tricks on me. Could it really only been 71 days? This year? Yet it also seems like a blink because this year is going by so fast and all the while seems like it’s going on without me present in it.

We attended my wife’s second and my third transplant support group meeting this week. Now there are two people who were listed after me who are attending meetings as 4-week and 8-week post-transplant recovery. I mentioned the latter last month when he was 4 weeks post-op. Compared to this week, that version of him was tired. Now… I got the impression that he had just done his 5-mile run, showered, and dressed to go to the office. Reality wasn’t far from that – he’d be to respiratory physical therapy, showered, and came to the meeting in a typical successful 60-year old Floridian CEO’s attire.

I’ve got nothing but major best wishes and warm fuzzies from seeing people living large after transplant – except when I catch myself mentally sulking, “when is it going to be my turn?” Yeah, I’ve had my moments this week. Quite a few of them. Then I read this on Thursday and it re-reset me:

So I’m content until I have a Job moment and remember this and the reply to Job… and I’m content again. It’s a cycle, so who am I to question the wait? I don’t know how all of the details of waiting past our plans will work out, but we did our part and planned. Ball’s out of our court now – I’m waiting for the return so I can make a play on it again.

Had we known

When I got home after my evaluation on the last day of January, had we known that the wait would really be this long, we would have forced our way into the last 3 medical appointments and listed immediately. We thought we needed time to prepare the house and the business. Now the business work has dried up because my status has been known for so long and I’m trying to drum up work. We really thought we’d be to the “back at work part-time” stage already.

I’m back at my desk most every day and working on forward-looking projects for the shop and taking breaks when I want. It is frustrating to work so many hours without an active project and the “thank you letters” that come with a multitude of Benjamin Franklins. It’s time to create a project within my network that someone can’t refuse, even if there is a pause in the work if The Call comes.

Like I mentioned last week, if it wasn’t for the annoying 50′ hose attached to my face or the tanks I drag around to go out, life is pretty normal.

Things to do

We’ve lined up what needs to be done while I’m in the hospital and now school is out, so we don’t have that transportation and sleep situation in the picture. Everything is pretty much some level of cleaning up after my germs that I’ve been spewing around here for almost a decade. Everything I touch and use has to be sanitized. Everything else needs to be dusted and cleaned for air quality improvements.

We got quotes on our A/C situation and, while we agree we need a new system pretty quickly, the reality of the situation is likely to have a professional cleaning of the coils and any mold around the coils and blower. Then install 2 UV lights, one for the coils and one after the blower to sanitize the duct from the blower to the T-duct out to the vents. Throw in a thorough duct cleaning and we should have pretty clean air.

That we can afford and then save up to replace it all to the tune of $6k for a 3-ton unit with a 10-year parts and labor warranty. Of course, this plan is pending word back from the transplant team on what they recommend as a minimum knowing there is presently some mold.

The last remaining cleaning in the house is to steam clean the carpets… and we’re considering installing a reverse osmosis water filter I’ve had for the longest time.

Our primary car will need to be detailed and have the cabin air filters replaced before I get in it to come home and I’m officially done with my 2000 Altima when I come home. It’s surely a petrie dish of the last 12 years of my CF grossness.

The donor

Things are picking up speed on the list. There were THREE calls in ONE DAY this week for people on the global Facebook group. It’s looking like a pretty busy season. My mind has already wandered to the donor and living the rest of my life because someone else’s ended. It’s enough to get verklempt already, so I can only imagine the emotions later. Not those of guilt but of living with greater purpose and intentionality.

That’s all I’ve got this week. Over and out.

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.