The motorcycle trip was fun as always. We actually made it to our destination in one day, despite budgeting two. This gave us a little more time in Hot Springs, NC along the banks of the French Broad River with a view that never disappoints. I will share some additional details about the trip later, but for now I’ll get to the point.

On Sunday morning, we took down our campsite, which never seems to be nearly as much fun as setting up the campsite. The process was met with the usual grumblings about camping equipment growing larger during our stay, and everything being slightly damp (none of which EVER outweighs the fun of the trip). We hit the road late in the morning Sunday, and I knew right away I was feeling achy. I quickly dismissed this as little more than the usual aches and discomforts that accompany any relatively long motorcycle trip, but by mid-afternoon I began feeling like I might have a fever.

We had decided in advance that we’d be riding just over half-way on Sunday, so we pulled off at Meadows of Dan near Stuart, VA where I almost immediately began checking my temperature which was rising rapidly. When it reached 101, I contacted the transplant team and Curt (my donor’s husband) called an ambulance since it was unrealistic to expect that I’d be riding myself out of this one. The ambulance’s arrival was followed by some negotiations over where I would be taken. Naturally my preference was to go to MCV, my transplant “home” in Richmond. The ambulance team preferred any place close. We finally agreed that I’d be taken to Carilion in Roanoke and Curt would ride with me in the ambulance. Thanks to a combination of numerous medications and temperature of 103.5, I have only sketchy recollections of the ambulance ride and the events in the Carilion emergency room. Thankfully Curt was there to speak on my behalf since I was in no condition to do so. Otherwise I think this whole story may have gone down a very different, far less desirable, path. I do know that in the very early morning hours on Monday, I was loaded into another ambulance and taken to MCV.

My arrival on the Hume Lee Transplant Unit here on the 9th floor brought a quick measure of comfort as I returned to the same unit where I recovered following the transplant, and as I began to see the warm familiar faces of the All Star nursing team that would help get me back on my feet just as they did in February. Monday was full of diagnostic tests in an effort to identify the source of an obvious infection. I fully expected to be leaving on Tuesday, maybe Wednesday at the latest — boy was I wrong.

Since Monday, each day has looked very much the same: fever and body aches throughout the day, each worsening significantly during the night, and very little definitive information about the source of the infection. I do have a sinus infection and that’s causing a part of this, but not all of it. I’m being pumped full of a never-ending stream of IV antibiotics, and the multitude of cultures that have been taken have not grown anything that might point us in a more definitive direction. Each day we do it all over again, and until I’ve been fever-free for 24 hours, there’s no chance of being released. The good news is all of this is that it was clear by Tuesday that this was not rejection. That was a huge relief.

It’s Friday at almost noon now, and there’s some promising news. Although we still don’t have a clearer diagnosis (and we may never have one), I have had a normal temperature since about midnight last night, so I’m catching a glimmer of the light at the end of the tunnel. If this continues and the temperature doesn’t climb up, I might be home this weekend.

This has been a difficult lesson about just how slowly my suppressed immune system is going to bounce back from even the most basic of infections. Live and learn. Fortunately, I get to do both.

When I first put this blog online, I included a picture of myself under the “My Story” section of the blog. It’s a picture of me standing next to my bike on the banks of the French Broad River in Hot Springs, North Carolina. Three great friends and I had just completed several days of camping alongside the river, riding through the twisting back roads of Western North Carolina, and laughing wildly at our misadventures which, invariably, are too numerous to keep track of. This is a trip we make usually twice a year. I didn’t know at the time that the wife of one of those friends would be my donor, and would put my life back on a happy, healthy course. I also didn’t know at the time when I might return to that campsite again, as my condition had worsened to the point that plans for future activities were becoming more and more speculative.

When the date of my surgery started to take shape three months ago, we began working on a “Plan B” which, although it kept the trip intact, relegated me to a car, possibly even just as a passenger. In early February, just a few short weeks before the transplant, I even wondered if the passenger role might be more than I could manage. Despite my concerns, we put the trip on the calendar: June 3rd. It seemed too soon, but we needed to pick a date in order for the four of us to keep our calendars cleared.

So here we are on June 3rd, and as I’m waking up this morning, I’ve got the same nervous energy that I recall having as a child on Christmas morning, because I’m not going as a passenger. I’m not even going in a car. My bike is packed and ready to roll, just as it was last year the morning of that season’s ride to Hot Springs, and it’s 101 days since the transplant.

So, in just a few short hours, the aptly dubbed “Panel of Experts” will begin rolling down the Blue Ridge Parkway. I’ve set up a site for pictures that I’ll be sending via the iPhone, so the quality won’t be spectactular, but it should offer a glimpse into the trip.

While I’m enjoying this milestone in my recovery, I’m deeply mindful of two other friends who, on this same morning, are at earlier stages of their journey. Like me, they each have Primary Sclerosing Cholangitis. They each could use a few extra prayers this week. Let me quickly introduce them to you, and ask that you take one minute out of your day to pray for them, their families, and the team of medical professionals that will help return them to their rich lives.

Kirk Franz: Kirk was transplanted two weeks ago today having received The Call late on the evening of his birthday informing him that a donor was available. He was having a lightning fast recovery and was even discharged to home less than a week after the transplant. Almost immediately after arriving home, he received some troubling news that his pathology had come back suggesting a high possibility of cancer. He was immediately scheduled for a Whipple Procedure, a very challenging procedure that makes the transplant look like a picnic. Kirk is strong as an ox, though, and has fought every step of the way. Just yesterday, he returned to surgery for the third time in two weeks to fix a leak that had occurred during the Whipple Procedure. He’s still got a tough road ahead, but if you follow Kirk’s journey at this link you’ll meet his wife and three beautiful daughters, and you’ll see that his positive attitude and mental/physical strength stack the odds in his favor.

Martha Hunt: Martha and her daughter Ashley Hunt Kirkland will be going into surgery today at the University of Virginia in Charlottesville. Ashley will be Martha’s donor, so if you’re sending up a prayer for Martha and Ashley, please also think of Ed (Martha’s Husband and Ashley’s Dad) and Bryan (Martha’s son and Ashley’s brother) who have the unimaginably difficult task of waiting today. You can follow Martha and Ashley’s progress on their blog site, Virginia is for Livers.

Thanks for thinking of these friends, and if you’ve got time for one more homework assignment (which you do), take one minute to encourage someone you know to consider being an organ donor.

Bon voyage!

Every transplant is a miracle, and every family’s story is extraordinary.

This community that I’m now a part of is bound together, not because we’ve all survived major surgery and experienced some of the world’s most advanced medical care, but because we’ve seen, and directly benefited from, the deepest generosity that human beings have to offer one another. Think about it — all of  these stories begin because someone’s life is in danger. Everyone on a transplant list is facing imminent death, so the stakes don’t get any higher than this. Then, as if that alone didn’t provide a sufficient emotional charge, the donor comes into the picture either in the form of a living donor driven to act by some profound calling, or through the courage of a family willing to give while they are experiencing an unthinkable loss. The term “hero” gets thrown around loosely in our world, but in my mind there are no more certain heroes than donors and their families.

Here’s the story of one such family, as it was originally published in Sports Illustrated in September 2003 in an article entitled “Getting A Second Wind” by Rick Reilly. It’s an incredibly powerful story, and to be honest, it’s not easy to read and it may haunt you as it has me since the first time I read it. As you read it, keep in mind that there are 107,577 people in the U.S. on the transplant waiting list today, each of whom could have equally amazing stories to tell, if only there were enough donors to meet the need.

——————–

“Getting A Second Wind” by Rick Reilly, 2003

After my most recent experience, I called the transplant team in Richmond and they referred me to one of our local cardiologists, Dr. Valentine. In his opinion my a-fib is the result of two things: (1) my body’s response to the trauma of such a significant surgery, and (2) the impact of the Prednisone, which keeps me running at fever pitch. Dr. Valentine has placed me on a low-dose beta blocker (Atenolol) for the next several months while I recover from the surgery, and I’ve been gradually weaned down from 40mg of Prednisone a day to 2.5mg, so its effects should be diminishing rapidly. Both Dr. Fisher (transplant surgeon) and Dr. Valentine (cardiologist) believe that this is a temporary condition that will resolve itself, so after a few months I’ll stop taking the Atenolol and we’ll wait to see if the symptoms recur.

Despite the arrhythmia, I’m feeling great. My energy level has continued to be very high, almost to the point of being a nuisance. While I no longer am plagued by insomnia, I am frequently having trouble going to sleep in the evenings because I’m staying up until the early morning hours just enjoying what it feels like to not be sick, to not itch like I’m on fire, to not be nauseated, and to no longer be visited by the tired yellow ghost who has haunted my mirrors for the past several years.

My incision, the only real indicator that I’ve had surgery, is healing nicely. I have to confess that I have a strange bond with the incision. It has actually become a source of pride as a sort of clinically sanctioned “tattoo” that commemorates some of what I’ve been through. It’s a 60-stitch bite from a staple-toothed shark, not to mention a powerful conversation piece. Having a scar like this reminds me of several years ago when I had a wicked black eye as a result of an entirely self-inflicted encounter with a shower door (don’t ask). Once I got beyond the initial embarrassment of being disfigured, I slowly discovered that having a visible wound had some advantages. I learned that having a black eye suggested that I was a little sketchy, unpredictable, and I might even be inclined towards violence. There’s definitely an added measure of respect that people will grant you when they think you’re willing to take a punch for something, even though in my case nothing could be further from the truth. So, I’ve come to see my scar in the same light. While it’s not always visible like the black eye, I’ll show it off whenever anyone shows the slightest bit of curiosity in seeing it (e.g., see the bottom of this page). The scar is a little too orderly to imply violence in the same way the black eye did, but it does say, “Bring it on. I’ve been through worse.” Anyway, it’s healing rapidly and looks considerably less grisly than it did during its earlier days, although I’ve got some sort of hard knot just below the intersection of the horizontal and the vertical cut. Dr. Fisher speculated that the knot is just a small pocket of fat, but suggested keeping an eye on it to make sure it isn’t a small infection. With a scar like this, evenings at the pool will be interesting this Summer.

I returned to work part-time on March 29, and just returned to full-time work this week. So far, nearly everyone I’ve come into contact with has offered the same advice with respect to my recovery: don’t overdo it. Generally speaking, this is sound advice since there are very real consequences to rushing the recovery and doing more than your body is able. However, I’ve learned that there is a considerable downside to being inactive for any length of time, even just a couple hours. Dr. Fisher seems very comfortable having me follow my own post-surgery philosophy:

• Do as much as possible, but don’t do anything that hurts. Be careful with strenuous lifting.
• If necessary, take a power nap (20-30 minutes) in the early evening, but don’t settle in for a long drooling sleep.
• Do anything that gets your heart rate up. Walking is ideal.
• Drink lots of anything, but avoid sugar, caffeine, carbonation and, of course, alcohol.
• Don’t be too stoic about pain. Take a pain pill when it’s necessary.
• Listen to 80s hair metal music.

Okay, I didn’t tell Dr. Fisher about the last one, but it’s my secret ingredient that makes just about anything better. By the way, I’m not offering any of the above as advice or guidance since I know all surgical recoveries are as different as the individuals experiencing them. I am suggesting that it’s my strong personal opinion that taking it too easy can be detrimental, while remaining active and even pushing yourself can keep you fit and flexible. I also believe that returning to a relatively “normal” routine (if there is such a thing after a transplant) can be a huge morale booster. To be perfectly honest, I feel so much better after my transplant than I have for several years leading up to it that asking me to not overdo it is a little like handing someone the keys to a brand new car and telling them not to drive it.

I also have tapped into a treasure trove of less-traditional recovery steps that are every bit as important as eating well and exercising. For me, these include the following:

• Listen to good music.
• Spend time with friends and/or family every day.
• Make time for quiet meditation and allow yourself to be unencumbered by the concerns of the day.
• Accept the prayers and well wishes of those who have offered their support and kindness. I’ve learned to not take this lightly and to actively acknowledge and accept encouragement and prayers as fuel for each day.
• Find something to laugh at. This comes easily to me.
• Read and write.
• Simplify and de-clutter my home and work environment.
• Spend time outside.
• Do something to make someone else’s day better. Do it before they have to ask. There are bonus points if the “someone” is your wife or children.

Based in part on my diligent efforts to be as active as possible and to follow the rest of my prescription listed above, my energy level has been increasing each week. On Saturday, April 3rd, Alison and I participated in the Point of Honor 5K and Youth Mini Mile, a small local race that raises funds for LifeNet and draws attention to organ donation. This event fell on a date that gave us a great goal to shoot for since April 3rd was exactly 40 days after our surgeries. Originally our goal was to just attend the event, hand out some literature about organ donation, and be there as living examples of a positive transplant outcome. When it became evident that we were both recovering well ahead of schedule, we decided to at least attempt to walk the race. To ensure that we wouldn’t have to be emergency helicoptered out of the woods during the race, we practiced it several times before the actual event and discovered that it was within our physical capacity. The weather was perfect on race morning…okay, can I stop calling it a race? I wasn’t racing anyone or anything, except possibly the debilitating fatigue that was nipping at my heels for the final moments of the walk. So anyway, the weather was perfect on the morning of the walk and it was just one of those days that reminded me how fortunate I am to live in Virginia. The air was cool and clear with blue skies overhead, and it was thrilling to be among a crowd of people willing to get loud about organ donation. I was in a very positive place, and used the energy to propel me to a blistering pace that had me crossing the finish line 291st out of 304 runners. I doubt few people have ever been as satisfied as I was to walk 5K in 56 minutes (40 days after a pit stop to replace some worn out parts) but I was a very happy camper.

I’ve had two follow up visits with the transplant team since the last blog update, and both have gone well. During the first visit I had a Pentamidine Nebulizer treatment, the first of the twelve that I’ll have each month for the following year in order to fight the risk of pneumonia. I also had an MRI in order to get a closer look at the liver and its biliary structure. The MRI results showed that everything is progressing according to plan. During last week’s subsequent visit, my blood work revealed that my bilirubin was normal, and that most of my liver enzymes had dropped substantially since my visit three weeks prior. Because my recovery is going so well, I’ve already been switched from weekly to monthly visits back to the transplant clinic. This may seem minor, but it’s a relatively large milestone to me; it was just a few weeks ago that I was uneasy about not having my blood drawn every day, so to go a month without seeing the surgeon and without having lab work conducted feels like a big step. Fortunately, it’s a step that brings “independence” that much closer to me, so I’m good with it.

Last week we made it home in time for Julia’s birthday party at her school (Note: the “at school” party is the first of about 4 parties that Julia has parlayed her birthday celebration into. She has somehow combined her birthday with Hanukkah to create a month-long celebration). Herley, our nanny, had planned the “at school” celebration and had agreed to braid and bead all the girls’ hair. We also brought tattoos and hair paint for the boys. Little did I know that Julia had been keeping her classmates apprised of my progress before, during and after the surgery, so all eyes were on me when I came into the room. Within seconds, the two first-grade classes had assembled in front of me and were begging to see the incision. It was at this point that I realized that Dr. Fisher probably would not have identified a classroom of 32 first-graders as the ideal place for an immunosuppressed liver transplant patient to visit, but there I was, and as always, I was heavily armed with hand sanitizer and a watchful eye for runny noses. I gave the kids several warning notices, asked if they were SURE that they wanted to see the incision, and finally lifted my shirt. Of the 32 kids, 31 thoroughly enjoyed the sight and described it as either “cool” or “gross” (the highest degree of cool for a first grader), while one appeared to have seen far more than she expected to. Herley wound up doing double duty, since it seems that the boys weren’t satisfied with just tattoos and shocking red hair; nearly all of them wanted beads in their hair, too. Julia had a blast, but I don’t think anyone had a better time than I did, back among the world and ramping up for a new future.

Last Tuesday (March 16, 2010) I had yet another follow up appointment with Dr. Fisher and Michael Akyeampong, my transplant coordinator. As is typical with each of my visits to the transplant clinic, the day began with blood work. On this day my blood was drawn just minutes before my visit with Dr. Fisher, so he didn’t have the benefit of the lab results when we met. He suggested that we not make any adjustments to my medications since my recovery was not just going well, but was far ahead of schedule. Like the prior visit, we focused more on helping me understand the limitations of physical activity that I am allowed to engage in without doing more harm than good. The general direction that Dr. Fisher provided me was that I could do just about anything as long as it didn’t hurt. That sounded quite a bit better than the 10-pound lifting limitation I had been following since the surgery. Michael clipped the remaining staples out, and for the first time I left the hospital with no hardware of any kind attached. In fact, I had also been cleared to drive (at three weeks post transplant!) so I was eager to get behind the wheel and reclaim a bit of my independence.

On the drive back home from Richmond to Lynchburg we somehow missed a call from Michael instructing me to add one pill to my dosage of Prograf, one of the three anti-rejection medications I’ll remain on for the rest of my very long life. Michael’s voicemail didn’t indicate what, specifically, caused them to make this change, but I assumed it was in response to something that had been seen in the lab results from earlier in the day. Naturally my mind jumped to organ rejection as the cause for the change in medications. It seemed obvious to me that, if you’re adjusting the dosage of an ANTI-REJECTION medication, it would only be in response to seeing early signs of rejection, right? (Oh, and NO, I have not made any progress in managing my tendency to over-react to minor changes in my condition…thanks for asking). So, when Michael called 24 hours later, I was relieved to learn that the dosage change had not been prompted by any early sign of rejection, but instead was in response to the fact that the level of Prograf in my bloodstream was below the optimal therapeutic range and needed to be boosted. Michael explained to me that I should expect to see numerous “tweaks” to my medications over the next several months while they learned how my body processed each individual drug.

I should point out here that rejection is not necessarily a crisis. In fact, it’s quite common. Prior to becoming a transplant patient, I had always believed that rejection was an all-or-none proposition. I know now that rejection comes in varying degrees, is typically managed by adjusting medication dosages, but can require hospitalization and is occasionally life-threatening. Dr. Fisher explained to us that we should think in terms of four major milestones during my recovery: (1) immediately after the transplant, (2) three months post-transplant, (3) six months post transplant, and (4) one year post transplant. With each passing stage, the likelihood of rejection drops dramatically. I’m past the first stage and have set my sights on the three-month mark as the next hurdle. There’s reason to be optimistic, since I’ve not had the first hint of rejection so far.

During this first month, my Prednisone dose has been dramatically reduced from 40mg/day to 10mg/day. I’ll be bumped down to 5mg later this week and to 2.5mg a few days after that. I’ll remain at that level indefinitely unless Dr. Fisher determines that I can stop taking the Prednisone altogether. Why am I bothering to share exactly what my Prednisone dose is? Because this seems to be the only medication I’m taking that has caused any undesirable side effects. It’s the most innocent looking pill — a tiny, round white thing, about the size of a baby aspirin. But it’s dull exterior belies the wallop that it delivers. Prednisone is included as part of the treatment for a wide variety of conditions, but it carries some significant baggage in the form of a bonanza of side effects. At the higher doses, it sets all you nerves on edge, and I was advised to “not even bother trying to sleep.” It also sent my appetite into orbit, and I found myself eating anything within arm’s reach.

In fact, here’s a cautionary tale for anyone taking the special combination of Prednisone and Dilaudid, a very strong pain killer that adds “night terrors” to the list of side effects I could expect to experience. It was while I was on this combination of drugs that I had an unfortunate incident involving Nilla Wafers and an 8GB digital camera memory card. I wish I could tell you that I had attempted to install the Nilla Wafers into digital camera, but the truth is actually worse. I had a handful of cookies and was shoveling them into my mouth at a blistering pace, thanks to the Prednisone, while I was transferring some pictures from my camera to the laptop. Somehow the memory card found itself in the stack of cookies, making it just a matter of time before I had nonchalantly tossed it in and given it a chomp. My reaction time was a little slow, so it’s possible I might have even managed to get TWO bites in before realizing that something was wrong. The incident cost me about $30 for a replacement memory card, and well more than that for my pride.

Overall my recovery has moved along quite nicely, but I’ve come to realize that this isn’t a linear process with each day better than the last. There are minor setbacks and periods of discomfort that appear from time to time, usually after I’ve had a very good day and have been engaged in more physical activity than I probably should be. I’ve have learned to not judge the quality and pace of my recovery in half-day increments, but instead to look at the bigger picture, and so far I’m very happy with the way things are going. It has helped to set some stretch goals for myself, and one that is coming up soon involves participating in a local running event (as a walker). Alison and I, along with a number of friends and family members, will be participating in The Point of Honor 5K and Youth Mini Mile, held on Saturday, April 3rd. This race and its proceeds benefit LifeNet Health and Donate Life. The race is organized by Kevin Shroyer of Lynchburg in honor of his daughter Korinne Shroyer who died on May 26, 2002 at the age of 14. The Shroyer family made the decision to donate Korinne’s organs, and one of those who benefited from this gift was Len Geiger who was in need of a double-lung transplant. Len and Kevin eventually met and learned that they are each avid runners. The two have even found several opportunities to race together to honor Korinne’s memory and to draw attention to the power of organ donation. If you’re interested in participating in the race, you can register online at Riverside Runners. I can almost guarantee that you won’t finish last.

Most of our time during this visit was spent trying to clarify how much activity they’re willing to have me do. Make no mistake, I understand that one of the most important things I need to be doing at this stage is resting in order to give my body all the strength it needs to heal. But, I can’t sleep 24 hours a day, so I continue to find myself with energy to burn. Dr. Fisher’s guidelines were pretty straightforward — if something causes pain, don’t do it. Other than that, moderate weightlifting and any form of aerobic exercise is okay. My incision is healing nicely and they removed 15 of my 45 staples. With any luck, the remaining 30 will be plucked out at next Tuesday’s visit. Finally, my abdominal drain was removed — something I’ve been looking forward to for the past several days.

Dr. Fisher ended by giving me the green light to return home, something that two-and-a-half weeks ago I thought would be impossible by today. Friday, March 12th is Julia’s 7th birthday, and I had already prepared her for the very high likelihood that I’d not be able to get home in time celebrate with her in person, something she was not readily accepting. I fully expected that getting to call her and tell her we were coming home would rank among life’s happier events, and for a moment, it was. It turns out that the only thing better than telling your daughter you’re going to be home in time for her birthday is hearing her reaction to the news. That was a keeper.

And so, here we are. Home. I’ll remain tightly tethered to Richmond for many weeks as the transplant team watches for signs of rejection and any other complications that might occur. For months I’ll continue to return to Richmond on a weekly basis, but as long as there are no surprises, I should be able to do that as a day-long commute from home.

Thursday, March 11, 2010. All under the same roof, so life is good.

]]> http://billsjournal.com/2010/03/11/home/feed/ 4 Bill Varner P1000565 http://billsjournal.com/2010/03/09/two-weeks-under-our-belt-and-finding-the-new-normal/ http://billsjournal.com/2010/03/09/two-weeks-under-our-belt-and-finding-the-new-normal/#comments Tue, 09 Mar 2010 00:06:13 +0000 whvarner http://billsjournal.com/?p=708 ]]> First, to get caught up on some old news, here are some of the details about the days immediately following discharge from the hospital…

Thursday evening at about 5pm, I was told that I was ready for discharge from the hospital. It would have been more accurate to say I was being discharged from the hospital, whether I was ready or not. While I had anticipated that this was a milestone I would reach with unbridled enthusiasm, like everything else with this journey, the reality wasn’t nearly as black and white. Frankly I was nervous about it. I thought I’d be kicking the door down, running for the car. Instead I was wondering if maybe we were being discharged just a day or two earlier than we should be, and wouldn’t it be better if we just stuck around to be completely certain that everything was okay, and after all it’s getting dark and it seems like getting discharged during a period of very bright sunlight, with possibly slightly less traffic would be…

I couldn’t believe it. I had turned into that patient. I needed the security of the hospital in an irrational way. I suddenly realized that I should’ve been paying more attention to all that had been going on around me for the past week. For example, I can recall in extraordinary detail that several people had said, “Whatever you do, never, ever stray from your drug regimen..it’s what’s keeping you alive.” Check, got that. What seemed so much less clear now, though, was exactly what the drug regimen was.

My abdomen also felt a little tight. This seemed like a “legit” medical-type concern, so I mentioned it to Carol, one of several members of the nursing team on the Hume-Lee Transplant Unit at MCV who treated us so wonderfully during our stay. She poked around for a bit, listened with her stethoscope, and smiled. She looked at Catherine and said, “Ohhh, we women know what that is.” What…huh? Was I pregnant too? Carol added, “You’re just getting a little bloated. It will pass.” Never have more accurate words been uttered, although a bit understated. More later on that.

Before I knew it, all the components of my carefully manufactured Hospital Nest had been dismantled and loaded onto a cart rolling next to my wheelchair. We were leaving. Okay then, at least I had The Notebook. The Notebook had been provided to me earlier in the stay and contains an enormous amount of critical information: the single sheet that outlines my drug schedule, lists of signs and symptoms of rejection, around-the-clock emergency contact information, dietary restrictions, activity restrictions, and the grid of vital signs I’m to record numerous times each day. The Notebook has it all. Therefore, no matter where I go in the future, The Notebook goes with me, along with a giant box of 1-week’s worth of pills neatly arranged into 28 little boxes for each of my 4-times-a-day medicines (it will eventually be only 2-times per day), a thermometer, and a blood pressure machine.

The apartment so graciously being made available to us through the generosity of one of Catherine’s Genworth colleagues would not be ready for another day, so we went to The Westin and settled in for the night. We arranged for dinner to be brought to the room and toasted the opening stages of our gradual return to the normal world. But the calm was to be short-lived, because I was unwittingly working on the perfect recipe for a frantic night.

The recipe started with anxiety. I should explain that during my first day outside the hospital, my anxiety trigger remained on Red Alert status, scanning the environment for the slightest change in my condition that might indicate trouble. No detail was too small to be considered as a warning that I was in rejection, so this was no time to let our guard down. Next, consider the possibilities when two days of a hyperactive appetite catch up with a gastrointestinal system that has been essentially asleep for over a week. Let’s just say…there were consequences. I spent the night pacing the hotel room unsuccessfully trying to find a comfortable position while growing increasingly convinced that I needed to place a call to the transplant coordinator to make sure I shouldn’t race back to the hospital. I held out as long as I could, but by 6am I decided that I needed Catherine’s opinion on the matter.

I had to ask Catherine if she was awake three times before she realized that she was. I quickly got her up-to-speed on my concerns: swollen and painful abdomen, more fluid than usual accumulated in the abdominal drain, and absolutely no sleep. She seemed unimpressed, and to be honest, when I heard myself say these issues out loud for the first time, they didn’t seem very serious so I reiterated them, just to make sure we were on the same page. Not long thereafter, I realized Catherine was showering at what seemed like a leisurely pace (Note: this brought back memories of another time of high anxiety when Catherine’s water broke in the middle of the night prior to Will’s birth. While I waited in the driveway with the engine running, she…you got it…she showered and then dressed for the occasion). By the time she was out, I had already spoken with the home health nurse and with the transplant coordinator, both of whom believed  that I should continue to be vigilant (my strong suit) and calm (not so much my strong suit). When Catherine finally emerged, I provided her a detailed summary of my phone conversations. She looked directly at me and said in a quieter-than-usual and lower-than-usual voice, “Bill, you’re going to be okay. Nothing’s wrong.”

And with those few words, I had been given a gentle course correction that helped set me on a path for a less frantic recovery. She was, of course, right. I spent most of Friday in quiet reflection, wondering if I could determine when, exactly, I had lost the ability to distinguish between matters of huge consequence and those of no consequence at all. Somewhere along the way, I had lost all sense of scale and proportion when it came to the numerous aches and pains that now accompanied me. Part of the explanation rested with me and my anxiety…I get that. When in doubt, I would assign every change in my condition the highest degree of attention and concern. Put more succinctly, I had become a crazy person. But another part of it is the direct result of that fact that I’m now a different person than I was prior to the surgery, and in this case I’m referring to the physical differences. I have a healthy liver working in me now, and I have a suppressed immune system. I feel very strong, but I also am having to re-learn how to stay healthy under a completely new set of rules, some of which seem natural and others of which feel foreign. I want to be extraordinarily careful not to do something wrong, in effect to pamper this new liver so it’s given the best possible conditions to thrive. I’m having to learn what “normal” is going to be in the future.

By Saturday morning I was feeling even stronger, and suddenly allowed myself to believe that everything was going to be okay. I’m still in the three-month window where there’s the greatest risk of rejection, but so far my recovery has been progressing at a greater-than-expected rate. I needed to stop dwelling on minutiae and start directing my attention to a brighter, healthier future. And what better way to do that than to spend time with my children, so we arranged to have my dad and Mary bring Julia and Will over for a visit on Saturday afternoon (and yes, we did clear this with the transplant team). It was incredibly uplifting just to be around them again, hearing them laugh and watching them play together. It was apparent that the time away had its ups and downs, and Julia never misses an opportunity to ask if we’re going to be home in time for her birthday on Friday, March 12th. She’s going to be seven, and it’s hard for me to imagine missing that date, but I’m going to have to defer to the opinion of Dr. Fisher, which I won’t know until this Thursday morning. My ideal outcome would be to get cleared for a weekend return to Lynchburg, knowing that I’ll likely have to be back in Richmond for the clinics next week. We took the kids to the Lewis Ginter Botanical Gardens here in Richmond on Sunday afternoon, where Catherine insisted that I be pushed in a wheelchair for parts of the walk. I didn’t enjoy being in a wheelchair at all, and felt very self-conscious about it, but I’ll admit that I got strange symbolic satisfaction about my kids wheeling me through some of the more challenging stages, bickering with each other over who got to push me next. Before I knew it, the afternoon had slipped away and it was time for the kids to return to Lynchburg. As expected, the send-off was difficult, but was only a blip in the grand scheme of things. It was time again to focus on the shorter-term need to continue to get healthy.

Over the past two weeks, it’s hit me – I’m missing something. Since the transplant, none of the symptoms that have bothered me over the past several years are present. None. No itching, no nausea, no chronic fatigue, no general feeling of weakness and listlessness. That alone is hard to believe. I’ve not even had the slightest hint of a fever since the surgery and my energy level continues to rise. Sleep is still a problem (I’m running at about 2-3 hours each night without even a nap during the day), but I’m told that’s also to be expected as a side effect of the many of the medications I’m taking. Fortunately the dosage for one of the worst offenders – Prednisone – will taper down every few days, so all its unpleasant symptoms should diminish.

On Monday morning (March 8th) I had blood work and an MRI. Although Dr. Fisher has not yet seen the labs, the transplant coordinator shared with us that everything looked good. Some of my liver enzymes had bounced back up, but apparently not into a worrisome range, and the coordinator explained that this was to be expected. My white blood cells also appeared to be high (25,000) but the transplant team says that’s within expected ranges for this stage of the recovery and given the amount of Prednisone I’m taking (remember, I’m still trying to find what the new “normal” is…here’s a great example).

With home health, physical therapy and clinic visits on the schedule through the remainder of the week, I expect nothing but positive reports to continue to come my way. Alison has her first return visit to the clinic on Tuesday, but all indications would suggest that she’s continuing to blaze a trail through her recovery, also beating all expectations in terms of progress. It will be good to see Curt and Alison again on Tuesday.

More to come, but for now I’ll share some additional photos from the hospital stay and afterward.

Let me start with a quick review of the weekend following my last posting:

Friday: Alison and I continued to make great progress. She was completely unhooked from all tubes, began a liquid diet and quickly shifted to solid foods on Saturday. My NG tube was removed – another milestone in helping me feel like a new person – and I started on a liquid diet. With renewed energy, we challenged each other to laps in the hallways, and I was feeling confident since I had made such limited use of the pump for jolts of pain medication.

By Saturday Alison was practically having to convince everyone that she was actually a patient since she was no longer tethered to an IV pole and gave no evidence of having just gone through major surgery. My father and his wife, Mary, arrived to give Catherine a quick break so she could go home overnight to spend time with our children.

Sunday: Alison was discharged Sunday morning, which Catherine and I met with very mixed feelings; we hated seeing the other half of this team leave, but it was an immeasurable relief to know they were leaving because she was well enough to do so. (We now talk by phone to compare notes and provide updates – a comforting call each day). I continued to push myself to walk, so I wasn’t surprised that by that evening I was feeling a little less energized. Catherine arrived back at the hospital at 9 p.m.

We had just finished watching the closing ceremonies for the Olympics when I got out of bed and had to sit immediately back down because I was light-headed and having trouble catching my breath. Catherine helped me back to the bed, and as we sat down I told her I was passing out. The next image I recall is of Catherine racing out of the room to call for help. I was attached to an EKG monitor while the room began filling with more and more people, and it was almost immediately determined that I was experiencing atrial fibrillation, which in lay terms means that the heart is quivering rather than beating in a rhythmic fashion. It also meant that I was going to be whisked back to the Critical Care unit to begin having the irregular rhythm corrected. My blood pressure was bottoming out at about 74 over 50, but my heart was racing at 180+ beats per minute. The immediate treatment involved IV drips of medication designed to convert the heart back to a normal rhythm, which we understood could take anywhere from an hour to a few days. If this proved ineffective, the next step would involve sedating me and shocking me back to a normal rhythm, which sounded even less pleasant than the “waiting” option. So, we waited.

Now, I am a planner by nature. I like to anticipate, and prepare for, a wide variety of possibilities. I had spent endless hours bracing myself both mentally and physically for the transplant. I had prepared for pain, I had prepared for reluctantly releasing all control, I had prepared for being away from my children for an extended period. I had prepared for a lot, but I had not prepared for this. I now know that an atrial fibrillation is not uncommon in those recovering from a surgery as traumatic as a transplant (a little detail I must have overlooked in the marketing material for my Transplant Cruise). But an atrial fibrillation is not common for me; nothing about the past week-and-a-half has been common. So, from the onset of this at about midnight Sunday, through the next 14 hours, I believed that there was a real likelihood that I might die.

Fear comes from a lot of different places, has a multitude of contexts, and is different for all of us. But fear that grips you at the source of your breath strikes you in a very primal way, and so I found myself in a very dark place with no apparent way out. I couldn’t force my mind to stop putting images in front of me that I didn’t want to see. It started with vivid scenes of my children at my funeral and got worse from there. I’m still recovering from what Catherine and I experienced that night and don’t have any profound thoughts to share. I didn’t come out of the other side of this with some special clarity about the purpose of life, or nuggets of wisdom to impart. I do, however, feel transformed and am still processing exactly what impact it is to have on me.

Here are two things that were very clear to me in the short-term. First, this could have only been worse if I had experienced it without Catherine there. Her presence, support, reassurance and love were the ONLY things that kept my train anywhere near the tracks. Next, I really needed to see my kids.

So, by Monday afternoon, the atrial fibrillation unceremoniously stopped. About two hours before I converted back to a normal rhythm, Dr. Fisher came in the room, barked out a few orders about my care and delivered the one piece of news that brought a bright ray of light into a pretty grim day: the pathology had been completed on the removed liver, and the results were 100 percent clear with no cancer cells present. This was incredibly uplifting to hear, even in the face of concern about the heart rhythm.

Since then, we’ve been undergoing additional diagnostic tests to further understand a variety of issues – just a few of the numerous issues that will be continuously monitored even after I’m discharged from the hospital:

• Atrial fibrillation: Is this something I’ve always had and this event brought it to the forefront? We still don’t know, but it’s Thursday morning now and I’m being slowly weaned from the IV drip that corrected the heart beat on Monday. We’ll be waiting to see if I flip back to atrial fibrillation or if this was really just a one-time incident.
• White blood cell count: Mine jumped very high early Monday (10,000 and lower is good; mine skyrocketed to 43,000 and remains higher than we’d like at 21,000 today). We began running 5-day blood cultures Monday morning, and the preliminary results are negative for any sort of raging infection.
• Blood sugar: A common side effect of the prednisone I’ll take as part of my anti-rejection regimen is elevated blood sugar. Mine has been hitting high enough levels to make me light-headed. We’re correcting it with insulin now and hope to eventually reduce the prednisone to an amount I can tolerate while still providing an adequate anti-rejection benefit. The only question will be whether or not I’ll need to take daily insulin to help tolerate the prednisone.
• Pneumonia: I’ve got a mild case of it now, but between the antibiotics I’m taking and the breathing exercises I’m doing faithfully, it’s not going to present a long-term problem.
• Infiltrated IV: One of my IVs infiltrated on Monday and spent an inordinate amount of time pumping fluid under my skin. Incredibly, the pain from this is several times worse than the pain from my surgical incision, but it definitely falls in the realm of minor annoyances.

And that brings us to today – Thursday. I feel very strong today and trust that while our plate remains full of some potentially serious hurdles to cross, we’re well within the range of what the transplant team deals with on a daily basis, and I have absolute confidence in their skills and knowledge. I hope to be discharged late this afternoon or tomorrow, but will have to remain in Richmond for as much as two weeks while my medication dosages are adjusted and while I learn to go out into the real world with my suppressed immune system.

Finally, two incredible pieces of information to share:

1. All of my liver enzymes have been coming down steadily since the surgery, and for the first time in over a decade one of the measures has strolled back into normal range. I’m not sure how one celebrates such an occasion, but rest assured I’ll be celebrating this.

2. I had a routine ultrasound of my liver late yesterday morning where it was revealed that the portion of Alison’s liver that I received has already grown to be the same size as an average adult-sized liver. In nine days.

Catherine and I continue to be at a loss for words to adequately convey the appreciation we feel for the outpouring of love and support that has come to us throughout this journey from friends, families, co-workers, medical professionals at the Virginia Commonwealth University Medical Center and new relationships that are being created each day. Our lives have been impacted in ways that go far beyond the transplant and that have opened our eyes and hearts to the capacity that individuals and communities have to care for one another.

Monday was a relatively easy day with most of it under heavy sedation, with the exception of the early waking hours . We got up bright and early to pay one last visit to Alison and Curt (5:30am-ish) prior to her being wheeled down to pre-op and surgery. I followed about 2 hours behind and was immediately introduced to the anesthesiology team. I was doing my best to remain relaxed at that point since I knew they’d probably be sharing more details about the ventilator and breathing tube than I probably really wanted or needed to hear. For whatever reason I had managed to keep my anxiety in check all throughout the morning and I didn’t want anything to topple that.

I have absolutely no recollection of being taken back to surgery, but have vivid recall of waking up in the early evening Monday struggling with the breathing tube. I now know that something had gone wrong with the breathing tube — nothing life-threatening, but highly annoying and enough to trigger a constant gag reflect during the final hours while I was regaining consciousness from the anesthesia. Fortunately Curt was on hand to realize that something wasn’t right, so while I scribbled notes on a clipboard in an effort to explain what was happening, I was again sedated and the problem was fixed.

One of these days I’ll have to have Catherine jot down some notes about what the time was like in the days immediately following the surgery, since I have only flash images to draw from. I’m most shocked and pleasantly surprised by how little pain there is. The PCA pump remains by my side at all times, but there’s not been much need to use it unless it’s in anticipation of getting up for a walk, which I’m trying to do frequently. Catherine did share with me a picture taken by the transplant coordinator of the removed liver. It looked like it was time for that puppy to go. I’m not sure if it’s because I’ve replaced a gigantic unhealthy liver with a smaller, healthier one, or the fact that we’ve had nothing to eat since Saturday night that accounts for the 16-pound weight loss since admission, but I’d recommend neither as a long-term diet strategy. I am looking forward to any kind of food, even though tomorrow I’ll be allowed only sips of liquids. Sounds great for now.

Alison’s recovery also seems to be going smoothly and she’s been up and down the hallway numerous times each day. We’ve each been blessed with wonderful nurses on every shift and can’t say enough about all of them.

The days are a blur of visitors explaining what the next weeks, months, year and beyond will look like. I’m encouraged that there are no signs of rejection so far, and that’s obviously a top priority for the transplant team. I’ll remain on heavy doses of antibiotics for several weeks while they remain vigilant about that. The other major milestone to cross is the report from the pathologist on Monday (if everything’s on time) letting us know if there were any cancer cells in the removed liver. Until then we just hold our breath and focus on the things we can have an impact on — following everyone’s directions, walking, breathing deeply, etc. It’s also been pretty remarkable to watch each batch of lab results as they come in. The liver enzymes that have been elevated for years started dropping with the very first bloodwork drawn after surgery and have continued to come down since then. The bilirubin score hasn’t dropped as rapidly as some of the others, but it is dropping. My energy level is also off the charts.

I’ve overwhelmed by how positively everything has gone so far and the glimpse of a different life that I’ll get to enjoy following recovery. Everyone should have an opportunity to spend some time on a unit like this and watch the overnight transformations that occur following a transplant. Yes, some have very complicated recoveries, or even face rejection, but the common theme is, “I can’t believe how much better I feel already.” It’s remarkable to witness what can happen when medical technology and human generosity come together like this.

I need to sign off for now, but will post some more pictures and news later. Bottom line, everything is going very well.

One milestone is behind me — the departure from the kids this morning. Since I’ll be immunosuppressed, Julia and Will are not allowed to visit during the first weeks following the surgery. After about a month I’ll be able to be with the kids again, despite the lifetime immunosuppression regimen. This was something I’ve dreaded for a while, and even more since I realized that the duration of my stay in Richmond would span Julia’s 7th birthday (March 12). I idolize my kids, and the best part of every day is the time spent with them, so this will be very new territory for us. For about the last three weeks, nearly every time I return home from work Will asks, “Did you have your surgery today?” I know it’s been weighing on his mind. All things considered, the departure went better than I had feared, although I did feel the need to turn back for one extra round of hugs and kisses just in case the first round didn’t stick. We’ve already tested the Skype connection twice since arriving at the hospital, and I have to admit that I think I feel an even greater since of wonderment at the value of that technology than the kids do. I still wonder what it is in the human genetic code that seems to make it imperative to stick your tongue out when you see yourself on a live video connection.

It’s hard to believe that this day is here, and I never expected to feel as calm and comfortable as I do. We feel the strength of the prayers and support from family, friends, and even strangers. We know we’re in the right place at the right time. The magnitude of what we’re facing tomorrow and the days afterward is almost beyond comprehension, but I can look at everything around me and know that there’s a team of people here who are tasked with ensuring that Alison and I emerge safely.

I’ll obviously be out of touch for a few days, but will get back online as quickly as possible.

All is good.