Day 1, April 24th – The 14 Vials of Blood Day

As I take the last bite of my lightly-spiced (cajun) chicken breast dinner – which I ordered by phone and which was bought to my bedside in no time at all along with a delicious Caesar salad – I can reflect on what has been a productive, even enjoyable, first day at the National Institutes of Health in Bethesda, Md.
I’m only a quarter of the way through this four-day battery of tests – designed to give Dr. Wendy Introne a better understanding of the condition – and it might all go downhill from here, but so far the experience has been entirely positive (that said, the nurse just took my blood pressure and left the room with the ‘hmm, we might have a problem here’ look on her face.)
The day started early with a 6am wake-up call back at the Bethesda Court Hotel where my wife and two children are staying while I’m here. The hotel’s limousine took me the three miles to the NIH and, after passing through security and taking the shuttle bus to the main Clinical Center (Building 10 of 66 – yes the NIH campus is enormous), I went through Admissions where I think I signed more forms than when refinancing my house. It was still before 8am so I was probably among the first to be admitted which meant the staff were very friendly. I imagine after twenty admissions and several hundred requests to ‘sign here please’ the day starts to drag.
I was taken to my room on the fifth floor of the building and immediately welcomed by the staff nurse who showed me around, explained my schedule and introduced me to Dr. Stephan Siebel, an associate of Dr. Introne who is conducting research here at the NIH that will hopefully lead to an effective treatment for AKU.
It’s a while since I have been an in-patient in a hospital but I don’t remember the admissions process ever being so 1) friendly, or 2) efficient. I immediately felt comfortable; that I was in good hands. It was great to be in a hospital room where every nurse or doctor that came by knew exactly who I was and why I was here – none of this ‘So what’s your name again?’ or ‘You’re here because of Alkaptowhatnow?’
Dr. Siebel took me into an adjoining room where we chatted for an hour about my medical history and what each of the 16 tests scheduled for the week would involve. He also explained exactly what AKU is and why it, and other metabolic disorders, are so rare. I flatter myself when I say I understood most of it…okay, some.
After the consultation with Dr. Siebel, I met Dr. Introne for the first time, and we chatted a little more about the condition and what steps I was taking to minimize its effects. The staff nurse then returned to take all my meds away (they are given to you as and when needed) and begin my 24-hour urine analysis. I have to pee into a bottle then put that bottle in the fridge at the bottom of my bed. I just hope I don’t wake up in the middle of the night a little dozy and go in search of a midnight snack.
A porter then arrived to take me down to phlebotomy and, again, I was a little taken aback, not to say utterly impressed, with how smoothly everything worked around here and how well my schedule was being adhered to.
Before having my blood drawn, I had an EKG which lasted all of two minutes. There was some discomfort when the sticky nodes were removed from my arms, chest, and legs, at the end of the procedure, but I suspect it was nothing like putting one of those hair removal patches on your legs and ripping that off.
I returned to the waiting room, took a ticket, and sat down expecting a long wait. But my number was called about four minutes later. At home it usually takes an hour to have my blood drawn even if I’m the only patient in the building. Today, I was shown into one of the 12 blood-work cubicles where a nurse took 13, maybe 14, vials of blood out of me, the process taking no more than five minutes.
From there, I went back to my room where I ordered some late breakfast – yoghurt parfait, banana bread, tea – and had a snooze.
At 1pm I was taken up to the National Eye Institute on the 11th floor for a consultation with Dr. Brooks. The staff nurse had warned me the eye clinic is one of the busiest places in the hospital so to be prepared for some long wait times. I anticipated an afternoon of clock-watching.
But again, I’d hardly had time to sit down before a member of Dr. Brooks’s staff was calling my name. He did some routine tests before informing Dr. Brooks I was ‘ready for him’. Now came the longest wait of the day – about ten minutes during which I watched CNN and learned what a scoundrel John Edwards was/is.
Dr. Brooks carried out some visual acuity tests and recorded various other data before taking me down the hall for some Fundus photography which isn’t nearly as Fun as it sounds. Wikipedia defines Fundus photography as the ‘creation of a photograph showing the interior surface of the eye, including the retina, optic disc, macula, and posterior pole’. Basically, it consists of a technician shining an incredibly bright light into your eye and taking a quick picture in the split second before you pull your eye away complaining about the brightness. Okay, it wasn’t quite that bad, but after a dozen pictures you are left with a dark patch in front of your eye that takes about 15 minutes to fully disappear.
From the fun of the Fundus, I went to another room for an OCT of the optic nerve head. We all know that OCT is Optical Coherence Tomography, but did you know it can determine the optic disc margin automatically? Me neither.
After having my pupils dilated with drops, the insides of my eyes photographed with an absurdly bright light, and my optic disc margin determined automatically, I had a hard time seeing straight for an hour. I had to walk hard against the wall on the way back to my room for fear of walking into people or falling down several flights of stairs.
I did eventually make it back safely and fell right back to sleep on my very comfy Advanta bed which I can maneuver every which way. When I woke I was delighted to discover I had visitors – my wife and kids who had been to the Natural History Museum in DC. The kids showed me the crystals they had bought in the gift store, and told me about the T-Rex, tarantulas and termites they had seen. Tomorrow they’re off to the zoo while I have a CT Scan, Dexa Scan, skeletal survey, echocardiogram, rehab consultation, and pulmonary function test.
Sounds like a fun day for everyone.

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8 Responses to Day 1, April 24th – The 14 Vials of Blood Day

  1. Sudhish says:

    Hi Tony, We wish you all the luck and best of your stays while they examine and study about AKU. I like the subtle humor you post in your blog. Reminds me of those English novels I read when I was a kid..

    I do remember the EKG patch removal could be a tad hard on all esp if you are “bushy” and also the midnight snack craving when you feel you are good and want to snack and you have noone nearby to feed your growling stomach. Thank God, you did not go snacking under your bed….I mean the referigerator… I look forward to your blog tomorrow again.

    • tonydear says:

      Thanks Sudhish. Today’s only discomfort was the Pulmonary Function Test that I came out of feeling a bit light-headed. They really ask you to blow hard into those tubes. Oh, and the echocardiogram gel was a bit cold. But that’s getting really picky.

  2. Denise Higgins says:

    Sounds like a great first day! I agree with you that the NIH Clinical Center is a well-oiled machine. I am always impressed with how organized they are. It is comforting to be in an environment where all the doctors working with you know and understand what alkaptonuria is and the importance of examining each of the aspects of your body that are impacted. The early morning wake-up for blood draws in bed are my least favorite activity, but when you get the pages and pages of medical reports at the end of the visit you will have a very thorough analysis of your condition. Hang in there. The cuisine is certainly enjoyable and makes the stay almost seem like a hotel experience. Almost.

    • tonydear says:

      I’ll say as much in tonight’s blog, but today’s schedule was almost twice as full as yesterday’s. And yet I never waited more than five minutes for a single test. It is very impressive. And after yesterday’s 14 vials of blood, they took six more at 6am, then four more at 1.30pm. I’m not sure how much blood I have left.

  3. Pete Ermie says:

    You are a great writer Tony, you story brings back many memories of my visit to NIH. Of course I was in the old hospital, I believe it was called the warren Magnuson Center. The only negative part of my trip was the fact that the food was horrible. What is an Advanta bed??

    • tonydear says:

      An Advanta bed is one of those highly-maneuverable beds that allow you to raise your knees, raise your head, turn on a reading light, turn on the TV, turn on music, and call for the nurse when the bloody thing doesn’t work.

  4. Georgie says:

    Ah feel like I’m in the room with you Tony – mmm great range of drinks in the mini bar!
    Hope it all goes as well tomorrow
    lots of love

  5. Georgie says:

    Oo I seem to be incognito
    Georgie = di Clarke!

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