Health Updates

8:02pm

Update for today: it was busy! Heart stress test, abdominal CT, feeding tube placement, Mom, Dad, and Shawn visiting. Also, Nathaniel got moved back to real food so I just placed a huge Wawa order.

The “no really you are going to communicate with me or I will beat you with a stick” activity has continued.

Nathaniel will get a determination on his transplant intake probably later this week — we’re waiting on cardiology and that’s about it. After that we wait for a liver. We have no idea how long we’ll be waiting and our job is to keep him as healthy as possible until then.

One of the hardest parts? He’s acting like he’s feeling better! He’s awake. He’s starting to eat again. He’s joking with people. He’s got the names of the staff down better than I do! And by the numbers he’s in way way worse shape than he was two weeks ago when he could do none of those things!

3:52pm

I haven’t done an update over the weekend because the weekend consisted of “drink fluids”.

Monday we were told the team would swing by and tell us what’s going on and they just… didn’t.

Today was “anne pitches a fit” day. I read the resident the riot act about the lack of communication and the fact that some communicators were bypassing me, telling Nathaniel, and then he was getting his wires crossed and telling me incorrect information. Does not fly with me. When I was done with the resident I had a strongly worded conversation with the nurse coordinator about a pile of small but risky things happening with the nursing staff that needed to stop.

It helps that I was starving at the time.

Nathaniel is currently getting a paracentesis — they’re taking fluid out of his abdomen. To my knowledge he gets to rest the rest of the day, which is good because there were problems with the night nurse not knowing how his feeding tube worked that kept him up all night. (See previous “I chewed out the nurse coordinator”)

(And if any of you are worried about my temper, please be assured that I turned on my very best “Vanguard Talking to An Executive” self and everything I said was also surrounded by honest compliments to the staff and the hospital. This place has saved his life. They just also have to not break the feeding tube.)

Nathaniel is officially in the process of being evaluated for transplant. I have an entire folder of documents describing what this means so if you want more details tell me. It will probably be a little while before he has a final answer and in the meantime we have to ensure he stays alive and as healthy as possible. He is doing physical therapy, which helps, and drinking shakes from Wawa… if they can figure out what’s going on with the colon scan he’ll be able to switch back to real food right after the scan. He had an echocardiogram / heart ultrasound this morning. He’s got a heart stress test tomorrow. If there are other tests coming and there most certainly are, we just don’t know what they are yet. (See previous “chewed out the resident”).

Also, I honestly don’t know if it’s true but Nathaniel told me this morning that one of the doctors (he couldn’t say which one) told him he didn’t qualify for a living donor transplant. I’m telling all of you this because I know some of you are hoping that living donor is an option and I want to make sure you know right now that it may not be. Which is scary. But also this is the same man who told me this morning that “they want me to do a stress test which is a dry run of what the hospital will do when i come in for the transplant” and I was like “my good dude I had a stress test in march I assure you that is not what it is”. So don’t put your hopes on a living donor — but don’t rule it out 100% until I verify it.

I’m going out to dinner with a friend this evening and then crashing at the hotel again tonight. I had to relocate at 1am yesterday because my newly-renovated room’s door had just enough of a gap around it that every time the heating system turned on and blew air into the room, the door hummed like a jet engine. So that was fun. But they did give me a box of chocolates for being a Silver Elite member and with Nathaniel’s health being what it is Marriott might just make me a Lifetime Gold Elite member this calendar year because I’ll have 400 nights in marriott properties, courtesy of lots of work trips and a love for Virginia Beach.

Nathaniel’s parents are at our house because it’s much closer than Kutztown and Nathaniel’s brother is driving in from South Dakota, arriving very late tonight. I’ve got permission now to spread the word to friends and acquaintances on what the hell is going on, so communication will soon be more of a challenge. I don’t really want to set up a Caringbridge website but it might come to that for my sanity. Similarly, I don’t really want to set up a gofundme for fundraising, but that’s a conversation that I’ll be having with the transplant coordinators.

Anyway, this update is long enough. We’re still here. His numbers are not good but he’s still kicking (and screaming) to get what he needs. As long as he’s fighting, I’m fighting.

Open roads and kind fires, friends. We’ll get through this.

12:24pm

TIL that when you get critically ill your pituitary gland can freak the fuck out and throw massive amounts of TSH into your system. Which is fine (I guess) if you have a thyroid but since N does not, he came into the hospital with a TSH of 36 and it climbed as high as 51. So the docs gave him a bunch of synthroid (thyroid hormones) to get his T3 and T4 back to acceptable levels… but the pituitary takes time to settle, so his TSH still looks stupidly high.

Lessons learned:

1. Pituitary glands are panicky little idiots
2. Watch the T3 and T4 numbers in the hospital not the TSH

***
1:54pm

Looks like we’re going to be here at least another week.

God I miss my CF friends so much right now

One of my friends — Aubrie — she got a lung transplant at like 22 years old. She married her best friend. She died the following Christmas. You think you’ve finished mourning someone when 30 years have passed and then someone mentions the upcoming holidays while you’re sitting bedside and it all comes back like it was yesterday.

And it’s so so easy to get mad about it. Barbie would have loved all this tech. Robin would have laughed himself silly. Hal would have been his curmudgeonly self. And the tech wasn’t there. Trikafta wasn’t there. So they’re gone now and all of the old support groups have died off or gone away.

I think it’s lonelier when I know what kind of support I could have had than if I had never known any of them.

And yet without them we wouldn’t have gotten this far.

I wonder if Kim’s son is still alive. I wonder if Barb’s dad ever finished his giant hoard of toothpaste. I wonder how I can find them or even if they want to be found.

***
5:15pm

🤦🏻‍♀️ OF COURSE the active cf community moved to reddit. I’m an idiot.

***
7:08pm

Nathaniel is out of his colonoscopy which was *almost* a success. They were able to scope his sigmoid (bottom), descending (left), and transverse (top) colon sections, but his ascending (right) colon section was *still* filled with, well, crap, so they need him to stay on a liquid diet this weekend (but thankfully not another weekend of golytely — I hope) and then they’ll try imaging the ascending colon early next week.

Why is this important? Well, for one, if there’s something unusual going on where the small intestine meets the colon, it could explain the abdominal pain he’s been having. And for another, colon cancer would disqualify him for a liver transplant so they have to ensure that there’s no cancer in there before he can get approved and on the list. The doc who stopped by said that so far they haven’t found anything that would either cause the pain (👍🏻) or that is cancerous (👎🏻) so we’re in mostly good shape there.

I don’t think he’s going to be thrilled that he’s going on a liquid diet for the weekend but I do think he’ll like it better than another weekend of prep.

Plus they’ve decided that his weight has fallen far enough that they’re going to put him back on the tube feedings since he has the Dobhoff (nasal gastric) tube in anyway. That’s great news for him because it means he can sleep while he eats.

The team is watching Nathaniel closely right now because in the last three days his liver decided to tag in the kidneys for shenanigans. Credit to the doctors: they jumped on the problem immediately, because if the kidneys go bad too then Nathaniel would need to have both liver and kidneys donated and that’s much harder to find (and survive) than liver alone.

The team is also leaning heavily toward evaluating Nathaniel for transplant inpatient. Once again, both good and bad. Good because it gets it done. Bad because the hospital strongly prefers to evaluate when someone is outpatient because it shows that they’re strong enough to walk around, feed themselves, etc. and having to be evaluated inpatient generally means the patient is sicker than others and (ironically) not as good a candidate. Part of the challenge in evaluating for transplant is that the people most likely to survive a liver transplant are healthy — which means they don’t need a liver transplant — and the people least likely to survive are the ones who desperately need that liver.

The guidelines and evaluation process is, to my knowledge, relatively standardized across hospitals and HUP is the 8th best hospital for a liver transplant in America, so I’m confident that whatever decision they make will be based on sound data. Oh, and a “no” doesn’t *necessarily* mean “no forever”, it could just mean “you need to get stronger first”.

So if transplant eval happens next week then we will be inundated with not only questions and examinations from the various medical departments themselves, there will also be a financial evaluation, an evaluation of Nathaniel’s medical insurance, instructions for things I have to do, a need for us to update his living will (and mine while we’re at it), etc. etc. etc.

It’s going to be a very busy week.

Here’s Nat now! Later all.

5:03pm

Ok so if we all think really hard that after this colonoscopy Nathaniel will be deemed healthy enough to go home then I might be able to spring him Saturday night.

It’s either that or they do the transplant evaluation with him inpatient and I suspect that won’t go as well

***
10:14pm

Day 26: Nat didn’t get his colonoscopy today because his discharge wasn’t clear enough to indicate that the colonoscopy would be successful and there is no point in having an unsuccessful colonoscopy.

To say Nat was frustrated would be a significant understatement but we did reach a point of agreement that since it has to be done for the liver transplant evaluation anyway, pushing through until we’re sure he’ll have a successful colonoscopy is better than stopping and having to do the whole thing over again in a few weeks.

Meanwhile his liver numbers are…. Not necessarily rising but also not coming down the way they should. There is mention of doing the transplant evaluation inpatient if the docs don’t think he’s healthy enough to go home. I’ve decided not to think about that one way or the other until we get past the colonoscopy.

So it’s 10pm and between now and midnight Nathaniel will consume another half gallon of golytely (making it something like 3 gallons in 3 days) and then at midnight go NPO (no food or drink) with a decision in the morning on whether he’s getting the colonoscopy tomorrow.

Nobody has told me what happens if he’s still not clear tomorrow so let’s just hope he is. Especially since he was really mad about it today — understandably so — and will be even madder tomorrow.

(For the record I told both the doctors and Nathaniel that there was no way he’d be clear in two days based on how things had gone the previous colonoscopy prep 4 years ago, and so did his CF doctor, and neither of us smirked about it today. Sometimes all you can say is “well, here we are.”)

I don’t normally go to sleep this early especially after a big meal (a friend took me out for Mexican! I ate cactus! It was good!) but it looks like my migraine is trying to make a comeback so I am off to take a hot shower and then go to bed.

3:33pm

Everything seems to be moving so fast today and it’s frustrating to not feel like I have a handle on things

***
9:38pm

Nat is in the middle of prepping for his colonoscopy, which honestly is wiping him out. He slept most of the day but rallied in the early evening, possibly because the prep (a gallon of golytely) kicked in again.

He’s still having problem with pain, which might be the liver stent, might be a gentle case of pancreatitis, or might be some third thing the docs haven’t found.

Because of the stent they placed yesterday he’s back on antibiotics, which is good.

And I love him. I want to go home and bring the dogs home and go back to “normal” life and then I look at him and think nope, I’m right where I belong. We’ll figure this out.

9:28am

They took Nat downstairs at 6 and it is now almost 9:30. Last time I got text messages the entire time with updates. This time either he isn’t even started yet or they aren’t doing the text messages. I’m trying to keep in mind that it took until 10:30 for him to get sent back up to his room last time and last time there was a clear and obvious problem.

In the meantime let’s talk about the saga of the bathroom leak.

He moved into this room something like Thursday of last week because the liver people wanted all their patients on one floor. Midafternoon of the day he arrived maintenance came in, trying to figure out if there was a leak in the bathroom. Note that there was no water in his bathroom, the leak was in the room downstairs.

Oh! The nurse just popped her head in and said that he’s in recovery and will be up in a little while. Whew!

So every few days since then the maintenance folks have asked to come in, usually 2 to 3 of them, to see if they could identify the leak. The good news is that it doesn’t appear to be N’s toilet or tub, though it might be his sink. The bad news is that there has been a lot of banging on pipes.

I was about to say that it’s really good N isn’t here right now because someone one floor down is either using the wrong size drill bit to remove a screw or they’ve gotten out the saws all to go hunting for the pipe. They’re trying to be quiet about it, only running it for a few seconds at a time but surprise surprise it’s still really loud.

I hope they find the leak soon so we don’t have any more disturbances.

***
10:48am

When the attending says “at some point you and I are going to have a discussion about this but not in a public hallway” someone is going to have their ass handed to them and I’m pretty sure it’s not the attending.

***
3:54pm

Docs came around and said the hope is Nat can have a colonoscopy as early as Thursday to make sure his digestive system isn’t causing the abdominal pain. In the meantime they did find a stricture (tight point) in his bile duct so the stent that was put in should help clear out any lingering infection — which means he’s going back on antibiotics.

Best of all (to me) they put a tube down his nose to give him his colonoscopy prep so that he doesn’t have to taste it and I don’t have to nag him to take it. With eating and drinking being a big effort right now, any way we can help him increases the chances that the colonoscopy will be useful.

***
9:59pm

I suspect that I am a resident’s worst nightmare. I read the test results. I ask what words mean. Today I asked two questions at the end of rounds. One was about whether the stent they put in was or wasn’t going to need to be replaced because GI had said both answers at different times. The second was “so I understand what albumin does now but how low can a human’s albumin get before he, just, y’know, pops.” (Albumin is a protein that keeps fluids in your cells where they belong. No albumin should make all your insides into abdominal fluid.)

And the resident looked at me and I looked at him and the attending said “oh he’s not going to be able to answer that.” And I said “ok” and then looked at the attending who essentially shook his head as if to say “because nobody knows that” and then proceeded to tell us all about studies where they’re testing whether giving liver patients albumin in an outpatient clinic will improve their health.

My other winner this week was “if the hypothalamus tells the pituitary gland to release TSH and the pituitary gland sends TSH to the thyroid, and there is no thyroid, but we’re providing enough synthroid to create stable levels of T3 and T4 then why is the TSH still climbing? Is the hypothalamus on some kind of hallucination or is it the pituitary gland?”

I got told to ask Endo.

Endo was not prepared for the question and essentially ran like hell.

7:42pm

Hello and welcome to Week 4 of Anne and Nathaniel learn about the liver. When last we saw our intrepid duo they were in hopes that Nathaniel’s eating would improve over the weekend and tickets home would be generated early this week.

Yeah, that didn’t happen.

Instead, we learned today that tomorrow the GI team is going to do another ERCP – an Endoscopic retrograde cholangiopancreatography – a long thin tube with a camera on it to explore the liver and pancreas. You may remember that Nathaniel had an ERCP back on Wednesday the 15th, near the beginning of this saga. That did a lifesaving amount of work to clean stones, sludge, and pus out of Nathaniel’s liver. But his blood tests say that somewhere his body is (probably) still fighting an infection and the team has so far been unable to find the infection in question. They are going to go scope the liver a second time, clean out any remaining liver garbage, and possibly put in some stents if they’re needed, to ensure that bile drains out the bile duct and blood goes back into the blood system the way nature intended.

But that’s not all, folks, because we’ve got two big features for this week assuming the schedule allows! Nathaniel hasn’t been eating much because every time he does he gets severe abdominal pain. Like not bad enough to puke up his meals but certainly bad enough to discourage him from eating in the first place, and at this point, the man does not have the weight left to lose. But he hasn’t had a colonoscopy in 4 years so the good folks here are hoping that they can wedge a colonoscopy into Friday’s schedule — which honestly would be quite the thing because hospitals hate doing inpatient colonoscopies.

So Nathaniel is currently not allowed food after midnight, and may not be allowed to eat again until friday, all the name of getting him to eat more. Isn’t science a trip?

In the good-news column with a little help from yours truly, Nathaniel got his first true shower in 21 days and it too all the effort I could muster to convince him to leave the land of infinite hot water and get out of the shower. He is now in clean clothes in a freshly-made bed and if you’re not sure how wonderful that is, you could try it… just don’t do it anywhere that people will be able to smell you during those 21 days.

The dogs are in Petsmart for another week, getting more muzzle training, which is good. And I’m down at the hospital seeing how many days in a row my back can handle the current recliner before it demands an actual hotel room. We were able to get our ballots in for the election, and I’m working on Nathaniel’s medical benefits through medicare this week. Fun stuff!

Anyway, that’s the report. More tomorrow when he’s out of his ERCP, which hopefully I will sleep through.

1:52pm

Ah we have reached the point where I finally have a half hour cry and meltdown. People are sending me information to choose a home health provider, but nobody will tell me if they’re planning to discharge Nathaniel or when. So how am I supposed to pick a company for services if I don’t know what services he needs? And why is everyone insisting I wait until 4pm to find out when somebody clearly knows something or they wouldn’t be asking me to choose a home healthcare provider? This is literally the thing that throws me over the edge every single time.

There is no discharge planning until rounds finish this afternoon because apparently nobody will send discharge planning around until they decide whether they’re going to send him home…. he’s so exhausted that the only time he was awake all morning was when I got in a fight with him over whether i should ask to have the docs come around and tell me what’s going on. He’s still not eating a reasonable amount, about 1000 calories yesterday. And while his white blood cells dropped slightly today they’re still apparently pretty damn high, so they’re trying to rule out an infection nobody’s been able to find. I’m terrified I’m going to take him home and he’s just going to crash out again.

***
3:24pm

Once I stopped crying I very politely and professionally raised hell with four doctors.

Apparently the team that sends out the text message for you to choose the home healthcare folks will do so as soon as they know you’re going to need home healthcare, with no warning to the docs that the message is going to come in and I am not the first person who’s panicked. The docs here did say they’d put in a word on my behalf.

They are still investigating what’s going on and Nathaniel is staying inpatient until at least Sunday or Monday because there are still a number of things the docs are not happy about, including his sleep, the number of calories he’s taking in, his belly pain, and the fluid that is already starting to refill on his abdomen. They’re not going to kick him out by any means but it is becoming evident that we may have hit a wall on things they can do before the transplant evaluation. And the best way to get a good score on the transplant evaluation is to be strong enough to walk around, eating regularly as an outpatient, etc. which are all things that he needs to be outpatient for.

He’ll only need PT when he gets home, both physical and respiratory from what I heard. His CF doctor said that his CT scan of the chest and abdomen came back so clear that most people (including doctors) wouldnt’ have any idea he has CF. He’s perfectly healthy if you ignore the part where his liver is trying to kill him.

So the plan for the day is to try to get him up and moving, try to get him to eat, and then go back to the hotel for the night. Then tomorrow I’ll check out of the hotel, spend a little time here to make sure I know what’s going on, then go back to Petsmart and pick up the dogs and take them home.

***
5:14pm

nurse: i’m going to give you some levananol
me: doot dooo do do do
nurse: and here’s your lansoprozol
me: do do doot do
nurse: and here’s your eye drops
nat, looking me dead in the eye: go ahead, fit that one into the song!

8:00pm

Hello from university city!

I am waiting for my order at one of my favorite Chinese places while writing this note. Myka is back at Petsmart after a successful day yesterday — she is already on the mend — and I am staying at the Sheraton less than a mile from the hospital.

Nathaniel was moved to Ravdin 931 at 6:15 this morning. The doctors later apologized for the early morning move. He’s also had a CT scan and a paracentesis today so he’s out like a light and will hopefully sleep through the night.

I only got to talk to Dr. Hadjiliadis today, Nat’s CF doc. He said that the blood draws indicate Nat has an infection, but they don’t know where. So today’s activities were all centered around finding it so we can beat the hell out of it.

Tomorrow is Friday and the doctors are often off on fridays because they work such long hours the rest of the week. I don’t know if they’re going to have results of the tests by tomorrow or not. But now that I’m sleeping walking distance away I feel better knowing I can get there quickly.

10:11am

Good morning friends! I have decided to wake with positivity and joy. And also I am hiding a bat behind my back in case the doctors give me any shit. I call this the Aunt Ginny method of dealing with fellow doctors.

***
2:00pm

We talked to the docs and got information about a liver transplant. N is thinking it over. The biggest worries health-wise are his strength and his lung health, both of which are good but could be better.

The liver he has is not going to get better.

Cystic fibrosis has allowed his liver to fill with gunk, and that’s caused cirrhosis and fatty liver disease. It’s giving out.

It doesn’t happen to everyone with CF but at least in the past part of that was because they died of bad lungs first.

I have way too many emotions to even let them in the door so I’m riding this all as “it is what it is”.

***
7:24pm

How long have I been going to the hospital now? The parking garage attendant said good night and have fun feeding the dogs because he recognizes me.