Author: anne gibson

Well here we are. Today is one year from the day that I took Nathaniel to Pottstown Memorial for abdominal pains.

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I thought I’d have a lot to say, but all the words are hanging back, looking at each other like “you go first”, but nobody’s stepping toward the door.

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He’s alive.

He’s alive and he’s healthy for a transplant patient in his first year. His weight’s up to the 145lb range. Still about 10lbs below the maximum the doctors want him to be, but they’re perfectly ok with 145 because they don’t want his weight to get high enough to stress his kidneys and liver.  There are no signs of rejection, the liver numbers overall look great, and his lungs and digestive system — the two usual troublemakers — have both stayed quiet.

We had a small scare this week when his potassium started to play games, but the doctors have a plan to keep that from happening again, and Nathaniel was able to get his potassium back to normal values within 24 hours.

Every two weeks I have to wrestle with CVS and Penn Medicine to get Nathaniel’s pain medications. It happens so consistently that I have built it into the schedule.

He’s down to roughly 20 oral medications each week. (That’s 20 different prescriptions, not 20 pills. It’s waaaay more than 20 pills.) We’ve figured out a method for filling the pill boxes and keeping everything up to date. I keep a set of spreadsheets with his doctors, meds, etc. (Here’s the template if you need it.)

He averages  one doctor’s appointment most weeks, though when they show up they tend to arrive in packs. We’re at CVS 2-3x a week. He’s got some dental surgery coming up to swap out his last nine original teeth for dentures, but no date yet.

I can’t say things are quiet (in part because I’m superstitious, I admit) but they are relatively under control.

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Nathaniel and I have both been praised frequently for our resilience throughout the shenanigans. It’s my personal opinion that you can’t build resilience unless you’ve had to face traumatic situations. Together we’ve faced traumatic situations frequently enough that we were able to be resilient through the surprise! liver transplant and the recovery and the trip home. We’re still building resilience. We’d like to stop now. Can we stop? Does anyone know how to set the “trauma” setting on “low”?

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We could not have built that resilience, that strength to push through, without our parents, our brothers and sisters (including our siblings-in-laws), and all of our friends. A special thank you to Matt and Beck Gustler who spent so much time with Nathaniel at the hospital when I couldn’t be there, to Tina and Liz,  to Beth and my mom who were always available to take a panicked phone call, to Tony and Elise Makowski for everything they did organizing and hosting pinball tournaments. To everyone who visited, called, played pinball, and helped in any way at all. Thank you. We wouldn’t have made it this far without you.

We are exactly where we need to be. Now we need to figure out how to stay here.

Nathaniel is doing well. Weight is almost at 140lbs, appetite is good, no major issues and a few minor things we’re keeping an eye on.

The process of care is still keeping us on our toes but it’s closer to the “normal” battles of getting drugs filled or handling unexpected rescheduled appointments than it is anything else.

SciShow, a YouTube-based science show (I bet you guessed that) aired an episode on cystic fibrosis literally yesterday. It describes CF, the meds that changed Nathaniel’s life back in 2019, and what’s still being done to improve and extend the lives of people with CF (pwcf).  It’s worth watching even if you have CF.

One fun fact from the video: before Trikafta and for people who can’t take it, most people with CF still rarely survive their 40s. Nathaniel turns 50 in September, so he’s still pulling the median age of death forward.

Also, if you’re a younger pwcf even if you can’t use Trikafta, FUND YOUR RETIREMENT PLAN. It can still be used during the worst months of your lives to pay your bills. Ask me how I know!

Nathaniel’s six month new liver anniversary was May 15th. Here’s where we’re at:

• His liver numbers are fantastic
• His kidney numbers are also good
• His lung function is back up to where he was before the surgery.
• His back is still bad and will continue to be bad for the rest of his life. In fact, I think it’s safe to say he’s close to being back to the same pain levels he was in pre-transplant.
• He’s lost a lot of weight, but he’s currently holding stead and/or gaining, so the doctors are okay with his current progress as long as he continues to gain weight.  Nathaniel is no longer using the nasal feeding tube, which is great news.
• He’s also improved to the point that he’s taking care of most of his activities of daily living. I’m doing most of the driving and note-talking and organization around his health still, but we’re making progress. Plus, he’s got physical therapy to go to while he retains his strength.

Nathaniel’s meeting with his hepatologist yesterday says everything is good news. That’s the best we can ask for.

Today is notable. We’re packing up Nathaniel’s feeding tube pump and returning it. He had the tube removed last week and is eating fully on his own. The appetite stimulant and the freedom of picking his own food outside of the hospital has really helped him eat.

4:53pm

Nathaniel was discharged at about noon today. Now we’re all home and mostly settled. Nathaniel will be doing home IVs in addition to the feeding tube and respiratory therapy and oral meds. It’s complicated but we should hopefully be able to manage.

Not that we have any choice. For complicated insurance reasons it’s difficult to hire someone on a useful timeline to come help. We always have the option to pay a not-nurse to do the work (or even more for a home nurse that doesn’t take insurance). Until and unless things get substantially worse we are our own caregivers.

6:24pm

Nathaniel has a respiratory infection so he’ll be coming home on IVs, but plans are moving forward and he will be coming home. We’re hoping it will be Thursday of this week but we also know how getting one’s hopes up too high for a specific date can be dangerous.

The feeding tube is replaced and being tested tonight, and they’ve made some medication changes. Now we wait.

10:11pm

Putting a plan together for Nathaniel’s continued treatment has been difficult The discussions are never easy and the future is never clear. Sometimes, like now, that makes it hard to choose between the options except by arguing it out. Which, as one might guess, is not a particularly fun way to spend one’s time.

The CF team is going to have someone swing by tomorrow to discuss options with us. Is a PEG tube available? What about IVs at home? How do we transition back to Trikafta — or will that option disappear if it affects the liver? You know, light airy conversations.

I boarded the dogs this evening and am sleeping over at the hospital to ensure I’m here when the CF team is. I’m very tired (and Nathaniel is too) but this recliner is the best place I can be to support him.

Saturday I’m heading out to Lancaster to support my mom and my family. If anyone wants to visit Nathaniel, Saturday may be a good day for it.

Dad died very early this morning.

Mom, Brian, Mary, and I spent the day at Mom’s house, figuring out what to do next.

There will be a memorial service later, but nothing immediate.  And in the meantime, Nathaniel’s here for me and I for him.

Thanks to everyone thinking of the Kent family tonight. We love you too ❤️

5:55pm

It’s been a long day and it’s far from over.

Nathaniel’s digestive system is not cooperating, which is highly inconvenient when trying to eat food and gain weight. The docs are doing their best but it’s not an easy thing to diagnose “food is horrible”.

We had asked about the possibility of placing a feeding tube in Nathaniel’s abdomen (called a PEG tube) so that he could get the tube out of his nose, but it’s a serious surgery and the Liver Transplant surgeons are concerned about the amount of scarring that Nathaniel already has. In other words, placing the PEG could kill him and, as Nathaniel put it? if we don’t find a different solution for putting some meat on his bones,  not placing a tube could kill him. Fun!

Tonight is a CT scan to see if his lungs are acting up. He’s on antibiotics already. They’re also pushing fluids (in addition to the ones in the feeding tube formula and the things he drinks by mouth) in case he’s dehydrated.

He just had an IV blow out, which is frustrating as hell because we’ve been asking for a PICC line and the transplant team is afraid it will cause infection if added. So we’re fighting for fewer stabbings because holes in his skin from failed attempts to place the peripheral IVs are *also* an infection risk.

Tomorrow is a gastric emptying test, which is essentially a test where they make you get up at some gawdawful hour and eat a toasted egg sandwich laced with radioactive material. Then over the course of four hours or so they take pictures of the digestive system to see how far the nuclear sandwich has moved. If they determine that he’s got gastroparesis (slow gastric emptying) then we have at least a partial explanation for why eating has been such a problem — and hopefully a course of treatment.

Along with all of that, the CF team has convinced the Transplant team to let CF take over Nathaniel’s care. Fortunately, this means working with the medical folks who have the most experience with “failure to thrive”. Unfortunately it also means moving from the nicest building in the hospital to one of the oldest buildings, so goodbye giant tv and push-button window glass clouding. Hello to showering in a bathtub that doesn’t drain. Moving to CF should help get everyone aligned more quickly, provide access to the CF-specific parts of care that Transplant just doesn’t have knowledge of, etc. etc.

When Nathaniel heads to his CT I’ll be heading home. We’re trying really hard to avoid me boarding the dogs and staying down here both because of the expense and because it made us all a little flaky. Bonus points go to nice weather for the dogs to romp around just as Mei has gotten a new ball she is convinced she can bury in the yard.

Tonight Nathaniel will restart Trikafta, the “miracle drug” for people with the homozygous CF delta F-508 mutation. The good news: that med will almost immediately increase his lung function and his ability to absorb food in his small intestine. Bad news: it’s known to be toxic to the liver so the Transplant team is going to be watching his blood labs like a hawk. There is no guarantee he’ll be able to use the med and no guarantee that his new liver will be safe even if they decide it’s worth the risks. But at 125lbs one is often willing to take risks one wouldn’t take at 185lbs.

To round out the day, my dad’s been admitted to the hospital in Lancaster with blood clots in his lungs. I was kind of hoping to avoid playing dueling hospital visits this spring, but since Dad’s been struggling with dementia for a while now, I suspected this would happen eventually. Nathaniel’s known my dad for 33 years, so the anxiety is hard on both of us.

3;54pm

Well, I get to be the asshole in the room again. I’d like to thank the UX field for 18 years of training…

Nathaniel is exhausted. He’s slept pretty much the whole time he’s been here. It’s not satisfying sleep. It’s “my body won’t let me stay awake” sleep. And it interferes with his care because whenever a doctor or PA comes in to talk about his care plan, he’s asleep.

Anyway, there was a rumor they were going to send him home tomorrow with orders to never miss a feed and also run the feeds a little longer so we can reverse the slide.

In other words, their care plan was “he has to force himself to try harder”.

i just did some forcing myself. I forced the nurse practitioner to face the fact that we the changes that have been suggested so far are not going to actually reverse his weight loss. I forced some discussion on whether he should even be on the transplant floor because the new liver is not the problem right now. I forced them to consider that Nathaniel has been managing his care since he was 13, he’s a highly motivated person who isn’t going to skip a treatment without a very good reason, and there are no damn bootstraps he can lift himself up on.

And honestly I’m being a little selfish in these conversations because the general assumption is that if he can’t take care of himself then I am going to be the one to pick up the slack. Which would be great except I’m already doing that. The next step in me getting involved would essentially make me a nurse 24/7 with no respite until Nathaniel recovered enough to go off the feeds, at which point he would “only” have to worry about his respiratory therapy, diabetes, and rebuilding his physical strength. And don’t get me wrong. I will stand by Nathaniel for every step. But I don’t think even if I became that super bitch nurse that forces everything to happen on time and perfectly that it would happen on time and perfectly. And we’d be back here anyway.

So I don’t know whats going to happen from here. Probably nothing today, since it’s Sunday. But it looks like I need to be here bright and early tomorrow morning to make sure we get the care he needs.