Archive for June, 2011

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

June 4, 2011

6-3-11 Friday  + 7 months

Status:  Hey there.  Haven’t written for a while because the time between visits to Hopkins have lengthened (that’s a good sign).  Doing better and getting my blood sugars under control.  Lisa and others say I look much better than I did these last couple of weeks when my blood glucose was way too high.  It’s a complicated task dealing with it – watching your carbs, timing your meals, taking blood sugars 4 times a day.  Gives me more respect for people with diabetes.

Events: My brother Terry came up for the weekend, and we went to a Nationals baseball game.  It pretty much tired me out, but he got to see the new stadium and a typical game (they lost in the 9th).

Simple lab check at Hopkins today and a quick visit.  Gained some pounds.  Liver enzymes are back to normal and hematology counts are up.

Comments: My goal has been trying to keep my carbs under 200 grams day but get in 2000 calories (a 10:1 ratio).  Those food nutrition labels are invaluable.  Now “carbs” are carbohydrates (sugars and starches).  They each have the same amount of calories (as  do proteins).  So a tablespoon of sugar, or of rice, or of tuna fish all have the same number of calories.  The difference is that protein (meat, fish, poultry) gives you calories without the carbs.

And complex carbohydrates (starches) as in bread, fruit, or pasta are digested and turned into sugar, but a much slower rate than simple sugars and with less demands on insulin production.  Eating a teaspoon of honey will give you the same number of calories and carbs as a teaspoon of rice, but without the instant sugar rush – the so-called high glycemic index.

And a shortcut (I’ve looked up nearly every food that I eat) is that, in general, all fruits have about a 4:1 ratio of calories to carbs.  Veggies are about 6:1.  Eating fruits and vegetables would give me 500 carbs a day on a 2000 calorie diet (way beyond my 200 gm carb limit).  The only way to beat the system is to substitute proteins and fats (foods with about a 100:1 ratio).  In fact, eating ice cream (8:1) ratio for my purposes is better than blueberries (4:1 ratio).  Eating pork chops and ice cream would work as  well except for that cardiac stuff everyone talks about.  So while it’s not a long-term diet plan, I’ll stick to it until I’m off of prednisone.

Now keeping a daily routine gets pretty complex when you have to plan your meals around an Excel spreadsheet, take some meds with food, some without.  Time your finger sticks for blood glucose before and 1 ½ hour after meals.  And for those of you who don’t have to use a blood glucose meter here’s the routine:

  1. Take out and unzip handy glucose monitoring kit
  2. Grab an alcohol swab and Kleenex
  3. Select a glucose monitoring strip from included canister
  4. Take out a lancet needle and with its plastic safety cap from pouch
  5. Twist off plastic lancet safety cap and set aside for another step below
  6. Take off the top of the needle injector and insert lancet
  7. Replace top and dial in the penetration setting on the injector
  8. Take out glucose monitor and insert glucose monitoring strip (bar code side in)
  9. Wait for bar code query and confirm bar code
  10. Wipe finger with alcohol swab
  11. Cock the injector
  12. Press injector firmly against finger pad and fire the spring loaded needle
  13. Wait for proper size of blood drop
  14. Slide monitoring strip edge against blood drop
  15. Hold Kleenex against needle stick
  16. Wait the 5 second calculating period
  17. Read off blood glucose level
  18. Take top off injector and extract lancet
  19. Push lancet needle into set aside safety cap and dispose
  20. Put injector top back on and put all items back in handy-dandy pouch
  21. Ascertain whether puncture site has stopped bleeding and dispose of Kleenex

Now, that’s what happens when all goes well.  If your needle stick doesn’t get enough blood on the strip, the monitor reports an error, and you have to start again, getting out another glucose strip, recocking the injector, all the while holding Kleenex against previous puncture site, and sticking yourself again.  [Shampoo, rinse, repeat].

The first time I tried this I had to stick myself 7 times. Then I finally called my Mom to tell me what I was doing wrong.  Besides the frustration of not doing it well, each strip and lancet costs $1 a piece.

The last two weeks have been spent modifying the dosage of my oral diabetic meds, cooking for myself (can’t eat what everyone else is having) and trying to get back on a daily physical therapy schedule.  But feel I’m back in the groove now.  And I don’t have to go back to Hopkins for a week and a half for the 4th of my 6th post-transplant lumbar punctures.  Glad when that’s over.

So have a great weekend, and we’ll report a week from Monday if there’s no other news.

Love,

-Bruce