Day 2, April 25th – The Pee in My Bag Day

This is hardly the place to go all political on you, but ever since landing in the States ten and a bit years ago I have had a problem with the ‘system’. In the UK, where I was born and lived until I was 30, I was able to take advantage of nationally-funded healthcare which basically meant any time I went to see my doc about a sniffly nose, broken leg, demylinated nerves (multiple sclerosis) or discolored urine (alkaptonuria) it was free. We paid for it with taxes of course, but basically it was great. Market-driven healthcare just seems wrong somehow.
A brilliant neurologist told me last year that while America may well have the finest doctors and medical specialists in the world, it has the worst healthcare system. I was lucky to meet and be treated by some amazing physicians in Britain so I’d add an asterisk to the first statement, but I tend to agree with the second.
Here’s the thing though…whatever system gave the world the National Institutes of Health is alright by me. Yesterday’s suspicions about this place being the best medical institution I’d ever been in were confirmed today with another series of tests that ran like clockwork – Rolex clockwork.
It started when a nurse walked into the room at 7am to draw more blood -apparently they didn’t find what they were looking for in the 14 vials they took out of me yesterday! Six more came out this morning after which I had a few minutes to get ready for a Dexa scan in the Nuclear Medicine Department on the first floor.
Katrina, the technician, explained the scan would measure  the density of my bones which is useful info as people with  AKU are prone to osteoporosis. The scan took quarter of an hour and was totally painless. And Katrina was so personable she made the whole thing rather fun. From there I went across the corridor to Radiology where two X-Ray specialists did a full skeletal survey. That took half an hour as there were plenty of images they needed to get, and from several different angles. But again, it was pain-free.
After returning to my room, I did have time for a five-minute shower but sadly the breakfast on my table had to remain uneaten as I was whisked off to Rehabilitation and what was undoubtedly the highlight of the day.
Make no bones, Dr. Monique Perry is the kind of doctor you want to see. Not only does she obviously know physiatry and rehabilitation medicine like the back of her hand, she is gentle, funny, sensitive, professional, and above all caring. My appointment with her lasted three hours during which we discussed my medical history in some detail, she tested the range of motion in my shoulders, elbows, fingers, wrists, hips, knees, feet, legs, and arms, I took a six-minute walk around the department during which she observed my gait, ability to maintain a straight line (rather, inability) and the amount of puff I was producing (plenty), and she gave me numerous suggestions for exercises that will improve my range of motion, strengthen muscles around joints,  and hopefully decrease the pain.
I was almost sad to leave Dr. Perry, but I still hadn’t eaten and my time in rehabilitation had overrun by an hour. Knowing I had a two o’clock appointment with the echocardiogrammer (the wavy red line underneath it tells me that isn’t a legitimate word), I hurried back to my room to have as much of my breakfast (which had now been sat on my table for four hours) as I could cram in.
But halfway there I got a call from phlebotomy asking me to go back and have more blood drawn. The cardiac department had requested some tests that Dr. Introne hadn’t, but I went back nonetheless. Fortunately I was called through to cubicle No. 15 (I think I said there were 12 yesterday. Well, there are 15) fairly quickly but then disaster happened. Because my 24-hour urine analysis was still going on I had to take a pee bottle with me wherever I went. I had ‘performed’ twice since leaving my room earlier in the morning so had a good amount of urine sloshing around securely (I assumed) in my bottle.
You know what’s coming.
The phlebotomist asked what I had in my bag. Strangely, but as it turned out luckily, he also had a peek. He then looked at me strangely and queried my method of urine collection. I didn’t follow him so had a look myself, and saw that the lid had come off. To cut a long and unpleasant story short, we did manage to get it back in the bottle with the lid safely shut. But I’d lost crucial minutes. By the time I got back to the room I surely wouldn’t have time to eat much.
The porter was already waiting for me when I arrived. But she kindly allowed me a few minutes to finish my yoghurt parfait after which we walked the 100 yards or so to 5NE and the echocardiogram room. Typically for NIH doctors and technicians, Mike was very friendly and while he checked my aortic valve for possible signs of calcification, we debated who was the greatest golfer of all time. He said Jack Nicklaus, I said Tiger Woods. Mike is a very persuasive fellow so by the time I left I was agreeing with his theory that, while Woods had played the best golf ever played (1997 Masters, 2000 US Open), Nicklaus had the better record over a longer period of time which had to count for something. He’s right, it does.
Following the echo, I moved across the floor to a pulmonary function testing lab where I was asked to blow hard…harder….HARDER! into a tube a few times. It took 20 minutes at the end of which I felt extremely light-headed.
It was 4pm and I got back to the room feeling beyond tired. But before I could snooze, Dr Introne wanted a word. Most of the results she had seen so far were encouraging, but she was concerned about my blood pressure which had been high for each of the five tests I’d had so far. She tested it herself and discovered that it was indeed beyond what she felt comfortable with. She called a cardiac doctor and within a few minutes I was given some Norvasc, otherwise known as almodipine, a calcium channel blocker used to lower blood pressure. Two hours later my pressure was tested again, but it hadn’t budged. Same again a few minutes ago.
The nurse is now calling the doc to see if another dose might be a good idea. Thing is, I really don’t feel like I have high blood pressure. But as Dr Introne told me, you don’t really ‘feel’ high blood pressure; there aren’t any symptoms as such.
It’s a little concerning, but after the day I’ve had, I’m way too tired to let it keep me from sleeping.
Tomorrow morning I have a cardiac MRI at 8am and a cardiac CT at 12pm. I’m told I’ll be in the MRI department (not the tube itself) for four hours. So I’ll be sure to take the Tiger Woods book I’m reading. I look forward to being impressed by this facility and its staff once again.
And the system? Well, as Tiger is fond of saying, it is what it is.

(By the way, the nurse just came in and said the almodipine is having the desired effect and my blood pressure is where Dr. Introne wants it. Which is nice.)

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4 Responses to Day 2, April 25th – The Pee in My Bag Day

  1. Anna Mackie says:

    Hello Tony. Love your blog, (can I call it that?) sorry you are having to go through it but sounds as if you are being well cared for whilst being pulled and prodded in every direction. You just need to eat more quickly and screw on that bottle lid tightly and everything will be alright.
    Love to y’all from us all x

    • tonydear says:

      Of course you can call it a blog Anna, you go right ahead. It’s going to be a four-entry blog detailing my four days at the NIH. I feel I must stress I am not ‘having to go through’ this. I am here voluntarily to help the NIH doctors (Dr. Introne in particular) increase their knowledge of AKU. It has been full on to say the least.
      The aim of the blog is to encourage others with AKU to come to the NIH and participate in the same study, thus enabling Dr. Introne to devise a treatment.
      I do hope you, John, and the girls are really well. Tony x

  2. Megan Masaki says:

    I love the way that golf enters your story here despite all the tests and hectic pace you were whisked from one department to another! Had to laugh out loud at times – but seriously am praying for you and encouraging you to soldier on 🙂 Btw yes our UK NHS is amazing just we’d all respect her a bit more at times! x

  3. tonydear says:

    Thanks Megan. Another five tests/consultations tomorrow morning, then we go home. I am extremely tired and will no doubt take a few days to recover. But it has been so worth it.
    Hope you’re doing well. Tony x

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