Bob has been suffering from advanced liver disease for more than six years but has just received a new liver.

Updates on Bob's status will be posted below.

A Very Happy New Year!

January 2, 2011 2 comments

It is exceptionally embarrassing to have not posted anything for a full year! When things have gone well, we have tried to get back to regular life; when they have been harder there was too much to do. Apologies all around.

So now I am sitting by the fire on New Year’s Day 2011! We have had a lovely Christmas, both boys have been home, Sam from his new job with a telecom company in China, John from his senior year at Duke. Katie has just finished her first semester at her new middle school. My RISD semester is done and Bob is getting back to work, consulting and serving as a fellow at Harvard. The struggles of the last few years are rapidly fading. So before they do, let me offer a few thoughts at the end of our long saga.

Bob Massie and Family

As Bob posted last January, his new liver was settling in, the Hepatitis drugs were miraculously proving effective at last and he was beginning to gain strength. Just as we were settling in to believing it had really all worked, he had an episode of rejection in March sending him back into the hospital for another round of tests and adjustments of his meds. He came through that well. It was a sign of his improved condition and state of mind that he kept telling me to keep up at RISD and take care of Kate, he could manage himself at the hospital. He was in for four days but didn’t even really want visitors, preferring to just keep his head down and barrel through it. They soon decided it was a simple matter of adjusting some medication and he was back home and turning his attention back to the worlds of finance, governance and climate change.

For me, though, things were not going to let up. Practically as soon as Bob was back home and doing well, my dad went into New York Presbyterian for a complicated surgery on his back. For weeks my mother, my siblings and I were all taking turns at the hospital. My brother Tom came out from California, my sister Laura came up from Georgia. My other sister Carol who lives near my folks did yeoman’s service filling all the gaps. I “Bolted” down to NYC almost every weekend. We nearly lost him at one point and the hospitalization was long and awful. By early June he was finally back in Princeton, in a nursing home, then back to the house.

As Dad stabilized, I took a few days to accompany Bob to Amsterdam for the Global Reporting Initiative meeting in May. It was amazing to see the delegates from all over the world coming together to talk about the future of corporate reporting. Everyone was thrilled to have Bob there and to see him looking so well. One of his colleagues literally burst into tears when he saw him. It was very moving and gave us a huge sense of the value of what Bob did years ago when he brought together the group that founded the GRI. I was glad I was able to get there too.

The summer flew by with trips to NJ for me and a little time with Bob’s family in Deer Isle. At the very end of the summer we even got my parents both up their beloved place on a lake in Maine. Dad continues to be quite frail but out of crisis. By the time I went back to work at RISD I was pretty worn out.

But the fall brought new challenges and successes. Katie started at a new very demanding middle school and she has done fantastically well. She has risen to the challenges academically, played soccer for school and for her town team all fall, made tons of new friends and kept up with her old ones. She is playing guitar and writing songs, continuing to do musical theater, and has embraced a new sport – ice hockey!

Bob’s health has stayed good and as of his latest check up is doing fantastically well. He has so much energy now it is hard to believe. The miracles continue – his story was in the news again in November when the journal Science put out a story about the HIV research done by Bruce Walker at MGH. As Bruce told us just when the article was coming out they have ”found the needle in the haystack” isolating the genetic trait that determines why some people like Bob are “elite controllers” for the HIV virus.

So we come to the end of the year and as we get ready to embark on more adventures, I have to say a huge thank you to so many people. I am overwhelmed by the generosity and the breadth of all we have been given. And I know as I list these gifts I will forget others of equal value so I put it down and so the post never gets written. But here is a start:

We offer a profound thank you to everyone, including:

    • The members of our families for their unfailing support to us and to our kids. The Massie-Verekers, Tates, and Kagels took care of Katie that summer. Lolly and Martin were by my side all through the surgery and Susanna helped me get the first night’s sleep after it was over.
    • All our doctors. We must start with Bruce Walker and Eric Rosenberg, who became true friends, who met with us when first we had the diagnosis of Bob’s liver disease and helped us understand what we faced. Bruce wept when I called him from the hospital to tell him the transplant had been done. And Eric helped to pick our specialists, navigate the system and took every late night phone call I ever placed to him even though it was not his job. I always knew we had a friend waiting at MGH. And Raymond Chung and his team who has cared for Bob in the truest sense for many years. And to Stuart Knechtle, Winston Hewitt, Chris Hughes, and all the surgeons and the entire staff at Emory University Hospital who carried him through a dark valley and back to life.
    • Kelsey and Sam for their special offerings – Sam helped both of us in the first stages of coming to terms with this disease. And Kelsey for your great generous effort to rally our friends to help with expenses.
    • All our friends who stepped forward to contribute to the trust. It gave us a miraculous peace of mind in a difficult time.
    • The potential donors who stepped forward. This website was started when we began to look for a living donor. Dozens of people came forward in a response that literally took away our breath. We can never thank you enough. A few people went even further; to Bill and Nancy we give special tribute and thanks.
    • Jean, to whom we literally owe Bob’s life. We also thank the anonymous donor and his or her family, who saved Jean’s life and made her gift to us possible; to them we send our gratitude and prayers.
    • All who were standing by ready to jump in if Bob had a transplant call; Jude who was ready to fly anywhere to support me, as well as the Bonseys, Chardes and Hirschis who offered to take care of Katie. Alison who made the trip to Atlanta to help me.
    • Everyone who helped us raise our daughter in difficult times – you smoothed her way and relieved my worries. If ever a child was raised by a village it was Katie. And she seems to prove the wisdom of the approach. The Hirschis have been her second family, and the families of her long time friends, Maya, Natalie others have been there for her so many times when I could not. I always felt confident that she had a place to be when we were not available and it was an unspeakable relief to me. I also noticed that the first offers of help were always to take care of Katie. Charlie and Blyth were there when she needed a home.
    • Our neighbors, and friends who lived upstairs over the years and provided so much support. Ever since the first time I had to take Bob to an ER in the middle of the night and I could leave Katie home safe in bed, the presence of reliable, caring adults in the house has been a gift.
    • The friends and clergy at St James’s, who have given us so much. They stepped forward to consider donation, made us meals, visited Bob, supported Katie, and even provided music that sang us all the way into surgery. Miraculous. There are too many to name here but we thank everyone for the love and community they created for us more than six years.
    • Tim for putting together and maintaining this site.
    • Laurie and Jodi and others who spent time at the house when Bob was not well enough to be alone or care for Katie.
    • The folks at Ceres who kept us in mind, sent visitors and brought meals, over years of waiting.
    • Brad, Marcy and Ed who looked after our house renovation while we were away in Atlanta.
    • My colleagues at RISD, who were understanding of my situation and tolerated my odd hours and shifting focus.
    • Gwen for bringing the Princeton community together for us and linking us to Stuart and Emory.
    • Our friends in Atlanta: Nancy and Valerie, Alan and Gretchen, Jon and Karin, Jim, Matt and Heather for making our time in Atlanta so rich in fond memories.
    • Everyone who stood by us as we put our lives back together, as Bob found new work and projects.

      One of the most powerful discoveries of going through an experience like ours is that, in the end, the greatest blessing is to be able to return to a normal life. We salute and honor everyone who helped us through this long and sometimes very hard journey. We wish there were some stronger way to say the, but the simplest words must suffice: from the bottom of our hearts, we thank you all.

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      Steady Improvement in the New Year

      January 25, 2010 6 comments

      A number of people have called or written me recently out of concern that my silence has been the sign of difficulties that might have arisen.   I am pleased to report that the opposite has been true; I have not written because I have continued to improve and I have actually started to get busy!

      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.

      Tracking Down A Problem and Exploring a Solution

      December 6, 2009 1 comment

      I haven’t written for two months because we have been involved in a long series of tests – a kind of slow motion medical detective story – to get to the bottom of why some of my numbers had deteriorated and others had not improved as rapidly as doctors had hoped.   I have been in and out of the hospital for various procedures – and a few dozen blood draws — that didn’t seem worth writing about until I had something solid to report.

      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 10th), I am continuing to improve slowly each week, and for that I am grateful.

      Coping with Pitch, Roll, and Yaw

      October 6, 2009 Leave a comment

      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.

      Another Stay at Mass General to Disentangle an Important Puzzle

      September 16, 2009 Leave a comment

       

      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.

      Home again. Still working hard on recovery

      September 8, 2009 Leave a comment

      Sorry it has been such a long gap since I last wrote. It is harder to post from home when there is so much to tend to. We had a delightful homecoming. We were met at the airport by Sam and John and who whisked us and all our luggage home, with help from Dana.

      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!

      Headed Home and News Clips on Domino Transplant

      August 21, 2009 Leave a comment

      We have been cleared for take off. We will fly home tomorrow to continue Bob’s recovery in our own home. Hooray!

      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