Back in May 2009, after yet another funeral, I wrote There are only three Ways Out, about the three choices we have with dialysis.  Around the same time, Robert Longstaff, then a newly nominated BigD club member in Sydney, faced the same decision.  He looked at the alternative squarely in the eye and after much reflection decided to keep going.

Fortunately for us, Robert put his thoughts during that time to paper, and has kindly consented to share them with us and the BigD community at large.

TO DIALYSE OR NOT

This piece is written by one who has faced the above question, with the hope that others in the same situation might be better informed of the questions, rather than the answers, to be considered in making an informed decision.

Whilst medical professionals will answer any question you have to the best of their ability,  it is the patient who ultimately takes the decision after informing themselves on the procedure and life with it and consultation with family.

The phrase “To be not to be: that is the question” [Hamlet William Shakespeare] came immediately to mind when my nephrologist first suggested that I needed to consider becoming a dialysis patient, after I had decided that any kidneys available for transplant would be better employed by a young person. [ I am over 80 Years]

My immediate reaction was that I would be given a unique opportunity to decide whether in the medium-term I wish to continue living or end it all.  Few are given this unique opportunity of determining time and manner of one’s dying.

I must confess that my first reaction was to decline the opportunity for a number of reasons.  I had led a full and a very satisfactory life and in fact had achieved most of my objectives as well as experiencing a whole range of interesting activities including:

• Considerable world travel in fascinating countries
• Leadership positions in the corporate world and not–for-profit institutions as well in the Royal Australian Navy
• All my five children were launched and living very satisfactory lives and making contributions to society
• My spiritual journey had taken me to a point where I have no fear of death.

I had a moral doubt as to whether someone of my age was entitled to consume a large sum of money out of the limited resources available in the health budget.

However before taking that decision, I thought it would be wise to visit a clinic run at the Royal North Shore Hospital that covered all aspects of life as a dialysis patient.

I came away with mixed feelings but more importantly I realised that my considerations to date had been centred on myself rather than looking at my family views.

Needless to say, I gave much thought as how to manage the disruption to my life that treatment would bring.  Retirement brought the freedom to be ultimately flexible and the ability to plan travel, even though, in practise, one did not often use these opportunities.  It was a perceived loss of freedom.

I rationalised that in the past I had dedicated at least 60 hours per week to maintain my financial health and that surely 15 hours per week on my health was not such a huge commitment.

Again, I was assured by my nephrologist and my dialysis unit that some flexibility in scheduling was possible.  I have changed days and sometimes skipped them but the latter only because of my general good health and excellent blood chemistry achieved by dietary control.

We enjoyed a week in North Queensland being dialysed at a local hospital.  Other patients have travelled overseas or cruised with suitable arrangements in place.

I also came to the view that I could do during dialysis what I would probably have done at home: read [a Kindle is a great asset for this] listen to music and snooze.  In other words it was a time place substitution rather than a complete change.

In fact I am reading and listening more than I would at home where my conscience would have driven me to do other jobs about the house.

Most importantly, I had totally overlooked the effect of my passing would have on my family and particularly on my wife who is many years younger than I.

In discussions with the family it was agreed that I would undertake a trial dialysis period of some six months and if, after that, I wished to discontinue the program, the family would accept my decision without argument. [I am now, 2012, approaching the third anniversary of starting dialysis.]

In closing I hope that these notes might help future dialysis patients when making the difficult decision to dialyse or continue dialysis or not, although every individual has different circumstances and my experience is not a blue print for others. 

Robert Longstaff
Sydney 

Thanks for putting up this post Robert.  It not only provides some insight into a question we all face, but helps us move past the emotion that so clouds our thinking when dialysis first changes from a word to a way of life.

Yes, hard to believe as it seems, BigDandMe is three years old today, 109 posts and going strong.  I started the blog on Easter Monday, 2009.  In some ways it seems longer, especially just before writing each post.  But I have enjoyed writing it immensely and I have gained great pleasure from the help it has given other members and the discussion it has triggered.

A while ago, Robert from Montreal wrote.  He had some really useful information to share about the benefits of varying the amount of fluid removed during a run.  Called Profiling, it’s something I have not written about, and Robert’s email is a great way to do that (thanks R0bert!).

I want to express my gratitude for your cogent essays. Since I discovered your blog several months ago, I have learned more about dialysis in its multidimensional aspects than I I’m sure I actually wanted to know but such is life in the BigD world. Today’s offering inspires me to finally drop you a line & tell you a short tale, the agent for which is your comment about the 4th hour blues.

I am on Hemo & have been for about 18 months. I go MWF – 3 x /wk for 4 hrs [+] & found that somewhere in the middle of the 3rd hours things would get pretty tough on my body in so many ways & by the end of the 4th I would be extremely weakened. Of course a lot of this has to do with various set-ups & mainly fluid removal – size that is & since I am on the heavy side, needing to remove 4 -5 K after a 3-day weekend would not be unusual – much less during weekday sessions unless I’m playing catch-up – all of this dependant on the season – the summer heat is kind to me – the winter cold & I balloon – & then there’s the hangover & the destruction of a happy normal sleep pattern.

BUT happenstance & a bit of experimentation caused us to discover that my tolerance during the first hour of Hemo was really great & that I can remove 2 K without apparent stress, so months ago we changed my routine to 2K the first hour followed by say 1.5K for the following 3 hours or whatever my goal might be. Further the Dialysis machine is programmed to a declining profile which maximizes the fluid removal in a diminishing scale to the end of the session.

So the heavy work is done up front in the first hour, medium during the second, lighter in the third & lightest in the fourth. I seem to slide into home base more easily – almost recovering during the last bits & although my body still hollers later on, it isn’t as bad – recovery seems to come more easily & I leave the sessions solidly on my feet.

Now, you may have already tried something like this or know of it or something about it or may find my method useful for yourself or others who have a hard time in those tough late hours or who knows, may object to it. . . . And another observation if you don’t mind – with dialysis removing all the water soluble electrolytes that our ticker needs to keep boogying, why is it that “they” don’t give us some sort of tonic near the end of our sessions to replace these important molecules – the B’s & D’s &? – seems like I go home have a civil dinner, crash in front of the TV for a couple of hours & wake up hungry like a bear – It’s all I can do to stop myself from feeding until I feel better. If any of this makes sense to you, let me know. In the meantime, again thanks for your studious approach, well written – as good as any good mystery or travel reportage.

Profiling is a well proven technique to help minimise the impact of fast fluid loss.  Some people don’t need it (especially if the fluid to be removed is less that say.9k per hour), though not always.  Kinds of profile vary too.  Some people, like Robert, can handle big-time amounts removed early in the run and then taper off.  Others (often diabetics) need the exact reverse: a slow build-up, with small amounts removed during the first hour, and ever increasing amounts taken of as their body adapts.

Just because it’s our anniversary I’ve decided to illustrate the point with some homemade graphics (made with PenUltimate on Julie’s iPad).  The Y-axis is fluid volume, the X-axis it time.  There are three profiles shown.

BigD Profiles

The green line shows volume vs time unchanging (no profile at all really).

The red line shows Robert’s profile, with more taken off early and less later.

The yellow line shows the reverse profile, with less taken off early and more later.

Crazy BigD Nurse/Technician Profile

Just for fun I also included the profile of a crazy dialysis technician/nurse, because I could.

Profiling is pretty standard, and available pretty well everywhere.  Most dialysis machines can be programmed to whatever profile works best for you.  As Robert said, it takes a little experimentation and common sense, but if you have the kind of symptoms Robert wrote about, maybe it’s worth a try.

Happy Easter!

Firstly I want to mention a comment from Simon on the Dialysis, Fistulas and Fatal Haemorrhages post.  Read his comment, it is both dramatic and worthwhile.

But also it underlines the increased level of infection risk when you are starting to buttonhole. Why? Because it’s new to everyone, but especially to you. I think a key buttonhole training element should be a practical session on washing your fistula before use.  Before I used the technique, I know I had become a little careless about the BigD pre-wash.  Luckily the nurse training me watched my preparation and for a week or so, would not start until I had washed my fistula to her satisfaction.  I use just a little more antiseptic wash than I need and rub until I have a coating of white suds all over my arm, not just around the fistula.

Check it out.

There have been several other comments that I would like to talk about, and I will do so over the next few weeks.

I should have added a new post last Friday, but alas, at 5am that very morning Julie dragged me (against some pretty wimpy resistance) back to the hospital.

Back to hospital

My last post ended on an optimistic note that all was well.  Unfortunately, that was not the case, and Julie returned me to the Austin Hospital the following Monday with a 38.9°C (102°F) temperature and general miseries and weakness.  After another uncomfortable Groundhog Day night on an Emergency Dept trolley, I ended up staying another week, undergoing a battery of tests, with no positive diagnosis.  However, by Friday I felt better, so they sent me home.

The following Monday diarrhoea arrived.  Most unwelcome.  Each day (against all the evidence), I convinced myself that things were improving and so refused any dramatic action (like going back to the Austin for my third Groundhog Day).

Diarrhoea for BigD patients is a little tricky.  After about the second day, I knew I was losing a fair bit of fluid.  My weight had already dropped a kilo over the previous weeks, so I mentally lowered my base weight and just kept drinking the amount I guessed I lost after each toilet visit.  However, this didn’t work too well and my base weight fell another 2kg (4.4lb).  I not only felt progressively worse, but found it harder to specify how much fluid to take off during each BigD run in our unit’s isolation room.

Finally, at 5am Friday morning, after my 8^th trip to the toilet that night, Julie dragged me back to the Austin.

Unlike previous times, the Emergency Department was pretty quiet, and I was back on a trolley within an hour or so.  Then the usual poking, prodding, measuring and pricking took place.  Unsurprisingly, I had also slipped back into an irregular heartbeat.  The Renal Registrar came by pretty quickly and pronounced me dehydrated.  He ordered 2 litres of intravenous fluid to correct my water and electrolyte imbalance, something drinking water alone cannot do.  He also started me on an antibiotic (Metronidazole — also called Flagyl, which is easy to remember because it’s awfully close to flagellate – or maybe that’s just me).

It was amazing how much better I felt after the fluid replacement.  Within a few hours I felt close to normal.  And to the surprise of the renal docs, my diarrhoea stopped within an hour of taking the first Flagyl.  I don’t think it usually works that quickly – I think I had just plain run out of anything to pass.

I stayed in the hospital for the weekend, and emerged into the light of day yesterday (fittingly, the first of April).  My diarrhoea has not come back and I am slowly returning to my normal healthy self.  Hopefully I will flip into normal heart rhythm during this week.  I will dialyse at my usual unit this afternoon.  The doc releasing me said “We still haven’t found anything.  You seem to have healed yourself.”  Maybe.  But  I know the replacement fluid was a big factor.

As usual, there are several lessons to learn, not the least being that being on dialysis muddies the water, making even the simplest of bugs complex to treat.  How much fluid should be given intravenously without threatening the heart?  How much will be removed during the next BigD session?  Several antibiotics react badly with sick kidneys, limiting what can be used.  Also, dialysis becomes more difficult: a constantly shifting base weight makes it difficult to calculate how much fluid to take off; the same with blood pressure because of the irregular heartbeat,

But the key personal lesson is that if you lose that amount fluid, you become irrational and attempt to soldier on when you should ask for help.  Luckily for me, Julie took over and all now seems to be back on track.  I am even reasonably certain that we will still travel in May!

I know that all of this will be drearily familiar to many members of the BigD club.  As usual, the trip in hospital switches from boring to unpleasant, to satisfying, to tedious and back again, but the outcome is good.

I started to feel quite unwell last Thursday.  My heart had switched back into Atrial Fibrillation and blood tests at BigD showed raised infection markers.  My nephrologist ordered more tests and blood cultures.  Unfortunately the culture showed some kind of Staph, so he told me to go to the Emergency Department at the Austin, my usual kidney hospital, and he would arrange for me to be booked in.  Julie and my daughter Kathy and I presented ourselves at ED.  Alas, no beds, so I sat on an ED trolley for the night.  Not very comfy, but the medical service was very good.

Assuming the worst, they treated it as Golden Staph, a very nasty and hard-to-treat infection, so while I was on the trolley they started me on vancomycin, the most powerful antibiotic available.  I also had my heart and blood pressure monitored all night. The following morning I was due for BigD, so off I went to the hospital’s dialysis unit for a 4-hour run.  I must say I felt much better after dialysis.

Being infectious I was then admitted to the ward, in a single room with a notice to glove-up at the door.

I have said before that being a renal patient is a long-term proposition. I was last in the Austin about two years ago with pneumonia, and I have been going there since my first transplant in 1995 in the 1920s Ward 4, and my last transplant in 2005, in the flash new Ward 7 North.  Each time I meet old friends (renal nurses, dialysis nurses, specialists, PSAs and others), some that go back at least that far.  It’s a little bit like Cheers, Where Everybody Knows Your Name.  Very comforting.

I went onto a regime of daily blood tests and cultures to better identify the infection.  And being a public hospital, my dialysis regime was changed from 3 hours five times per week to 4 hours every second day. Not a major change, but I really noticed the difference.  I had to watch my diet and fluid intake much more closely, and I felt much less well on each second day, just before dialysis.

But the thing I really disliked was daily blood tests.  On dialysis days, all is fine, because they take the blood from my arterial line.  But on non-dialysis days, they take blood from my non-fistula arm.  That arm has been a pin cushion for years, so the veins hide when the blood nurse comes.  The result is usually lots of near misses and arm like a battleground.

After the second day, to great relief all around, they identified the staph as the much less nasty staph epidermidis.  I was switched from vancomyacin to flucloxacillin (Staphylex).  I began to feel better.

However (just like House!) they wanted to identify the cause of the infection, so I had a range of tests: blood cultures to try and regrow the staph (it never did), CT scans (where they found collections of fluid where my transplanted kidneys used to be – they drained fluid from one of the collections (by poking a needle into it) and found no infection), a bone scan using radioactive dye (which showed the bones squished together in my back, but that was not infection, just the result of a motor bike accident 20 years ago).

By the following Thursday I was feeling pretty well, so the antibiotic was doing its job.  Also, my heart switched back to normal rhythm on the Wednesday, and I started on anticoagulant (clexane) injections until the Warfarin gets to the right level.

Basically, I had recovered, but still no cause identified.  Last Friday I had my last hospital-based dialysis and I was discharged for home treatment.  I am taking the antibiotic orally for 2 weeks and as a final check I am due to have an echocardiogram as an outpatient this week.

It’s not only a pain when you are the one on the trolley, but also for your loved ones.  As usual, Julie and my family and friends were there providing both physical and mental support, with that primal “Is this it?” worry sitting heavily on their shoulders (as it has several times before).  It was great to see them.

We BigD club members are not the robust specimens we used to be, we can fall off the perch quite easily.  Luckily with a little help from some smart and dedicated people, and a loving family, we can climb right back on.

There is news on the HDF front.  As I described in my last post, I started HDF instead of plain old bog-standard haemodialysis about two weeks ago.  For a while I felt fine, but after a week or so, I started to feel tired, nauseous and generally unwell, almost like I wasn’t getting enough dialysis.  I even had a sleep in the middle of the day, which I almost never do.  I mentioned this to Chris, my unit manager.  Initially she thought I had caught a bug.  We BigD club members are often on the edge of good health, and it takes very little for us to slip over.

However, the following day she came back and told me that Don, another new-to-HDF patient was also feeling unwell.  He arrived late for dialysis because he was exhausted and had slept in., something he had not done before.  That news was enough for me.  I decided to go back to haemo and to wait and watch.

After some discussion between nephrologists, the problem seems to be our routine.  Don and I have short, frequent dialysis – five times a week, for 3 hours per time.  (Apart from feeling so much healthier with this routine, it is much more work-friendly.  I can spare three hours early in the morning or late in the evening and still put in a full day’s work.  Not so with a five-hour stint.)  As a result, both Don and I are back on haemodialysis and no other short-run patients will go on HDF for the time being.

The difficulty is that compared to haemodialysis, there is not much research available on HDF, especially for short runs.  Currently many doctors believe that long runs allow the body more time to recover from the shock of so much extra fluid.  But no one really knows what’s going on.

I still believe in the long-term benefits of HDF, and I would very much like to receive them.  If there is not enough research, maybe the answer is to become part of a local research program on short run HDF.  If one can be set up, ideally, after my trip to China and the UK in May, I will to go back on to HDF under controlled circumstances and see if we can find an answer.

Warfarin: the thick and the thin of it

I had an interesting experience with Warfarin this week.

Like many members of the BigD club, every now and then I get AF (Atrial Fibrillation) – an irregular heartbeat.  Symptoms are basically what you would expect from a heart that is out of rhythm and is operating inefficiently: weakness and shortness t of breath after a small exertion (like riding an exercise bike for 5 minutes).  You become the guy who gets sand kicked in his face, rather than being the kicker.

Checking for AF is easy: I put one or two fingers on my fistula, and if the thrill (the buzzing beat at the base of the fistula, where the artery is connected to the vein) is all over the place – two quick beats, a slow beat, a quick, a slow, two quicks, and so on – I’m in AF

I went to my cardiologist, who upped my amiodarone (Cordarone).  It took about a week on a higher dose to revert to normal rhythm.  At the same time he started me on Warfarin.  It seems that there is a risk of having stroke when the heart returns to normal rhythm (caused by blood clots resulting from the weak heartbeat being pumped back into the blood stream as the heart gains strength).  Not something I would like to happen.

Warfarin (also known as Coumadin, Jantoven, Marevan, Lawarin, Waran, and Warfant) is an anticoagulant that increases the time it takes for your blood to clot.  Some people think of it as a blood thinner, but it doesn’t affect blood thickness, it just stops clots forming.

There is an ideal concentration level where clots don’t form quickly, but where they will form eventually so that if you cut yourself, you won’t bleed to death.  The measure for Warfarin is called the International Normalised Ratio, or INR.  People not taking it usually have an INR of 1.  The target INR for most people on Warfarin is a range of 2 to 3.  My cardiologist set my range at 2.2 to 2.8.

The INR is usually tested by sending blood to a pathologist initially every few days, and once the level is established tests drop back to monthly or longer.  Many pathologists offer a Warfarin management service, where they measure the INR and send instructions to the patient, changing the dosage to keep the level in the target range.  My pathologists offers an SMS service, where they send instructions to my mobile phone a few hours after the test, and I adjust my dosage accordingly.

However, the best laid plans and all that.  Things were going well, and after three tests I was taking 1mg at night and getting close to my ideal INR.  Then, after the fourth test, my instructions said to take 4mg each night until the next test three nights later.

After the next test one of the pathologists phoned me and told me that my INR was way too high and that he was sending me, by courier, some vitamin K solution that was to be taken immediately.  Vitamin k promotes blood clotting.  I later found that my INR was 8.9, way out on the bleeding to death side of the Warfarin scale.  Luckily I had no falls or cuts.  I already tend to bruise easily, so I noticed no difference.

I stopped all Warfarin for a week and the level slowly returned to normal.

I wrote to the pathologist and asked what happened and what was being done to ensure it didn’t happen again.  They said it was human error.  Someone using the computer numberpad hit 4 instead of 1 and didn’t notice.  Until the next test.  Now, as a failsafe, they are reprogramming their system to query any dosage change greater than one 1mg automatically.

I am writing about this here to let all you Warfarin users know that if it can happen to me it can happen to you, but more importantly, that you can make the same check and not let it happen.