Archive for November, 2010

November 30, 2010

11-29-10   Monday  Day +33

 Status: 8.5/10.  I can tell a difference between now and a week ago.  It’s small, and still a long haul up the fatigue ladder.

Events:  The kids came up yesterday and great to see them.  Labs today in IPOP were  continually increasing, and they put us on a permanent M-W-F schedule!  So things are going well.   

Comments:   Stamina and patience.  Just slow steady progress with my appetite and taste buds.  I’ve lost a total of 60 lb since getting pneumonia last January, and now below my ideal weight.  My work will getting it back up.

  We’ll start reporting M-W-F as well unless something intervenes.




November 28, 2010

11-27-10   Saturday  Day +31

 Status: 8.5/10.  Woke up feeling better than I have in a long while despite having to make an 8:30 AM IPOP visit.

Events:  Labs are great, ever increasing, and my neutrophils are now in the normal range.  I’m officially now on an every other day schedule – terrific progress since we thought we’d be just getting out of the hospital by now.  Met the IPOP attending, who’s a graft vs. host expert, and he of course examined me carefully looking for rashes.

  My youngest brother Henry is up for the day, letting Lisa take a well-deserved break.  She’ll come back up tomorrow.

Comments:   Still with taste issues.  Interesting that I can taste the sweetness of sucrose (common table sugar, from sugar beets or sugar cane) but not fructose (fruit sugar).  Grapes, blueberries, oranges have no sweetness.

  The reason that Chimera has always stuck in my mind is that my final exam my senior year in comparative biology had one question.  “Describe an animal (bigger than a breadbox) that had the best chance of survival in the year 10,000 AD.”  True of most MIT exams, the questions had nothing to with anything discussed in class.  The point was to use what you learned to answer a new question.  I described an animal using the best traits from many species and called it a chimera.  Nowadays, I guess students not only have to describe the creature, but create it and bring it to class.

  We’ll give everyone a day off and report from IPOP on Monday.



November 27, 2010

11-26-10   Friday  Day +30

 I hope you had a wonderful Thanksgiving.  Your comments were a big component of our joy.

Status: 8.5/10.  After two days off, we’re going back for an IPOP (rhymes with IHOP) visit tomorrow morning.

Events:  Every visit is accompanied by hematology and chemistry labs, but tomorrow they’ll draw a sample to see how much of my blood is from my new marrow and how much is still from the old.  It’s called a chimerism study (from Chimera, the fire-breathing monster in Greek mythology).  The monster was composed of many animal parts (a lion, a snake, etc.) and finally dispatched by Bellerophon riding the winged horse Pegasus.

  Lisa and I drove to see Ft. McHenry (of Star Spangled Banner fame).  Now I should let you know that our ambulations might not be what you think.  Most of the day is spent in our apartment, the only place other than our IPOP cubicle where I don’t have to wear an N-95 high efficiency mask (even riding in the car).  So we are pretty well confined.  Too many people with colds and flu out there.

Comments:   Lisa, as I’ve said so many times, is a godsend.  She washes clothes, sheets, and towels every day.  She fixes meals (and nudges me to eat), gives me my complicated med schedule, deals with the kids, and takes care of every aspect of both of our lives.  She’s never once whined or complained (as opposed to me) and starts every day with a positive attitude.  It’s one thing to love a person, it’s another to have found such a wonderful partner.

  Enjoy your weekend.  We’ll report results tomorrow.



November 25, 2010

11-24-10   Wednesday  Day +28

 Status: 8.5/10.  Great news today.  In addition to my counts still increasing, I’m in what is called “absolute neutrophil recovery.”   And what may be even better, they’ve changed my schedule to every other day at IPOP.  We had hoped to perhaps be out of the hospital by Day 30, and here we are at Day 28 going to every other day since we are doing so well.  In fact, they’re giving us two days off because of Thanksgiving.    Still dealing with taste and appetite changes and constant fatigue, but I’m reassured by the staff it just takes time.

Events:  Every day at IPOP you are asked to bring in your meds (takes a large gallon-sized Ziploc for us).  They just want to make sure everyone is on the same page every day.  And we also bring in a blood pressure cuff that was given to us for our individual use (they don’t want any shared equipment).

  Brother Hank and crew came up to Baltimore just to see the city, but dropped Rachel off for a visit.  So good to hug her.  Hank had told her numerous stories about my childhood, which I did my best to characterize as urban myths.  Ethan was at the Kennedy Center rehearsing for his performance in the Nutcracker tonight.

Comments:   Lisa and I will have Thanksgiving together tomorrow, and I will remember what I have learned over these last 7 months – that there is nothing, absolutely nothing, more important than the love of family and friends.  For those of you traveling, may you be safe.  And for those of you spending time with your families and friends, remember to tell them you love them.

  We’ll take the day off tomorrow, and talk to you on Friday.



November 24, 2010

11-23-10   Tuesday  Day +27

 Status: 8.5/10.  Made the mistake of taking a long afternoon nap yesterday, then couldn’t fall asleep at bedtime.  But it was made up for by great lab reports.  Everything is increasing, even my hematocrit despite having about 20 cc of blood drawn from me each day.

Events:  Another simple day in IPOP except for some more nasopharyngeal cultures to make sure I’ve cleared my cold.  Not as bad as last time since I knew what to expect.

Comments:   My brother Hank is in town, and he’ll give Lisa a break this weekend and become my caregiver.  She deserves much more than a break for what she’s done.

Enjoy the holidays,



November 23, 2010

11-22-10   Monday  Day +26

 Status: 8.5/10.  A good day, and even better when we saw our labs!  Red cells, white cells, and platelets all climbing.  They’ve even moved our appointments to the afternoon presuming short visits (“Labs look good, go home”).

Events:  Most of the day is centered around the timing of my meds.  Some have to be taken an hour before or two hours after a meal, some with food, some at specific times – takes an Excel spread sheet.

Comments:   To answer two questions : Not long ago patients would spend 60-100 days after transplant in the hospital, even after their counts were in a safe level.  You were sleep deprived, fed bad food, exposed to antibiotic-resistant bugs, and driven toward psychosis.  The concept at Hopkins was to release you from the hospital environment and be seen daily in their InPatient/OutPatient Comprensive Care Center (IPOP).

  When Dr. Henry Miller, my fraternity little brother, and I went to medical school what we knew of immunology was little (or maybe I slept through the lectures).  Basically there were T-lymphocytes (“T” because they were produced in the thymus gland) and B-lymphocytes (“B “ because no one knew where they came from, but in chickens they were produced in an appendix-like organ called the Bursa.)

  When viruses and bacteria invade the body, the first reaction of the immune system is a general “call out the Marines.”  Just get men and guns to the beachhead and head off whoever is attacking until we get reinforcements.  During this holding action, a number of the invaders are captured and interrogated (makes water boarding look like taking a refreshing sip).  “Who sent you here?  How many of you are there?  What weapons do you have?  Guns?  Tanks?  Bazookas?”  With this new intelligence the B-cells  direct the making of specific antibodies to fight off the invaders.

   More importantly, the immune system creates a list of each attack in special cells called memory cells that have the blueprint to make specific antibodies against those invaders.  The next time those same organisms try to invade the body, antibody production is all ready to go.  That’s why if you’ve had measles once, you won’t get it again – your body already has antibodies against it.

  The question is when this is all done what memory cells will I have?  Will I still have my old ones?  Will I get my donor’s?  The answer is it all depends.  It seems most people lose most of their memory cells, and I don’t know if they get any from the donor.  Bottom line, I’ll most likely have to be revaccinated against a dozen or so infections.

  Although I get elated to see my counts go up, I get much more so by reading your comments.  They have real healing power.  There’s no way I can ever say thanks.



November 22, 2010

11-21-10   Sunday  Day +25

 Status: 8.5/10.  Slept late for our 10 AM IPOP appointment.  Today was one of those nice short visits because we only had to wait for our lab counts to come my back showing everything looked fine.

Events:  IPOP is focused on just a few key complications and their early detection.  The most common early on is dehydration (you have to work on thinking about drinking).  So they take your blood pressure sitting and then standing up.  If your pressure drops upon standing your total fluid volume is low, and you need to drink more.  If it drops significantly then you might receive intravenous fluids right there.

  The most common event is infection.  They take your temperature there, and we take it 3 times during the day at home.

  And the first signs of graft vs. host disease are usually in the skin (a sunburn-like rash).  So they examine you all over.

  And lastly, they simply want to know if anything has changed from the day before, going through what doctors call a “review of systems.”   “Have you had any pain?  A sore throat or nasal drainage?  Nausea or vomiting?  Shortness of breath?  Pain or burning on urination?  Numbness or tingling?”  A head-to-toe exploration.  Any positive answers lead to more detailed questions.

Comments:   My changes are so incremental that it’s difficult to note improvement day to day.  A week from now I’ll be able to see an improvement in appetite or fatigue, but now it’s just tiny changes.  But grateful for the trend.



November 21, 2010

11-20-10   Saturday  Day +24

 Status: 8.5/10.  A good night’s sleep, but could have used more – had to get up for an early appointment at IPOP.  The moment-to-moment fatigue is difficult to describe.  A fellow transplant patient I spoke with before the procedure described it as having a 360 lb rock laying on your chest.  Perhaps I’ve been too generous on rating myself.  At least, I understand better why everyone says it take a year to feel normal again.  I’ll have to be patient with the incremental progress.

   What buoyed up my day was seeing my blood counts.  Platelets, the smallest blood elements, are produced by the biggest cells in the bone marrow, the megakaryocytes.  They are huge.  And looking at a bone marrow stain you see where they get their name.   But they’re also the most delicate cells.  First to go when injured,  and last to come back.

   In my case, it’s always been a matter of using platelet transfusions to keep my head above water.  The docs set a goal, for example of 20,000 (normal 150,000-400,000) with the idea of keeping it above that number with periodic transfusions.  It’s like having a slowly leaking bucket with the goal of keeping it a quarter  full.  You’d pour in some water, and when it slowly got down to the quarter line, you’d pour in some more.  Each visit you’d watch your platelets drop and drop, and when you got close to your goal you’d get a transfusion.  Today was the first day throughout all of this that my platelets actually increased on their own!   The transfusion didn’t come in a plastic bag, it came from my new marrow.  Lisa is amazed that these little guys had found their new home and starting doing their job.  Actually, I’m amazed as well.

Events:  IPOP is just a hallway away from the hospital floors where I’ve spent my time at Hopkins.  It has a small waiting area and then bilaterally symmetric are two nurse stations and individual patient areas (some with lounge chairs, some with beds).  My nurse for the day was Mary, who had been charge nurse on the floor when I was having mucositis.  She remembered me, and although I didn’t remember her through the haze of that time, I found her to be smart, kind, and comforting.  As far as smarts go, the nurses in IPOP remind of the PGA commercial – These Guys are Good.

  Learned of my lab results (Mary was just as excited) and got a little potassium by IV.  That’s what IPOP is really good for – a daily checkup and tune up.   Lisa got a chance for some grocery shopping, and I came home for a nap (I tell ya, this fatigue thing is real).  Also got another prescription, this one for Bactrim, which I may be taking for 6 months.  It’s to prevent Pneumocystis pneumonia.  Pneumocystis was the microorganism that opened everyone’s eyes to AIDS.  It’s a weak fungus that perhaps 50% of normal people have in their lungs.  But if you are immune-suppressed (like an AIDS patient or like me) the little bug can gain a foothold.

Comments:   Lots of new rules to learn, lots of food I cannot eat, lots of places I cannot go.  I wear a surgical mask everywhere but in our apartment or in my individual IPOP cubicle.  Luckily our IPOP appointment isn’t until 10 AM – a chance to sleep in!

  For those of you who are already on a Thanksgiving break, do spend a moment thinking about what you are really thankful for – I’m doing that as well.



November 20, 2010

11-19-10   Friday  Day +23

 Status: 8.5/10.  Got my Get Out of Jail Free Card!  Still on parole though with daily visits to IPOP beginning tomorrow.  Remarkably fatigued, but taste buds seem to be coming back as well as sense of cold.  As a matter of fact, leaving the hospital getting into the car was a chilling few moments despite a 55 degree temperature – I’ve lost my thin layer of insulating fat, and now weigh less than I did going off to college.

Events:  Lisa and I, with the amazing help of cousin Blaine Charak, moved us into an apartment just a few minutes away from Hopkins.  Took the first solid nap I’ve had in more than a month and in a real bed.  Lisa had delivered a large Thank You cake to the floor staff – as you can guess it was gone in seconds.  In turn, we brought with us some 20 bottles of pills, some once a day, some twice, some 4 times a day, and we’re doing some IV antibiotic infusion for another day (the price you pay for the early release program).

Comments:   Now we’re talking a new venue and new rules.  More about that later, but looking to get to bed early and see what IPOP is all about.



November 19, 2010

11-18-10   Thursday  Day +22

 Status: 8.5/10.  Feeling somewhat better today.  The viral results from the naso-pharyngeal exploration showed a rhinovirus (common cold).  Remarkable that the identification comes back so fast – they no longer have to wait on cell cultures but measure viral DNA directly using the now famous polymerase chain reaction (letting stands of viral DNA multiply into huge numbers that can be measured quickly)  Not quite as fast as CSI would have you believe, but amazingly fast.  Taste buds are still gone, which is biggest impediment now.

Events:  Told we are set for discharge tomorrow.  Also told by several people that they don’t want to see anything funny tonight – no falls, no fevers!  Had a surprise visit from old friend and fellow Norwood School Board member, Dr. Len Goldman.  Such a delightful guy, and piece of sunshine to my day.

Comments:   So, about to enter the world untied to an IV pole (you can’t imagine how exhausting taking a shower is with one hand to hold the spray nozzle and do everything else as well).  Also getting a sense how different this next year will be – but glad to be able to make the journey.