Transplant Epilogue

I’m now over 6 weeks post transplant and everything is still about as perfect as it could possibly be. Appointments reduced to once a month, blood draws weekly, creatinine around 1.2 and eGFR over 70. Amazing!

There was however, just one thing hanging over my head and if you read my previous post, you’ll know what it was. The stent removal.

Today was the day I’d been dreading, but I had to face it. So at 8.45am I headed back into Seattle to visit the Swedish Urology Clinic and Dr Phillip Chapman. The wait was longer than I would have liked – when you’re dreading something, you just want to get it over and done with, so an hour in the waiting room was less than ideal. I passed some of the time by providing a required urine sample. Eventually my name was called and I was taken into a procedure room to meet Dr Chapman. Rather like the anaesthetist, he was very pleasant and calming and after going over my medical history (again) he explained in excruciating detail what was going to happen. I suppose it’s better to know, but it didn’t exactly put me at ease.

So, with no photos this time (for obvious reasons) this is what happened.
I lay on the exam chair and exposed the work area, so to speak. Hanging from a hook on the ceiling was a bottle of sterile water and a long tube which he proceeded to attach to the camera thing. I was expecting a screen so I could have seen what was happening too, but it was a tiny monitor that he held up to his eye – perhaps that was for the best. The procedure was basically to insert the thing up my penis into the bladder, have a look around to make sure all looked ok, grab the stent’s curly end with a hook and pull it out. But first, it had to go up!

Out came a syringe of gel infused with lidocaine, a local anaesthetic. After a clean with alcohol (which he apologized was cold, as if I cared about that!), he squirted a small amount into the end, waited a short while and did it again. Each one sent the gel further up and it was an unpleasant sensation. Then came the moment to get started. To be honest I didn’t feel it going in and almost immediately he said that he was at the sphincter (the bladder valve). He’d already warned me that this couldn’t be numbed and getting past here would be the worst part. It was, my goodness it was. Fortunately the pain just lasted for a few seconds like he assured me it would.

And then he proceeded to turn and twist the instrument observing the inside of my bladder. All was well but he was surprised at the length of the stent and enquired whether I had had discomfort urinating, which I hadn’t.

I was then asked to take a deep breath and exhale. And in one deft motion, he pulled everything out. It wasn’t as bad as the entry, but to be fair, it wasn’t as bad as I was expecting. “Would you like to see the stent?” I was asked? “Hell no!”, I think I replied.
He gave me some tissues to mop up from the water that had escaped (the procedure water from the ceiling, not urine) and left me to get dressed. He came back with 5 antibiotic tablets for the next couple of days just to prevent infections. And it was over and yes, I breathed a huge sigh of relief.

All I need to be aware of is any potential blockage now the stent is gone, so that would manifest itself in a lower urine output or signs of fever etc.

So in summary, it probably wasn’t as bad as I was dreading, but on the other hand, would I like to do it again? I refer you to my previous answer. “HELL NO!”

The Road to A Kidney Transplant

My name is Wayne and I’m a 58 year old British guy living in Sammamish, near Seattle WA, USA. On Monday 12th August, I had a successful kidney transplant at Swedish First Hill Hospital in Seattle WA. I thought it might be helpful to write a blog post about the journey in the hope that it might help others who are walking the same path as me. It goes without saying, that everyone’s journey is different, but I hope that my particular route might provide some information and indeed comfort to anyone who cares to read it. Of course, the usual disclaimer applies, this is not medical advice and that can only come from your own health care providers.

The Beginnings

I’m only going to focus on the last few years, but for context you should understand that I was diagnosed with Polycystic Kidney Disease (PKD) when I was 40 years old. It is rife throughout my family and I inherited it from my father who was on dialysis in the 1970s and unfortunately died when I was 9 years old.

The Following Years

Following diagnosis, which resulted from abnormally high blood pressure, I received sporadic checks but little else. In 2006 I moved to the USA to work for Microsoft and again, was only subject to my yearly medicals for monitoring. Those yearly checks included blood tests to monitor my creatinine level. For those that don’t know, this is a measure of a substance in the blood that provides an indication of how well your kidneys are functioning. It is directly related to another measure called Estimate Glomerular Filtration Rate (eGFR) which is a percentage. When my eGFR had dropped to a significant level, my primary care provider referred me to a Nephrologist (kidney specialist). In January 2013, I met her for the first time, Dr Madhuri Kandala.

I will pause for a second here to mention that having a good nephrologist who really understands PKD is absolutely critical to your success. Although you would think it would go without saying that being a nephrologist should automatically mean that they know about PKD, talking to my friends in the PKD community clearly shows that it is not the case (worryingly). Dr Kandala has been a fantastic advocate for my treatment and as you will read, has made all the right decisions at the perfect moment. I could never thank her enough for what she has done for me.

The Countdown to Dialysis

The appointments with Dr Kandala started yearly, then every six months and eventually monthly and steadily my eGFR started to decline. Strangely though, I didn’t really have any of the usual symptoms that went along with the declining kidney function – this was great for me of course, because it meant that I was able to put off dialysis for the longest time. Once my function had reached a certain point, I was referred to the Swedish Organ Transplant clinic to be assessed for a possible kidney transplant.

In May of 2016 I went for my first transplant evaluation at their clinic in First Hill, Seattle. The work up (as it’s called) is very in depth, consisting of scans, ECGs, treadmill work, blood draws and talks with social workers, finance consultants, nephrologists and surgeons. They’re basically deciding if your body is strong enough to stand a transplant, whether you have the required medical coverage to pay for the expensive procedure and whether or not you have a supportive family to help post transplant. Fortunately I passed and was placed on the transplant list. With my blood group B+, I was told it was likely a 3-5 year wait. You aren’t immediately “active” on the list, because at this stage your kidney function isn’t low enough to warrant a transplant, but you are accruing time.

After a period though, Dr Kandala said that the time had come to start to prepare for dialysis. What did that preparation consist of? You need to have a way to be connected to the dialysis machine. In the case of haemo dialysis, that could be tubes down to the heart (only for emergencies), a stent (external connection) or in my case, a fistula.

In May 2017, I went into Overlake Hospital in Bellevue for a day procedure with Dr Brian Ferris of Lake Washington Vascular to have my fistula created. A fistula can be in many places, depending on the veins in your body and how cooperative they are – fortunately I was able to have mine created in the usual place, the lower arm. In simple terms, my wrist was opened up and an artery was joined to a vein. This causes extra pressure to flow up the vein which thickens it, thereby making a wider and more robust target for the dialysis needles to be inserted.

This however, is just the beginning. Post surgery, the fistula needs about 6 months for that thickening to happen, it isn’t overnight. But referring back to Dr Kandala’s immaculate timing, in November 2017, six months later, the time had come to start dialysis and my fistula was ready!

Just after Thanksgiving 2017, I drove to Northwest Kidney Center’s Lake Washington location for my first dialysis session. After a bit of paperwork and a quick check of the vitals, I was taken to “my chair” and my first cannulation (inserting the needles into the fistula). I wasn’t actually nervous as I recall, partly because I have no fear of needles but also because the staff were so kind and welcoming. And then I just sat for 4 hours as the machine cleaned my blood and removed the excess body fluid that my kidneys were no longer capable of doing. That’s the two functions of dialysis if you didn’t know…

And thus began my thrice weekly dialysis sessions, from 2.15 to 6.15, Monday, Wednesday and Friday. And now I became “active” on the transplant list.

Dialysis continued on that schedule, more or less, for 20 months, almost without event. I was incredibly lucky in that, apart from a little cramping in the feet from time to time, I had no other side effects whatsoever.

Fast Forward to August 2019

Well almost. In early 2019 I returned to Swedish Organ Transplant Clinic for another work up, pretty similar to the last one. You have these work ups periodically to make sure things hadn’t changed and that you’re still fit enough for transplant and that you still have the support network in place around you. Again, all was well and I was told that I was slowly but surely creeping up the list. You never get told where you actually are though. So you never really know when to make sure you keep your phone by your side at all times in case “the call” comes.

I needn’t have worried about getting the call though, because I got a call of a different kind. On July 25th, I got a call from my pre-transplant coordinator, asking me to come back in for another evaluation. Puzzled, I asked her why, because I’d only been in earlier this year. She said that there was the possibility of a donor and they’d like me to once again have some tests “just in case”.

So, 2 days later I was at Swedish in Issaquah WA for a CT scan, to check that there was still room to fit another kidney in.

Three days later I was back at the clinic for another set of meetings with everyone, more blood tests (I’ve given gallons of blood on this journey!) and this time a meeting with Transplant Surgeon Dr Santhanakrishnan. Over the course of the afternoon, the meetings went from “there’s the possibility of a kidney” to “there’s a strong possibility of a kidney, but it would take 6-8 weeks to arrange and there are other candidates” to….

Well I was sent down the corridor to have my blood drawn, leaving my wife in the consulting room. Having given another pint, or so it seemed like, I shuffled back down the corridor to find my wife sitting with the pre-transplant coordinator, looking white faced. “Have you told him yet?” my wife said. Told me what? Was I dying? What, what…

“You’re getting the kidney and you’re getting in on the 12th August at 9am”

Can we discuss this at all? Is the timing set? So many questions.

Just to backup a little here, I have 2 adult daughters living in England and I hadn’t seen them for over 2 years, nearly 3. We had arranged at the start of the year for them to visit for a week, arriving on the 10th August. Should I stop them coming, couldn’t the transplant be the following week? Turned out that the date was fixed in stone, take it or leave it. I took it and having my girls with me was just perfect. Back to the story…

My main question was, of course, who is the donor? Silence ensued. Everything was totally confidential. They explained that I could write a letter to the donor without revealing any identifiable information apart from my first name. That letter would be held by the coordinator for 6 months and then passed to the donor (to be sure everything had worked out fine). At that time, the donor could choose to contact me if they wished, but that was their call, not mine. I shall write the letter of course, and wait.

August 6th was my first visit to Swedish First Hill in Seattle for my pre-op visit and briefing. Met some more lovely people, had an ECG, more blood tests, met the pharmacist and was basically told what to expect. Oh, and I was given a bottle of soap – more on that later. The paperwork was issued, be back here at 5am on the 12th!

The Day Before

Having picked up my daughters from Seatac airport on Saturday, we did the best we could to spend some quality time together before it all began. But first there was the small matter of my final dialysis session. At 5am on Sunday the 11th. My daughters came with me to Northwest Kidney Center’s Kirkland location, not my usual place which is closed on Sundays. With a lot of yawning and a little chat, I got though my final 4 hours of dialysis, hopefully ever – session 169, because I count those kind of things. We took some celebratory photos and said goodbye to the dialysis center.

1566178585705.jpgFinal Dialysis Session with my 2 UK based daughters

Although I was told not to eat after midnight, I actually didn’t eat hardly at all the day before, just some soup and toast. To be brutally honest, I was concerned about post op defecation and wanted to be as empty as possible.

All too soon the day passed and it was time for an early night before the second early start in two days. Now, remember I mentioned the soap bottle earlier? Well it was so I could have two showers and completely wash myself with the special soap in this bottle. Once the night before, followed by clean towels and clean sheets and then again in the morning at 4am. That’s a lot of showering – and I wasn’t finished…

The Day

The alarm went off at 3.30am and the first thing was the second shower. Seemed totally redundant, but you do as you’re told. I threw a few things in a small bag, phone charger, bag of Jolly Ranchers and my slippers. No pajamas because I don’t own a pair. Which didn’t matter because the first thing I did when I got to my room was get into the rather fetching hospital gown.

Anyway, we left the house at around 4:15, my wife and daughters – my last drive for a while. We parked up and walked to the hospital and patient registration. Handed over the usual 2 docs, driving license and medical insurance card, got adorned with a wrist band and told to report to East wing 11th floor.

Greeted by the lovely staff on the 11th floor reception, I was shown to room 1162, my home from home. It had an amazing view East, in fact I could see the Sammamish plateau where I live.

It started straight away. Undress and gown on and then immediately, yet another rub down with a few packets of antiseptic towels. I sat on the bed, which had a weird air weight distribution system, designed for lying not sitting. I nearly fell off and started feeling seasick!

I put my belongings into the wardrobe and before long it was time to be wheeled down to pre-op. My wife came too, and my daughters took off into Seattle to do some sightseeing – nothing more they could do at this stage.

The journey down to pre-op was fun, being wheeled through the corridors and into the lift. Didn’t bump into too many things on the way. The bed was clearly heavy, didn’t steer too well and there was building work to navigate around. Eventually we arrived in pre-op and I was reversed into a cubicle where I was greeted by a nice male nurse, whose name I sadly forget. I can probably omit the “nice” now, because every single person was nice.

A few more forms were completed and then it was the strangest question. “Did they tell you about the nose painting?” They didn’t and so he explained that as yet another infection block, they paint your nose with this special paint. I really didn’t know what to expect (obviously), but it soon became clear that he meant the “inside” of my nose – I wasn’t getting a clown makeover. Q tips were taken out of a sealed bag and dipped in the small bottle of paint and up the nostrils they went. Not pleasant, let me tell you – mainly because he went up as far as he could. I kept tilting my head back to resist, but the pillow was the backstop. Now having said it was horrible, and smelly, it was probably the worst part of the whole thing, so that’s not bad really.

The surgeon team came in to say hello followed by the anesthetist. Dr Dolan was his name and his voice was calming and almost hypnotic. I wondered if the surgery was being conducted under hypnosis instead of drugs! He explained exactly what was happening – made me feel very relaxed. He came to my left side to insert an IV into my wrist, I couldn’t have it in my right arm because of my fistula. In fact they actually wrapped my right arm up and added a limb alert wristband, just to be sure nobody tampered with it. Dr Dolan also explained that they would be using a fairly new form of pain relief with me, a catheter into the wound, rather like the epidural that they use during childbirth. I wasn’t sure whether or not he was asking me if that was OK, but I was frankly up for anything that stopped it hurting – more on this later!

Everyone asks you your name and Date of Birth every 5 minutes, that’s how safe they make everything. But when I was asked, “And what surgery are we doing today?” I had to resist the urge to say, “Wow, don’t YOU know????” – more checks and balances of course. I replied that I was here for a kidney transplant and that it was going into my right hand side – they wanted me to be very specific.

I waited in pre-op for quite a while because they had started the donor surgery first, of course, and wanted to know that it was going well before starting on me. But before long I was saying goodbye to my wife and heading down to the Operating Room (OR) at nearly 10am I think.

We passed through a door marked Sterile Clothing Only and we were in the corridor going past the scrubbing up stations and finally make a left turn into the OR itself. Honestly, I was a little underwhelmed. I’ve obviously watched too much TV, but it seemed quite small. I was asked to shuffle over onto the operating gurney and I looked around the room. In the corner was an ominous looking metal container. Did this contain my new kidney I was tempted to ask, but didn’t.

Dr Dolan came to my side and attached a tube to my IV and said, “I expect you’re wondering when we’re going to start putting you to sleep?” – I woke up in post op…

Post Op and Recovery

I woke up in a large room with a lot of people and lot of beeping. I was wide awake – seriously, I was wide awake. No nausea, no pain, no woozy head, nothing. Apparently, because of this miraculous catheter in my side, they hadn’t given me any form of narcotic pain medication and therefore I came around completely compos mentis. I stayed in post op for around 2 hours, while they waited for the results of blood tests. They were a little behind that day it seemed. I was aware of a squeezing sensation in my lower legs, they were incased in sleeves that were attached to the bed, which inflated one at a time to prevent thrombosis.

At around 4pm, I was wheeled back up to room 1162 to begin my recovery. And honestly, I felt fine – I really did. In fact back in the room, I immediately asked for my cellphone out of the wardrobe and I was video calling home – which took them by surprise, let me tell you! My wife had been told that I could be “out of it” until midnight, so she had rightly gone home, expecting to come in the next day. She was not expecting a smiling husband asking what they were having for dinner! My wife asked guiltily whether they should come back to the hospital, but I said there was no point – I’d see them in the morning.

Thumbs UpShortly after arriving back from Post Op

I had, at my side, something new. It was a small black bag with a zip at the top, with a tube coming out of it that appeared to be going into my body. It was of course the med supply for the catheter anesthetic that I mentioned earlier. It would be coming everywhere with me until Friday when it was due to run out. I couldn’t resist the urge to peek into the bag, but inside was just a ball about the size of a tennis ball full of liquid. Later, a doctor explained that the ball was elasticated and was essentially squeezing the meds out, though a regulator into my body. It certainly appeared to be working as I was in no pain, but I’ll return to this later.

The surgeon had elected to glue the scar, rather than use stitches or even staples, which has, writing this 3 weeks later, proved to be an absolute wonderful thing. The glue has been dissolving as I’ve been showering and now bathing to the extent the scar already has faded significantly, see…

ScarScar Comparison

To start with, the nurse checks were regular. Taking vitals, dishing out meds, emptying the catheter bag. Yes, of course they had inserted a tube up, well you can guess where. And by all accounts, they were pretty impressed with the output already! Kidneys from deceased donors can take a while to wake up, even days. Mine was, of course, from a living (wonderful, kind) donor and was already firing on all cylinders.

The first day I was on a clear liquid diet and they had already brought me a cup of chicken broth which went down well. Then I was presented with the clear liquid room service menu. My dinner was a packet of Gummy Bears and a Sierra Mist soda. What kind of heaven was this? Oh, and 4 bottles of water. They wanted me to drink bottled water because all fluid in and out had to be recorded and the 500ml bottles made that job easier.

HariboThe first magnificent breakfast

The evening passed and I started to get some fitful sleep. I say fitful because of course they’re coming in every hour or so to do more vitals. I dozed until around 3am and then couldn’t get back to sleep again. So knowing that this was during the day in the UK, I started calling folk in the UK to tell them the news!

A few hours later I was treated to the most wonderful sunrise over the Cascade mountains. It was glorious, so I posted it on social media. I posted quite a bit from my hospital bed and the comments and responses were overwhelming – a real morale booster. Social media can get a bad rap these days, but this was one time that it proved its worth and then some. I had told hardly anyone prior to the transplant, mainly in case something happened in the lead up – so most people were really surprised and of course delighted to read the news.

SunriseSunrise over the Cascades on Day 2

I was done with clear liquids and the main menu appeared. Breakfast was oatmeal with brown sugar, Greek yogurt with honey, coffee and freshly made oatmeal and raisin cookies – better than a lot of hotels I’ve stayed in! And of course, 4 more bottles of water.

At some point, the whole surgery team came in on their rounds. They seems pleased with my progress and assured me that they hadn’t had to remove my old kidney (which they had explained before hand might be a possibility once they had opened me up).

Mid morning, my wife, daughters and sons turned up to visit and I deftly produced a birthday card for my wife from under the bedsheets. Yes, it was my wife’s birthday, poor thing, but she did say that this transplant was the best present she could have wished for. We all sat and chatted for a bit, with the coming and going of the various nurses on duty. Fortunately though, for day 2 and day 3, I had one nurse from 7am to 7pm, an amazing gentleman called Fabian – he truly was wonderful, full of information – nothing was too much for him.

Lunch today was absolutely delicious tomato soup with a grilled cheese sandwich.

It was time to get up and walk around! This was easier said than done. A walker appeared, my catheter bag was attached to the walker and the tube clipped to my gown so I didn’t trip over it and then the inflatable legs were removed to reveal two very sweaty legs. With help, I swung my legs around and finally, the beast walked. Frankly it was quite a sight, walking the corridors with me pushing a walker and pee bag, my wife pushing a stand full of IV meds and pumps, 2 sons and 2 daughters, one determined to film the entire walk! We did two laps of the triangular corridor. Doing something rather weird…

My benevolent donor was anonymous. But I knew that he, or she, would also be here on the 11th floor with me, because this was the kidney transplant floor. So as we walked around, we were peeping into each room thinking, is it you, is it you? We’d never know of course, but the curiosity was overwhelming. Two laps later and I was reversing back to the bed, sitting down, getting seasick and lying back down to rest. The walk went well. I did about 3 walks a day, with Fabian after the family had gone home and eventually on my own.

IMG-20190813-WA0009The first walk – family assisted

The family eventually departed to celebrate the rest of my wife’s birthday – they went to an escape room having escaped the hospital and Seattle. So I settled down to watch the Mariners baseball game that evening. My youngest son had brought a baseball cap in and took a photo of me wearing it. I sent it in to the TV station who run a #WhereIRoot segment during each game for fan photos – and sure enough there I was during the broadcast giving a thumbs up. Thanks for the mention Root Sports and Angie Mentink!

RootMy first (and last) moment of sporting fame

After the game was over I settled down to sleep, but for the first time I realized that I was actually in some pain. They ask you on each check, your pain level from 0 to 10 and each time I replied zero. Now I was a four and rising. The night nurse gave me 5mg of Oxycodone – the first narcotic I’d taken. It didn’t really take the edge off and I had an uncomfortable night to be honest. When Fabian came on duty at 7am, he gave me 10mg and that seemed to do the trick. I did wonder about my pain catheter though – was it working? All things considered though, things seemed to be shaping up well for this to be going home day.

Learning and Departing

Fairly early on day 3 (Wednesday), my catheter was removed. No pain, but not pleasant – I won’t dwell on why. From thereon in, it was down to me to get up and go into the toilet and frankly pee into a bottle, all output needed to be measured. And there were a lot of visits – this kidney was working overtime. Everything was working fine though and the bladder seal was holding up!

Before long, my wife and daughters appeared and the first of many visitors appeared, all preparing me for discharge and what I had to contend with at home. And it was a lot of information as you can imagine. We’d been given a folder beforehand as this was a planned transplant, but they went through the content again. A dietician talked about what food I can and cannot have, how it was to be prepared, where I can eat, where I can’t eat – a surprising amount of restrictions really. She finished off by saying that this new kidney was giving me my life back (it didn’t sound like it!)

The surgeon team came in again to look at the scar which was healing nicely already. They were happy for me to go home.

At about 1pm, the pharmacist came to open the bags that had been delivered earlier with all my medications. We went through each med, how often I had to take it, and filled up with pill box they supplied. All very nice and efficient.

I was probably about ready to go home now, but for whatever reason they decided that I needed one more dose of the strong IV anti-rejection medication. It was an 8 hour drip that Fabian connected at 11am, so that meant that the earliest I’d be going home would be after 7pm. We sat around and waited.

Curiously, something happened during the afternoon to pass the time. Remember earlier I said I was concerned about post-op bowel movements? Mid afternoon I had my answer. Oh my word, did I have my answer. No problem passing it because it was less than solid. But of course I had to be in the toilet, still attached to the med drip, so it was an interesting performance of stretching the machine which was plugged in to the wall towards the toilet and leaving the door open to thread the drip tube through. My wife helped, but with my daughters in the room, all shreds of dignity evaporated! And then cleaning up attached to a drip – I’ll leave that to your imagination shall I?

The afternoon also had pee tests. I would head into the toilet and pee into the bottle and as soon as possible, Fabian had to ultrasound my bladder to see how much was left. It didn’t start well – too much was left behind although I could have sworn I was empty. A combination of lack of muscles and slightly deadened nerves was the culprit. We repeated the performance about 4 or 5 times and each time it got better, but not quite as good as he would have liked. Not enough to stop me going home though. Each pee test, he’d check the timer on the IV and given me a countdown to going home.

Eventually the machine beeped – it was done. I was disconnected, the IV feed removed and I was getting dressed ready to go home. At around 7.30, I was walking out, my little bag of main medication over my shoulder, down to our car in the carpark ready for the drive home by my wife. Just over 48 hours after the operation, I was heading home – how amazing is that?

The First Night Home

Why do they send you home so quickly? They used to keep transplant patients in for a week, sometimes two. They cite two things – firstly the psychological recovery effect of being in your own surroundings and secondly, the fact that there are probably less germs in your home than the hospital – a sobering thought.

Although it was of course nice to be home, it felt a little scary. There was something comforting knowing that a trained professional that had seen hundreds of transplants was a mere press of a button away. We live around 45 mins from the hospital. When I got home, I pretty much went straight to bed after taking my first 9pm collection of tablets with a nice cup of tea, because we had an early start the next morning – our first outpatient appointment at 8.45!

TabletsI take a few tablets each day!

Although I was in bed early, I was up every 2 hours throughout the night to pee – taking my little black bag of pain meds with me every time. It was a combination of an overactive new kidney, trying to sort out what on earth was going on with my post dialysis body and a bladder shrunk from years of below normal urine output. It made for a very tiring night. Before I knew it, we were in the car at 7.30am to make our way back into Seattle for a blood test before 9am and then an 11am appointment. Let me explain that.

The level of one of the anti-rejection meds (Tacrolimus or Prograf) is really critical. Too little and your body can reject the new kidney, too much and you’re basically being poisoned by a very powerful drug. Initially I was on 5mg in the morning and evening, to be taken strictly at 9am and 9pm, 12 hours apart. To monitor the level in the body, you need a blood test just before the 9am dose to see how low the level is. My schedule was therefore Sunday blood test before 9am, then Monday follow up appointment to adjust the meds if necessary and the same on Wednesday and Thursday – basically 4 trips into Seattle each week. This wouldn’t be a problem, until you remember the frequency of the need to pee, coupled with a trip that can be anything up to an hour in rush hour. Although my body was getting me up every 2 hours through the night, initially I was peeing during the day every 45 mins. And at 45 mins I HAD to go. The journeys were interesting – at least I had the pee recording bottle (I didn’t need to use it you’ll be relieved to hear – not sure relieved is the right word!)

Each appointment required you to take your folder and meds with you. You are required to take your weight, blood pressure and temperature twice a day and record it on sheets in the folder. Also, if they make a change to your med list, they will help you adjust your pill box if you wish. The first appointment on the Thursday was fine, all the blood results looked normal, the scar was healing well. And although I was zero on the pain scale, I was 2-3 on the soreness scale. Remember my little black bag of meds?

I just questioned whether or not the catheter was working, because although I wasn’t in pain, I was certainly sore especially when I was sitting, rather than lying down, in other words when my body was folded and the incision area was squashed. I had looked in the black bag and considering the medication was due to run out on Friday and my wife had been instructed to remove the catheter, the ball didn’t look small enough. I mentioned it and they looked at the ball and agreed. Something wasn’t working properly. By this time, I had transitioned from a pre-transplant coordinator to a post-transplant one and she said, well we might as well remove it then. I was happy to hear that, as frankly I was sick of carrying this bag around everywhere! My wife was also relieved not to have had to do the job on Friday.

All you have to do is pull the tube out and look for the black tip to make sure it’s all out. Simple. She pulled and although it moved, it wouldn’t come out. “That’s odd”, she said, “I think I’ll get the surgeon to help”. After a few minutes Dr Santhanakrishnan, my surgeon, came in and he too failed to remove it. He asked for a suture kit and then proceeded to fiddle around with the tube. Eventually it was out and a plaster placed over the hole. He showed me the tube. The end with the black mark was kinked around 180° and it didn’t seem as if it had been working at all! I had carried the bag around since Tuesday for nothing! Frankly, I think it must have been doing “something”, because as I said before, I really was only in pain during that Tuesday night.

The Appointments Continue

And so we began our ritual of driving into Seattle. Sundays to the hospital as the clinic isn’t open on Sundays, and Monday, Wednesday and Thursday to the clinic. Pretty quickly we saw less people each visit, usually just the medical assistant who takes the vitals and the nephrologist. Each visit has been fine, no issues. I only needed to record the fluid in and out for this first week, so I’m done with the measuring bottles in each bathroom.

The second week I started to do a mile walk each day, all flat no hills. To be honest I had a bit of resurgence of pain towards the end of the week. Maybe I did too much with the walking? Although I had an Oxycodone supply, I really didn’t want to take it. On Friday I succumbed and took 5mg. It made no difference and I had a pretty miserable weekend.

Now, it’s three weeks post op and they’ve told me I can have a bath because the scar has healed so well and I’ve been cleared to drive. The pain has subsided to just be just a little around the scar, easily bearable. And the frequent peeing has certainly improved, not quite back to normal, but it’s clear the bladder is expanding again and I’m only up once during the night.

My last thing to do will be in a few weeks’ time, when I have to have a stent in my bladder removed. I didn’t mention that before, but it was placed during the operation to support the new urethra where it is joined to the bladder. It’s removed in the only way possible (I’ll leave you to work that out for yourself) and no, I’m not looking forward to it. I will add an epilogue to this post to let you know how it went!

In Conclusion

Frankly, I am beyond amazed at how well it has all gone. Yes, there have been a few wrinkles along the way as you’ve read, but they’ve been really minor in the overall scheme of things – really minor! I feel so lucky, I really do. So I’ll finish with some thanks…

Firstly to the benevolent donor, whoever you are, I just can never thank you enough for the amazing gift you have given me and my family – and you may never know how grateful I am. You’ll get my letter of course in February next year and I do hope you get in touch. (If you happen to read this post and you were in surgery at 9am on the 12th donating a kidney, well IT WAS ME!)

Secondly, each and every member of staff at Swedish, both at the hospital, the clinic and the blood test rooms have been absolutely magnificent. Kind, helpful, informative to a person. I will reiterate that my surgeon Dr Santhanakrishnan was amazing, especially with the scar glue as previously mentioned – and my main nurse Fabian was awesome.

Thirdly to my family, friends and colleagues at work that have sent their kind wishes, cards, flowers and likes on social media.

Last, but certainly not least, my magnificent family. You just cannot do this by yourself, it would be impossible. The adjustments my wife has had to make to our routines, the extra cleanliness the transplant demanded, the change of diet – the list goes on, but finishes by her just being there for me, through the laughs and the more undignified moments. My two UK daughters were so kind and helpful despite being jetlagged and to have them with me to share the journey was beyond amazing (by the way, they both also have PKD and one works for Kidney Research UK, so they both had a vested interest in seeing what happens). And my 3 children here in Seattle have also been amazing, putting up with a summer that was cut short and looking after themselves when my wife and I have been out at the hospital or clinic.

Thank you doesn’t seem to be enough, but it’s all I can offer.

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My supportive family – back home

And that’s the journey so far. I hope it’s been interesting and for those reading in a similar position to me, I hope it’s been a source of inspiration to you. Remember though that everybody’s journey is different and every healthcare provider will do things differently. You may be as lucky as me, you may not – either way I wish you well on your own personal journey.

Wayne Smith
Sammamish WA
September 1st 2019

Ear. Cannot. Forget.

I’ve been wanting to write this “mini review” almost since my first play of Steven Wilson’s release Hand. Cannot. Erase. but I haven’t for some reason. I don’t really know why, maybe because I knew I’d be writing a gushing piece and I didn’t want to appear to be fawning towards him after my gushing review of Raven.

In all honesty, the news back in late 2014 that he was releasing this album in many ways troubled me – I didn’t want it to arrive. I loved Raven so much, it didn’t seem possible that it could be improved and I didn’t want to be disappointed. I ordered it, of course, in fact I ordered the deluxe edition as I tend to always do these days.

I chose to give it a first listen on my Astell & Kern player with IEMs to try and focus quietly on its content. As I’ve said before, I absorb music, every nuance. And it takes me quite a long time to feel comfortable with a new piece. It took one listen. It was honestly one listen.

I was familiar with the proposed concept from the pre-release material and website, so it made it easier to absorb the storyline as the tracks went past. I’ve now got to the point where I feel I know every piece of the album in intimate detail and I’ve also had the privilege of hearing it played live in Seattle recently.

It is definitely better than Raven in my opinion, for different reasons. The tracks superbly and emotionally convey the story in a way that challenges the listener to hold back their tears, it is a sad story that many will identify with to some degree or other.

Whether that’s with the themes of isolation on a deeply personal level, or just the “always connected” themes of today in Home Invasion, there’s elements for all.

Given the superstar nature of the ensemble, you almost don’t need to comment on the musicianship but it is surely churlish not to. Each of the core musicians contribute substantially to the whole but for me the absolute highlight is the bookend solos by Adam Holzman on Moog and Guthrie Govan on guitar on Regret #9. The percussion of Marco Minnemann and bass/stick of Nick Beggs equally superb throughout.

The story throughout is, to a degree, ambiguous. It’s a matter of record that the inspiration for the album was the tragic circumstances surrounding the death of Joyce Carol Vincent that was turned into a documentary Dreams of a Life. However Steven Wilson has gone on record as saying that the album is not a direct telling of that story and a few interviews subsequent to the album’s release have revealed tantalizing glimpses of the meanings. The live show takes that further forward with backing videos providing other visual clues, without telling the actual story.

I’m really not sure about the ending, in terms of the story. Again, Steven Wilson has said in interviews that unlike the Vincent story, his protagonist does not die, but I find it hard to listen to the penultimate track Happy Returns and then the final Ascendant Here On… without a vision of a sad death. With previous references to medicine chests, the line “But I’m feeling kind of drowsy now so I’ll finish this tomorrow” seems to me a possible reference to an overdose. But who am I to challenge the word of the writer.

I’m not a great fan of Steven Wilson’s band work (Porcupine Tree et al), it’s really his solo works that have left an impression on me, and this fourth solo release has shown an artist confidently growing with each new release. I no longer fear another release, in fact I’m intrigued as to the direction he takes next. Whatever direction it is though, nothing will take away the immense beauty and power of 2015’s Hand. Cannot. Erase.


Shortly after writing the above, Steven Wilson was interviewed at the Montreal Jazz Festival and if you have time to listen to the full 45 minutes, I think it clearly emphasizes what I’d already written. I can identify so clearly with what he says and it only goes to emphasize what I feel, that he is one of today’s preeminent musicians…

High Resolution Audio (by my reckoning)

I’m often asked by friends and colleagues about high resolution audio, or 24 bit audio. They ask my opinion simply because they know that I like music, both playing and listening and presumably decide that I must have an opinion on it. And I do have opinions.

I decided to try and write up my thoughts in a blog post to point people to, not because I don’t like the questions, but more because I found myself typing the same things over, or at least searching for the last reply to cut and paste.

To set things up, I’ll declare that I am not what might be described as an audiophile, though many would think that I am. I like my music to sound good for sure, but I don’t go to the lengths that some people do, with thousand dollar power cords, and other ridiculous things. My equipment is very good, it suits me fine, but it’s far from top of the range. I can listen to MP3 files without being snobbish, but I have spent quite a while compiling my music library with uncompressed files in a variety of formats to suit various players.

So for years, I have followed the rise of “high resolution audio”, sometimes referred to as 24bit audio (though that’s only one version of it). There are now multiple vendors of these music tracks and it’s only a matter of time before the mainstream stores like iTunes start to vend them. Sites like HDTracks offer a vast variety of genres to purchase at a higher cost than standard sites, or physical CDs for that matter.

So to the crux of the question. Is it worth buying a high res album? It’s higher resolution and usually more expensive, so it must be better surely? Well yes. And no. This is not a definitive science by any means, although quite frankly it should be – we’re dealing with bits of information that can be examine “under a microscope” so to speak, so it shouldn’t really be subjective. But it actually is. Here’s why. In my opinion.

The resolution debate

You can read about this in literally hundreds of articles online, some of which come close to the truth, many don’t. Very few speak in terms that the average person can understand. A CD comes at a resolution of 16 bits and high resolution files are typically, but not always 24 bits. At this point, the wheels often start to come off the description. What does this resolution of 16 bits mean? It simply means that at any point in the music track, any one point in time, the waveform has a discrete value and in the case of a CD it can be any one of 16 thousand values. I’m sure that everyone has seen a waveform from a music file, it’s a great big jumble of squiggly lines with peaks and troughs – the peaks being the loud bits and the troughs, the quiet bits. But if you zoom in and zoom in again, in fact keep on zooming, eventually those squiggles become one line – however complicated the piece of music, however many instruments are playing. That line represents the totality of what you hear. And at any one point in time, you can measure how high that line is and give it a number (one of those 16 thousand numbers). By the way, it’s not exactly 16 thousand, I’m trying to keep things simple.

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Figure 1 – How we usually see stereo music represented

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Figure 2 – What you see if you zoom in far enough

So invariably people compare this to chopping up the waveform into these chunks. Frequently a digital photo analogy creeps in at this point, because they are also described in “bits” and you’ve also seen zoomed in digital photos that break up into squares – you can actually see the “bits”. And people know that if you have a higher resolution photograph (taken with a better camera for instance), the detail is better because you’re chopping any given part of the picture into ever smaller chunks at higher resolution. So that must be the same for audio files too right? Because they’re digital too…

No. Stop the analogy right there. You are not comparing like for like. This is the simplest way I can explain why it’s not true. In a photo, more resolution does give you better resolution because you’re chopping up the same area (say a 1cm square) into smaller chunks. In audio, when you move from 16 bit to 24 bit, you’re not chopping up the same piece of audio loudness into smaller chunks, the chunks are the same size, you’re just adding more chunks on top of the ones you already had. You’re adding 8000 to the 16000 you already had to make 24000. Remembering what I said earlier that the higher the audio line, the louder the file? Well that extra resolution allows you to capture more “loudness”, not more detail. And this is where people just glaze over. Because they equate loudness to how far they’ve got their volume control cranked to. “Why do I need more loudness in my audio file? I just turn the knob up!”

Indeed you do, this isn’t about the playback volume (which is indeed under your control) this is about the recording volume in the studio. The extra bits are essential in being able to differentiate clearer between the intended sound (the instrument or voice) and the unintended sound (background noise). If your piece of music has loud parts and soft parts, you absolutely benefit from the extra space that 24 bits provide, if your preferred listening is hard rock, not so much…

Sounds Great, What’s the Problem?

The problem, put simply, is that this is not retrospective. It applies now in all recording studios (just about). But it didn’t apply in the 60s or 70s or 80s. Back then, everything was recorded to tape, which even 16 bit CD resolution more than covers. In fact, what you got to hear on vinyl wasn’t even from the original tape that the instrument was recorded onto, it would have been a 2nd, 3rd or even 4th generation copy (to allow for mixing, copying, safety etc.). The range of loudness that a tape could capture, even the highest quality recorder with a high quality new tape, can be completely represented within those 16,000 bits (you don’t actually need “that” many!)

So when your favorite high resolution audio site tells you that your favorite album from the 70s is now available to purchase at 24 bit high resolution (at high cost) enabling you to hear all the nuances of the original instruments because of the extra resolution, it’s just nonsense. You cannot manufacture resolution that wasn’t there in the original tape, it’s just not technically possible. You can “upsample” to that higher resolution, which is what they do, but it doesn’t make it any different to the original.

So I shouldn’t be fooled and buy high res right?

Well not so fast. There might very well be a reason. But it’s not the reason they’re telling you, or trying to make you believe. “This” is the reason why you might like to spend your money. When the transfer takes place, it’s done carefully, using high quality equipment. It is often accompanied by additional audio treatment, such as remixing. When the first generation of CDs were made of those great old albums, the audio to digital conversions weren’t necessarily great quality. So today, the equipment used is far superior and often the remixing done on today’s audio equipment uses digital sound processing that we could have only dreamed about 10-15 years ago. So if you can hear a difference between a track from a 10 year old CD and a new high resolution audio file, and you like that difference, then go ahead and buy it and enjoy it. Just do so understanding that you’re enjoying today’s mixing and processing, not the fact that it’s 24 bit. That could have just as easily have been represented in a 16 bit audio file on a standard CD.

So what do I do?

So do I have any 24 bit audio files in my music collection? Yes, I do have some, but not many. When I hear that an old recording is being re-released having been re-mastered, I will certainly buy a CD rather than a high res download, the problem is that many are only released as high res. If the album has high dynamic range (lots of loud and quiet bits) I’ll probably keep it at 24 bit, but if it’s a rock album, I’ll just downsample it to 16 bit CD resolution to save the disc space.

In conclusion

I do love the fact that this new generation of high res audio is making people interested in good uncompressed music – I think it’s spurred many remixes that otherwise wouldn’t have happened (such as Steven Wilson’s series of remixes for classic albums). I just wish that they were sold for what they are, not what they could be.

New recordings have the potential to sound amazing with modern recording techniques, because the nuances of loud and soft can be perfectly captured and passed on to listeners. Sadly, most modern music is mixed and mastered in a way that completely obliterates these nuances, but some artists are using it to great effect. In fact some artists are taking the brave step of choosing not to master their tracks at all, they’re saying that “this is my mix, leave it alone” – fantastic, but rare.

And don’t get me started on vinyl!

Ranting and Raven

It seems that whenever I take to the internet to post something, I’m either ranting about something, or raving about something. Which is fair enough I guess – if you’re somewhere in the middle, chances are you have nothing to say anyway. Well this time I’m raving. Raving about a Raven, specifically one that refused to sing.

Let me start by saying that I’m an audiophile of sorts, not a hundreds of thousands audiophile, but certainly thousands. And I am a music listener, let me be quite specific about this. I really listen to music, I don’t have music on in the background, well not usually anyway. My tastes in music are very broad, but very specific. My music collection although diverse, is limited to hundreds of albums, not thousands. And most of those I know well. And again to be specific, I mean I know every nuance of these albums, every breath, every string scrape – you get the picture. So it takes a rather extraordinary release to capture my attention. In the last decade I’m talking of albums like Moya Brennan’s “Two Horizons”, Kate Bush’s “Aerial”, Foo Fighters’ “Wasting Light” to name a few.

News therefore of a new Steven Wilson album was welcome. Legendary for his attention to detail, I knew that it would be something worthy of a listen at the very least.

The first listen was extraordinary, I’m about fifteen listens in now and it just gets better. I am not going to review each track, though I will straight away note the guitar solo at the end of Drive Home and of course, the haunting title track “The Raven That Refused To Sing”, more about that later.

Instead, let me try and be a little more specific about quite why this particular album has caused me to put finger to keyboard (put pen to paper in old money).

You see, I’ve been taken on a journey to my wonderful past, my 70s and 80s past. I remember, almost achingly, new releases coming out from my favourite artists like Mike Oldfield, Rick Wakeman, YES, Pink Floyd – and the pure joy of the smell of the vinyl, the first pristine listen without scratches (hopefully) of some of those masterpieces. And the months to follow, learning the intricacies of these pieces. I’d often end up buying a second copy, the learning process having literally worn out the grooves. In recent years I’d also re-buy titles on CD and then SACD or DVD-A where available and spend hours discovering nuances that I didn’t even know existed in the originals!

Listening to “Raven” was like being taken back to those golden days, the only difference was being transported back in time with equipment that I could not have even dreamed of back then.

Again, I’m not going to make this a debate between CD and 24 bit audio files, but I listened to this album from the 24 bit Blu-ray version, though my Ray Samuels Audio headphone amp and superb Sennheiser headphones. Just breathtaking quality. No scratches here, though to be fair, no smell of vinyl either.

But here’s the main reason I was transported back to then and it’s a little bit of a rant after all – sorry. I love old school production. One of my benchmarks has always been Rick Wakeman’s “No Earthly Connection”. You can hear each and every instrument completely distinctly, it’s all so precise and clear. I swear if a blonde hair fell out of Rick’s head onto the studio floor you’d have heard it. And I mean just that. So many modern recordings are just overly compressed trash, a mush of sounds all competing with each other for the attention of the speakers.

But “The Raven That Refused To Sing” has that distinct quality. Engineered by the legendary Alan Parsons, all I can say is that whatever he charges these days, is worth each and every penny.

There are some extraordinary musical performances from the ensemble and I really don’t want to single any one out in particular, but if you twist my arm, it would be Nick Beggs, but I am a particular fan of his bass and stick playing anyway (check out Stick Insect and The Maverick Helmsman to see why!)

And at this point, I would have been quite content with my purchase, and in spending the next several weeks learning this collection of six exquisite compositions. But then by some chance, my house emptied of children for a couple of hours and I decided to venture into the room with the surround sound, sadly only used these days for Harry Potter movies. And of course, I played the 5.1 surround sound version, again from Blu-ray. Oh my word.

I know I’m not the first person to say this on the internet, but I’m just going to add my vote, that this mix sets a new standard for 5.1 production. You are immersed inside the studio with these musicians. In fact Steven Wilson’s website has some videos showing the recording of the album – very old school with the ensemble sitting together playing as one. And this 5.1 mix gives you a ticket to a seat right in the midst of these performances. Sadly this will have to remain a treat for quiet days at home, but what a treat to look forward to.

I will finish with the title track. Again, a little old fashioned I may be, well OK I am, but I like albums to have a decent closing track. This ticks all the boxes. It’s emotional, it’s beautiful, it’s haunting, it’s mesmerizing and it builds to a gigantic climax and drifts off with a simply pianoforte theme. And please check out the beautiful Jess Stone stop frame animation to accompany it.

So thank you Steven Wilson for this masterpiece and thanks also to the band and Alan Parsons. Thank you for uniting the 70s with today. Thank you for caring about production. I cannot wait to hear what comes next!

New blog, new world

Well welcome to my new blog on WordPress. Hopefully this will see me settled down for a little while having moved blogging architectures quite a bit frequently. I thought hard about migrating my previous postings, but decided against it, choosing instead to start afresh.

Part of that reason is a move of teams at Microsoft. After nearly six years working with Microsoft Expression, I have moved onto the Microsoft Commerce Server team where I am hard at work ramping up my skills on an altogether different set of technologies. Whilst I have nothing relevant to post on my new world here and now, I’m sure I will have in the months ahead. But more than that, I think I’ll widen my posts to include my many and varied interests too. So expect to see stuff related to my music loves, photography, technology – who knows what else?