Greg Collette

Greg Collette

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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.

... http://bigdandme.wordpress.com/2011/10/28/dialysis-overcoming-buttonholing%E2%80%99s-obstacles/

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.

... http://bigdandme.wordpress.com/2011/10/14/starting-dialysis-%E2%80%93-answers-to-questions-you-were-afraid-to-ask/

Friday, 30 September 2011 00:22

Dialysis, yes, but Flash Mobs too

Late last June Julie saw an article in the local afternoon paper about a group organising a Flash Mob to appear as part of the Melbourne Fringe Festival in September and October.  The article showed about 20 people from Yarra Trams rehearsing a dance.  We really enjoyed video of the Sound of Music Flash Mob at Central Station Antwerp so we decided to get involved.

Called Crowd Play, it is the Fringe Festival’s large scale arts project for people of all ages, types, sizes and inclinations.  We both fitted into one or more of those categories, so we went along to our first rehearsal the following Saturday.  I dialyse Saturday mornings’ from 6:45am until around 10am, and after it I usually meet Julie for coffee, have a quiet lunch and maybe do a little shopping in the afternoon.  Nothing strenuous.

All that changed.  Our first rehearsal was in the auditorium of 3RRR, a community radio station in bohemian Brunswick.  There were about 30 people there, mostly young, energetic and flexible, and there was us, over 50, enthusiastic but creaky.  The dance goes for seven minutes and involves lots of arm swinging, leg kicking, chicken walking, wiggling, falling down and getting up again and even a Mexican Wave.

They began by working through each step, showing how it is done, then practicing it, then showing the transition to the next step, practicing that, then the next step and so on.  After about 5 steps, we would rehearse what we learned so far; have a break and move on.  It was great fun.  I realised two things very early.  Coordinated movement was not my strong point and it takes me a lot longer than I thought to turn through 360 degrees.

But who cares?  The idea of Crowd play is to have all kinds dancing.  It’s not a professional group, it’s just a crowd of people suddenly bursting into dance!  Not quite making the turn, or forgetting that first leg kick is half the fun.

By the end of the 1.5hr practice we were hot, thirsty, tired and well on the way to knowing the first third of the dance.  It only struck me after the session that I had completely forgotten that I had dialysed just 3 hrs before.

For the next three months, we practiced every Saturday:  a couple more times at the radio station, once in a breakout room at the Melbourne Museum in Carlton and then at the Blue Circus Studios in Fitzroy, below the ropes and trapeze.  The venues were an adventure in themselves.

Meanwhile other groups were practicing on other days, at similar public venues or at their workplaces (like Yarra Trams), where a Crowd Play ambassador would go to them to teach the dance.  In all about 500 people signed up.

Eventually we learned all the steps (sort of), and about the same time it was all of a sudden only a week to go before our first performance.  Three were planned, all on Wednesdays at 1:30pm in inner city locations, kept secret until the day before.

Our practices then became Large Group Rehearsals, held in the evening at the old Meat Market in North Melbourne.  About 80 turned up when we went on the Monday before our first Wednesday outing, and it was a real buzz with so many people dancing together.

In addition to the dance, there’s singing.  At the start of each performance a band called The Bandits, formed from people with intellectual disabilities, gradually gathers together and sings Dancing in the Dark.  Neither of us can sing for nuts, so we didn’t go to those practices.

Now all we had to do was wait until Tuesday, when we would receive an email with the first location.  It arrived just after lunch.  Our first appearance was at Flagstaff Gardens, right on the edge of the CBD to the north of the city.  There were also instructions:

On the day, arrive no more than a few minutes before the performance. Dress inconspicuously, but comfortably for dancing and singing, and only bring a bag if you can dance with it!  We won’t have anywhere to store bags and we’d hate you to lose track of it.  

There will be a “busker” with a guitar who will start singing with The Bandits – when they get to that first chorus, then everybody else join in! The dance will follow the song. 

At the end, remember to hold the final pose for a few seconds.

There will be media – both photos and video cameras there. Afterwards, some might approach you to get your thoughts on be a part of this great event.

Naturally we messaged everyone we knew and invited them along.  So much for an unsuspecting public.

Wednesday afternoon arrived and Julie and I met around 1pm near the Gardens.  We walked up to where it was happening to check out the lay of the land.  We saw a few other familiar faces, then left.  In the interim, a range of our relatives and friends arrived and set up camp.

About 15 minutes before “D” minute, we went back to the gardens and nonchalantly stood around, in direct contravention to the rules.  It’s hard to look casual when you are nervous.

Finally, the singing started and we moved forward.  Within 5 minutes about 200 of us became a genuine Flash Mob, dancing in front of a (mostly) astonished crowd.  We moved as one, more or less - I remembered most moves, but still couldn’t get those 360 turns right.  But it was great fun – what a buzz!  The audience clapped and hooted when we finished and Julie and I and every other dancer couldn’t stop smiling.

There were cameras there. We made the TV news that night, the paper the next morning and there is a  YouTube video.

Our next performance was outside the Melbourne Museum during school holidays.  There were about 250 of us there, and a bigger crowd.  It was just as big a buzz.

Our last appearance is next Wednesday.  It will be a bitter-sweet moment, at least until next year!

Who says you can’t enjoy life on BigD?

... http://bigdandme.wordpress.com/2011/09/30/dialysis-yes-but-flash-mobs-too/

I’ve had an annoying excess phosphate/calcium problem for about a year.  I knew it was a problem because I developed a maddening itch, on my arms, chest, legs and back.  It drove me crazy.  And each time I started to scratch it just got worse.  I found it hard to stop, and constant scratching in polite society is a real conversation killer.  Eventually I found ways to minimise it, but now I have just about stopped it at the cause.

Kidneys specialise in more than urine, they also manage the calcium and phosphate mix through the parathyroid glands in your neck (see this post).  Once they leave the building, the calcium and phosphate mix in the bloodstream can go haywire, causing the parathyroid glands to release too much parathyroid hormone (PTH).  This creates a range of problems from itchiness to bone disease, heart disease and abnormal calcium deposits in blood vessels and other parts of the body (including the brain!).

One way to control this is to take phosphate binders (like Caltrate) with each meal.  These binders attach themselves to the phosphate in the meal and then head for the bowel, rather than allowing the phosphate to bind with the calcium in the bloodstream.

In dealing with this problem, my nephrologist first upped the number of Caltrate (calcium) phosphate binders I took, then offered a different type, Alutabs (aluminium hydroxide), made from aluminium.  There has been lots of studies that indicate aluminium is one of the causes of Alzheimer’s Disease, so I politely declined.  Some side effects are better than others, but Alzheimer’s ain’t one of them.

Then we tried Renagel (sevelamer hydrochloride if you prefer), which also didn’t suit.  Side effects vary with each person, and mine were stomach ache and diarrhea, so no.  Finally we settled on Fosrenol® (lanthanum carbonate hydrate) a horse pill-sized chewable tablet I take with meals.  This worked initially, but gradually my PTH jumped again.

This had happened to me before.  Then, the only way to stop the glands was to surgically remove them.  I had 90 percent parathyroidectomy in 2001, but over the next ten years they grew back even stronger (if only kidneys could learn that trick).

Now they can be stopped with a drug.  It’s called Cinacalcet, or Sensipar®.  It lowers PTH by telling my parathyroid glands to stop releasing too much PTH into my blood.  It also lowers calcium and phosphate levels.  I think of it as chemical surgery.  Once you start, the tests and management is the same as surgery.  I started on 30mg per day and daily blood tests to track my PTH, phosphate and calcium levels.

Ideal levels are:

  • PTH:  between 15- 21 pmol/L
  • Corrected calcium:  2.2 – 2.4 mmol/l
  • Phosphate:  1.1 – 1.8 mmol/l.

It took about a week for my PTH level to fall into the ideal range.  Once there I cut back to  30 mg every second day and twice-weekly blood tests.  My calcium and phosphate gradually fell over two weeks.  In fact the calcium fell below the ideal range, so I now take two Caltrate between meals, to boost my blood level calcium.

Sensipar’s most common side effects are dizziness, skin tingling, nausea and vomiting, with the usual undesirables less likely.  Fortunately, so far, touch wood, mine are minimal (and I would like them to stay that way).  Once all is under control and stable, I will go to weekly blood tests.

I have been on Sensipar now for about a month.  Early days, but worth documenting.  I’m looking forward to two main benefits: reduced itchiness (which is happening, I don’t use the creams anymore) and my bones recovering the calcium that has been leached from them over the last year.  I won’t be able to feel that when it happens, but, I have a bone density test coming up next year, and I am expecting good news.

I’ll let you know how things proceed.

... http://bigdandme.wordpress.com/2011/09/16/dialysis-controlling-pth-calcium-and-phosphate-with-sensipar%C2%AE/

Thursday, 18 August 2011 20:19

Dialysis, fistulas and fatal haemorrhages

This post is about fistulas, the dialyser’s lifeline.  It’s about how and why the can haemorrhage, signs and symptoms that indicate a potential problem and action to take to prevent it.

We BigD-ers need a fistula to make it easy to insert dialysis needles.  The needles are reasonably large, and cannot be inserted into normal veins.  If you don’t have a fistula and you need to go on dialysis, you usually get a Perm Cath (permanent catheter) or central line that is connected directly to one of several large veins in your neck.  If you can’t grow a fistula on one or both arms because the vein has too much scar tissue, you can have an artificial graft tube, called a graft, inserted into your arm to provide the same access.  I have written about these and how they work in previous posts.

While our fistula keeps us alive, it also threatens our lives.  It is a great big pressurised blood vessel a couple of millimetres under our skin.  A small tear or break, and we can bleed to death in minutes.  Yet we puncture it every day or two and seal it off with a pad or gauze for an hour or so, then we puncture it again.  So just how much of a threat is it?

In February 2010, I wrote a post called Dialysis: death via a damaged fistula, which was about Maya’s father, who died when his sore and swollen fistula burst in bed and he bled to death.  At the time I asked some of the experts I knew about this and all said it happens, but was very rare.

However, over the following 18 months I had a steady trickle of comments about other people who had died or came close to death from a leaking or haemorrhaging fistula.  Coby  wrote about a dialysis patient who nearly died when her infected fistula burst.  Salma’s father was saved by intensive care when is fistula bled out.  Steve’s father bled to death in 10 minutes when his fistula burst after two weeks of problems.  Mek’s father bled to death after multiple bleeds over a few weeks.  Sandy’s husband had an emergency flight that saved his life after his fistula haemorrhaged.  Ebony’s father found his wife on the kitchen floor after her graft burst.

What did these people have in common?  In each case, it didn’t happen overnight.  Their fistulas were red and sore (infected or blocked), or had weak spots that failed to re-seal after needling:  their fistulas needed medical attention.  I have praised the people in my unit before, but they deserve it.  They are constantly examining everyone’s fistula.  If there is a problem, they act: either with antibiotics and treatment, or a referral to a hospital or vascular surgeon, to examine and rebuild the fistula.  In a unit of 40 people, I know of at least 10 that have had rebuilt fistulas.

In each of the above cases, this didn’t happen.  Dialysis unit/medical staff missed, ignored or played down life threatening fistula problems.  And any fistula problem is life threatening.  In most cases, the person writing the comment was exploring legal action, and rightly so.

So how common are fatal haemorrhages? 

It seems to depend on the quality of the unit.  In a well-run unit, fistula/graft haemorrhages are rare.  That doesn’t make it any less traumatic for the families when it happens, but mostly, unless you have some specific problems with your graft or fistula, it is not something to lose sleep over.  Most fistulas and grafts are solid and robust.  Fistulas grow slowly and are usually quite firm and elastic.

What causes a haemorrhage?

Typically, there is some weakness in the fistula or graft.  The owner may go to bed and during sleep lie on his/her fistula, creating a higher pressure than it can take, causing it to reopen a needle access hole, or to tear at its weak point.  Arterial blood at high pressure then streams from the opening.  If no action is taken, that person then dies from loss of blood.

What can cause that weakness?  Signs and symptoms

In a fistula, over several few years the vein wall can expand a lot.  It can look like you have a mouse under your skin.  I have seen quite a few mice; I have a couple myself.  If the expansion becomes too large (it can look Popeye’s forearm or an extra bicep), the walls of the fistula become very thin and weak.  Just like a balloon that has been blown up too high, it loses its suppleness and becomes fragile.  With very little fistula wall to repair, and only a thin layer of skin over them, access holes can become points of weakness.

As they get older, people in their 70s and 80s, find their skin becomes thinner and more fragile.  Their fistulas will naturally be weaker and less robust than that of a 40-year old.

Grafts in particular can become blocked or leak into the skin surrounding access holes.  Blockages build up pressure in the graft, combined with unhealed access holes create weaknesses. Also, since it is a piece of inert material, it won’t get sore like a fistula, so there are no symptoms until the problem (or infection) is well advanced.

Infection, which may start on the outside of a fistula or graft near an access hole, can if untreated, gradually burrow into the fistula and eat away the fistula wall, creating a hidden, fatal point of weakness.  Infection is usually accompanied by swelling, pain and sometime pus discharge, which are strong signs of potential danger.

Action to take

There are at least two lines of defence.

At the last line of defence, dialysis unit staff and your nephrologist should be watching for signs of fistula/graft weakness, and take action as above.

At the first line of defence is us, the fistula owners.  We need to check our fistula every time we dialyse.

How does a fistula grow as big as magician’s balloon?  One day at a time.  Keep an eye on how big your fistula is growing, and talk about it with the unit staff.  Big fistulas are not only unsightly, they are dangerous.  Talk to your nephrologist and arrange for fistula surgery with a vascular surgeon to reduce it back to “normal” size.

Look for infection: any pain, swelling or discharge.  Tell your nurse or doctor as soon as possible and begin a course of antibiotics.  Be scrupulous with hygiene.  Wash your hands and your fistula when you arrive, and again before you leave.  Dress and sterilise any cuts or scrapes on or near your fistula.

Look for blockages.  Lift your arm over your head and check that it collapses as the blood flows from it into your body.  Check that it recovers its shape when you lower your arm and the blood returns.

If find anything you don’t like about your fistula, tell the unit staff.  And don’t take no for an answer.  If they are slow to act, tell them that you consider the problem life threatening.  Make sure they do something.  Tell your carers and get them to tell the staff.  Tell your doctor.  Make a fuss, but get it fixed.
The alternative is too bloody to think about.

... http://bigdandme.wordpress.com/2011/08/19/dialysis-fistulas-and-fatal-haemorrhages/

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