The medical news has generally been very encouraging.  On January 10, I celebrated the six month anniversary of my transplant.  I had the chance to catch up on the phone with Jean Handler, my liver donor, who has had her share of struggles but seems, like me, to be improving at a steady  pace.  The anniversary and the conversation gave me the opportunity to look back and realize how far we have come.

My various liver levels – AST, ALT, and the bilirubin that was making me look somewhat yellow – have all come down to close to normal range, which suggests that my body is now accepting the new liver.   The enzyme that had prompted the doctors to perform the vein-widening angioplasty in my liver a few months ago has also slowly been sinking to more acceptable levels, suggesting that the dilation did its job.

As the result of these improvements, my doctors at Mass General have gradually lowered or eliminated some of the medications I have been on.  I am taking lower doses of the anti-rejection drugs, for example, and we have dropped a few medications from my daily regimen completely.

The best news is that the doses of interferon and the anti-viral ribavirin that I have been taking since October seem to be having a significant positive effect on my hepatitis viral load.  This was a surprise, since the previous three times I had tried this therapy I became very ill and the treatment had no effect.   This fourth time the symptoms have not been as bad and the healthier liver seems to be combining with the medication to bring down the amount of virus in my system.  This is good news for protecting my liver as we wait for the arrival of hepatitis C specific anti-retroviral drugs such as telaprevir, which has largely completed its Phase III clinical trials and is awaiting approval by the FDA.   I am hoping that this new step will come through in 2010 or early 2011.

The only difficulty is that the drugs I am taking still have real side effects that slow me down.   The anti-rejection drugs raise my blood pressure and cause my hands sometimes to shake mildly (this has made a mess of my handwriting and check-signing ability).   The interferon lowers my white and red cell counts and robs me of energy at least one or two days a week.    I sometimes have to endure nausea in the evening and various strange tastes in my mouth.   There are occasional days when I  find it nearly impossible to get out of bed and I simply have to cancel whatever appointments or activities I had planned.

Still, I am surrounded by small, steady signs of improvement.   I no longer have to take the daily naps that came with liver cirrhosis.  The encephalopathy (or “brain fog”) is now largely gone.   I have started working out at the gym, with the guidance and encouragement of my own personal trainer, John Massie, who is home for a few months before he goes to Brazil for a program in sustainability and human ecology as part of his spring term abroad from Duke.   I am now driving again, something I had not let myself do for nearly six years.   And I made my first solo overnight trip in a few years, heading down to New York City for the fourth Institutional Investor Summit on Climate Risk at the United Nations, an event I first proposed back in the fall of 2002.

I am hopeful about the future.  If current trends continue, I should be much better in six months or so, at which point I will need to consider the amazing question of what to do with the next phase in my career.   My work has been on hold for a long block of time – except for a few small projects here and there – and it is both daunting and exciting to think about launching into a new field and a new job in my early fifties.   Given my eclectic background to date, there are many areas that appeal to me – from philanthropy to responsible investment work, from sustainability to shareholder activism, from teaching to service within the Episcopal church, and of course to various forms of politics.   One of the largest pieces of the challenge is to inform enough people that after so many years of sitting “on the bench,” as it were, I am now approaching the point where I will be able to suit up and head back on to the field.  Please spread the word.

Indeed, if anyone reading this has any particular thoughts about organizations or work through which I could be of service, I would welcome hearing from you.

The rest of the family is in good shape as we make it through the winter.  Anne continues to bear a heavy teaching load, since she taught all the way through the fall and into the intensive “winter session” at RISD, and then will have to keep going through May.   Kate is rehearsing simultaneously for two community theater shows.   Samuel officially completed his academic work at Yale in late December and is now working as an unpaid intern in a fascinating position with the U.S.-China High Level Economic Dialogue out of the Treasury Department in Washington D.C.   I am hoping that when the unpaid portion concludes he will be able to find something with a salary in the same city!   As I mentioned, John is preparing to go to Belem, a city of two million people at the mouth of the Amazon.   He has been diligently practicing Brazilian Portuguese through his computer and with anyone who speaks it (there are quite a few in Somerville).

We appreciate the continued support that we have received in many forms – through our Sunday community of St. James’s in Cambridge, through our many friends and neighbors who have stepped in to help, and through our real and honorary relatives spread out across the country who check in on my progress regularly.    2009 was a hugely eventful and challenging year for us, and we are hoping that 2010 will be period when we can settle into the more peaceful life of which we dreamed for so long.   We wish the same to all of you.

First, the good news.  Many of the numbers have improved.   My bilirubin (the stuff that makes your skin yellow) has dropped from an alarming 15 down to a much more acceptable range of 3, and as a result I no longer have the slightly yellowish-gray tinge of many liver patients.   Also, the other numbers that indicate the likelihood of rejection of the liver have been in good shape, as have my kidney functions.

One number – the measurement for alkaline phosphatase – was unusually high.  Alkaline phosphatase is an enzyme made in the liver; when its levels rise that can be an indication that something – a bile duct, a vein – is blocked, resulting in unacceptable stress on and possible damage to the liver.

After reviewing these findings, the doctors at Mass General ordered a liver biopsy.   This is where you are admitted to the hospital for a day; they locate your liver through your abdomen with ultrasound; numb your skin with Lidocaine; and insert a long, thin needle between your ribs into your abdominal cavity and then straight into the liver.   The needle has a small capture device on the end which snatches a little sliver of liver tissue – a core sample the size of a tiny worm.   I had this done a month or so ago.

The two results from this test showed something strange.  The first sample showed that the liver was under general stress from the hepatitis, but nothing too worrisome.  The second sample, however, seemed to confirm the hypothesis of a blockage of some kind.

Now, with this new information, they ordered another test – this time a detailed study of the veins and arteries in my liver through an MRI.  So back I went to the hospital to be loaded like a torpedo down a submarine tube for an hour or two.   I have done this enough times so that I have developed a bit of claustrophobia, for which I take a mild sedative.   It doesn’t help the sense of confinement that the MRI test is very loud; you are not just in a torpedo tube, but a tube on which it sounds like people are pounding with variously sized sledge hammers.

The results of that test showed what the doctors had suspected: there was a constriction in my right hepatic vein which was probably causing a number of symptoms including the residual swelling of the abdomen (ascites) and the elevated alkaline phosphatase.  The extraordinary detective work by Dr. Chung, Dr. Mazhar, and their colleagues had been confirmed.

But what to do about it?  The answer came after another two week interval, when I went in to the hospital last week for a three day, two night stay.    The solution suggested by Mass General and supported by Emory was to do an angioplasty of the liver.   This means putting me under conscious sedation, inserting a catheter through my jugular vein and down through my neck and body into my liver, measuring the difference in pressure on the two sides of the constricted site, and then using a small balloon to stretch the restriction to a wider diameter, thus allowing more blood to flow through.

I had that procedure done on Thursday, December 3.   It was scheduled for 11:00 AM and took place at 5:00, a fairly long delay given that I had not been allowed to eat or drink anything since the night before.   As usual, I required a bit more sedation than usual because the first few doses made me more talkative rather than less.   The doctors, using a phalanx of flat screen TVs, a hovering X-ray machine, and carefully timed contrast solution, were able to thread the balloon right through the center of constriction.   When they started, the pressure in my heart was 7 and the pressure in my liver was 14, a “gradient” of 7.   After they had stretched out the restriction (twice), the gradient had been reduced to 2-3.   Thus, in theory, more blood could now escape from the liver, lowering the pressure inside the organ and helping me along.

I say, “in theory” because we won’t know until we see what happens to the various blood levels.   The widened restriction should remain open – it is not particularly elastic and when stretched, it stays stretched (like leather).   I should start feeling somewhat better.

But given that I am literally on 20 medications – some to prevent infection and rejection, some to address the side effects of the other medications – I am still not completely at the top of my game.   It doesn’t help that we are skidding into winter and that I have picked up a couple of sniffling colds here and there.

However, it is still true that as I approach the five month anniversary of the transplant (on Thursday the 10^th), I am continuing to improve slowly each week, and for that I am grateful.

Years ago I took some flying lessons and the first thing they teach you is “straight and level flight.”   Sounds easy, right?  Just go straight ahead and keep going at the same altitude.

Well, it turns out that it can be more challenging than it looks, because there are three dimensions, formally known as pitch (nose goes up or down), roll (end of wings go up or down), and yaw (nose and tail start to skid around horizontally) and you have to think about all of them at once.  And the plane is being subjected to lots of outside forces that would like you to slip away from that straight and level path.

That’s one reason there are so many instruments in an airplane cockpit – they really only make sense if they are correctly related to each other, and to where you want to go.

I mention this because it offers an analogy for the last three weeks, where I have been trying my best to fly straight and level and where there have been many small and some bigger bumps that have tried to push me to pitch, roll, or yaw in my recovery from liver transplant.  This is one reason I have had many, many tests, especially blood tests, as my physicians have steadily adjusted my medications and then checked to see what biochemical impact the changes had.   Or looked inside me with an MRI to make sure all the ducts were still flowing properly (it seems so).

The most persistent problem has been a high bilirubin count.   Bilirubin is a substance that is part of the normal breakdown of hemoglobin (red blood cells) and accounts for the yellow (or darker) color of urine or the yellow tinted skin and sometimes eyes of people with jaundice (which means “yellowness).  The pathway of the breakdown is from the blood to the spleen to the liver, where it is connected to bile, and then out the urinary system.   A high bilirubin count means that this process is not fully functioning.

If two other indicators were also high, the doctors would be very worried about such dangerous possibilities as rejection.   But those other numbers are relatively low and stable.   So they believe that the bilirubin may be because of the bacterial infection I had or because of the continued annoyance of the liver (and bile ducts) by the hepatitis C virus.

Last week I was slowly gaining in strength, and then got a “sneezing cold” – nothing serious – that put me flat on my back for three full days, revealing to me how weak I was and worrying everyone.   Then, starting on Sunday, I snapped back.   Today I was well enough to go over to Harvard Law School with Marcy Murninghan and pick up my Harvard ID card (as a “visiting scholar”) and visit my carrel.  We got the chance to say hello to the new dean, Martha Minow, who has been a friend for many years, and we noticed that her sister’s influence could already be felt on the school in the poster we saw for Dean’s Movie Night.  (For those of you who don’t know, Nell Minow I would say only a) one of the greatest human beings ever and b) look her up.)  I came home – and was wiped out.

Next week I will begin taking the interferon and ribavirin that the doctors are hoping will hold the hepatitis C at bay, slowing its attack on the new liver.   I am not confident about this, since I went through three treatments with this product in the early years of my illness and it did nothing.    And interferon is the stuff your body makes to fight off the flu – and gives you those fun “flu symptoms.”  So I am a little nervous that whatever energy and mental clarity I am gaining will be lost to the renewed Hep C treatment.   That would be rough.   But it also might make me feel better.

Anne is adjusting to the steady demand of teaching two courses fifty miles away and Kate is playing soccer and enjoying sixth grade, while getting ready to participate again in our local community theater as she tries to build her skills as an actress and singer.   Samuel is looking around for different kinds of employment starting in January 2010 (when he formally finishes college) that would allow him to combine his love of China and Chinese, his interest in economic and sustainability issues (he’s an econ major),  and his desire to be gainfully employed.   John is zipping through the fall of his junior year at Duke and is hoping to be chosen to be part of a foreign semester abroad doing marine and river conservation studies in Brazil.    So a lot is going on.   And our house – which has been peeling for years – has a brand new coat of blue paint with white trim – I think it looks better than when it was built a hundred years ago.

I am, even with my diminished energy, still working to draw the attention of our well-intentioned by overly cautious governor and our besotted, lobbyist infested legislature to the economic absurdity and moral bankruptcy of trying to fund state budget gaps by expanding addiction to slot machines throughout the state.   It’s a long battle, but we are making progress – for that, please check out uss-mass.org

In the meantime, thank you for all your help and good wishes (and meals and support) which continue to flow like waves to our home to strengthen us as we continue to try to fly straight and level to our intended destination of lasting health.

I know that people have been wondering what has happened lately in the transplant saga, and that many of you have been hoping or assuming that no news was good news.   Unfortunately this has not been entirely true, but it has been difficult in the midst of several draining days to pause and give a clear explanation of what is happening when clarity has been precisely what we lacked.  

 Nonetheless, I think I now can describe the developments in the proper context, without giving too bright or too dark a picture.  Some of this will require a bit more medical specificity than I can really imagine that people want, but lovely friends like Nancy McArdle have insisted that the details are both interesting and important, and that in their absence it can be even harder to figure out what is going on, as was the case with the MSUD domino transplant. 

 But please, if medicine is not your thing, here’s the priceless summary given to me, by Ted, one of the tech people who helps out on this floor: “I see that you are back for one of the little tune-ups that these things sometimes require.”  You may be now be excused from reading further.  

 So, to back up to Anne’s last post, I was home and I was trying to cope with the large storage of fluid in the belly known as ascites.  Most people develop it before their transplants, but I (sticking to the normal countervailing patterns) had developed most of my ascites post-transplant.    We seemed to be making progress, though I was becoming – again – unnaturally tired, raising – again — the possibility that perhaps I was trying to remove too much fluid and getting dehydrated.

 The world of post transplant care – when you are immune suppressed — is extremely complex.   Symptoms that mean one thing when you have a fully functioning immune system may mean something else when you have switched part of it off.   For example, the presence of a fever in normal terms means that your body is responding to a threat.  Fevers don’t provide such clear signals in immune suppressed patients – sometimes they don’t exist when they should.  

 In my case – one reason I am so glad I have such smart physicians – is that there are at least three tightly intertwined problems:

1. how to treat and control rejection of a new organ,
2. how to prevent or combat bacterial infection,
3. and how to defuse the attack of the Hep C (or HCV) virus on the new organ, not to mention all the other viruses and bacteria that the body locks up routinely that can now come crawling out of their cells (I guess in both senses of the word) to play. 

We actually thought we had crossed the first two hurdles and were dealing with the third.  But it turns out that we were not done with the second.

 On Friday, Sept 11, I went over to pick up my key to the carrel at Harvard Law School library.  It might as well have been a medal, I was so pleased to get it as part of their generous welcoming of me for the academic year as a visiting scholar (which I hope will really mean something as I improve), but as I walked around Langdell Library, my legs felt heavier and heavier. 

 After seven years of liver disease I have a pretty refined palate about feeling crummy, but we have not developed 79 English delicately calibrated descriptors to match the perhaps apocryphal Eskimo words for snow (though surely we should have quite a few) – I leave it to some enterprising friend to draw up a word list for our collective use).   Let’s just say that it felt as though my pants and jacket were made of lead and I had been hit with a tranquillizer dart.

 I came back home but was already too unwell to join Kate and Anne, as I had I promised and wanted, to go see Julie and Julia.  I had a slight fever, which I knew was a bad sign, but it was Friday night (why do these things always happen on weekends?) so the best option seemed to be sleep.

 I did check with Dr. Rosenberg, our infectious disease doctor, and even sent a guilt-ridden message to Dr. Chung, who normally wants to be instantly informed but was going through the private grief of joining his family in Hawaii after the death of his mother.  Dr. Chung still managed to give super-Tweet guidelines on when I should head for the hospital.

 I slept during the whole evening and until 4:00 the following morning.   My fever was up, but only to 100.1, but in my new world that’s very bad.   By the morning I was in the emergency room. 

 I then went through a long, long series of tests to determine what was wrong with me, guided telephonically by Dr. Rosenberg, who was, as always super alert to the real dangers that could be hidden.   The ascites fluid was again tapped, the blood drawn and cultured, various precautionary actions taken.  I was admitted to the hospital at 4:00 AM Sunday to the transplant floor.

 As the blood cultures came back (they take 48 hours), it turned out that every action was necessary because I had a potentially serious bacterium brewing in both my abdomen and my blood stream.   Left untreated, I could have become dangerously ill.  

 Treating these required not only lots of medications, but medications to make up for the effect of the medications.  I would list them all but I really can’t type all those dozens of complex drug names.  

 The first two days, until the fever came down, were really a blur, as most of hospital life is.   There are dozens of catnaps and interruptions.  There are galling changes in environment and routine.    Meals are a major source of strength and entertainment, but if you have any kind of test that might cause you to throw up, you are put on the dreaded NPO list (this stands for nil per os, Latin for “nothing by mouth”, as nothing to eat or drink).

 So I didn’t eat very much between Saturday and Tuesday. I just don’t remember all the steps and tests taken, all the conversations with doctors up and down the chain of command (still almost impossible to understand) and between specialties, all the swapping of medications, the IVs, the blurring of night and day, the juggling of new information, the swapping of roommates (I have had two in the last 24 hours), the constant round robin of nurses – some charming and brilliant, some grumpy and exhausted.  

 Plus I can’t walk around a hospital floor without seeing 20 idiotic design mistakes (machines that are designed to wake two patients up with a loud beep, get the patient to notify the central desk, and get a nurse to run down the hall any time there is a problem – which is perhaps 10 times between 12 and 2 AM; windows on one side of the room that look out on the river while the BEDS are hooked up to the side that looks at the brick wall).   And when you point this out to anyone, they just shrug and say “yes, it’s crazy but what can you do?”)

 Also, this new run-in was very hard for Anne, who had to start teaching at RISD on Monday, and for Kate, who was hoping for some smooth sailing.   Thank you to all who are h
elping them.

 So, to sum up: I carried a particular bacterium that was developing for some time in a way that could have been seriously unhealthy, it has been brought under control, and I was released this afternoon and came home with a PICC line (a catheter into the vein that allows IV antibiotics to go directly into the blood stream) for, we hope, about two weeks of treatment.   Then we can turn and deal with the Hep C.

 The two really good things that happened while I was here was that I had a nice visit with my father, who drove up from New York and we were able to stroll around the hospital like two adults.   I am hoping to see my mother next week.  

 And I finally got the chance to read Carl Hiaasen’s Hoot, which Kate gave me for Father’s Day.  This book won the Newbury Award for its humorous approach story about some middle schoolers who attempt to save a key environmental parcel from a pointless pancake house.   

 I have read his adult fiction but I think I liked this book even more.  And it was very comforting to read as I was waiting on stretchers for ultrasounds or CT scans or peritoneal punctures, which was pretty much the rhythm of my days, because it made make think constantly of Kate.

Katie came roaring back into the house just as we arrived, with Sonia who had taken her out shopping all day for new school clothes. She was thrilled with her haul and we were all sooo relieved and happy to be back together in our own home with each other and with our cats.

That had been Katie’s explicit desire all summer – to have a few days to be all together as a family. We had a brief and intense dose of that. Bob sat up late listening to the boys debating economics and ethics – music to his ears to be sure. He may even have offered a well aimed comment (or two).  Katie literally hummed through the house and modeled her clothes and hugged her cats, who happily responded by shedding all over the new duds.

The house was beautifully cleaned, thanks to Sarah’s efforts to find and supervise cleaners.  Marcy had brought over flowers and basic staples. Sonia arrived with armloads form Wilson farms, so we sat around munching on fruit and cookies. We were so well welcomed!

The next day we took the kids out for a celebratory brunch at Henrietta’s Kitchen. A real extravagance but watching the kids enthusiastically dig in to their fourth courses was worth it. They enjoyed pointing out delectables that the others might have missed.    At one point, when we thought no on could eat another thing, Kate grabbed her plate and said, with the spirit of a World War II ace, ” That’s it.  I am goin’ back in!”

The first week was slow and full of relief and gratitude just for being home.  By the weekend, at we were getting concerned that Bob’s energy was lagging. My sister and family came through for a quick visit on their way home from Maine. We had a supper of Chinese dumplings and kid fun, but Bob was beginning to look very sallow and retired early. Sunday afternoon we had a lovely surprise when David Michaelis stopped by – everyone was coming down from down east.  Sitting in the backyard sun Bob’s color was definitely off and we were starting to worry – always on a weekend! Another surprise visit (with pie!) from Nadine, but Bob was too tired to come down. – though he enjoyed the pie later.

Monday, Jude Weiss came to hang out with Katie while I took Bob into MGH for labs and his scheduled rendezvous with his longtime hepatologist – Dr. Ray Chung.  By the time we saw Ray, they had analyzed the labs from that morning and seen that that his liver numbers had jumped up.  This was worrisome, so they immediately admitted Bob to the transplant floor for more extensive testing.  They gave him albumen, which made him feel better, and decided to tap his belly to pull off the fluid (ascites).

Sad as he was to be back in a hospital, and after a moment’s nostalgia for the warm team approach they use at Emory – it all went very smoothly. Bob had a pleasant and quiet roommate the first night and no one the second night. The nurses were good, the floor quiet. They even turned down the hall lights after 10, which Bob really appreciated.

I needed to spend much of the next day getting Katie ready for the start of school on Wednesday. Sonia had dealt with the need for skinny jeans and tank tops, but Mom had to get the actual school supplies. Then we needed to spend the last day of vacation doing something – anything – fun.  Slightly constrained by the unwanted hospitalization, but aided by spectacular weather, we did have a lovely day – meandering down Charles Street, looking in the shops, having lunch and walking around the public garden. Then Jude stepped in again for a couple of hours of Newbury Street and I went to check on Bob.

After the initial intense disappointment of going back into the hospital, he rallied and was coping very well.  Visits from Jude and Charlie Lord, Bruce Walker and Owen Surman all helped.    By Wednesday afternoon they were clear about releasing him to come home.

The upshot – confirmed the next day in our clinic visit – is that the liver is holding up well, the body is not rejecting it and its functions are all on target.    The more difficult news is that the Hepatitis C, which we knew would be an issue post-transplant, has come back more quickly and aggressively than we had hoped it would.  Fortunately, it is not causing fibrosis.

So he will start Hep C treatment  immediately on Tuesday, rather than wait any longer. The treatment is pegylated interferon with ribiviran. It is not fun. Bob ran three courses of it before back in 2003-5, trying to stop or slow the virus with no appreciable success. And it makes you feel really crappy. Hopefully with a new strong and well functioning liver he will tolerate it better and it may even work much better.  They will start him off on a low dose and see how he does. And then there are always those new medications we keep waiting for down the line. Several are in stage three trials and should be ready in ano
ther year.

So that is the update – the up/down/up date.

One more adventure:
Friday night my parents were here – also on their return from Maine – and we had a wonderful dinner in the backyard, Mom and Dad, Bob, Katie, me and Jude eating Mom’s meatballs and fresh veggies from the market.  As we were all getting ready to turn in early, we heard commotion in the back street – people rushing down the alley from the houses behind us carrying pets and stuff. We looked outside and saw a blazing fire about the size of a large bush. As I reached for the phone I could hear the sirens. By the time I alerted Bob and we went to the window again the house on the street behind us was totally a wall of fire. The owners were out for dinner, no one was hurt and the fire was quickly contained, but the newly renovated house is a total loss. As Katie said, we met tons of neighbors we had never seen and the community has rallied around Kathy and Jean.

Thus our strange and eventful summer. We are determined to enjoy these days of summer!     Thank you again for all the different forms of support we have received from so many friends!

For anyone interested, here are the clips from news stories on the domino transplant, with footage of Bob and Jean from a news conference the hospital arranged earlier today.

Fox 5 (evening telecast)
http://www.myfoxatlanta.com/dpp/news/Patients_to_Talk_About_Rare_Procedure_082109

NBC 11-Alive
http://www.11alive.com/rss/rss_story.aspx?storyid=134205

CBS 46
http://www.cbsatlanta.com/video/20497446/index.html

Emory Health Sciences Web (Main):
Please note our own video and photos will post next week.

http://whsc.emory.edu/home/news/releases/2009/08/georgias-first-domino-liver-transplant.html

And at the top of the list was the great help from Ken who came down from Nashville to stay with Bob while I was gone.  He took Bob to clinic on Friday, then helped him navigate to and from a procedure, and supported him though the unfortunately painful aftermath. Over the weekend, they also went out to dinner, had long talks and even ventured out to church on Sunday. The rest of the time, Bob slept.  I arrived back around midnight and Ken left this morning.

This morning we got up and slowly set out for the clinic visit. Already calls were coming in from family and friends to wish Bob a happy birthday. But the day did not unfold as a fun celebration. Shortly after we arrived we found out that another procedure was scheduled and we could count on being there all day. I ran back to the guest house to collect reading and a movie to get us through the inevitable waiting around. Jean, Bob’s liver donor stopped by with some very cute birthday cards. Dr, Knechtle came in to see how Bob was feeling.

They could not do the procedure – a needle biopsy of the liver, until certain blood work came back. When it did, the test results were not useable, so the test was done again. When the new results finally came back, the doctor came in and explained the procedure and prepped Bob. They got started and two minutes later the nurse called me back inside the room to speak with the doctor. Because Bob still has a great deal of ascites, fluid build up in his abdomen, Dr Ram, decided it was more advisable to do a trans-jugular biopsy rather than go through the abdomen. So the day of waiting was all for naught. Now the biopsy is put of until Wednesday. Tired, frustrated and a bit down, we went to Steak and Shake for a bite. (Bob had not eaten all day). Back at the house, Bob conked out, waking up occasionally to field calls from family.  At dinner time, we sat out on the little porch in front of our door and ate salad and melon as a storm approached. The air was soft and almost cool. As the sky darkened slightly, a rainbow appeared through the trees straight in front of us. We could see the rain approaching and it finally fell gently just in front of us, our shallow little portico just barely keeping us dry.  Just as we went back inside, our friends Jon and Karin came over with a small cake, Allan and Gretchen arrived next with sparkling wine and we had a small and pleasant party crowded into our little living space, Bob sacked out comfortably on the couch and the rest of us on chairs and the floor.  The group did a quite impressive rendition of happy birthday and we ate the delicious cake and talked for about an hour or so.

So a day of typical contrasts, waiting and frustration, then compensation and good company.

We are planning to have more of a birthday at another date, maybe when we can also catch up on Sam’s birthday, which took place while he was in China.

Tomorrow, the 18th is a sad memorial service for our classmate and friend Stephen Mantell. Stephen and I were in high school together, then both left PDS early to go to Princeton and both turned 17 fall of our freshman year on the same day.  So many people do not make it through the medical morasses that beset us. his courage and spirit inspired many.  He will be greatly missed.

One thing I learned watching a LOT of movies during my unintended seven year Hep C sabbatical is that there comes a point in almost every American film – usually about two thirds through – when we are subjected to a “passage of time montage.”  (I also learned this from Roger Ebert and Nell Minow).

At the beginning Drums Along the Mohawk, Henry Fonda meets and marries Claudette Colbert, they move to the Western Frontier (the Adirondacks) they pick a place to set up a farm, and encounter the evil English agents lurking around.   After a hopeful few months their farm is torched.   But, full of pluck, they move to a new farm, rebuild, pull together with their neighbors, and erect a local fort to boot.  

That’s where the montage comes in.   You don’t actually see them planting and sowing, felling and chopping – you see short snippets of footage in which tedious activities are summarized in a few shots of sped-up time.

In other film montages, pages fly magically off of calendars, businesses rush from the first gusher to huge fields of oil wells (Giant), progress rolls by rapidly marked by new furniture, stylish clothes, and general invigoration.

In films like It’s a Wonderful Life, George Bailey’s five-and-dime bank grows, several babies are born and Donna Reed, with her hair tied up in a kerchief, single-handedly scrubs and paints the old Granville house, where kids used to throw rocks to break windows, into the Bailey’s dream home.

In a date movie, we see the couple going to the movies, and a restaurant, and feeding a horse in Central Park, and getting caught in the rain, and then maybe moving boxes into a new apartment.

I thought about this last night when pondering my own slow and uneventful progress after the liver transplant.     Several of you have written and asked us how things are going.   The first days were exciting!   What news since then?   My first thought: I need a passage of time montage showing me progressing in leap and bounds.

Unfortunately, as we know, this is not the normal pace of life.  I am making progress but it seems tediously slow.   In one sense, I am being absurd: August 10 marked the ONE MONTH anniversary of the transplant.

My liver numbers – the key indicators of whether the liver is growing and doing its job coping with the hepatitis C that is still in my blood stream – are sliding around, sometimes happily, sometimes in slightly never-wracking directions.   More tests are coming up to get a better picture, including a liver biopsy.

 But there is not much to report each day.   On Monday, Wednesday, and Friday Anne and I go in for clinic and I have blood drawn.  Then we often see a different kind of specialist. 

 Many of our discussions are about how to reduce the drugs I am already on .   This is like to trying to rebalance a mobile in a steady wind.   If the anti-rejection drug goes down (Prograf), you have to give more, which gives you tremors and strips electrolytes out of your system, which triggers horrific, red-hot-poker-through-the-thigh cramps, which requires pain killers. 

So I try to push up the hydration and the electrolytes.   But some electrolytes, in excess, can make me tired.   Eventually that settles down, but in the meantime my legs have sometimes taken to swelling to twice their normal size, so I look like the Michelin tire man from the waist down.   

 I often have to sleep on my back with my legs pointed to the ceiling and and during the days I sometimes wear the tightest support hose we can find (a little uncomfortable in the Georgia weather).   And while I am feeling tired I am supposed to go for walks wearing the support hose to teach the legs to absorb the fluid.

Oh, and did I mention the 45 minute bouts of hot flashes and itching in the middle of the night? 

I am leaving out the really annoying symptoms that afflict the intestinal system, as my stomach, bile, liver,and intestines, decide whether they are going to work out a decent relationship or simply go on various kinds of rolling strikes for better working conditions.  

Of course I am still on a huge boatload of painkillers, which I must lower very, very gradually.  If I run into too much pain, I have to take some additional “breakthrough” meds that help in the short term, but which slow down digestion.   So then I take medication to loosen everything up, but I hope that this doesn’t loosen me up too much and thus make me dehydrated (see red hot harpoon problem, op cit.). 

So you see, most our imaginary passage-of-time montages would be less than charming.  The Bob-and-Anne-and-Kate-wait-for-the-liver to heal sequences would wobble down the line between humorous and disgusting. 

In the meantime, the doctors want to make sure that I get plenty of exercise and eat a lot of different kinds of foods, especially proteins, in the form of meat, fish, cheese, whey powder, or whether my finicky stomach will accept.  

Which is why I am sometimes up at 4:00 AM trying to decide if three bites of left-over General Gau’s chicken, combined with a teaspoon of Lactulose to loosen things up, would be the perfect combination to give me enough energy tomorrow to go hobbling around in my support hose?

For Anne, this means lots and lots of trips to the washer and dryer in the basement, and for Kate the whole process is understandably disturbing.   Last night, in a perfectly legitimate fit of unhappiness, she said “I thought that after the transplant you are going to be a lot BETTER and that we would be able to do a lot more FUN THINGS and instead Mommy is having to take care of you ALL THE TIME.”  

She is absolutely correct: our expectations were a little out of whack and it has been particularly challenging for her.   Every single person she meets asks her how I am doing, and for an eleven year old girl – even one who loves her father – that is tedious.   (Hint to those who see her: "so Kate, what fun things did you get to do this summer?  And wow, sixth grade starting this fall … you must be looking forward to a bunch of new activities!")

During the day Anne makes her daily pilgrimage to the local pharmacy and the swims her daily half mile; Kate practices going off the high diving board; I take three or four naps; and we enjoy meals – as I have energy – with the Gunnemanns, the Willises, Bessers, the Sandlins, and others.   Some good friends, like the Newmans and Knechtles have oddly selected the end of August for their vacations!

I think this will give you a complete enough picture as to why I have not been writing more frequently. 

Two nights ago Anne, Kate, and I watched Ground Hog Day (which Kate had never seen), and in this movie, with its wei
rd premise that Bill Murray wakes up every morning on February 2, we find some slight parallels to life at Mason House.

During Bill Murray’s time among the good-hearted people of Punxatawney, he adopts different strategies for breaking the spell, but none of them works until he recognizes the reality – one that St. Augustine could have taught him — that time is a kind of illusion, and that is only when we think about the kind of life we are living within that time do we become free from it.

That being said, we are still hoping that over the next two weeks or so we will reach the end of this unusual and important summer, say goodbye to the wonderful people who have taken such good care of us, and return to our home and to our new lives in Somerville.  And to our cats, Harriet and Whimsy, whom we miss very much.

And, now, if you wouldn’t mind if I stepped outside to cue the upbeat “Mason Guest House Passage of Time” montage….

I also should mention that I had the opportunity to meet the extraordinary young woman who donated her liver to me – in fact, we have met three times, the most recently earlier today when I visited her in the hospital.   She had been discharged a few days ago but has had to to be readmitted from some additional treatments that the doctors feel confident are well within the ups-and-downs of transplant response.   The hospital is preparing a description of the procedure and of both of our cases, and when that information is released I will post more about her here.   She is a woman of energy, humor, and pluck – charming and funny and full of life.   When at one point I tried to express – as I know I will many times in the future – a heartfelt thank you, she said “oh, of course — any time!”

For me an important milestone will be when I am fully detached from the various tubes and bags that I still have to wear under my clothing, devices designed to remove or introduce fluids in various direct ways.   And my truly impressive abdominal scar is held together by an array of closely placed staples which looks like a long zipper on a sleeping bag.  They should be in for another week.   Kate has made me promise that no matter what I do in the future, I must never appear at the pool or beach without my shirt on.   I have promised her that I am going to investigate one-piece nineteenth style bathing suits that would cover that up – and in any case are more suitable to my Shrek-like physique.   Perhaps I could piggy-back off the hyper performance swim suit controversy that has been plaguing the international swimming competitions in the last few weeks.

Speaking of Katie, we were THRILLED that after a four week separation, she flew down from Maine with Anne’s sister and family to rejoin us.   We are now staying in the small but lovely Mason House “suite” which consists of two bedrooms, a living room, and a kitchen.    The arrangement is perfect for us, since we can prepare and share meals and relax, and Kate can retreat into the privacy of her nicely appointed bedroom when she has had enough of her parents.   To my eyes Kate, who turned eleven in June, is noticeably taller – her red hair is more blond that it has ever been because of her time in the sun, and now hangs down far below her shoulders.   She looks so much like photos of Anne at the same age that it is spooky.   I am really proud of her for handling the last few weeks with such strength and emerging maturity.   Though she received the loving nurture of both my family and Anne’s, and she was able to enjoy the beauty of both ocean-Maine and lake-Maine, it was not easy, as a young teen, to go through the long-distance apprehension surrounding my surgery and the separation from both of her parents.   She had to stretch and grow in a lot of ways, and I think she is doing an incredible job.

On another and more troubling front, I was startled yesterday morning when I woke up to learn that my mother, Suzanne Massie, had taken a bad fall the day before yesterday and has broken her left arm.   She was in Colorado to deliver a speech as part of the Aspen Music Festival, and she apparently stepped outside in the evening to take in the beauty of the mountain air and stairs.   Somehow she missed a step and fell over, breaking her arm between the elbow and shoulder.   The fracture apparently caused damage to the artery in her arm, so she had to be airlifted by night from Aspen to Denver, where a team of orthopedic and vascular surgeons worked for several hours (longer than my transplant!) to put her back into shape.  My sisters Susanna and Elizabeth flew out to be with her and I have spoken to her on the phone – she is of course, groggy, but in remarkably good spirits.   She apparently keeps telling my sisters that the whole incident was so surprising and unexpected.   I should say so.

Many of you were nice enough to send me warm greetings through the Internet or through cards, and each message meant a lot, so for those of you who know my mother I would urge you to drop her a quick note (she will be in the hospital for 5-6 days at least) at

Swedish Medical Center

501 East Hampden Avenue

Englewood, CO 80113

Apparently she is being well cared for by the nursing staff, but my sisters have been there for 24 hours and they still have not been visited by a surgeon or a physician, which frankly does not speak well to the management of this particular hospital.   Let’s hope that is corrected quickly.   If any of you knows someone out there, please give them a nudge.

So, as my mother used to say when we were growing up, “there is never a dull moment in this family.”   I know you all join me in wishing her a swift recovery.

In addition, we are very much looking forward to having our daughter Katie with us next week.  She is getting tired of the Maine family scene and misses her parents, as we miss her.  We are making plans to go to the Atlanta Aquarium together, I will take her to the zoo and she wants us to all go out to lots of movies together.  Her brother John has been checking in with her regularly and that has been great.

The days are quiet here, with some moving around the guest house, a little email catching up and a visit from Jon or Allan or Nancy. Jon and his wife Karin have twice brought us delicious dinners and Jon has come by to talk ethics and economics with Bob in the afternoon.  I get in a swim or some errands.  Bob is clearly recovering, able to sit longer and walk more each day. He does “laps” around the guest house first floor and walks me down the path as I go to swim.  He marvels that the bouts of cloudiness are gone now. He alternates between being up and around and sleeping, which seems just right.

But a few days ago was typical of another kind of day for me. We had a clinic visit all morning. Then I went to fill a prescription for pain medicine at one of the local CVS stores. The ‘scrip was written in a dose the pharmacy did not carry and since it is narcotic pain medicine one needs an exactly correct written ‘scrip to get it filled.  This meant calling the clinic pharmacy nurse and having him track down the doctor and making a trip back to the clinic, all before people left for the day. Bob was at the very end of his supply of this critical med so it could not wait until another day. I accomplished all this and left the clinic with the valuable piece of paper and zipped to the closest CVS where they confirmed they had the medication. But…there was a problem with the insurance. The pharmacist called me over to say the insurance company would not authorize the medication until… the next day. I was so relieved he did not say next week!  I also knew this was a 24 hour pharmacy from having had to make a similar ridiculous medication run a few days earlier. So, I asked, when exactly does tomorrow start?  Home again, and then back to the pharmacy to be there just after midnight to finally get the needed medication so that Bob could sleep through the night. That was my pharmacy day.

Today I hope we can take a small jaunt to see an exhibit in the art museum next to the hospital, where they have a collection of photographs of the initial discovery of King Tut’s tomb.  We are avid fans of the Amelia Peabody mysteries by Elizabeth Peters including a fictionalized account of the discovery of the tomb.  It will be fun to see the actual photos of that event.

Even while we are rejoicing in the return of energy and returning to real life we are reminded that it might not have turned out this way. Sadly our dear friend, Michael Ryan, succumbed to his own liver disease last weekend while still waiting for a transplant. Michael found us through this page and shared many issues and interests with Bob, symptoms of liver disease, the trials of waiting, interest in theology, and discernment about what to do with the gifts of this life.  Michael, while tired and quite sick, was applying to divinity school when he fell and broke his hip, went into the hospital and began a steep decline.  Our thoughts are with his wife Debora.

Lots of love to all of you