Guest Post: To Be or not To Be: The Dialysis Decision

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 blueprint 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.

3 thoughts on “Guest Post: To Be or not To Be: The Dialysis Decision

  1. Like you, Mr. Longstaff, I have lived a full and delightful life. I have five children and 8 grandchildren, and I then I went on dialysis. I thought since I have lived the life I wanted, it is time to go. But beyond the darkness facing me as a dialysis patient, I have come to realize a wealth of reasons to live on. For one thing, the staff at the dialysis clinic are doing their utmost best to make the dialysis treatment such a pleasant(?) one. Every time I joke about dying, each and everyone of them would comment, “Not on my watch!” . Then there is my family who are all begging me to extend my life to give them a chance to repay what I have done to them, and each and everyone of them offering their kidneys. I could not take them up on their offers because I am 73 years old and they are in the prime of their lives. My thought is that they need their kidneys more than I do. So, I am on dialysis now. There are good and bad days, and to even out my rather odd existence, I forget the bad days and think only of the good ones by doing volunteer work wherever I can. Its a busy life all over again, and thanks to dialysis, I can continue on living for as long as God want me to.

    Lynn M. Vejhurai

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  2. A very timely post! I had the same questions on the first anniversary of going on dialysis last month. The novelty had completely worn off; I was discouraged by the condition of many of the longer term patients in my unit; and I felt deprived of the enjoyment I used to get from travel, long sailing cruises and employment as a consultant travelling across western Canada.

    Then, like Robert Longstaff, I realized there were people other than myself who would be negatively impacted if I decided ‘to pull the pin’ and give up. Instead, I decided to consider those thrice weekly four-hour sessions as a job — an obligation to my family and myself. And like the job dialysis has forced me to give up, it has its good and bad days but the former far outnumber the latter.

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  3. Pingback: Dialysis needling: if at first… | Big D and Me

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