Another Stay at Mass General to Disentangle an Important Puzzle

 

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.