Day 4, April 29 – The Long, Good Friday

Okay, it isn’t Friday evening and I’m not writing this having just completed my appointments for the day. It’s Sunday and we are home. We were up at 3am on Saturday morning, took a taxi to Ronald Reagan Airport and arrived back in Seattle at about 10.30am. Melissa, Michelle’s sister, was there to take us home, and we fell in through the front door at about 3pm.
Needless to say the house was a tip – not because we’d had burglars in our absence, just because we left it that way. No matter. Michelle and I gave the kids dinner, put them to bed very early, and then had a romantic meal and sat up chatting about the week into the small hours with a nice glass of Columbia Valley.
Hahahahahaha. NOT!
Michelle fell asleep on the couch at about 7.45 while I flipped channels for a while before falling asleep myself about 9pm. But with the kids so tired, they were bound to wake up at 8.30am so we’d all have a pleasant lie in.
I think Sam came trooping into our room first at about 5.30am, closely followed by Madeline.
But none of this tells you anything about the fourth and final day which turned out to be the busiest. It’s inevitable during a week like this, one or more of the doctors you saw will want to do a follow-up. Dr. Perry in Rehabilitation had spoken earlier in the week about the possibility of getting me a Transcutaneous Electrical Nerve Stimulation (TENS) unit and, after having located one, wanted to bring it over to my room at 8.15 in the morning.
Well, I was fast asleep as 8.15 and neither Dr. Perry nor the nurses wanted to deprive me of a little sleep, so they let me be and rescheduled the visit for later in the morning. It was therefore a markedly more leisurely start to the day – none of the 5am wake up call with IV line insertion of Thursday, or 7am blood draw of Wednesday.
My first appointment was in the ultrasound department at 9am when my kidneys would be on view. Before then though I had the good fortune to eventually meet the wonderful Joy Bryant, a clinical research nurse, who had set up the whole visit. She more or less took control of the day, rescheduling a few appointments so I’d be sure to have a shower and some breakfast before four in the afternoon which seemed to be happening a lot.
Alkaptonuria carries a relatively high incidence of kidney stones but thankfully the technician at the ultrasound unit saw no sign of one – like I’d need a technician to tell me if I had a kidney stone!!!!!!! I was staying in a Belfast B&B about 12 years ago when I had my first and, mercifully, only kidney stone so far. It was 4am and try as I might to keep my cries of anguish to a minimum I failed. The landlord came running into my room and immediately drove me to the doctor’s office where I was given a very strong painkiller that somehow enabled me to get back to London in relative comfort.
I’m sure I’m embellishing the story a bit because it doesn’t explain what the doctor was doing in her office at 5am. Perhaps the landlord had phoned her and told her one of his guests was freaking out and she had to meet us at her clinic. Perhaps she liked to work late/early. Whatever the truth, I will never ever forget the pain…which, actually, is too mild a word.
Anyway, the kidney ultrasound went smoothly enough, the only problem being the very cold gel the technician spread over my sides and my yelping like a little puppy.
From the ultrasound I went to the Rehab clinic where an associate of Dr. Perry’s hooked me up to a TENS unit. A TENS unit is designed to create a feeling at the site of your pain that blocks the actual pain -or something like that. You have control over the strength of the stimulation and at what interval the pulses come, but basically it feels like a small electric shock is happening wherever you place the pads.
After some experimenting, I found a location, strength, and interval that seemed to work and I was very pleased to see it had a belt latch on the back meaning I can wear it when trying to play some golf this summer. It might be against the Rules but, let’s face it, I’m not going to be winning any prizes. Just to play a few holes and hopefully be given the opportunity to teach again would be absolutely fantastic. I helped coach First Tee kids at Lake Padden in Bellingham last year and can’t tell you how much I enjoyed it. I also helped the Director of Instruction teach a class of adult beginners which was equally enjoyable.
In addition to the TENS unit I also walked out of the Rehab clinic with a back cushion that pushes the lower spine out away from the chair a little thus preventing it from becoming too flat.
Back in my room, Joy saw to it that I had time to eat my breakfast, and asked the clinical photography department, with whom I had a 10.30 appointment, if they could do their thing in my room rather than have me go to them.
Ten minutes later the photographer was at the door. She taped some blue material to the wall and had me stand in front of it facing her. She took a few shots face-on, and had me turn through 90 degrees in both directions. She then came in for a few close-ups, capturing the whites of my eyes (which can be discolored) and my ear lobes (which already are a bit). She took a close-up of my hands and fingers, and was gone in ten minutes which gave me time for a quick snooze.
But Dr. Siebel walked in. He handed me a copy of ‘The Hunger Games’ which we had spoken about a couple of days before and which he had bought for me while out shopping the previous evening. I don’t recall ever having been given a present by any other doctor in my 40 long years, but that’s what NIH doctors are like (disclaimer: NIH doctors are not obliged to give their patients gifts).
A doctor from the multiple sclerosis department was the next to visit. I think the combination of MS and AKU was something of a talking point, and they wanted to investigate, even though the NIH visit had nothing to do with MS.
I was looking forward to my next appointment. Any time you get a chance to visit Dr. Perry you say ‘which room?’ She had compiled a print-out with 34 exercises and stretches she wanted me to practice at home. Some I had done before, some were new to me.  She also had me demonstrate each of them to make sure I was able to execute them correctly. She gave me a few other back pain ‘toys’ to try out too.
I was in Dr. Perry’s office for two hours making a total of five with Wednesday’s three.
And with that I was done. I returned to the room, packed up my gear, had a final round of vitals testing (blood pressure improving all the time), and one last conversation with Dr. Siebel who had been such a marvelous help and encouragement throughout.
I phoned the Bethesda Court Hotel and ordered the limousine. It turned up half an hour after it said it would, so I had a chance to do some stretching on the benches at the entrance – yes, I got several looks from passers-by.
When I got back to the hotel, Michelle and the kids were there having spent the day at the Treasury seeing how money is made. We hit the town and found a burger joint where we wolfed down the biggest, fattest burgers and fries I’ve seen in a while.
We were in bed by 9pm and seven hours later sat in a taxi en route to Ronald Reagan National Airport. As the wheels came up, we looked down and, directly below us almost, was the Pentagon – one last, cool landmark to add to all the rest.
My thanks go to Dr. Siebel, Dr. Perry, and Dr. Rosing for their expertise, and Dr. Introne in particular for the ground-breaking work she is doing on behalf of AKU patients around the world. Without her research, there would be no hope of ever finding a cure (or an effective treatment that reduces its effects at least) for AKU. I also want to mention all the nurses and technicians that made the visit so memorable. The NIH is an unbelievable institution, and if there are any AKU patients out there that haven’t yet been part of Dr. Introne’s study, I recommend it without hesitation, and encourage you to sign up. The more data Dr. Introne can gather the better.


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