New Lungs for Jesse

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

March Week 4 Mid-Week Update – Feeding Tube Healing

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It’s been a rather miserable week that just started to get better today, so for that, YAY! Small victories. Yesterday, we really “embraced the suck.”

The house was a mess because it was Wednesday night church and Boy needed to get out and do something and everyone came home exhausted. There was so much to have done before school and the boys both got up at 5:30am. I was useless. Kristin was just taking a beating from taking care of me, me not helping (lousy loser I am), and taking care of both boys. So I went behind her back and called in the cavalry and Nana was over here whipping the kitchen into shape before we even left for my dermatology appointment. When we got back, the house was clean and I napped and they got stuff done, she did school pick-up, fed the boys dinner, and I made us a nice steak dinner while the boys were upstairs.

I was so darn proud of myself taking care of Kristin just a tiny bit, I confessed before bed that I went behind her back. “Thank you.”

Thank you, Nana. It made all the difference.

“The Tube”

So many of you know from Facebook that the pain from my procedure has been unreasonable. Nurse friends and CFers who have feeding tubes were concerned, so we went to interventional radiology (IR) clinic this morning for them to put eyes on the issue and consult us what they thought the pain issue was… but then last night was horrible.

As part of having an invasive procedure done, I was put on Cipro. We knew before taking my first dose that it does not sit well with my stomach, so I started the anti-nausea meds with the first dose. Amazingly, with my round of IVs before getting listed, I got through all of them with my digestive tract intact. ONE day of Cipro (and the next 2 weeks) ruined me for over a month. I don’t like it, Sam I am.

So that’s where we were the last two nights with Cipro… and we’d had a steak dinner and I was feeling full. All. Night. Long. I started to feel sick to my stomach. I lost so much water overnight from Cipro, I decided to start chugging Arizona fruit punch, then apple juice, then sweet tea. By the time everyone was awake, I was sitting very still so I didn’t lose it. Nothing was emptying out of my stomach and I was filled to the brim with dinner and drink. It wasn’t a fun ride to downtown but I made the most of it with as much hilarity as I could muster.

We walked in the clinic waiting room and I told them my last name. I got a warm greeting by memory and she said she’d go get them to bring me back. We only sat for about 60 seconds in a room of waiting people. We had no idea what they were going to say at IR – “you’re a wimp, this is a painless procedure,” “you’re infected,” “what is CF?” A surgeon in scrubs walked in within about 10 minutes…

Instead, the surgeon agreed the suture was buried in my ab muscle and digging the t-bar into it and causing a lot of pain. “So we’ll cut it today.” There was bruising. There was some tenderness but it wasn’t infected and was healing, though slowly. Then he let us ask him 20-30 minutes of questions about what was going on with the healing, the issues this week, the issues overnight, and future care.

In the end, he suspected that the procedure needle and coring (to get it larger) pierced a nerve in the skin. It can also go through a vessel and take weeks to heal. It’s a crap shoot, plain and simple. I think I also lost the bet on one of the sutures, too. We also learned that the J-tube leading from the button to the jejunum is 45cm long and is the diameter of my oxygen hose: 18fr or 6mm. I thought it was tiny like the pH probe I had for a couple of days to monitor for GERD. We also learned that they replace the whole get-up every 2-3 months, but it just takes a few minutes. Hopefully I only need it replaced 2-4 times before I’m up in weight and have healed from transplant and won’t need it any longer.

After we explained we had the heavy steak dinner because I won’t be able to have undercooked meat (I eat my steak mooing), he said he’d do the same thing. “‘Merica!” I said. He nodded, “‘Merica,” and smiled. We liked him a lot.

March Week 4 Update – Feeding Tube Installed

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Thanks for tuning in for another weekly update. Since our last, I got some new hardware installed in the form of a G-J Tube. If you want to skip to the next topic heading, the long and short of it is that my previous worst medical procedure ever was my ablation catheterization for my tachycardia. I’ve since experienced 10 times more pain than that procedure with this one… and it’s still not gone.

Per normal surgical procedures, I had nothing by mouth after midnight and was scheduled for 9am. We got there at 7am and we were soon greeted by a nurse practitioner from interventional radiology who rocked our socks. Informative, great bedside manner, and quick. With her additional info, we both felt better and worse about going forward, but we knew it was best for my future outlook. She was also quick to tell us I was going to be admitted and had a less than 1% chance of going home that night. She was so right.

When they came to bring me back for the procedure, I had one last chance to inform them that this needed to be performed under general anesthesia unless they wanted a horrible situation back there and was very vivid in my description about what would happen. To my relief, they were already prepping general as we came into the operating room.

When I came around, I wouldn’t have known any different if you’d told me that someone went on a rampage and stabbed me with a dagger and was currently twisting it in my largest, strongest ab muscle (as a chronic cougher, I have an epic ab arsenal). Something was out of control and my ab would involuntarily contract 150%, like it’s never done in its life, and not let go. I was yelling that I was a 40 on the pain scale of 10. Bloody murder. I later found out that discussion happened an entire room later after they’d already sedated me again before my wife was allowed in to see me.

This cycle went on for the next 24 hours. Involuntary contraction, 30 on the scale. 6 hours later, 20… until I was telling them it was a 12. We consulted with pain management and they came up with a combination that worked but left me high as a kite every 3 hours. It still didn’t take the pain away but it kept the contractions at bay 20x better than previously and sedated enough that I slept half the time between doses. As long as I didn’t move, I was okay. I needed help doing anything, lest it contract again.

Finally, on Sunday mid-morning, I was able to stand and walk without anything horrific happening. So we were discharged after lunch and we had the whole evening and most of the day until the boys came home.

Yesterday (Monday), I coughed so hard, I broke a suture to some hardware that takes the pressure off the feeding tube site so it can heal. Pain spike on that side. Today the pain spike is on the other side where all the pressure is now… so the hope is there that tomorrow will be okay. I’m on less than half the pain killers I thought I’d be on when we left.

I’ve been assured by several people that this was an abnormal situation. It looks like it took them two attempts to place the tube and chose to go through an immense muscle, making it an unusual case. I don’t think we made the wrong decision but it’s been a lot harder than I ever imagined – and I always imagine the worst to prepare myself.

2,000 calories overnight

Last night was my first night at home with night feeding. We poured 32oz of high-calorie drink into a hang bag and set the pump for 120mL/hr and it went straight into my small intestines. It’s definitely weird, but not bad. I woke up at least every hour for one reason or another, but not the feeding. Waking up with the energy of an entire day’s eating overnight is pretty cool.

Day to day, minute by minute

We are taking each day step by step and trying to enjoy our time with the boys and keeping the house running. They didn’t do too well not seeing us and bouncing from our house to another, but the next day they were fine. Boy (7), seemed to avoid me until after dinner. He has lots of questions, still. So we talked about it more at dinner. Parker was sad but is all fun and giggles again. I just can’t come close to picking him up yet.

We are both finding it difficult to concentrate on the household stuff and work with every phone call being an adrenaline rush. My wife got her one goal done today and I got a solid 2-3 hours of coding done before my body decided it was done doing that level of concentration. It’s time for another dose of pain killer and prop myself up on the couch to interact with the boys before dinner.

Breakthrough: needed to restart muscle-relaxants to return to hospital levels of pain management. Hope that’s my last dose.

That’s our update for now.

March Week 3 Update – OFFICIALLY Listed

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I had my one-month follow up from this post where the doctor gave me a month to gain significant weight or be listed. If you tuned in last week, you know we already bumped things up and were moving forward with being listed and getting a feeding tube tomorrow (Friday) morning.

I maintained stable pulmonary function from the last two visits, so that is good that I’m not declining from these already poor numbers. This is in alignment with wanting to be just sick enough to be listed but healthy enough to weather the storm that is a double lung transplant.

I had a couple more items left to complete my lung allocation score (LAS) for listing, signed consent, got two additional vaccines, and endured two attempts at an arterial blood gas (ABG) draw to determine my CO2 levels. We left for another appointment and when we got in the car again, we had an email that rocked:

You are officially active on the transplant list and your LAS is 38.859!!

With that score and the low number of people listed for lungs with my blood type at TGH, I stand a good chance of a short wait for local organs if there is a good match with a donor. Based on info we have from others we’ve met on Facebook who were recently transplanted at TGH, we expect the wait to be anywhere from days to 2-3 months and be immediately whisked into chaos of the fourth magnitude.

That’s the good news, but we’re struggling

This is a one-time ask. I won’t ask in another post, but the form will be up after posts and the sidebar with a link to here. We aren’t going to focus on money. We’ll let our friends, family, and God do what they do and think is best.

We are hesitant to open up this donation campaign after we received hundreds of peoples’ generous gifts in 2016 for the second adoption, but were encouraged to do so by family who is also willing to assist if the need arises when our funds have been depleted.

Here’s the ask: we are looking to ensure I don’t have any pressure to push myself beyond medical recommendations (because Nana knows I will) with a financial goal of $20,000. Our own transplant fund goal was $36,000 but we think looking at where we are now and how fast transplants happen, with my shop, contracts, and hosting revenue continuing, we can reach that same peace of mind with nearly half that. Thanks for even reading this far.

Medical Leave Fund for Jesse’s
Double-Lung Transplant

Here’s the why

Most everyone in the WordPress community knows I kick butt and take names when it comes to putting in the time it takes to provide for our family. I’ve been running our business for over 8 years now and we’re living the dream… but things have always been tight since we started a family in 2012. We’ve had ups and downs but it’s always just what we needed, provided just in time before disaster. Drain savings, pay it all back, build up a little margin, something breaks, drain savings, pay it back, you get the idea.

We currently have a small emergency fund and we fully expected that my work-from-home business would allow me to work right up until transplant. That no longer seems to be a reasonable expectation. We felt that we were entirely prepared for a quick medical leave after surgery but not any decreased work beforehand, which looks like it could be weeks or months waiting on the transplant list.

I am currently pushing it to see some semblance of normalcy but just hitting about 33% of my usual productivity. For my health, I need to back that down to about 25%. Work 2hrs/day, rest with quality time, and eat for strength, and nap a lot as my oxygen saturation remains lower than normal. There is work waiting to be done – it’s a matter of having the energy and concentration to complete the contracted work.

Kristin was willing to get a job to make up the difference but we and other family members shot that down because she is my support system and taking care of the boys. If she leaves home to work, I am left caring for the boys, doing school car drop-offs, and numerous trips upstairs with our toddler.

I am still focusing on my WordPress theme and plugin shop, GenesisThe.me, and have two products for sale with two ready for launch by the end of March to supplement the client work and hosting recurring revenue, but there will be a shortfall with continued work hours at this level.

We don’t know when or if I’ll completely have to stop working, if that will involve being in the hospital on a ventilator, or if it will be a smooth recovery where I’m out in 3 weeks or 6-8 weeks. I’ll have physical therapy for at least a month, twice a week, which is draining according to friends… and I can’t be left alone for 3 months. That’s what we’re facing between now and being 100% health.

Thanks for listening and please feel free to share with other people who are interested in our story, if so inclined. We’re so thankful for such an amazing team surrounding us and lifting us up daily.

March Week 2 Update – Getting Listed

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It’s been a bit crazy since last week’s update. Sometimes it seems like everything is working against you, but those who know me know I don’t really think that, though it may be the case for brief periods. This may have been one of those brief periods. Stay along for the end…

The Weekend

We had a nice evening off last Saturday with the boys sent packing for Nana and Papa’s for the afternoon and night. I took a 3-4 hour nap and we were getting ready to go to Busch Gardens to see Daughtry play live. We’d been looking forward to it for weeks.

As the day proceeded, I started feeling really tight in the chest. At 2 hours, we were eating dinner and I was starting to gasp. As much as I hated to say it, I wasn’t going to make it for our date. So with the boys gone, we watched TWO shows instead of one before going to bed at 9pm! Imagine that! Two whole shows and neither of us fell asleep!

We decided to not set our alarms for church. Of course, I got up at something like 4:11 instead of 4:03. Kristin was up half the night with her sleep issues that defy logic or explanation. We decided to just go to class at 11:00. I got a pretty prime handicap spot that made me happy.

We’d planned on the annual foster picnic with the boys as very possibly our last pre-transplant outing as a family. It was the usual good BBQ chicken and hot dogs for the boys and they played for hours. We got in the car and my wife had already decided to drive us home…

I put the O2 on 3L or 4L (double) and tried to relax. I couldn’t. By the time we hit the interstate, about halfway home, I was gasping, restless, and frankly darn near panic. It didn’t get any better all the way home. I apologized and just came in and laid down on the floor inside the door while Boy ran up to turn on my O2 concentrator. After a while, I insisted on 5mg of Prednisone. Finally, after about half an hour, things opened up.

We both realized that was it for half-day family outings.

That night, while sleeping in bed with my CPAP, I woke up in a complete panic, unable to breathe. I realized my full-face mask was preventing me from sucking in enough air after a coughing fit at 11pm. I made a decision to come downstairs and sleep on tank air. I woke up when the tank ran out at 4am and I went upstairs to turn on the concentrator (it makes a very loud beep). No more messing around with no O2 at any point in the day. I’m officially on O2 24/7.

The Week

On Monday, my wife told my long-time coordinator how the day before went and we asked to see the doctor at my next clinic or move it up. She said he wants to see me but we’d keep my appointment on the 16th. I got squeezed in, so “plan on staying a while.”

Monday was SUPER productive. I got real, concrete work done and was feeling very much my old work self. My brain was working, I was making for a good time on social media, and Nana brought over dinner, ate with us, and put the boys to bed on Monday.

Monday at dinner, the same symptoms from the day before started, but all I’d done was sit at my desk all day! Another Prednisone, then we ate (I ate a lot), and I laid down on the couch and very much passed out. I missed everything until Nana was getting ready to go. I slept on the couch on the concentrator air and got a very good night’s sleep. I even slept through our toddler waking up 4x, crying down here, my wife watching 2-3 hours of TV, Boy coming down to say he was thirsty, and all of them eating breakfast. Have I mentioned I’m a good sleeper?

Tuesday was the same thing, minus my mother-in-law helping after work, but she did take care of the boys in the morning so I could work during my wife’s doctor appointment. Productive, gasping before/after dinner, Prednisone, slept on the couch.

Wednesday was a sick day for Boy with a stomach bug or food poisoning, so scratch that for normalcy except I migrated a site, got paid, and then slept on the floor from 10p-5a.

This Brings us to Today

Around 9:30 I got a call from the pre-transplant coordinator. She said my coordinator and the doctor were talking about my clinic visit and he decided to present my case to the medical review board this morning and they approved me for listing now. I’m still functioning and “healthy” but my lungs are at that point. It’s time. She’s submitting my listing authorization to insurance and I’ll see the doctor at clinic.

I still needed to get a clean bill from the dermatologist because my scrape biopsy came back “inconclusive” and I still had a big lesion healing from the biopsy. So I scheduled a punch biopsy (basically to cookie-cut it out and stitch me up) an hour later. Yeah, I rushed into town. I got 6 or 7 stitches and it looks like a shark came after me.

Next Week – Clinic and Feeding Tube

So the plan at clinic is to lay eyes on me, do a PFT to see where my FEV1 is at related to the 22%-24% I was at a month ago, and officially list me. I’m ready. I’ll probably be half-giddy by then after all of these weeks of leading up to this. We had a little denial, a big release to trust that’s where I am, then a push to delay it by gaining weight, and now the stark reality of what the situation is. I’m on a knife’s edge, plain and simple.

The next morning, I am finally following through with the doctor’s recommendation from his first meeting with me in November: get a feeding tube. I’ll be getting a G-J Tube. That’s a gastro-jejunal tube. It’s a tube that goes from the stomach to the first part of the small intestine with a small button access on the skin to be low-profile. This will allow me to get high-calorie drinks day or night without filling up my stomach and interfering with my eating that I do get done and enjoy. It will take all of the weight gain pressure off my brute force attempts and really pack on the pounds with Caesar dressing in addition to 6 or 8 360-calorie Boost Plus drinks going straight in every day. Do that math. 🙂

A fat me will be a successful transplant recovery mre. With listing now, I’m 100% going for the most successful situation we can muster, which leads into our last update.

Going Forward – Rest and Health

I wrote in last week’s update how difficult it was to get enough hours working. While it started to look like that was correcting itself this week, now with this news, family has told us it’s most important for Kristin to be in a good mental state of mind and me in the best rest and health state.

We’ll focus on learning the feeding tube situation to maximize my calories to get my weight up and thereby strengthen my lungs’ lives a little longer and get the rest of my body some reserves to pull from as my lungs decline more. In my limited work hours I am going to be releasing another theme (this theme) and expand a plugin I released last week.

My wife is focusing on doing things for the boys, staying healthy herself, and fixing high calorie meals and snacks for me. Some days, I’m just going to suck and fall asleep after dinner and she has to pick up the slack I create because I at least oversee picking up toys and the nighttime bottle time, which I do still enjoy that bonding time.

We could get the call days after listing or several months after. I’d like it to either be a couple of weeks or during early summer so my issues don’t affect school and create all the logistic items with getting to and from school when I’ll be admitted for so many weeks. It’ll be my longest stay in the hospital since before I was in kindergarten.

Thanks for reading this far.

March Week 1 Update – Tired, Very Tired

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If you already read the last actual medical update “Change of Plans, Again,” you know that my PFTs are still very low after finishing home IVs and that we are in the process of getting listed. I have already seen the dermatologist, dentist, and optometrist for their required parts. Having two fillings done today and am going to schedule a punch biopsy of the only spot the dermatologist found just to be sure and done with any possible skin cancer concerns.

Our script for getting Boost Plus was denied unless it’s provided as a medical benefit such as supplies for a feeding tube. I’ve been putting monumental efforts into gaining weight and am up 4-7 pounds by evening, but it’s exhausting me to do so… and we know Dr. Patel is talking more like gaining 30-35 pounds. So I’ve decided to swallow my pride and go ahead with a GJ Tube for night feedings and hopefully get 2200-3000 calories per night.

I’m a bit giddy thinking about gaining weight that easily, but I’m also very sad that my body has gotten to this point. I made this image back around 2010 at my highest weight and before kids. It’s laughable that I was stating that I was “easily tired – every day.” Ha! Insert note to future self there.

Eating has always produced results for me. Eating has more or less been enjoyable unless I was bulking. My appetite was never far away, and neither was my next chance to eat. That’s not how it works any more. When I’m stressed, I don’t want to eat. I don’t often have an appetite.

Ready

Once we finish our estate plan and see what my next set of vitals are at clinic, we’re ready to get listed.

I’m tired, exhausted, really. Never been so much in a state of perpetual napping in my life, even with all the newborns we’ve had. I’ve been getting a solid 8-9 hours of sleep per night and still sleeping anywhere from 1-3 hours during the workday.

Between my lower O2 saturation and all of the planning stress seeing all of my required doctor’s appointments and getting our personal and business affairs in order, I’m having extreme difficulty concentrating on work, let alone coding. I did successfully start coding yesterday. I wasted over an hour trying to sort out something of a junior front-end developer level and suddenly realized my error in using the wrong property… one that I’ve known for years but was glossing over.

I’ve got more than enough work coming and working on some long-term support contracts that I can do without long sessions at a time at my desk. Still need to get the revenue going because the work is there just waiting to be done… before people get upset by delays just because I’m napping and can’t think.

That about sums it up.

Change of Plans, Again

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Today was my clinic follow-up from the hospitalization. Pretty standard procedure: pulmonary function test, weight, vitals, and a basic check-in how I feel. Things didn’t start off very well.

I went back for my PFT straight from the waiting room because they didn’t have a room ready yet, which isn’t a good sign for getting out in a reasonable time. This got me craving sushi from the cafeteria since I won’t be allowed to eat raw fish after transplant.

As a CFer, and old CFer, I’ve probably done 300 PFTs. I’m as consistent as the Amazon River is long and can rely on my numbers being rock solid. If they’re off, it’s because it’s a bad lung day and I know it going in. Today had been a good lung day going in and even sitting there at every point since. When I blew a 24%, so soon after my 27% test in the hospital, we were shocked. We were expecting a 28% and hoping for a 30% and wanted to consider that my new baseline.

A 24% was pure demoralizing. I sunk into my seat. Every seat thereafter, I sunk into. We sat in the room and waited for someone to come in who had experience and a say in things. When my epic coordinator of over 15 years came in, I knew we’d get the real deal thrown at us. “Numbers aren’t everything,” is something we’ve heard before and we heard it again.

We reviewed the past two weeks. IVs ended on Saturday, I finish the oral Cipro that I started Friday night tomorrow morning. The symptoms I had that justified IVs (sweating, loss of appetite, increased cough, lots of gunk, and wheezing) were gone and I truly felt pretty good this morning. On 2L/min of O2, I feel pretty good. I recover from activity faster up to 98% and don’t drop below 94%.

So, the numbers suck but my quality of life is back… and vastly improved on O2, if you can consider being on home oxygen an improvement over not.

The nurse practitioner came in and said she’d look into getting me some better portable equipment so I can take the small tanks to Busch Gardens (with the passes we bought after New Year’s thinking I’d make it through the year without any health issues) to be social, make memories, and exercise. She was perplexed why my numbers during evaluation were high and was going to ask the pulmonologist.

We agreed that my declining weight was my biggest vital that is still going down at a startling rate. I asked if we could get a script for Boost Plus and she said that’s totally possible, so she coded me for CF malnutrition and got a script for a case per day (180/mo). We’ll see if insurance allows that. We know from my CF Fatboy experiment in 2010 that gaining weight improves lung function, so we’re going all out with calories!

After a brief discussion outside with the doctor, he came in and laid it down real. I’ll paraphrase and such in blockquotes.

Forget the percentage on the PFT, look at the raw numbers. You were 0.82L FEV1 before IVs. In evaluation, you were 1.02L. Now you’re 0.86L. When you have a dollar and we take 5 cents, you’re still rich. If you have a dime and we take 5 cents, you’re broke. You are playing with pennies now. 1.02L, 0.86L, it doesn’t matter, your lungs are done. We need to keep you healthy enough to stay listed, so you need to gain weight.

If we had said we had everything with the home and business in order, he would have met with the medical review board and activated me on the list now. The business isn’t ready yet. I still have some appointments to meet listing requirements. But other than that, if he ordered us to list today, we would have.

Instead, we have a 2-month plan. We’ll do the Boost Plus for a month and come back for weight, PFT, and vitals with a nurse practitioner visit. If I haven’t gained weight or increased lung function, we do one of two things: have a G-tube placed to do night feedings and see if that helps my weight, or list me then. If I don’t gain weight, after one month, we’ll list me then.

So I either have 1 or 2 months before we go active on the list.

My primary job is to gain weight. My secondary job is to make a killing with the business and prep it for someone to run at least email while I’m on leave. That person also needs to be able to access client sites and help out if it’s something that can’t wait for me to be on the laptop in a working capacity. I have to have my eyes checked, get all of my teeth filled, and see a dermatologist.