Its hot today: 32 °C (90 °F), which is normal, because summer started here just over a week ago.  Melbourne has a temperate climate, mostly a comfy 22° (68°F), with the occasional dip and blip as the seasons dictate.  Until yesterday we had delightful spring temperatures of 17°C to 22°C (63°F to 68°F); so it has been a big and a quick change.  But no problem!  I will be acclimatised within a couple of weeks and this will be the new norm.

Things were different before I went onto the BigD. I would have begun complaining about now that it was too hot, and not stopped until autumn arrived with some blessed low temperatures.

Not so now that I am a member of the BigD club.  One of the founding directives of the club is that you don’t drink more than about a litre a day of any fluid.  This includes not only water, coffee, tea, fizzy drinks, beer and whisky, but also watermelon, jelly, porridge, rice pudding and any other high fluid food.  This is because without kidneys or kidney function, the fluid has no way to leave the building.  So it stays in your blood, rests in body fat, ankles, lungs and anywhere else that gravity and body cavities allow.  The result is bloat, which is unsightly, uncomfortable and dangerous.  It becomes difficult to breathe, and the added load on your heart can be – and often is – fatal.

I have always liked to guzzle water (or an icy soft drink –not to mention beer – mmm… er, sorry).   From a young age I loved gulping water direct from the tap: cold, wet and plenty of it.  Perhaps I knew that kind of joy would be denied me later in life, so I drank as much as I could before the kidney bell tolled – who knows.  Anyway, now it’s a litre a day, and has been for so long that it is second nature.  I always reach for the smallest glass, half fill it and leave a little in the bottom when I finish.

Most BigD-ers can tell is they have drunk too much.  I know by my wedding ring, which doubles as a body fluid indicator.  Immediately after dialysis, when I’m at my base weight, my fingers are really thin, with very little flesh.  When I interlace them, I can feel the bones and not much else, and it’s possible for me to gradually slide off my wedding ring.  After a day’s break from dialysis, my hands become fleshier, and it sort of feels normal (softer) when I interlace my fingers. There is no way I could get my ring off.  If I have drunk too much, they become quite plump, and I can barely find my wedding ring.

So why do I like summer?  On a hot day, in the sun or the shade, we sweat.  A lot more than we imagine.  I usually have a drink or two of water or tea in the morning and the same in the afternoon.  In summer, each drink seems to evaporate as you swallow it.  On a really hot day, a drink an hour may not keep up with evaporation.  So guess what?  Guzzle time.  Every few hours through the heat of the day: a whole can of lemonade (Coke, with all that potassium is a bridge too far), or even the odd icy beer.  Just like before this BigD business began.  Bliss.

Just writing about this has made me thirsty, and I happen to know that there is a small can of lemonade with my name on it in the fridge.  Roll on summer.  Cheers!

Life away from the BigD machine can be pretty good sometimes.  Julie gave me a birthday present in August which was booked out three months ahead – a Boeing 737 Airliner flight simulator.  My trip was for an hour, flying into and from our local airports and then into and from an airport of my choice.

I have flown plane (non-simulated) before.  I learned to fly a Cessna 150 in Albury, about 35 short years ago.  (It is only since I reached my 50s that I have been able to say 30 years of this, 35 years of that.  It gives me a funny (not Ha Ha) feeling, because I always thought that people who said that kind of thing were old.  I don’t feel old; in my head I feel around 25, but with some occasionally useful, occasionally embarrassing experiences.)

Still, I digress.  I learned to fly when I worked for a small defence electronics company in Albury.  It was a private company, owned and run by the founder, Lindsay Knight.  His products were smart target systems for anything that went bang, from pistols and rifles to vehicle mounted guns and tanks.  He had offices in London and South Carolina and travelled everywhere selling.  He had his own plane, a Beechcraft Baron and which he and his pilot flew around the country.  I was writing his technical manuals and I became friendly with Warren, his pilot.  Warren had invented a nifty little device for helping people land small planes safely and he wanted to patent it.  So I helped him write the patent for flying lessons.  The device was a clever design and worked really well, but like many smart inventions, it didn’t get the exposure it needed.

I well remember my first solo flight.  I met Warren at 0630 on a cool autumn morning for my usual half hour lesson.  We did some touch and go circuits and unexpectedly, Warren said: “You’re ready, do a solo circuit.” He jumped out, and deliberately without thinking, I pushed in the throttle lever and took off.  It was surreal, flying in cool, still crystal clear air all alone, the only one responsible for my safe landing.  It was a perfect circuit and a perfect landing.  And I was still on a high when I went home from work that afternoon.

A little after that we had out third child and Julie suggested that no matter how safe it was, I would be more likely to be there for the kids if I stayed on the ground.  And mostly I have done so, apart from a few lessons in an ultralight (something like a lawn mower attached to a sail) a couple of years ago, and a joy flight in a Tiger Moth last year.

Still, I’m very glad I learned to fly when I did.  I can’t fly now, because after the last transplant I lost much of the sight in one eye, and you need two working eyes to be a pilot.

However, I wanted each of our kids to understand the thrill of flying a small plane, so on their 17th birthdays I took each of them to a local flying school and arranged a half-hour flight, where the instructor gave them an introductory lesson.  None of them have taken up flying – yet – but they have at least had a go.

So last Sunday I climbed into the 737 simulator cockpit (with, for the first time, Julie and my daughter Kathy as passengers in the seats behind me).  I had a briefing from the instructor and when I looked up, we were sitting on the tarmac at Melbourne Tullamarine.

On the runway at Tullamarine

I pulled back the throttle, gently touched the rudder pedals and within a minute, we were airborne.  It only took a moment to believe that we were flying, and as we turned for Avalon airport, much of the feel and responses I haven’t felt for so many years came back to me.  It is so much like the real thing my heart was racing and I was sweating to get aligned for the landing.  The first half hour, touching and going at Avalon, Moorabbin and Essendon airports and landing aback a Tullamarine was a great way to get back into groove.

Innsbruck airport between the mountains

For the last half hour, I chose Innsbruck airport in Austria.  It is a difficult airport, located in a river valley with very high snow-capped mountains all on both sides.  Take off involves getting high very quickly while flying left in a gentle arc that follows the valley.

Getting above the snow line

Mountains get very close.  But the 737 is very powerful and the plane lifts easily over the peaks.  Landing is similarly cramped and the runway is short.  But again, the plane design, air brakes, landing gear and flaps make it relatively smooth.  Luckily there was no wind shear or turbulence.   However we did simulate losing one engine.  That was fun.

In fact the whole thing was a real buzz.  It’s over week now since the flight and I am still enjoying it.  Hopefully I can afford a longer flight next year!  Alternatively, I wonder if they can set up a BigD machine in the co-pilot’s chair, so I can benefit on two fronts?

The one hour flight cost A$275.  The simulator is part of the Flight Experience group. www.flightexperience.com, with simulators in Australia in Melbourne, Sydney, Brisbane, Adelaide and Perth, and in Hong Kong, Bangkok, Singapore, Kuwait and Europe.

Earlier this week I received an email from Charlotte, a renal nurse in the UK, telling me about an excellent podcast on RTÉ Radio 1 in Dublin, called Wanted: Kidney.  The podcast is based around Regina Hennelly, a 29-year-old Dublin journalist who has been on PD for two years.  It covers a lot of ground, beginning with Regina’s story: her kidney failure at 25, her experiences on PD; and its primary theme, how it feels waiting in suspended animation for a transplant.  It also talks with other BigD club members, and provides an excellent overview of the state of kidney transplants in Ireland.

It is well worth the 36 minute investment.

[Regina also writes a blog “about dialysis and other curiosities” called This Limbo.  Her profile says it all: Fun-loving non-smoker, social drinker (29), looking for necessary new lease of life.  WLTM healthy kidney who shares her interest in travel without Peritoneal Dialysis machine and her fetish for midriffs without tubes attached.  GSOH in bad times essential. Only kidneys interested in long-term relationship need apply.  (Not being experienced in matching service lingo, I discovered that WLTM means Would Like To Meet and GSOH means Good Sense Of Humour.)  It’s a good read, especially for fellow PDers.]

Talking of transplant waiting, the time obviously varies depending on where the donor kidney is coming from.  There are two sources: living donors (typically family or very good friends) and deceased donors.  I have been lucky enough to have had both.  My wife Julie donated one of her kidneys to me in 1995. Unfortunately because of rejection that kidney only lasted three months.  I received a deceased donor kidney in 2005, which lasted until 2008.

There is quite a workup time for living donors, which can be 12-18 months.  A lot has to happen and I’ll cover this in a later post.

Like in Regina’s podcast, there has been a rash of transplants here (in Victoria) over the last year, from both living and deceased donors.  But the list continues to grow, and the typical waiting time, if there is such a thing, for deceased donors is 2-4 years.

I say if there is a typical waiting time, because it is not just the amount of time you have been on the list, but more importantly, how good a match the donor kidney is.  There lies the rub.  Donor and recipient matching involves testing in three areas: blood type matching, tissue type matching and crossmatching, and you need to pass all three before your position on the list gets you a kidney.

Blood type matching is straight forward: a recipient with blood type O can receive a kidney only from a donor with blood type O; a recipient with blood type A may receive a kidney from a recipient with blood type O or A; a recipient with blood type B can receive a kidney from a donor with blood type O or B; and a recipient with blood type AB can receive a kidney from a person of any blood type.

If the blood types match, the next tests are for tissue type.  For kidney transplants, there are at least six specific blood and tissue types, called antigens, which define how well you may be compatible with a donor.  The best compatibility is a six-antigen match.  This match, which occurs 25 percent of the time between brothers and sisters having the same mother and father, also occurs from time-to-time in a random fashion in the general population.  As the number of antigen matches fall, so the outlook for a long-term transplant falls.  This outlook can be improved with a greater (and sometimes heroic) use of anti-rejection drugs, but these have their associated, cumulative and usually unpleasant side effects.

If you pass tissue type matching, the final crossmatch test mixes donor and recipient cells and serum to determine whether your body will attempt to reject the kidney.  The test outcome is either positive or negative: a positive crossmatch means that you have responded to the donor and that the transplant should not be carried out; a negative crossmatch means that you have not responded to the donor and therefore transplantation should be safe.

So, in summary, the deceased donation transplant process works like this:

• You provide regular (usually monthly) blood samples to your transplant hospital/blood service. Then, when
• A kidney becomes available to your transplant hospital
• If your name is at or near the top of the waiting list (based on the time you have been waiting)
• The transplanting hospital/blood service will check that your blood type matches the donor’s
• If OK, they will test your tissue type compatibility
• If acceptable, they will crossmatch your cells with the donor’s
• If there is a negative crossmatch,
• They will offer you the kidney.

Then the fun begins, and it’s usually worth the wait.

Buttonholing is great: less pain, easy insertion, less chance of a blowout, less time holding the needles after removal – what’s not to like about it?

Well there are a couple of obstacles, at least for me.  Both can slow you down, but both can be overcome.

First the scab plays hard to get.  If I push the needle all the way in, so that the hole is sealed by the barrel of the needle (which is the intuitive thing to do) the hole eventually forms an indentation.  Scabs being what they are grow over the indented hole rather than flush with the surface and can be  quite difficult to remove next time.  Difficult equals time consuming.

One way around this is to leave a small part of the needle exposed (say width of a couple of hairs) at the hole.  Tape the needle so that the needle stays in that position, rather than being pushed into the hole.  This takes a little practice, but can be quite effective.

Second, my fistula moves like Harry Potter’s staircase.  I find that after about three months the easy-open hole in my fistula moves away from the needle track.  Fistulas are always growing, even if only a tiny amount a week, and eventually the hole wanders away from the business end of the buttonhole track.  As a result, it becomes progressively more difficult to find and needling takes longer.  You can of course ‘chase the hole’ by moving the tip of the needle in various directions until you find it, but this only works for so long.

I still hold the needle by the plastic tubing below the barrel use a gentle twirling motion to search for that easy entry.  Pushing the needle hard into the fistula wall just causes trauma.

But eventually I need to make new holes.

I spent more than 10 minutes searching for the holes for last time a week ago and decided to create some new buttonhole tracks, with sharp needles.  Because my fistula is pretty scarred and calloused, it takes quite a push to start a new hole, and it can be a little messy (blood wise) until the hole forms.  However after about 5 sessions, the hole starts to form a pathway.  Within a further 5 sessions, the track should be sufficiently established to switch to blunt needles.

In choosing the new buttonhole locations, I look for three things:

1. Ease of access (no strange angles or half-obscured entry points)
2. A short path between the entry hole and the fistula wall (less chance of creating multiple tracks)
3. Sufficient needle space to accommodate the entire needle in the fistula (so I don’t risk going through to the other side).

These requirements often mean revisiting old locations.  (Or perhaps I am a chicken about attacking half hidden virgin real estate.)

Once the track is formed, you can feel it.  If you press down gently on the area around the hole you’ll feel a hard, oblong mass (a bit like a cyst) starting at the hole and ending inside the fistula.  It’s actually a callous tunnel.

Once you abandon a buttonhole location, the hole itself heals fairly quickly, but it takes months for the tunnel to disappear.

I should say that this 3 month buttonhole life span is not everyone’s experience.  I have heard of many buttonholes lasting at least twice as long – and sometimes for years.

For me, it may be that the gym has something to do with it.  Apart from a break of about 4 months, I have gone to a gym for about the last 5 years.  During this time I have used weights to try to keep fit, including on my forearms and biceps.  While I have only registered miniscule growth (small children still kick sand in my face), maybe it has been enough to cause my fistula to wander.

Perhaps this is a lesser-known example of Newton’s First Law:  for every action there is an unwanted side effect.

Last week I received this moving email from Emily, describing how she and Edward (not their real names) felt when Edward eventually began dialysis.  I am sure it will strike a chord with BigD-ers and their partners/carers everywhere.  She also had lots of questions, like we all did when we started but were too embarrassed or didn’t know who to ask.

I think Emily’s email, and maybe my answers, will be relevant to many other members of the BigD club, not the least because they will realise that they are not alone.

Hi Greg,

My name is Emily and my partner Edward has just started the BigD .  Last week, a beautiful nurse at the Austin Hospital, I think her name is Janice referred me onto you and said that you had a very positive outlook and it might be good for to get in contact with you and have a chat.

Edward and I are both 36 years old we have been seeing each other for nearly a year, we have taken the next step and I recently just moved in with him a couple of months ago.  Edward discovered he had Chronic Kidney failure around this time last year when he nearly died because being a bloke he thought he just had a really bad flu  They discovered that Edward was born with only one kidney and that kidney has failed on him.

So when I started seeing him I knew that he had kidney problems and he was doing everything he could to keep off the Big D.  Many would probably say that he had a year of grace while he ran away from his illness. To his defence he didn’t want to be defeated and I tried my hardest without really knowing much about his condition to support him.  So I did everything I could to find information about his illness and find out holistic approaches to help him to keep off the “D”, I even looked up things to see if we could have any normality in our lives if he did have to go onto a machine and also about transplantation.  I suppose I wanted to make sure I could find the positives in something so negative to be a better support for him.

I had noticed over the last couple of months how increasingly tired he became and urged him to see a doctor but he didn’t want to go because he was afraid that they would put him on dialysis and I believe that for him it meant he was no longer in control of his body or illness anymore.  He would be defeated.  A couple of weeks ago he had a stress test and others on his heart and discovered that he had an enlarged heart.  

We got a the phone call Friday night from the doctor at Austin before we were going out that night and he said that Edward needed to start dialysis the following Monday.  After the call we both broke down and cried, the inevitable had happened and our lives were not going to be the same.  We had both been beaten and because of his heart did this mean he wouldn’t be able to get a transplant?  But I wasn’t going to give up, all that weekend I looked into as many websites as I possibly could to see if our lives would be altered too much and if we could do all the things we had planned as a couple.

• Could we still go to New York in January?
• What about children?
• Will he die?
• How long does it take to receive a transplant when you don’t have a living donor?
• What about other holidays?
• Could I give him one of mine?
• Will he get sicker?
• What does our future look like now?
• How will he run his business if he is on Dialysis 3 times a week? (Edward has a successful Sheet Metal business and has at least 12 people working for him)
• And most selfishly on my behalf, do I need to give up my dreams and hopes for my life and future to support him?

That Monday I went into hospital with him as support and the reality hit me so hard that it was like a massive kick in the guts.  Seeing the machine and watching his blood being filtered, listening to the dietician and the nurses talk to us about the reality of our lives and lifestyle now and seeing the other patients sucked out any life of hope I conjured up for us as a couple and him and me individually.  

Edward had told me that weekend that he would understand if I wanted to leave him because life was going to get hard for us now, but I reassured him that we were doing this together.  I told him that in every relationship there are times when we need to be each other’s strength when the other isn’t feeling strong enough and I knew what I was getting into when we started seeing each other so I wasn’t going anywhere.  But after Monday I wanted to run away and hide, I broke down in the hospital in front of the nurses and Edward. I just didn’t believe I was strong enough to cope because I had lost all hope.  How weak am I?  I’m supposed to be Edward’s support and here I am sulking like a baby!!!  But where was I going to run? I love him and I wasn’t going anywhere.

Edward is very lucky at the moment that he is still going to the toilet so his not on fluid restrictions.  I think he is down and very angry.  Although he only started the “D” I can tell he is getting edgy already sitting there doing nothing for 4.5 hours 3 x a week.  He tries to bring his work in with him but he finds it difficult to do in there.

Greg, I want to support him the best way I can but just need some advice on what to expect. I think he needs a friend or someone who is going through the same thing to talk to.  Are there support groups or social groups?  How did you and your wife cope?  Did you find it an issue running a business with your illness, how did you find the positives?  I’m ok now with everything but I just want to know the best way to support him and want to know the emotional ride he may feel as we go through this together.

I hope I am not asking too much of you and haven’t bombarded you with to much info but will look forwarded to hearing from you.

Thank you also with positivity and encouragement that you give in your blogs, you are a real blessing to so many people including me.

Regards, Emily

My response to Emily included answers to her questions:

• Could we still go to New York in January?  It is still possible, but it will be more expensive.  There are no holidays from dialysis.  One treatment can cost $600 or more in the US (and parts of Europe).  You will need to book ahead.  The best approach is to arrange for BigD through your dialysis unit.  They talk the same language…
• What about children?No problem there, but start early.
• Will he die?  Not from dialysis or kidney failure.  Most BigD club members eventually die from heart failure. This is because once you stop urinating, the body has to hold large amounts of fluid between dialysis sessions.  This puts a lot of strain on the heart, and it eventually becomes weak (unless you manage your fluid intake, among other things).
• How long does it take to receive a transplant when you don’t have a living donor? A typical transplant workup takes 12 -18 months.  There is a lot involved: compatibility testing, psychologist interviews, a myriad of blood tests over quite a long period, attending briefings and training, etc.
• What about other holidays? No problem with holidays.  There is a book available in most units that lists all Australian dialysis units, with indications of availability, contact numbers, etc.  Start there and work with your unit staff to arrange the dialysis.
• Could I give him one of mine? If you are compatible.  You need to be tested.  Talk about it with you unit staff.  They work closely with the transplant team.
• Will he get sicker? As long as he continues with dialysis, there is no reason why he should get sicker (not counting all the usual other threats to life that bump into us each day).
• What does our future look like now? Your future is what you make it.  Edward’s kidneys have failed.  That’s the problem.  Luckily dialysis is there to help you get your life back.  Things will be different and a little frustrating, but its better than the alternative
• How will he run his business if he is on Dialysis 3 times a week? (Edward has a successful Sheet Metal business and has at least 12 people working for him). Like all businesses, Edward will have to rely on good support staff.  I have been running a business while on BigD for 16 years.  Things can continue without me because I am always in phone contact and I have some great people to help.  Also, because it was my business, I didn’t have any difficulty getting away to dialysis.  This is not always the case if you work for others.
• And most selfishly on my behalf, do I need to give up my dreams and hopes for my life and future to support him? That’s a tough question.  You will definitely have to put yourself second some times.  If Edward (and you) eventually decides to dialyse at home, your time will not be your own much more than if he stays at a unit.  I know of marriages that have broken up and of others that have become stronger.  There are ups and downs and constraints and frustrations, just like there are for healthy people.  But if your dreams are based around both of you, rather than just you, you have a pretty good chance.

As you can see there is a lot to say, and we have only just started.  I’ll keep you posted on Emily and Edward’s progress.  Comments most welcome.