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Anniversaries & Life Updates

Today marks three years since Nate’s third transplant and each day only makes us more grateful. Today and every day, we’re holding Nate’s third donor and his family in our hearts. They have made so, so much possible.

It’s also been a whole year since our last post, and what a year it’s been! No news about Nate’s liver has been good news. And we have lots of other news, also in the good category.

First: Our family has grown! We were keeping a little secret last September! Our baby girl was born in February 2021, and we can’t even begin to describe the happiness she brings. We found out Ann was pregnant last June, a year from the day our family spent in the ICU with the palliative care team discussing moving Nate to hospice. What an incredible journey we’ve had and continue to be on. COVID made for an isolated pregnancy, but Zoom baby showers and other virtual get togethers helped us stay connected and share what we could with family.

Ann’s pregnancy was mostly uncomplicated, a whole new path for us in the medical realm! It was a strange role reversal with Ann as the patient and Nate as the caregiver for the first time in our relationship. Parenthood is something we didn’t think we’d be able to experience together, and we are very grateful that isn’t the case. We spend so many moments just marveling at the fact that Lucy exists and getting lost in her giggles.

Nate has also returned to work as a physician! Rather than returning to surgery residency, he made a career move and matched into emergency medicine. We moved to Minnesota in June for him to start residency at Regions Hospital. Saying goodbye to our support system in Madison and all the nurses, doctors, and healthcare workers who kept Nate alive was difficult and a bit scary. But we love life as Minnesotans so far, and Nate is finally doing what he trained to do: care for patients.

He’s now on the front lines of the ongoing pandemic, so we are infinitely thankful for the COVID-19 vaccine and the fact that he has been able to get his three doses. Because of the data he has from participating in clinical studies about immune compromised patients and the vaccine, we know he has antibodies. That gives us a lot of reassurance, but we’re still very cautious, especially because we want to do everything we can to protect Lucy too.

>>> We would be remiss if we didn’t take a moment to encourage you to get vaccinated against COVID-19 if you haven’t already. Nate is seeing firsthand how awful this disease can be, and we as a family know the pain and heartbreak of having a loved one in the ICU. Protect yourself and your loved ones from disease, grief, and the financial distress that come with serious illness. Get the shot! <<<

“So, is Nate like, cured then?”

Three years, more than a dozen surgeries, several extended ICU stays, multiple bleeds, and so much more later, the simplest answer is “No… but he’s not actively sick either.” The fact is that the artery that’s supposed to carry blood to Nate’s liver (his hepatic artery) isn’t doing that. It clotted off in June of 2019 and hasn’t functioned since. But, at least for now, his body seems to have figured out some kind of workaround, although the doctors aren’t quite sure what it is. But somehow, his liver is getting the blood it needs.

To be certain, all that time in the hospital and all those abdominal surgeries certainly had long-term effects on Nate’s body. One of the biggest obstacles he faced going back to work was getting back into shape for it physically. He’s worked hard to build his strength and endurance, and continues to do so. He’ll also be immune compromised forever because of his transplant medications, which is even more risky in today’s COVID-laden world. The future remains uncertain for us in a lot of ways. But when we look at where we are compared to where we thought we’d be, the difference is staggering. Nate holding Lucy on his lap as they swing on the playset is enough to make Ann burst into happy tears.

We’ve come further than we ever thought we could, and we’re forever grateful to all of you on this journey with us. Take a moment with us to send some love and light to Nate’s donors and donors everywhere today. Each day our family has together is a gift from them.

We don’t know what lies ahead. But we’ve learned that life doesn’t have to be perfect to be wonderful. And some days, it feels like both.

All our love,

The Baggetts

Two Years Since Transplant #3

September 5, 2020 marked two years since Nate’s third transplant.

We’ve spent time this weekend sending love to our donor family, reflecting on those two years, and celebrating the life Nate is now living. We’re grateful every day, but perhaps even more so as we reach this milestone.

The last two years certainly haven’t been easy or smooth. In fact, last year at this time we were focused on enjoying the moments we could while preparing for the possibility that Nate would need hospice. But the last several months have been healthy ones for Nate (if not the rest of the world). In fact, it’s been 14 months since Nate’s been admitted to the hospital, our longest stretch - by a LOT - since 2014. Just a couple of weeks ago, he had a video appointment with his liver doctor and everything continues to look great!

We don’t know how, but his liver continues to function without a hepatic artery (reminder: it clotted off at some point in June 2019 when Nate was in the ICU following a major bleed). But his liver function tests are all normal, he’s back to his pre-PSC weight (for the first time in 10 years!), and his stamina and endurance are such that we can now go for multi-mile hikes!

Out for a morning hike at a local nature preserve... 3.5 miles with hills is definitely not something we were able to do together two years ago!

We’ve been spending quarantine working in the garden, doing house projects, and catching up on our reading lists. We’re taking COVID-19 very seriously (and hope you are too). So we’ve been sticking close to home and have seen only a couple family members and friends outside, at a distance, and wearing masks. During evenings and weekends, we’re exploring nearby parks, talking to neighbors from across the street, and staying in touch with friends over Zoom. It’s not the year we had planned, but that’s pretty par for the course for us at this point! Life doesn’t have to be perfect to be wonderful, and we’ve had many, many wonderful moments recently.

But we know that another family spent this weekend very differently. Instead of savoring a milestone, they were remembering the last time they saw their loved one. It will never cease to amaze and humble us that in their darkest hours, our donor families chose to bring us light.

So this holiday weekend - and every day - we’re doing what we can to honor that light and that gift. We wish there were words to capture all that we want to say to Nate’s third donor family and to all donor families, but the only ones we’ve got are “Thank you.” We know they’re not enough, but we’ll keep saying them every day anyway.

<3 Nate & Ann

The View from Quarantine

At the Baggett household, we’re staying safe, staying healthy, and staying home. We’re hoping you and yours are all able to do the same. Nate has been feeling great lately, which is especially good seeing as he can’t go to the clinic to get his regular labs done right now because the risk of infection is too high.

For better or worse, we feel as though our experiences with uncertainty and fear are coming in handy nowadays. Because the uncertainty and fear are the hardest part of what’s happening in the world right now.

When we see the protesters on TV and the angry posts demanding we return to business as usual, we see folks afraid that life has changed in a way they’re not prepared for and that they can’t fix.

When we see the exhaustion in the eyes of a coworker homeschooling their kids, we see somebody worried that they can’t keep this up much longer.

When we hear the loneliness in a friend’s voice, we recognize the sadness that comes with being separated from the routines and the people you rely on for support.

Basically, we see us and all the emotions we’ve wrangled with since Nate first got listed for transplant.

Our hearts ache for all the people affected by the pandemic. And the reality is that’s everybody.

We’ve received so much love and light and support over the years, and we’re sending it back out into the world for everyone now. We don’t need open shopping malls to be a community, we don’t need to be inside church buildings to pray, and we don’t need to stand close to each other to stay connected.

In short: Life doesn’t have to be perfect to be wonderful.

So just know that the Baggetts are, for once (knock on wood!), quietly doing fine. We are lucky to have a full freezer and lovely neighbors who run to the store for us. We’ve got friends and family who are taking the Stay at Home order seriously, and we’ve got each other. We’re hanging in there.

We hope you are, too.

Forward to 2020!

Happy new year to all! We wanted to post before the end of the year to let you know why you haven’t heard from us for a while: Nate has been feeling great and we’ve been enjoying a couple months of “normal” life.

That’s certainly been the biggest blessing for us to celebrate over the holidays. During this season of giving, we’ve been constantly thankful for the awe-inspiring gifts of life Nate has received and the three Christmases we’ve had together because of those gifts.

Kicking off the Christmas season with a tour of Wrigley in November.

Even when he’s been feeling well, transplantation is never far from our minds. Life after transplant comes with long list of responsibilities and new worries. We’ve certainly faced fewer complications and setbacks this fall than earlier in the year, but that doesn’t necessarily mean things have been easy.

The biggest challenge for Nate this fall was getting off opioids. Nate was taking some form of opioid continuously from August 2018-November 2019 -- almost 15 months of being on powerful pain relievers. For Nate, opioids have been a necessary evil. After all of his surgeries, he had near constant, excruciating pain that kept him up at night and made it hard to think clearly. The pain medications gave some relief, but they weren’t without downside. They have a lot of side effects, and the most bothersome for Nate was how cloudy the meds made his thinking feel. But every time he tried to taper off them, a new complication arose that meant he needed to go back to a higher dose.

So as soon as Nate was feeling better, he tried to get off opioids. After his first and second transplants, Nate stopped the medications too quickly and went through withdrawal. So this time, he slowly tapered down his dose over almost 10 weeks. Tapering slowly was more tolerable than stopping abruptly, but he still experienced some uncomfortable withdrawal symptoms. He was achy, he couldn’t sleep, his nose wouldn’t stop running, he had headaches and random tremors, and he was more sensitive to pain for a couple weeks. Finally, by the middle of November, he was feeling more like himself. He was able to transition from opioids to just Tylenol. Now, he’s taking no regularly scheduled pain medications, just Tylenol occasionally when the pain gets intolerable.

But even when Nate is feeling ok, we’re anxious. And we’ve encountered a few new worries. In October, Nate started to get itchy. It was a familiar and scary symptom, one that -in the past- has been a sign that his liver was beginning to fail. (The liver processes toxins in the blood and when it isn’t working, those toxins build up and make you itch.) At the same time that was happening, one of his liver labs began drifting barely above normal. It was a nerve-wracking couple of weeks as we stressed over what might be coming. Were infections beginning to form in his liver? Was the blood supply finally petering out? Eventually, his doctors did a scan of his liver to check in. They found... a whole lot of nothing, which was a great relief. The MRI report found that his liver was unchanged since July, still inexplicably stable even without a blood supply from the hepatic artery to support it.

Seeing Hamilton in Appleton in October.

Despite new challenges and worries, each day reminds us of how wonderful life can be. We continue to be blessed with moments to treasure with our closest friends, god kids, and family. We have a renewed appreciation for simple pleasures like an evening at home cooking together, doing work in the yard, and preparing for the holidays together at home. We’ve also taken advantage of the opportunity to create some special moments. The last few months have included attending musicals and concerts, several nights out with friends, a trip to Chicago, and family gatherings that -after all we’ve been through- have taken on an extra meaning. We’ve loved getting to be around for the special moments of others too, sharing in both the joys and the trials.

We’re ending the year 2019 remembering the special donors who gave us this new chance at life and the hundreds of health care providers and hospital staff who were there by our side through it all.

We’re starting the new year looking ahead with a lot of uncertainty. It’s been just six months since Nate’s last surgery, and his future is still very unsure. But we are also full of hope that 2020 and the decade ahead is full of love, togetherness, and happy adventures.

A day at the Shedd Aquarium with our god kids in November

A Merry Tuba Christmas at the State Capitol with our friend Laura!

Making Christmas dinner for the Schnoebelen family with sister-in-law Joy!

A holiday outing with some of Nate’s family to the Milwaukee Public Museum

Life doesn't have to be perfect to be wonderful. 2019 UW Vascular Surgery Department Holiday Party

September: A Month of Milestones

It’s been six weeks since our last post, and we’re happy to confirm that no news has been good news!

Out to dinner to celebrate the one-year anniversary of Nate’s third transplant. A year ago this night, Nate was in the OR and Ann was waiting anxiously in the surgical waiting room with family. We’d so much rather spend our evenings like this!

September was a month of milestones, many we’d worried Nate wouldn’t be around to commemorate. We marked the one-year anniversary of Nate’s third transplant, our fourth wedding anniversary, and what would have been the 18th birthday of Cori, Nate’s second donor.

Cori’s family has become such a special part of our lives. We got to go to dinner with some of them in early September, right around when Cori would have turned 18 years old.

We also took our first flight since Nate’s third transplant, going to Denver for a long weekend to celebrate the wedding of friends and do some sight-seeing. We spent another weekend in Madison finding fun activities around town with three visitors (friends Lia and Meaghan + Nate’s dad) and another weekend back in Iowa for more wedding festivities with friends. In the meantime, Nate has been busy working a few hours a week for the Surgery Department research lab. (Ann has been working more-or-less full-time since July.)

It has been an incredible whirlwind of a few weeks and Nate has been stable and relatively well. Perhaps the most exciting news of all came on October 1st when, to our surprise, Nate’s last drain was removed!

On the flight to Colorado, our first flight with this liver!

Our first wedding together since Nate’s third liver transplant! Congratulations Justine & Nathan!

Nate’s weekly liver function tests have continued to be normal, indicating that his liver is staying healthy. He’s on three anti-rejection meds: MMF, prednisone, and tacrolimus. They’re medications that weaken his immune system so that his body doesn’t treat his transplanted liver as foreign tissue it should attack. But those medications have a lot of side effects including high blood pressure, bone damage, upset stomach, headaches, and –because his immune system is being weakened - increased risk of infection. A few weeks ago, his hepatologist (liver doctor) said that things were so stable, it was time to try weaning off of one of them. (Ideally, transplant patients can eventually get down to taking just one immunosuppressant.) Nate cut his MMF dose in half without any issues and is continuing to taper down.

Exploring some of Madison’s sights with Nate’s dad, including the GLEAM art exhibit at the Botanical Center

Another wedding! We are so happy to get to celebrate big events in person again! Congratulations Kaylee and Bill!

On October 1st, Nate went to an interventional radiology appointment to check in on his remaining drain. The plan was for them to exchange the tube going into his liver for a fresh one, leaving the drain in place to make sure that any infected fluid collecting in his liver was removed. But when Nate woke up from anesthesia, he was drain-free! The IR report explained that there was no evidence of a bile leak or a cavity in the liver where infected fluid could gather. They even put in a new tube just to make sure the old one wasn’t clogged and affecting their view of things. After talking with the whole team, they decided that Nate’s liver had healed so well, they couldn’t rationalize leaving the drain there. We were very surprised! Ann hadn’t even come to the appointment because we didn’t think anything would change!

The drain had been in since last spring, when the surgeons confirmed that a biloma (infected fluid pocket) had formed in Nate’s liver. At the time, they’d told us that bilomas like this often took years to heal… or never really did. Nate had kind of expected he’d have the drain for the rest of his life, and after all he has been through, he was okay with that. He had been saying, he would rather “live with a drain, than be dead without one.”

We were cautiously happy that the drain was out, but the first 24 hours afterward were pretty anxiety-filled. We waited and waited for Nate to get a fever, a sign that there was infected fluid after all. We checked his temperature over and over, ready to rush him to the hospital. But the only chills he got were from the fresh fall air. Now, almost a week later, we’re starting to feel more confident.

It’s easier to go down a slide with your godson when you don’t have any drains to contend with!

Nate’s moving better nowadays, but still with a decent amount of pain. We take a lot of breaks, sit on a lot of park benches, and park close to wherever we’re going. A big hurdle ahead of him will be working his way off pain meds. He’s on much lower doses than he was earlier this summer, but weaning off them completely is a slow, painful, difficult process.

We’re hopeful that Nate’s current positive trajectory continues into the fall and beyond. We have no idea what to expect because things are going so differently (in the best way!) than anyone predicted just a few months ago, but every week that his labs stay normal and he stays out of the hospital is another week of progress. And for that, we are so, so grateful.

These two women were such a big part of keeping both of us healthy and sane over the last few years. Erika and Teresa have been Nate’s primary nurses on the transplant floor. We would have been lost without their endless support, pep talks, and diligence. It was fun to finally be able to host them and their awesome husbands for a backyard BBQ!

A Month We Didn’t Expect

Five years ago. 2014. That’s the last time we had a summer when Nate wasn’t incredibly ill. In 2018, he was bright orange and miserable waiting for his third transplant. In 2017, he was in and out of the hospital before and after getting his second transplant. In 2016, he was on the waiting list for his first transplant. In 2015, he had several bouts of cholangitis leading up to being listed for transplant.

All this to say: We’ve got a lot of missed fun to make up for, so we have been cramming August full of activities.

Right after an awesome Cubs win over the A’s on a gorgeous August night. (THANK YOU, Heather!)

Whenever we talk about how Nate has been feeling, it seems like we start speaking in hushed tones. It’s like we’re afraid to call attention to him for fear of reminding someone somewhere that they forgot to flip a “sick” switch. Because the reality is that Nate has been doing far better than any of us expected.

When Nate’s brother and sister-in-law visited from Seattle, we went over to Milwaukee for a Brewers vs. Twins game

Eleven weeks ago tomorrow night, Nate was in the passenger seat as Ann sped down University Avenue toward the ER. He was in agonizing pain and we knew something was wrong, but we didn’t know how bad it was. Looking back now, it makes us almost sick with relief knowing that if we lived much farther away from the hospital, Nate likely would have bled to death.

At some point during that week amid the multiple surgeries, Nate’s hepatic artery completely clotted off. After so many surgeries on and around it, the fragile vessel carrying blood to his liver just couldn’t hold up anymore. We cried. We were thankful he’d made it through the acute emergency of the bleed, but knew that the artery failing was the first step in what we’d been told would be Nate’s steady, and likely final, decline.

At that point, we couldn’t have imagined that in August we would be able to spend evenings at Wrigley Field, Miller Park, and Lambeau Field. We’ve taken the dog on walks by the lake. We’ve hosted family and friends for visits, cooked lots of delicious meals, and crossed several things off our Wisconsin Bucket List. Through it all, Nate has been feeling great, all things considered.

Our first-ever game at Lambeau included sideline passes thanks to a sweet hookup on the Texans side. (THANK YOU, Allie!)

His doctors haven’t been able to figure out where the liver is getting its blood supply now that the hepatic artery is down. Maybe new vessels have formed that aren’t visible yet on the scans? Maybe the liver adapted to be able to get what it needs through the portal vein? Nobody is sure. But what we know is that is that, ever since his birthday, every one of Nate’s liver function tests has been completely normal.

It’s only been a couple of months, so it’s still not clear how well Nate will do in the long-term. It’s not a clean bill of health, and we’re certainly not out of the woods. But it’s a lot better than what we’d expected and planned for, so we are soaking up every moment.

Back in Cedar Rapids to see the Schnoebelen-Miller family and play some bingo at the Sweet Corn Fest.

Seeing a show at American Players Theatre has been on our bucket list since moving to Madison. We finally made it happen with Amelia, Adam, and our friend Meaghan!

Nate still has an appointment or two at the clinic each week, and he also gets his labs done once a week. But they removed his PICC line at the beginning of the month and interventional radiology downsized his remaining drain (in his right side) a couple of weeks ago. He feels like there’s still a ways to go to build his strength back up, but has been steadily gaining weight. His biggest complaint is pain in his abdomen and in his left leg where they operated in June. The bleed compressed many of the nerves in his leg, damaging them and making his leg apt to swell and ache, especially after activity. The palliative care team continues to be a great resource for pain management, and we meet with them regularly to talk through the best ways forward in all this uncertainty.

We’re admittedly in a strange place now, ecstatic to see Nate doing so well but also unsure of what it means or how long it might last. We’re still not ready to make plans very far in advance or to stray too far from home. Nate’s able to drive again and back to doing some light housework. He was feeling well enough to get bored at home, so he has even been working in the Department of Surgery research lab again a couple hours a week.

“Normalcy” is a beautiful thing. We are so grateful for this taste of it and for all those who’ve helped make it happen. Nate’s third transplant was almost a year ago now. For us, September is a celebratory milestone, but we know that for another family, it marks a year without their loved one. We’re going to do everything we can to make the most of Nate’s time here in honor of that donor’s amazing gift. This liver obviously isn’t done yet and neither are we.

A Very Special Birthday!

What a great couple of weeks.

Nate’s 30th birthday was everything we could have asked for and more. We saw family and friends from across the country and heard from even more of you. We spent a beautiful day at the park eating good food, catching up, and just enjoying the fact that Nate felt well.

Nate’s sister-in-law Joy made one of the coolest birthday cakes ever!

We got to introduce the family of Cori (Nate’s second donor) to lots of the other special people in our lives, making for some meaningful moments. Looking out at the friends, the family, the doctors and nurses, and even some folks we were meeting for the first time, we couldn’t feel anything but loved.

We had a great crowd at James Madison Park! The party started with a big thunderstorm, but it didn’t last long and it ushered in a beautiful afternoon on the lake.

Since then, we’ve continued to throw ourselves into celebrating summertime and relatively good health with more dinners out, a trip to Eau Claire for an event with some more of Cori’s family, and evenings on our patio just soaking in the beauty of dusk on a nice summer Wisconsin evening.

At Half Moon Lake near Eau Claire

Nate’s second donor Cori would’ve turned 18 this July. It’s been so special getting to know her through the memories her loved ones have shared with us and to get to know her heart recipient, Rich, and his family, too.

Nate continues to feel much, much better than anyone expected. It’s been six weeks now since his hepatic artery clotted off completely. But his liver function tests are still normal and he’s managed to avoid any infections. He’s still very tired and sore, especially in that left leg, but he’s been working hard to push himself to be more independent. He’s going up and down the stairs a lot more, using his wheelchair a lot less, and even went to the gym for the first time in over a year for some dedicated strength training.

At the gym for the first time a long, long time!

It’s still not clear what this means or how long this might last. But the fact is that even with the hepatic artery down, Nate hasn’t been getting sick or seeing abnormal liver labs. His liver is obviously getting blood supply from somewhere but, so far, the surgeons haven’t been able to nail down where. He’ll go in for another MRI to check on things in a couple of weeks, so we’re hoping to learn more then.

Otherwise, Nate goes in to the clinic one or two times each week to get his labs drawn and continues to care for his remaining drain (the one in his liver) at home. He still has his PICC line (the IV port in his arm), but that will likely come out soon if he still doesn’t need antibiotics.

Celebrating his 30th birthday with friends from childhood (Alec and Matt) and college (Daniel).

We’ve got a busy August coming up, with plans to see more friends, go to a Cubs game, host family for a visit, and enjoy some Madison summer traditions. We continue to be thankful for every moment that’s happy, healthy, and hospital-free.

Home Early!

For the first time we can remember, Nate was hospitalized for LESS time than we’d originally planned!

He went to interventional radiology on Friday to follow up on last week’s CT, which showed two fluid collections in the left side of his abdomen where the large clot had been a few weeks ago. The concern was that the fluid could be an infected abscess, so they planned to place a drain or two to drain the fluid.

You know you've been in the hospital too long when Nate and his primary nurse start matching outfits! Everyone was all smiles while walking out because we were going home so much earlier than we’d expected!

But the fluid collections ended up being too small to drain, so they just used a syringe to get out as much fluid as they could. The fluid appeared to just be old, sterile blood. But they’ll do cultures and if any bacteria grows out, consider putting Nate back on antibiotics or putting a drain in.

They also switched out the tube in Nate’s other drain, the one in the right side of his liver. That one will stay on for a while still as we continue waiting for the bile duct there to stop leaking.

But because they didn’t put in any new drains and Nate hasn’t had any more fevers or symptoms, we got to come home after just one night! We still got to enjoy at least part of our weekend doing some projects around the house. Now, we’re back on the schedule of twice-weekly lab draws along with a clinic appointment of some sort every week or so.

We're looking forward to seeing so many friends and family this weekend for Nate's 30th!

A Few Great Weeks, A Few Bumps

It’s been about three weeks since Nate discharged from the hospital and things have been going pretty well but, as seems to often be the case, we’ve had a few bumps in the road.

A successful clinic visit with staples and drains removed!

He’s been back to the clinic a few times each week to check in. The two surgical drains on his left side that were placed during the most recent operations were removed last week and so were the 30 staples in his most recent incision.

However, he’s heading back in tomorrow to get one, possibly two, new drain(s) in his left side. Some low-grade fevers earlier this week prompted a CT scan, and there are two small fluid collections there that need to be drained to prevent them from getting infected and causing larger issues. He’ll be admitted for at least a couple of days for IV antibiotics as we wait to see if the fluid had any bacteria growing in it. If bacteria is growing in the fluid, we would be back to doing IV antibiotics at home. Our hope is that this admission is short and that Nate will be back home by early next week!

It’s disheartening to get drains put back in so soon after getting others removed. Still, we’re relieved to be dealing with an issue that has such a straightforward resolution. He’s still got the right-side drain in his liver draining the biloma they found there a few months ago. While he’s in the hospital, they’re going to check on that one too and see if it needs to be moved or upsized (or if it can be removed🤞).

Nate’s biggest complaints over the last few weeks have been pain, fatigue, and lack of appetite/nausea. The pain is in his new incision and in his back, mostly in his left psoas muscle that was injured in all the bleeding. The appetite-related symptoms are likely related to the pain and the medications he has to take for it, so we’re hoping that the issues both subside before too long.

Nate’s cooking has moved from the kitchen to his new smoker!

And each week things do seem to be improving, at least a little bit. Nate’s a little more mobile and eating a bit more every few days. He’s used a wheelchair when we go somewhere that involves walking or standing for more than a few minutes, but can get around the house without too much assistance. He’s even getting a little more independent getting up and down the stairs. We’ve got our fingers crossed that any new drains he gets tomorrow aren’t painful enough to stop that momentum.

At the town festival to watch our godson ride a few rides after a great birthday party! Crazy to think Nate was discharged from the hospital just 10 hours before this picture was taken!

As for Nate’s liver, things are stable. His hepatic artery has been completely clotted off since the major bleed last month. But somehow his liver seems to be getting the blood supply it needs, at least for now. His labs have been more-or-less normal since his discharge. The fevers earlier this week had us all pretty worried that the limited blood supply had triggered liver cells to start dying off and causing bilomas (infected fluid collections within the liver itself). We were especially concerned when a CT scan showed abnormalities on the left side of Nate’s liver that seemed to indicate that’s just what was happening. However, further investigation showed that the spot is the same one that’s been there for months and nothing in the liver tissue there seems to have notably worsened since earlier this summer. That was a pretty big scare for us, but this whole journey has been a wild ride of sky-high highs and basement-level lows.

We continue to be hopeful that Nate and his liver will defy predictions and be all right without a functioning hepatic artery. So far, things are certainly going better than expected, and we are so grateful! However, we’re also trying to be realistic and acknowledge that it’ll take months to give us a better idea of Nate’s prognosis. We’re getting his affairs in order and talking about his end-of-life wishes and goals. We met with a local hospice for an information session and they were incredibly helpful and kind. We talked about Nate’s hopes to be able to do home hospice if we need their services. We obviously hope that won’t be necessary for a long time. But should things change, we feel like we’ll be as prepared as we can be and in good hands.

In the meantime however, we’re living up these extra innings and focusing on all the good things in life! The transplant team was incredible and got us discharged in time to go to our godson’s birthday last month. Nate was so happy to be able to be there (and we think our godson was happy too), and we arrived just in time to celebrate with him. We also got to be there for his somewhat impromptu baptism!

We’ve also had visits from some great friends, and we had an awesome Fourth of July weekend with our friends who came in from Boston. Now we are looking forward to Nate’s birthday party next week! (If you’re going to be around town, let us know and we can send you details!) Nate has had to miss out on a lot over the last couple of years, so we’re doing what we can now to make up for some of it. We feel pretty darn lucky, all things considered, to be in a position to do that. We are still completely blown away by the success of our GoFundMe. We’re benefiting so much from the generosity and compassion of our support system, you folks included. Thank you once again for all that you’ve done to lift us up.

It’s been so great to have so many dear friends visiting! We can’t wait to see even more of you next week at the birthday party!

We hadn’t been to Madison’s wonderful Farmers’ Market in over a year, so it was great to get to spend a Saturday morning out with friends enjoying this great city!

Out for a night at the Memorial Union Terrace!

Wish us luck with the new drain(s)! We hope to have positive updates for you soon.

A Successful Surgery & Artery Update

Wednesday’s procedure to remove the hematoma went well, but it took another day before Nate’s pain was really under control. During the operation, they cleared out a football-sized clot of blood leftover from the bleed last week. It was clear that without all that clot pushing against his bladder, kidneys, bowels, and spleen, Nate would feel better… but that didn’t happen right away.

The CT scan showing the 11x8 cm blood clot on the left side of Nate's abdomen (on imaging left and right are flipped so it's the right side of the picture above). You can also see all of Nate's other organs being bumped out of the way with his left kidney forced up and his bowels and bladder pushed to the right.

The palliative care team spent most of Wednesday afternoon and evening in Nate’s room helping his care team figure out the right dose of IV pain medications (spoiler alert: It was A LOT). It wasn’t until Thursday morning that Nate was able to get down to a five on the pain scale for more than a minute or two. But by today (Friday), he was much more comfortable. He’s off IV pain medications and actually walked up and down stairs with physical therapy this afternoon. Nate’s new incision goes along his the left side of his abdomen from his upper thigh to just below his rib cage, making his mobility much more limited than it was when we got here. He’ll likely use a wheelchair or walker to get around outside the house for a little while.

Nate’s first walk after this week's surgery was a big success considering how much pain he was in.

Nate made it up 24 steps today! More than anyone expected.

Now that the immediate concerns of last week have settled down, we also have some updates to share about Nate’s liver. Unfortunately, the most recent CT scans show that his hepatic artery is now completely clotted off. If you remember from previous posts, the hepatic artery splits into the right hepatic artery (RHA) and left hepatic artery (LHA) as it enters the liver. Before the bleed, the RHA was mostly closed off and the LHA was narrowed but still open. Now, they’re both closed off. This is what the interventional radiologists have been trying desperately to prevent, but the team assumed would happen eventually. Still, we had hoped we had a year or two before it become a real issue.

A quick and dirty anatomy lesson: The liver gets most of its blood supply from the portal vein, not the hepatic artery. But the hepatic artery supplies blood to the bile ducts within the liver. As the liver does its job filtering nutrients and toxins out of the blood, it secretes bile. The liver’s bile ducts carry that bile into the small intestine, where it helps break down food and then exits the body with other waste. When the bile ducts don’t work, bile doesn’t get filtered out of the liver properly and builds up. That causes infections, which negatively affect the actual function of the liver eventually causing the to fail.

Now that Nate’s hepatic artery is down, that progression to liver failure is what we’re worried about. Nate was originally transplanted for PSC, a bile duct disease, so poor blood supply to those ducts is not what anyone wants. We’d mentioned that all the trauma last week had Nate’s labs looking pretty wonky. But we’ve had some hope because over the last week, Nate’s labs have been trending in the right direction. To our surprise, Nate’s liver labs ALL normalized today. And by that we mean that his labs are actually normal. Like, his liver function tests are those of a healthy person. So …we don’t really know what that means.

When you run into the liver transplant team while out on your walk with PT, you can just conduct the day’s rounds right there in the hallway.

We’d also mentioned before that the way around Nate’s poor prognosis would be that his liver somehow figured out a way to work without a hepatic artery, which does occasionally happen. The human body is an amazing thing, and it can form new vessels to bypass ones that no longer work or just adapt to a decreased blood supply. This week the doctors saw some “wisps” of blood flow in some of the arteries up in Nate’s liver. So we know there’s blood getting there, but we don’t know if it’s going to be enough to keep the liver healthy.

It’ll take weeks to months of watching scans and lab values before we really have a sense how things are going to play out. But we’re not going to wait until then to make the most of every moment Nate has. We’re making plans to celebrate his 30th birthday party next month, FaceTiming with friends, planting our garden. And we are still filling up with gratitude each time we’re reminded of everyone’s generosity to Nate’s Extra Innings GoFundMe.

For now, Nate’s got normal labs, no active bleeding or infections, and his pain under control. As long as that continues to be the case, we’re planning to discharge to home this weekend just in time to attend our godson’s 2nd birthday party.

Heading back to the OR

Nate’s in less pain than yesterday, but that’s not necessarily saying much. The CT angiogram this morning might have pinpointed why.

Here’s the headline: There’s still a big ol’ hematoma all along Nate’s left side. He’s no longer bleeding, but there’s still a collection of blood in there. The surgeon pointed to a huge blob on the scan and just said “THAT is probably why you’re in so much pain.” It’s roughly 11x8 centimeters and it’s pushing on his bladder, his left kidney, and his spleen.

That blood needs to come out. It’s a big infection risk and as long as it’s there, Nate’s going to be in pain. To get it out, they have to take him back to the operating room to reopen and extend his groin incision up into his abdomen. While they’re in there, they’ll also evacuate a pocket of air near Nate’s bladder, which has also been causing a ton of pain. Sometimes, air pockets can signal infection, but they don’t think that’s the case here. It was likely just caused by the surgeries last week.

This operation isn’t urgent because nothing is infected yet and there’s not active bleeding. But he’ll go first thing in the morning to get it done and over with. Hopefully, it relieves a lot of Nate’s discomfort and we have more updates for you soon.

Gratitude

Nate is back up on the transplant floor and had a good weekend. But before we get much further into that, we have something very important to say:

THANK YOU!

At the bottom of our last blog post, we posted a link to the GoFundMe our friends finally convinced us to create to help fund Nate’s “Extra Innings.” Since then, we have been utterly overwhelmed by your kindness and humbled by your generosity. We checked back in on the fundraiser Saturday, and it brought tears to our eyes. Not only did you help us meet our goal in a matter of hours, but you doubled it within two days and it’s still growing.

When we started this journey (and this blog), we never expected to face the mountain of complications that we have. It’s certainly not the path we would have chosen, but we could not have made it nearly as far without all of the love and support we’ve received from so many of you even before our fundraiser. (Thank you to those who have sent checks, gift cards, movie tickets, and care packages! We couldn't always thank you individually, but know your generosity is appreciated!)

We continue to hope that Nate’s prognosis somehow is longer than we’ve been told to expect. But if that’s not the case, we truly can’t explain just how grateful we are for your help in making his time left something special.

Nate, our friend Mike, and Ann before Mike left for the airport. So glad he could visit!

On Friday afternoon, Nate made it out of bed for the first time since last Monday. He described it as being “less bad” than he thought it'd be, but still bad. Everyone was relieved to see him able to put a little weight on his left leg (where they operated) and move around. That evening, we left the ICU and made our way up to the transplant floor!

It was a long week for everyone. Nate’s sister, Carrie, squeezed in a quick nap in the ICU.

Over the weekend, his team was watching a few things: a low-grade fever that’s come and gone, a rash on his left flank and back, some tachycardia (increased heart rate), and his labs. Thankfully, none of these issues have been particularly dramatic. The fever didn’t last, the rash hasn’t worsened, and the increased heart rate seems mostly related to pain. His liver labs have still been pretty inconclusive. (For the more medically inclined: His liver enzymes have been coming steadily down since the trauma of last week, but his bilirubin is slightly elevated.)

World’s colliding. Nate’s best friend from medical school, Mike, meeting Nate’s best friend from residency, Laura. (Plus, a nurse’s hand holding pressure after removing Nate’s central line.)

Nate’s biggest complaint is still pain. As his femoral artery bled last Monday night, all that blood rushed up the back of his abdomen, pushing aside his bowels, moving his left kidney way out of position, and rushing all the way up to his spleen. His psoas muscle, the “tenderloin” muscle, seems to have gotten the worst of it. One surgeon described it as the whole muscle having road rash. They stopped the ketamine drip on Saturday afternoon, and that’s not been easy. Especially with movement, the pain is severe.

Thankfully, we had great help keeping Nate distracted from the discomfort. One of our best friends and best man in our wedding was here for the weekend. (For close followers of the blog, it was for Mike’s wedding that Nate had to make a long-distance best man toast when his artery clotted in April.) Mike and Nate got to spend the weekend reminiscing, catching up, and telling stories. It was so great to have him here.

We made it outside to enjoy a few hours of the beautiful weather on Saturday.

Mike is an anesthesia resident in California. He couldn’t truly take a vacation this weekend though because he was called into duty to help keep Nate’s multiple IV lines in order.

Tuesday will mark a week since Nate’s last scan, so they’ll do a CT angiogram to evaluate where things stand now: Are there remaining pockets of blood or other fluid that need to be drained? Are there bilomas forming in the liver? What does blood flow to the liver look like now?

In the meantime, all the various teams will continue their monitoring. Infectious disease managing antibiotics, vascular surgery managing his most recent wound, hematology weighing in on his blood thinner medications, palliative care facilitating communication and managing pain, and transplant surgery overseeing it all.

—-

Again, we are so thankful for the wonderful friends, family, acquaintances, and strangers whose kind donations to our fundraiser over the weekend simply blew us away.

Nate walking with his nurse, Erika, up on the transplant floor.

And finally: a really cute dog picture to brighten your day. One of the hardest things about being in the hospital for Nate is being away from our dog, Mac. Not sure how good the window tasted, but Mac seemed to really like it.

Stable

Thursday was a slow, stable day. They continued to monitor Nate closely, watching for any more bleeding and clotting in places they don’t want it to be. After all six teams involved in Nate’s care rounded, he spent most of the afternoon sleeping. He got to eat a few bites of bagel and barbecue.

We spent the evening watching basketball and YouTube videos with the family before bed.

Today’s goals include getting up in a chair, a family meeting with the palliative care team, and visiting with friends.

The other thing we wanted to share this afternoon was a link to Nate’s Extra Innings GoFundMe. Our wonderful friends have finally convinced us to open up this opportunity to help. We are so humbled and grateful.

A sudden bleed

Over the last 48 hours, Nate has been to the ER, had three surgeries, and is now in the ICU. Nate was in critical condition for a lot of Tuesday, but is now stable and awake.

On Monday evening, the groin pain from the site of Friday’s procedure started worsening at home right after dinner. By 8, he was miserable. After talking with some docs, we'd decided that pain control was a good enough reason to go in to the ER. Nate could hardly walk by that point, and said the pain was worse than anything he'd had last fall (including when his colon perforated).

In the ER, the pain began climbing up into his abdomen and they ordered a CT. While he was in there, his blood pressure started to tank and heart rate shot up. They could see he was bleeding internally from the groin site, and the blood was tracking up the back of his abdomen all the way to his kidneys. They worked to stabilize him in the ER, giving him a lot of blood, and he was taken to the operating room at 2 am.

Preparing to go to the operating room from the ER: Nate's co-intern holds pressure on his bleeding femoral artery while he scrolls through his own CT images to see how far the blood had spread.

They called in the vascular surgeons, who did an “open repair” on his femoral artery. They made an incision on his groin to fix the artery and his left flank to evacuate the blood collecting there. The surgeon said the cavity the blood created as it swelled up his back was “huge.” He said he’d never seen so much blood and so little clotting. As the blood started pushing things around, it tore other vessels and those also started bleeding. They quickly and easily repaired the femoral artery, but they couldn’t get the other vessels to stop bleeding. The surgeon said Nate just wasn’t clotting at all. They packed the cavity to apply pressure to stop the bleeding and left him open and intubated (with a breathing tube). Their plan was to go back to the OR to change out the packing later on.

After the operation, Nate continued to have a rough morning in the ICU. Soon after he got back from the OR, he started bleeding again and he bled so much that he started going into hemorrhagic shock. And as they began rapidly giving him blood, he went into anaphylaxis from some sort of transfusion reaction (allergic reaction to the blood he was getting). Thankfully, they were able to treat the reaction and replace the blood loss relatively quickly.

He continued to “ooze” but hasn't had any more acute bleeding episodes. He went back to the OR for the second time yesterday afternoon to replace the packing in his abdomen to continue applying pressure. He needed three more units of blood overnight to keep his blood pressure up, but stayed stable. They took him to the OR for the third time on Wednesday morning about 9 am. During this third operation, they determined he was “dry” and bleeding had more-or-less stopped. They were able to close his incisions back up and left in a drain.

We don't know yet what this means for his liver. His labs are all over the place, good and bad. But doctors said that labs they're getting right now aren’t super helpful anyway because the last 48 hours have involved a massive bleed, receiving 38 units of blood products, multiple operations, episodes of extremely low blood pressure, a transfusion reaction, and a whole lot of drugs. So Nate’s whole body is just stressed, and it'll take a few days to figure out what's what.

A little after noon on Wednesday, they extubated him (took out his breathing tube). The usual opioids weren’t enough to control his pain, so they started a ketamine infusion late this afternoon. It makes him a little loopy (he told us earlier that “I can hear the Soviets”), but he was finally comfortable and able to chat by Wednesday evening.

It has been a wild ride, with a little pain Monday night turning into an extremely serious complication. For now, we feel lucky that -once again- Nate somehow pulled through. We can fill in some of the details over the next few days, but first we’re hoping for some good rest.

What We Know Now

Nate’s imaging last week showed a clot starting to form along the dissection (tear) in his hepatic artery, near where the artery splits into the right hepatic artery (RHA) and left hepatic artery (LHA). His labs have been perfect, and he feels fine. But on Friday morning, interventional radiology performed a preemptive angiogram with the goal of opening things all the way back up and hopefully avoid the entire artery going down again.

Unfortunately, the procedure was basically a bust. The dissection has created a kind of false channel, and blood is flowing there rather than going through the “true lumen” into the arteries that supply blood to the liver. The RHA is completely clotted now, and there’s limited blood supply into that part of the liver. The left hepatic artery is narrowed, but still open.

The surgeons actually think that things might’ve been this way for a few weeks, and that the left side of Nate’s liver has found a way to keep the right side alive. In that way, nothing has really changed except that we now know that one safety valve – the right hepatic artery – is down.

We spent a couple of nights this weekend back with our friends on B4/6.

They tried all sorts of things to get through the clots in the RHA, but none of it worked. They also discussed doing something to open the LHA wider, but couldn’t justify taking that risk when his liver labs have all stayed normal, meaning that the clot hasn’t affected his liver function at this point. They’ve added aspirin to his regimen as another anticoagulation (blood thinning) tool to try to prevent things from getting worse.

A few hours after the procedure, we were at home visiting with family when Nate felt a “pop” in his groin at the angiogram puncture site and his leg started to swell up. He had a hematoma, where a tear in the blood vessel leaks and blood collects under the skin. We headed into the ER. It took a couple of days in the hospital and several hours of wearing an extremely painful compression device on his groin, but the swelling is reduced and the tear is healed. Sore and tired, Nate got to come home Sunday evening.

Nate and his mom gardening... we’ve now got lots of beautiful flowers and delicious vegetables growing!

Between all the scans and the procedure and the hematoma, Nate spent almost every day last week at the hospital. Being a patient really is a full-time job. Even so, the last few weeks have held many bright spots for us. Nate and his mom have been working in the garden, we had an awesome Memorial Day weekend with family and friends, we’ve grilled out with neighbors, and we’ve just been sitting on the patio enjoying the nice weather that’s finally arrived.

With friends and our godson in Chicago over the holiday weekend

Eating out with friends back in Iowa

Celebrating Ann’s brother Grant’s high school graduation

Plus, Nate has been off his at-home antibiotics for about two weeks! At his last infectious disease appointment, we learned that the biloma in his liver is basically gone, surprising everyone. The ID doctor said it was about the fastest she’d ever seen one heal. With the infected fluid pocket gone and perfect labs, there weren’t really any good reasons for Nate to stay on antibiotics. She said that “your body is trying hard to heal itself!”

“I can’t promise how long this will last,” she told us. “But for now, I think you deserve a break.” It’s been so nice for Nate not to have to spend his mornings hooked up to an IV pole and we’ll enjoy it for as long as we can. There’s still a small leak in one of Nate’s bile ducts, so he still has a drain. But thankfully, it doesn’t bother him too much.

Because Nate didn’t have any infusions to do, we got to go out for breakfast for the first time in ages with our dear friend Maddy.

Perhaps the biggest change after the angiogram is that Nate’s not going to do weekly ultrasounds anymore. Honestly, they don’t do anything but stress everybody out. We already know Nate’s artery is clotting, so the images don’t give us any new information. And even if an ultrasound shows the clot getting worse, there’s no reason to intervene until his liver function tests are affected. So we’re just going to use his weekly labs to gauge how things are going. If/when those begin to worsen, we’ll figure out next steps. Thankfully, Nate’s liver function has yet to be affected by any of the clotting events. This new liver is a fighter!

Continuing to develop his culinary skills... Nate smoked ribs for a little cookout with neighbors.

At this point, the miracle we’re hoping for and Nate’s best chance at survival is actually that his liver just ends up not needing the hepatic artery. His body could develop what’s called “collateral flow,” meaning that as some vessels fail, the body forms new ones in different places to bring blood from in somewhere else. His liver could also “learn” to adapt to the limited blood supply, figuring out a way to function without the blood from the hepatic artery. These aren’t particularly common scenarios, especially when a body has already been through as much as Nate’s has, but they’re not *impossible* either.

Since our last post, we’ve received so many messages of support. Thank you to everyone who continues to hold us in your heart. We’ll continue to milk these extra innings for all they’ve got, and are grateful to be surrounded by so much love as we do.

In Extra Innings

“Hope comes in many different forms. For some, it’s simple. Hoping that their cough goes away or isn’t the harbinger of something more serious. Hoping that their pain is relieved. Or just hoping that their physician will be compassionate and understanding. For other patients, their hopes loom much larger. It’s hoping for a cure. It’s hoping for more time with family and friends. Or for me, hoping that transplant would offer my wife and I a chance at a more ‘normal,’ healthy life.”

-Nate during his 2017 Medical School Commencement Address

We’re at a point in Nate’s journey where we’re having to adjust our hopes and our goals quite a bit. Transplant was supposed to give us the lives we were hoping for: a chance for Nate to be healthy and for us to move on to the future together we had been dreaming about. You all have been with us on this ride since the beginning, so we wanted you to hear about this most recent development from us. The takeaway is that, although he’s doing okay right now, the time Nate has left isn’t likely to be nearly as long as we’d originally been hoping for.

There are few better ways to spend a beautiful spring day than at a baseball game with good friends, like we got to do a few weeks ago with Lia & Jeremy.

The Prognosis

All along, the most important thing for Nate has been keeping his hepatic artery open to supply blood to his liver. That’s why it’s been such a dire situation when that artery has clotted and been injured. So far, each time it has clotted, we have gotten lucky and the interventional radiology doctors at UW have been able to get it open. Unfortunately, the surgeons are all but certain that the artery will clot again. Right now, the stent in the artery is working and so is his anticoagulation, but he’s in a very, very precarious position. It would only take a small upset (a virus that dehydrates him or some small kink that occurs in the inflexible stent) for something to go wrong and another clot to form.

In that scenario, they’ll keep doing what they’ve been doing to get the artery open. But each time the liver loses blood flow, it’s likely to cause more bilomas (infections). That means more drains, more infection risk. And at some point, they likely won’t be able to get the artery open again and his liver will fail. At best, the surgeons think the artery can last another year, maybe two.

Depending on how things are at that point, retransplant *might* be on the table. But it would be an extremely high risk surgery. The likelihood Nate would make it through the operation itself would be perhaps 50/50, and the risk of serious complications afterward would be high. If (and it’s a big “if”) the surgeons were able to offer us another transplant, we’d have to think seriously about whether to take it or to go home and settle into hospice. No one is making any decisions yet, but we’re all aware that the questions are out there.

Heading Into Extra Innings

Since discussing all this with Dr. Mezrich, we’ve been talking a lot about making the most of the time Nate has, especially while he’s feeling at least ok. We’ve started calling this time his “extra innings,” the part of the game when each play seems to matter more, when the players really buckle down, and when the fans cheer even harder. We want to be involved in family milestones, friends’ celebrations, and the daily moments of joy that Nate has worked so hard to be able to see. The surgeons agree that if we hadn’t done his first transplant a little over two years ago, Nate would almost certainly already be dead. So even though these years have been hard, we’re infinitely grateful for the good times they’ve brought as well.

Nate nearly always enjoys cooking, but it’s even better when his favorite assistant (our godson) is there to help.

Hitting up a Wisconsin Bucket List item: Ishnala Supper Club in the Dells

We are really hoping for another couple good years and several extra innings. Realistically, even that time is likely to involve being in and out of the hospital. And eventually, Nate may get very, very sick again.

This news obviously has a huge effect on our future, and we’re still working through all of the implications. This isn’t to say it’s *impossible* for the artery to stay open long-term. The doctors didn’t want to take away our hope for a good outcome. But Nate’s team wants us to be prepared for the most likely scenario, which is that artery will continue to cause problems. We’re also working closely with the palliative care team again and relying on their expertise to guide us through this journey.

We are so sad to have to deliver this news. It’s not what anybody wanted. We can’t travel very far, and Nate’s stamina is limited. But we are going to do all we can in the time we have to create happy memories with the people we love... Playing with our godson on the playground, watching movies with family, cooking, cheering on the Cubs, and seeing as many friends as we can.

We got to be in Iowa for Nate’s favorite brothers-in-law’s graduations recently: Zach graduated college and Grant graduated high school.

Smiles!

We’re working with family to figure out more plans and talking about what help we‘re likely to need. When we have that information, we’ll certainly share it with you. We have so much love for all those who’ve supported us throughout this journey. We are thankful for the good moments we still have ahead with you and for everything you’ve already given us, including all the times that many of you have served as our beacons of hope.

Thinking back to Nate’s speech again, he said, “...when the options for treatment run out, hope need not. Our hopes can change. From hoping for cures and treatment to hoping for more comfort, an end of suffering, or a chance to return home.”

No matter how this journey ends, we will always be thankful for the three donors that have given Nate this extra time and the incredible team of doctors and nurses at UW who have gotten us through so many challenges. We will continue to hope there is still more time ahead.

We had an amazing time at the Doug Miller Transplant Symposium a couple weeks ago, spending time with the family of Cori (Nate’s second donor) and her heart recipient as well. Cori’s family now does a lot of work to promote organ donation and tell Cori’s story, hopefully encouraging other young people to decide to be donors and other families to honor those wishes.

Hospital >> Home >> Emergency Room >> Hospital >> Home

As of Tuesday evening, we were home, but not for long enough to post a blog post.

Mac was very happy to have Nate home on Tuesday night.

Ann has been using the term “emotional whiplash” to describe the last two weeks. The day before Nate was admitted, we were settling in to normal-ish life and making normal-ish plans for the spring and summer. Four days later, grim-faced surgeons were telling us that Nate’s liver had lost blood supply and that they didn’t know how much longer he’d live. We were talking hospice vs. last-ditch procedures. The day after that, everyone was stunned when the scan revealed a more-or-less fully functional liver with good blood supply.

Now, after several more days in the hospital, 24 hours at home, another short admission, and a couple trips to interventional radiology, we’ve learned more about where we’ve landed and what might come next.

Nate’s hepatic artery is open, but the primary issue is again the biloma in one part of his liver (segment 6, to be exact). Monday, Nate went back to interventional radiology so that they could upsize the drain in the biloma, switching out the existing tube for a larger one to drain more.

Then the Infectious Disease team spent a long time with us helping us understand where things stand and how we got here. They walked us through it like this:

Nate’s bile is infected, and has been. We’ve known that. That’s not really a problem when the bile ducts all work properly and the bile just drains into his bowels like normal.

There’s a small area of Nate’s liver that’s necrotic, or dead. It got injured (likely from lack of blood flow) and so there’s a bunch of dying liver tissue just sitting there not working.

There’s a leaky bile duct in the area of the liver that’s dying. It’s spilling infected bile into the dead tissue, and there’s nowhere for that bile to drain out. That’s the biloma. So the drain is keeping that infected bile from accumulating.

Bilomas “heal” when the affected part of the liver just scars up and dies completely.

Infectious disease told us that this biloma “isn’t deadly, but it is a huge bummer.” It’s going to take a very, very long time to heal. It should heal, but Nate will be on antibiotics for months to years, and likely have a drain the whole time he’s on antibiotics. As long as his artery stays open and blood flow to the liver is stable, the team thinks the biloma should eventually heal.

It wasn’t good news, but it gave us a picture of what we might be able to expect. It was a huge relief to hear that they don’t think the infection is going to kill Nate, but the prospect of months and months more of antibiotic therapy and a drain are a big adjustment from where we were before he was admitted.

After getting all that information, we went home Tuesday evening and started trying to settle back back in. But on Wednesday evening, the area around Nate’s new drain started bleeding. Not too much at first, just “oozy.” We changed bandages, applied pressure, and set a makeshift sandbag on his side. But it wouldn’t stop and at 2 am, he woke up in a pool of blood with an elevated heart rate and shortness of breath. We headed to the ER. He (and our house, and the ER stretcher) was a bloody mess. It looked like the blood was coming from around the drain which was worrisome, but thankfully it turned out to be just the skin around the site that was pumping out blood. (“How does a little flesh wound bleed so much” you ask? The stitch hits a small arterial vessel and the patient is on blood thinners, that’s how. We included the video below for the curious, but *trigger warning*, it’s not really for the easily queasy.)

In the ED getting stitched up.

They put in a new stitch, which slowed the bleeding, but after a couple hours there was more blood pooling so they had to add a second stitch and apply some medical adhesives. He bled enough to drop his hematocrit by 6 so they had to give him two units of blood. We were admitted to the hospital from the emergency room, but after watching things for a day, they sent us back home Friday evening.

One more stitch did the trick.

At home, Nate will do three infusions every morning: two antibiotics (daptomycin and ertapenem) and one antifungal (micafungin). He’ll also have to give himself two shots every day to help with anticoagulation (for preventing blood clots), and he’ll be managing the drain. He’ll do all this plus the usual transplant medications and another anticoagulation medication.

The only option now is forward, so that’s where we’re headed, albeit anxiously. We still can’t totally explain why the hepatic artery clotted. But it’s likely related to the infections in Nate’s liver causing inflammation, which triggers clots to form. But we’ll never know for sure, and that’s nerve-wrecking. The anticoagulation shots Nate has to do are painful, but the medication’s effect can be measured as a part of Nate’s twice-weekly labs. So they’ll be monitoring those numbers closely to make sure the medication is in the range that will prevent future clotting.

Getting his medications ready with the changes the team made while in the hospital.

Thankfully, this drain doesn’t seem like it’s going to be nearly as painful as Nate’s last one. He’s lost several pounds again, so there’ll be a lot of rehab to get back to where he was and to keep pushing beyond that.

It’s a lot. Our emotions as we readied for discharge on Tuesday were... complicated. We are certainly grateful to be where we are, and yet it’s not at all where we wanted to be.

WARNING: IF YOU DON’T LIKE BLOOD, DON’T WATCH THIS VIDEO:

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