August 14, 2011

8-14-11 Sunday   +9 months  

(Ghost writer Lisa at work- so any medical errors are hers!)

Status.  Weekends are slow around the hospital, and I am right on that same pace, just lying in bed and trying to get better.

 Events:  The nurses have been great about trying to let me sleep at night.  Since I have not had any fever they are willing to be a little looser on the “must take a patient’s vital signs every four hours” routine. That means I can usually get in six hours of uninterrupted sleep before they feel the need to poke and prod. 

  Breathing remains difficult, especially with any activity (and by activity I mean things like actually sitting up in bed.) I am on nasal oxygen.  

   At home I had worked hard to control my predisone-induced hyperglycemia with careful food intake and medicine.  Here I am unable to really control those variables, and my blood sugar has been all over the map.  So they are now paying very careful attention with lots of sticks to measure the levels, and actual insulin injections to bring the sugar levels down when need be.

   As you can imagine, when you come in to the hospital, they test you for everything.  First was the dreaded nasal swab (not fun)- that was negative for flu virus or anything else.  Unfortunately I am positive for the bacteria C. difficile – these days it’s often a hospital acquired infection that can occur with prolonged use of antibiotics.  I was positive when I was last here, so I was probably still positive when I came in.  They added a medicine (Flagyl) to my already prodigious pill supply.   It also means that anyone who comes into the room has to do the full dress- gown and gloves.  No mask at least.

Comments:   In a very coincidental and wonderful twist of fate – we received a letter from our donor on Friday.  This is our second later from her (we think it’s a she) – and we have sent two letters to her as well.   The donor remains anonymous until the one year anniversary of the transplant, then if both sides agree, they can exchange contact information.  We are so grateful to her.

   Tomorrow the long awaited bronchoscopy-  so they can figure out just what organism is inhabiting my lungs, the better to take aim.

   Have a great rest of your weekend.

Love,

Bruce

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August 13, 2011

8-12-11 Friday +9 months

Status: As you know, I have been feeling less well these last two or three weeks, culminating in shortness of breath for most minor daily activities, which I thought might have been a gastrointestinal bleed, however my visit to Hopkins yesterday confirmed what it really was.

Events: Came in for my routine visit on Thursday, which turned out be anything but routine. I was short of breath even on the ride up to Hopkins, and my initial checks showed an oxygen saturation level (percentage of red cells saturated with oxygen) was 82 % (normal is 95-100 %). When the GVH doctor who we were seeing heard that result, she got quite excited – but not in the way that you’d like a doctor to. She immediately ordered a chest and sinus CT scan, paged my transplant doctor and began the process for admitting me to the hospital. The CT scan, in fact, showed cloudy spots on both lungs. The likely diagnosis is pneumonia, but they’ll find out for sure with a bronchoscopy. More on that later.

They put me on oxygen and eventually headed me up to Ward 5B, the bone marrow transplant ward, which I had happily left so many months ago. The familiar nurses were so kind and welcoming, glad to see me, but not to see me back of course. Doctors started me on broad spectrum IV antibiotics to fight the lung infection. Had the usual restless night in the hospital, which meant I was pretty wiped and slept all day today.

My bronchoscopy was set for late afternoon today, requiring that I not eat or drink anything after midnight. They finally brought me down for the procedure around 4:30PM . The idea was to look in the lungs and take a few snips so they could better identify the organism that’s taken route there – that way they can better target the antibiotic. But as we well know, things don’t always go as planned. Unfortunately there was an emergency in the bronchoscopy recovery room where I was waiting for my procedure to start. A patient went into cardiac arrest.  Thankfully they were able to revive her, but they had to cancel the last few procedures of the day – which meant me. They’ll try again on Monday, and in the meantime just keep pumping me with the big-time antibiotics.

Comments: My transplant doctor wagged his finger at me and told me I should have called him on Monday when I felt faint and ended up having an unexpected rest on the carpet. He told me not to wait next time. Lisa told me she has taken over all doctor calling responsibilities and will not listen to the doctor/patient when he insists she not call the doctor.

To say that I hate to be back here is an understatement. Don’t get me wrong – the transport folks were actually very nice today, the nurses are top notch, I have my private room of course. However, there is no place like home. That said, with cloudy lungs there’s no place like the hospital, so my plan is to let those antibiotics do their work and then get out of here as quick as I can.

The good/bad news is this means a resumption of the blog on a more regular basis for the next few days at least. See, a silver lining in everything.

Hope your summer is more restful!

Love,

Bruce

August 9, 2011

8-8-11 Monday + 9 months

Status:  I’ve gotten a lot lashes with a wet noodle (an old Ann Landers term) for not keeping up my blog more frequently – we’ve heard you loud and clear.  It’s been a rough couple of weeks with this GVH flare up.  Mostly skin and mouth issues, but it exacts fatigue as well.

  Remembering, of course, that your skin and mucous membranes are one continuous surface, from your face to your lips and all the way down the line. That’s why so many diseases simultaneously attack the skin and GI tract.  My big areas of attention are my cracked, bleeding lips and denuded tongue.  I’m on a regimen of frequent flossing, brushing, gentle tongue scraping, then rinsing with a steroid solution, followed by viscous lidocaine to deaden the burning, swish and swallow anti-fungal solution to prevent yeast infection, and finally a coating of steroid cream for the lips, topped off by petroleum jelly to keep things moist, and an anti-fungal cream at the corners of my mouth – quite the routine, but I think we’re making progress..

Events: Today going from the bedroom to the bathroom, I became light-headed and dizzy.  I immediately put my head down and gently crumbled to the carpeted floor. I lay there noting that I was also short of breath, and had a fast heart rate.  It had all the feelings of a previous episode of low blood pressure from a GI bleed.  Although there’s no other evidence of GI bleeding, I’ll be interested to see what my hematocrit is when we visit Hopkins this Thursday for lab checks. 

Comments: When you run marathons you learn there are lots of ups and downs.  But if you want to make it to the finish line you have to just keeping moving ahead.  We’ll make it through this little bump in the road and continue on.

Love,

-Bruce

 

July 19, 2011

7-19-11 Tuesday  + 9 months

Status:  Improving and feeling better after the GVH flare up.  Still with some resolving mouth issues, but they too are improving. 

Events: At Hopkins yesterday for #5 of 6 prophylactic injections of chemotherapy into the spinal canal, and a visit to the GVH docs.  Lab numbers looked good.  Got a prescription of oral swish and spit steroids, a swish and swallow anti-fungal, and some viscous lidocaine (syrupy novocaine) to coat and numb my tongue (add 3 more to my list).

  I went down to the radiology suite for my lumbar puncture (suite isn’t quite the right word for the universally dim basement radiology corridors that look like they are discarded sets from old Harry Potter movies) and met the doctor who was going to perform the procedure.

 Realizing this was July when interns, residents, and fellows turn over (everybody is new), I asked who he was and where he was along the path.  He said he was a 1st year fellow, meaning he had just completed his residency and was just learning neuro-radiology.  I asked him how many of these procedures he had done.  He was silent for a moment and then said, “I’ve done some.”  I kept looking at him, and he said, “A few.”  I was looking for a ballpark figure … a dozen, 20, 50?  Then he says nervously, “I really haven’t kept count.”

 This was not the answer I was looking for.  Better would to have said, “Well, not as many as I will have done at the end of the year, but you’ll have no problem, and Dr. _____ is here (the attending physician) who’s done more than you can count.”

 As it turned out, I was glad the attending was in fact in attendance.  I re-iterated that he should put the needle in at the L2-L3 interspace and just tell as he went along what he was about to do.  Well, that worked for about a minute.  He did say that I’d feel a sting a bite from the numbing skin injection, but barely a hint thereafter.  Was that him marking a spot with his pin or was the LP needle going in.  Since you are lying face down on your stomach, the only inputs you have are sensations from your back and the conversation between those doing the procedure.

  After 45 minutes of continual coaching from his senior, it was obvious he was having a difficult time.  And at last the attending said, “Let me try.”  Those were welcome words.  Within a few moments the needle was in the right spot and collecting spinal fluid.  One of my nurse practitioners came in and expertly infused the chemotherapy, and off I went on a gurney to lie flat for 2 hours (helps prevent post-LP headache).

Comments: One of the hardest things to say in any endeavor is, “I don’t know.”  To be comfortable with feeling that you don’t have all the answers, and to realize that the best response is not to substitute some b.s. to try to smooth things over, but to search for the answers.  One of my heroes, Nobel laureate Richard Feynman said,   “The first principle is that you must not fool yourself, and you are the easiest person to fool.”

  An ancient Zen Monk named Zuigan used to start every day looking into a mirror and saying to himself out loud: “Master, are you there?”  And he would answer himself, “Yes sir, I am!”  Then he would say, “Better sober up!”  Again he would answer, “Yes sir! I’ll do that!”  Then he would say, “Look out now; don’t let them fool you!”  And he would answer, “Oh no, sir, I won’t!  I won’t!”                                                                         

 I’m doing well enough that my next scheduled checkup is next month, but I’ll keep you up to date every week until then.

Love,

-Bruce

July 13, 2011

7-13-11 Wednesday  + 8 months

Status:  Dealing with a flare of GVH, mainly mouth, lips, and tongue – negotiating pills, food, blood sugars is more than a full-time job.

Events: At Hopkins yesterday for an endoscopy to investigate my difficulty swallowing.  The day was somewhat complicated by the fact that I could have nothing by mouth after midnight, which made for some fancy dancing in regard to morning blood sugars and meds.  Luckily the procedure was scheduled early but necessitating us leaving at 6 AM to drive to Baltimore.

 After registering, you exchange your clothes for two gowns (one traditional gown – expose your tush with back ties – and another you put on like a jacket to cover the back).  Works well for both etiquette and warmth.  Why doesn’t everyone do it?

 They insert an IV line and use Propofol as anesthesia, which has the advantage of being short-acting (the effects stop in just minutes if you stop the medication), but still had 4 people watching me, and hooked me up to a monitor for blood pressure, pulse, blood oxygen levels, and gave me nasal oxygen. [None of which were available to a more famous person given Propofol].

 Knowing about my blood sugars they took a fingerstick beforehand, and even coated the mouthpiece you wear (like a snorkel mouthpiece) with novocaine gel because of my chapped lips.  The mouthpiece is really there to prevent you from biting through the expensive fiber-optic endoscope.

 As I expected, they found a stricture (narrowing) of the esophagus about a third of the way down.  The endoscopist, a professional with a great bedside manner (she did a previous procedure on me for GI bleeding), said she couldn’t even get the endoscope through it.  She used a balloon to expand the opening, and now swallowing is much easier.  If I have more trouble it’s easy to do it again.

 Stayed on a liquid diet the rest of the day, still navigating food and blood sugar seas, and now moving on to soft foods. The dilation is a big help when taking the big pills that populate my 28 tablets and capsules daily.

Comments: Next visit on Monday for the 5th of 6 post-BMT lumbar punctures.  Hope to be feeling better by then, and hope you enjoy a cooler weekend.

Love,

-Bruce

 

July 11, 2011

7-11-11 Monday  + 8 months

Couldn’t help responding to good friend Dr. Rick Davidson’s comments about today’s medical residents and the way it used to be when we served as house staff together at Vanderbilt.

  We rotated thru 4 hospitals to give us a breath of experience: Vanderbilt University Hospital (generally more complicated, esoteric, and mysterious cases), VA Hospital (lots of liver and lung pathology – read alcohol and tobacco), the private upscale St. Thomas hospital, and the public Nashville General Hospital (affectionately called the “Nasty General”).  There was much less supervision at the General, and consequently much more responsibility.

  Two episodes I remember vividly (not forgetting for a moment all those Friday nights in the ER).  One was a older man who came in with dangerously high levels of potassium (it’s also what’s put in the IV used to stop the heart in lethal injections).  I asked my resident what I should do, and he said, “If I were you I’d get it down.”  So for the next 6 hours in the middle of the night I was all alone, looking up everything and doing everything I could to get it back to near normal.  I finally stabilized the patient without knowing that my resident was calling the nurse about every hour checking up on me and ready to intervene if I had lost my way.  A good confidence builder.

 Later as a more confident resident I was assigned to the screening clinic (affectionately called the “Screaming Clinic”).  It was flu season, and we took all comers (“come on in, sit right down”).  I think my record day was 130 patients.  I had already written several hundred prescriptions for decongestants, anti-histamines, cough syrups and the like, and after an all too brief check of their lungs (to rule out pneumonia), heart (rule out heart failure), examining their throats and lymph nodes (rule out strep throat, infectious mono, and the like) I’d just tear off a sheet from one of the prescription pads for each of their symptoms.  I didn’t think any of those nostrums would help a cold or the flu, but a kind word, “I hope you feel better,” and a promise of continuing care, “Come back if it’s not better in a few days,” I hoped made them feel that their discomfort was addressed.  It was conveyor belt medicine, and of course if you had an inkling something else was going on, you’d order some tests and follow them up. But I’m sure seeing hundreds of patients each day for weeks, I made some mistakes.  I just spent the days trying not to get sneezed on.

  Today’s New Times has an article about one medical school’s attempt to sort out from its applicants more empathetic, thoughtful students.

http://www.nytimes.com/2011/07/11/health/policy/11docs.html?hp

  When I applied to med school, one of the sections on the MCAT entrance exam was on general information (the arts, history, literature), an attempt I believe to find well-rounded students, not just those who had their noses buried in a biochemistry book.  Sadly they dropped that section soon afterward.

  I took the MCAT again about 20 years later and wrote an editorial in JAMA critiquing that decision and other changes that I thought were not productive.  We’ve now constructed a system that favors the high brain-powered student who can make the best GPA regardless of whether that person could make the best doctor.     

I’m a Hopkins tomorrow for an endoscopy – will let you know the results.

Love,

-Bruce

July 7, 2011

7-7-11 Thursday  + 8 months

Always appreciate the comments – erudite, clever, supportive.

 Status:  Spending most of my days dealing with the routine of taking meds, watching blood sugars, and fixing special meals.  It is indeed a full-time job.

Events: At Hopkins this week for a rescheduled eye check.  Restasis eye drops have been of great help, and I actually make a few tears -tested at 20/25 vision.  Enjoyed chatting with my ophthalmologist (a specialist in graft versus host disease and dry eyes).  We joked that this was the first of July with new residents.  He said he could always tell how the group would be when he lets them decide their own call schedule.  Last year’s group finished in 15 minutes and went out for a beer.  This year’s group took 2 hours – looks like he has his work cut out for him.

  He also talked about how things have changed for these “millennials.” We had both  worked in “every other night” residencies, meaning 36 hours on, 12 hours off, 24/7, for 3 years (when giants walked the Earth).  Of course, we were sleep-deprived, irritable, and mistake prone, but the old saying that the only problem with an every other night program was you missed seeing half the patients.  Now residents have limited work hours, and when it’s time to go home that’s what they do.

  His other interesting take, which I have heard from a number of folks about kids this age, is that there is a sense of entitlement, an ethic that everything a young person does deserves a prize.  He mentioned a recent cartoon showing a young boy running to his mother with a gigantic trophy yelling, “We lost!”  He mentioned a resident he had to have a chat with who wasn’t doing so well. The resident was flabbergasted and in tears because no one had ever been critical before.

 My own anecdote about this generational disconnect occurred when I was giving a course on investigating a food-borne outbreak to a group of new Price-Waterhouse hires.  The purpose was to take them out of their skill set and learn how to think, organize and analyze.  I had given them all the data, and asked them to set it down in an organized fashion (names, ages, day of illness, foods they had eaten, etc.) The entire class of 100 just sat there, and I said, “You can start now.”  No one moved, finally a hand went up, and a young woman said, “We didn’t bring our laptops so we don’t have our Excel spreadsheets.”  I wonder how they’d do on Survivor without laptops.

  And I’m reminded of the famous quote:

“The children now love luxury; they have bad manners, contempt for authority; they show disrespect for elders and love chatter in place of exercise. Children are now tyrants, not the servants of their households. They no longer rise when elders enter the room. They contradict their parents, chatter before company, gobble up dainties at the table, cross their legs, and tyrannize their teachers.”

   It is attributed to Socrates, 2,500 years ago. Plus ca change, plus c’est la meme close.

 

Comment:  They’ve changed my barium swallow scheduled for next Tuesday to a direct look with an endoscope.  If they find a stricture accounting for my difficulty swallowing (smart money is on that) they may be able to dilate it right then – that would be a relief, but I bet I’ll be a little sore.  Wish me luck as we smack down one more whack-a-mole.

 Love,

-Bruce

 

July 2, 2011

7-1-11 Friday  + 8 months

Status:  Doing OK.  Gained about 5 lbs. Still fiddling with my blood sugars, and plan to talk to a diabetologist for some sage advice.  Having some difficulty swallowing and have scheduled a Barium swallow to see what’s going on.  Didn’t intend to attempt a Guinness Book of World Records for most lab tests and procedures obtained at a hospital, but it looks like I’m in the running.

Events: At Hopkins yesterday for a lab check.  Everything looks stable, but one big surprise.  Given this atrocious diet I’m on – eggs, butter, whole milk, ice cream I asked they do a cholesterol check.  I’ve always had a tad high cholesterol with a low HDL (good cholesterol) and high LDL (bad cholesterol), and I expected to markedly worse.  Low and behold, I come back with and HDL of 80 (over 60 is good) and an LDL of 90 (under 100 is good).  Maybe Dr. Atkins was on to something.

Comments: Learning stuff all the time.

Next visit next Tuesday for rescheduled eye check.  Talk to you then.  Have a great July 4th weekend..

Love,

-Bruce

June 24, 2011

6-24-11 Friday  + 8 months

Status:  Well, it’s been a few weeks since I wrote, and that’s always a good sign.  Slowly improving now that I have my hyperglycemia under control, not too high in the afternoon, and not too low in the morning.  It’s all a matter of timing and carbohydrates.  It’s better when your pancreas does all the work for you.  A deft balancing act of secreting insulin as your blood sugar rises, and converting glycogen storage in the liver into glucose as it decreases.  A precise thermostat, but imagine what you’d have to do to control the temperature in your house without a thermostat. You’d be standing by your HVAC system constantly turning it on and off.  That’s what I do all day long with food and pills.

Events: Did have a visit this last Monday at the Hopkins ophthalmologists for a checkup of my dry eyes, but it was a bad day for the healthcare delivery system (it’s been said that it’s not a system, it doesn’t deliver health, and nobody cares).

We arrived early for our 1:30 PM appointment.  Filled out the usual forms and waited about ½ hour before a technician came for us, and did a routine visual acuity check (eye chart).  Then back out into the waiting room and were told that the doctor would see us in 15-20 minutes.  We waited until 3 PM and were told that there were still 5 patients ahead of us.  Lisa had to make a 6:30 flight from DC, and if we stayed she would miss it.  We cancelled our appt, set up a new one, and I remarked that a scheduled 1:30 PM appointment that wouldn’t occur until 4:00 or 5:00 PM wasn’t acceptable.  The clerk said that she tries to speed up the doctor.  I said I wanted the doctor to spend as much time as he needs with patients, the problem was that they schedule too many patients.  We left for a hour ride back home – a wasted day.

Comments: The problem with our health care system isn’t that we don’t incorporate the latest research or that doctors and nurses are not well-trained, it’s that the system is generally not tuned to patient needs.  In this particular case, the priority is maximizing revenue for the Ophthalmology Department, not decreasing waiting time for patients.  If they schedule fewer patients in a day, they’ll make less money.  Since my scenario most likely happens every day in their clinic, you’d think someone would go to the department head and say, “We’re keeping patients waiting for an inordinate amount of time.  What can we do?”  But anyone complaining already knows the answer, “Well we could start by cutting your salary or nor purchasing the latest Lasik device.”

So despite the fact that the entire system’s mission is to focus on the patient, the implementation of that mission is driven, for the most part, by other forces.  When I was young the entire family was taken care of by a general practitioner who would come to the house with his little black bag.  He didn’t make much money, but he was well-respected, and you knew he cared for your well being as his first and only priority.  A lot to be said for that.

I’ll catch up with you on our next visit.

Love,

-Bruce

June 14, 2011

6-14-11 Tuesday  + 7 ½ months

Status:  It’s been a week and a half since my last posting, and I’m improving especially with my blood sugar management.  Gaining some strength with PT, doing some specific isolating muscle exercises.

Events: Up at
Hopkins yesterday for lab checks, lumbar puncture, and visit with graft vs. host doctors.  Still have some signs of GVH, and they want to keep me on steroids.  I was hoping to taper them off in order to rid myself of these high blood sugars, but I’ll have to deal with a while longer.  My docs cautioned me about referring to it as “diabetes”, since you’re likely to get labeled with that diagnosis on your charts – it’s merely “steroid-induced hyperglycemia.”

I learned an interesting fact.  For quite awhile, I’ve been bothered by painful, little, blister-like lesions in my mouth.  They become most prominent when I eat, and then they disappear.  I thought it was GVH and irritation from eating.  But I got a knowing smile from the docs.  They are blocked saliva ducts.  So I do produce some saliva, but it can’t get out because the openings of the ducts have been scarred over.  The same reason I have dry eyes – the openings of the tear ducts have been closed shut, probably a permanent condition.

And let me describe the usual procedure for my lumbar puncture (spinal tap).  A needle is inserted between the spaces of the vertebral bodies (your spine).  Each of the vertebrae is given a name and a number (just like your dentist has a number for each of your teeth).  The vertebrae in your lower back are called the lumbar vertebrae and are numbered downward as L1, L2, L3, L4, and L5.  The spaces in between are called L1-L2, L2-L3, etc.  Fortunately the spinal cord only goes down to the L1-L2 interspace, so you can put a needle below that level without worrying about hitting the spinal cord.

 

Mine are done in the fluoroscopy lab for exact placement, where I lie on my stomach as they prep the site with alcohol, and numb the spot with some lidocaine.  After inserting the needle and making sure they’re in the right place, they take out about 7 mL of spinal fluid for testing (looking for any abnormal cells – never found any) and inject 2 mL of chemotherapy.  This was my 4th of 6th prophylactic doses.  Only 2 more to go, each a month apart.

Now, we have found from previous experiences that the only spot that works for me is the L2-L3 space (I’ve had previous back surgery), so we go in there every time usually without a hitch.  I, of course, told this to the fellow doing the procedure, who said, “OK.” But the stick didn’t go well.  About 45 minutes of trying, moving the needle, more fluoroscopy, and causing some bleeding.  I asked what the problem was, and was told it wasn’t going well, and they would try another interspace.  I said that was unusual since the L2-L3 spot usually worked fine.  They said, “Oh, we didn’t go in there, we went to L4 since it looked like a wider opening.”  Arrrrrgh! What part of “listen to your patient” did you not get!”

Now what should have happened.  They – “We’re going lower cause it looks better.”  Me – “No, only L2-L3 works, let’s stick with that.”  That episode won’t happen again.  I made the rash assumption that a contract had been executed.  I made a knowledgeable suggestion, and it was agreed to with an “OK.”  What happened was a doctor changed the agreed-upon procedure based on her “better judgment” without informing the patient.  This is an absolute “No-no.”  It destroys the trust in a doctor-patient relationship (even a brief one) and usually results in worse patient outcomes.

Attempts at L2-L3 (re-numbing, re-sticking, etc.) were successful, although having blood in the spinal sample ruins the accuracy of some the lab tests we had gone to all the trouble to do.  The neuro-radiology team did not cover themselves with glory, and that particular fellow has a lot to learn about taking care of patients.

Comments: The lesson here, which I seem to have to learn over and over again, is that even in the most proficient hands, and even over well-trodden ground, you have to be vigilant each and every time you put your life and limb in harm’s way.

I have to go back next week for an eye checkup (Restasis has helped my dry eyes greatly).  Talk to you then.

Love,

-Bruce