(April 8, 9:03 am) --  We’ve had so many inquiries about how cousin Karen is recuperating and we wanted to write a little update. Since being discharged from the hospital Karen has been staying at the Berning family home in Vienna. Her mom, a retired nurse and Nick’s Aunt Nancy (and godmother), has been taking excellent care of her while she regains her strength.

Karen went for a follow-up appointment this past Friday and met the physician’s assistant she will visit with virtually over the next two years. Her liver numbers are improving steadily and the doctors are pleased with her progress. However, she was told that her body has a lot of work ahead of it—regenerating two-thirds of a liver at a rapid pace is a lot of work!—and she’ll need naps daily for at least six to eight weeks. 

I asked her what the worst part of the whole ordeal was and she responded that “nothing was too bad.” Although she admits that she doesn’t remember much of the first six days in the hospital, she did mention she wasn’t fond of the pain-inducing “incentive spirometer” she had to keep breathing into. Or the fact that each time she tried to order a meal she was told she had already called to order her food (she hadn’t) and that they would NOT be changing her request!

While they miss her, Karen’s immediate family back in Milwaukee is getting along just fine. Daisy (her 10-year-old daughter) even said the time is going by much faster than she thought it would. 

Karen has been getting back into the swing of daily life—going for walks, spending time with extended family, playing games, showing off bruises, and even doing some unauthorized chores!

A little too much time sitting upright while extreme puzzling yesterday caused some discomfort today. That said, if you’ve ever considered donating your liver, Karen has one thing to say: “I’m fortunate to have a supportive family and employer that allowed me to put my life on hold so I could contribute a piece of my liver to Nick and experience a medical marvel. If you have the right support structure that works for you, I’d highly recommend considering a donation to save a loved one’s life.”

All of us continue to be in awe of Karen and her bravery, unselfishness, and generosity. Donating not just her liver but also several weeks away from her family, job, and home. She’s given ALL of us the amazing and immeasurable gift of many more (healthy!) years with Nick.

-- Stephanie

(April 4, 4:38 pm) -- Nick's been feeling fine today and continuing to reduce his pain meds. More importantly, last night he got a visit from nieces Hallie and Clover, who answered one of the great medical mysteries of our age: how many staples does Nick have? According to their investigation, fifty-three.

We took all this to mean that Nick was on a glide path to recovery, but, alas, another scan revealed still more bile leaking into his abdomen. Again, the consensus is that while this isn't welcome news, it's just part of the process to be dealt with.

The plan is to do yet another scan (a percutaneous transhepatic cholangiogram, for those of you keeping track at home) to take a look around and likely install another drain. It's not a surgery, they assure us; it's a procedure.  They just carted him away a few minutes ago.

In either case, it should be pretty quick -- not least of all because, as the nurse sent to fetch him made clear, he's the last patient they've got before the team can knock off for the weekend. 

-- Drew

(UPDATE: April 4, 5:42 pm) -- He's back. He didn't even have to go to sleep through the procedure so got to watch it all on the monitor and chat with the doctors, which delighted him. They were able to remove the bile that had collected and expect the leak itself to resolve on its own. Nick says he feels better than when he went in.

(April 3, 12:32 pm) -- Last night before I went home, Nick announced that regardless of his dietary restrictions he was going to have a double espresso in the morning. He was committed to this plan, but as his accomplice, I was reassured when the nurses, and then doctor, signed off. This might the longest Nick has ever gone without caffeine, a record he's not interested in challenging anytime soon.

I did my best to get to the hospital in time for the surgeon's rounds this morning and got approval to show up before visiting hours, but by the time I arrived, coffee in hand, the doctor was long gone. The good news is that all reports are good, the numbers are (almost) all moving in the right direction, and the pain is under control. 

In the most recent official surgery report, the surgeon noted that he had a "long conversation" with the patient's family after the procedure. Nick mentioned this, to which the doctor responded that we did "ask a lot of questions that didn't seem to be related your care." But honestly, if you had access to a world class transplant surgeon, who wouldn't ask about the feasibility of pig livers?

Our friends Haris and Sergio came by last night to play a round of Hearts. Despite a fairly substantial dose of drugs in Nick's veins, he made a credible showing. I got destroyed. (This morning, while discussing schedules, Nick remarked "Wow. The water is really high." He clarified that while he knew we were in the hospital together, he was also sitting on a porch watching waves come in. Sounds lovely.)

We just did five full laps around the floor, during which Nick allowed me to take the attached photograph, which he has cleared for public distribution.

-- Drew

(April 2, 2:42 pm) -- Nick got a good night's sleep last night (as did I, for what it's worth.) A little more abdominal pain, so they've ordered another round of x-rays. We'll see what comes back. All his blood numbers look good.

Nick was also able to take a walk around the floor this morning, during which  he managed to unknowingly pull out his entire NG tube. I wasn't there to witness this, but as someone who was present for its insertion I cannot believe he was able to do this. It went 60 cm through his nose and into his stomach. Anyway, the doctors decided to keep it out, so we'll just write it off as an easy removal.

More intentionally, a PA just removed one of Nick's drains. We happened to have our niece Clover on the phone, who jumped at the opportunity to watch the entire thing, including an extreme close up of the process of stitching up the hole. Book your appointment now; she'll be your healthcare provider in twenty years.

Finally, congrats to Bruce, Linda and Violet who sent a plant that the doctors can't possibly object to.

-- Drew

(March 31, 9:39 am) -- Last night was ... not great. Nick had a lot of pain and didn't get much sleep.

His intestines have -- presumably temporarily -- stopped moving food through his system. The doctors say that's not unusual, but, especially given his giant abdominal incision, it's also really uncomfortable. (On some level, I can't blame them. Check out the attached diagram. If you did that to me I'd stop working, too.) To make matters worse, opioids inhibit the digestive process; so the best tool to treat the symptom also worsens the underlying cause. Obviously, that puts Nick in a tough spot. He also can't have any pain meds processed through the liver kidneys* (like ibuprofen and naproxen), so that leaves opioids or Tylenol. I'm sure I'm oversimplifying, but there aren't a lot of great options. 

Around midnight, they installed an NG line back through his nose to clear out his stomach, which helped, though installation wasn't a lot of fun. Anyway, that means his big step up to solid food is off the table. Nothing by mouth for a while.

Recovery, as I've been reminded, isn't linear.

The enormous bright spot is that the care Nick's getting at Georgetown has been terrific, in particular the nurses, who have been attentive, empathetic and relentlessly competent. I'd lay down in traffic for any one of them.

-- Drew

[* - Apparently it's the kidneys, which are doing all they can to cope with the immunosuppressants.] 

(March 30, 2:02 pm) -- This morning one of Nick's liver numbers starting ticking up, which isn't good news, per se, but the doctor was clear that we shouldn't worry about it. Only today are the doses of immunosuppressants elevated to where they want them so we should expect the numbers to move around a little bit. Organ rejection, I've learned, isn't a binary; the doctors will be adjusting his meds for some time to come. It's just part of the process.

In better news, Nick is being moved onto solid food for dinner. (He had something he suspects was cream of wheat for breakfast, but he describes it as arriving in disc form, so better not to think too hard about that.)

Nick spent the morning reading through the official post surgery report and looking up new vocabulary words. The doctor noted that he felt an "excellent thrill" in Nick's hepatic artery, but it turns out that's the physical feeling of blood moving through a vessel, not an emotional reaction to Nick's specialness. 

The doctor also shared that Karen's biliary ducts, which he sewed onto a section of Nick's intestine, were the size of angel hair pasta (!!) It's pretty amazing.

Nick's still a little wired, but they're bringing down his steroids, so he's starting to get a little more sleep. 

Karen, for her part, was allowed to shower today. Nick wasn't, so we bought him some dry shampoo and are taking advantage of the endless supply of antiseptic wipes.

We were finally allowed to bring Karen flowers. Ironically, we thought they couldn't be delivered to her ward (just across the waiting room) so Nick was holding onto them until the surgeon saw them and promptly banned them from the room, (what with all Nick's immunosuppression and all.) But Karen can, in fact, have flowers, despite the very assertive signage saying otherwise. Anyway, they got to the right place.

-- Drew

(March 28, 3:28 pm) -- I woke up this morning to discover that Nick had (1) sent an email to a national email list serve discussing tactics for the April 5 #HandsOff protests and (2) done ten laps around the floor without assistance. So at least we know the prednisone is working...

This morning the bandages came off for the first time, revealing this gnarly set of staples. It's called the Mercedes-Benz cut, but I don't think that does justice to just how long it is. A+ scar potential.

Nick's already stepping down his pain meds significantly and seems to be doing pretty well. I've received a thick binder of post-transplant guidance, so I've got a little light reading for the afternoon.

Karen is onto semi-solid foods. Nick hasn't moved off clear liquids, but judging by Karen's reviews I don't think there's much rush.

-- Drew

(March 26, 9:26 am) -- This morning at about 7:45 they took Nick off sedation and he woke up soon after. He did a great job with his breathing test and by a little after 9 they were able to remove the breathing tube. Not a fun process, but he did beautifully. Even before the tube was out he was asking questions and making jokes, though his first attempt was ... inscrutable.

All the tests are looking great, and his new liver is already working. Nick's bilirubin has dropped by about about half since the surgery. (If you've noticed he looked a little yellow in recent months, that's why. So this is excellent news.)

He's still hooked up to assorted drips and tubes, but the plan is for him to get up and walk (!!) today.

-- Drew

(March 25) -- We got to Georgetown a little after 5:30 this morning and met up with Karen (our hero) before heading back to get prepped.  Lots of doctors. Lots of paperwork.

Nick headed to the OR about 7:45. Surgery should last about eight hours.

-- Drew

(March 18) -- On Tuesday, March 25 Nick is scheduled to get a liver transplant at Georgetown University Hospital. We'll be posting updates here.

Nick has had a slowly progressing autoimmune liver disease called primary sclerosing cholangitis, or PSC, for more than 20 years. For most of the past two decades he’s been mostly asymptomatic, but now Nick has end-stage liver disease and is feeling the impacts, which are accelerating. A transplant is the only cure.

Most transplants involve deceased donors, but last year 604 liver transplants in the U.S. were from living donors. Thanks to Nick’s amazing, generous cousin Karen, who’s willing to give up part of her liver, he’ll be able to get a new organ without waiting longer and getting sicker before a liver becomes available.

The plan is for Nick to be in surgery most of the day on the 25th. After that he'll be in the ICU for two or three days, and assuming everything goes well, he'll be home after a little more than a week. This is a complex and major surgery, no doubt, but transplant medicine has come a long way in recent decades and Nick’s odds of a full recovery are good.

We’re fortunate to have access to the Georgetown Transplant Institute’s dream team of doctors with extraordinary expertise, including in living-donor liver transplantation in particular. As of this year Georgetown also has a fancy new transplant facility, which you can see in the accompanying video. (Nick’s hepatologist of the past 12 years, Dr. Rohit Satoskar, also shows up in the video—he’s the Institute’s medical director.) 

Once Nick heads into surgery, Nick's sister Steph and I will  coordinate messages for him, and we can also answer questions. If you don't have our contact info, you can reach us here.

Additionally, our friend Hannah has generously offered to coordinate a meal train to make sure we're well fed once we’re out of the hospital. If you'd like to take part, you can here. 

-- Drew