I tend to think,the less said about me the better. What actually would you wish to know?
In response to Judith’s request – take a deep breath – here is my self portrait, mug shot:
(As you might imagine there were inevitably less flattering photos. Then the deceptive bent of vanity kicked in – as it does – so I selected what I thought was the best. The apparent disconnected stare is due to the fact that I am looking at the camera screen in the mirror before saying “six”, as conformity to cultural norms demand. I hope that Judith is now satisfied.)
Before the format provided by blogging existed, I seem to have been interested in these subjects for much of my life. I do not have any expertise as such, but less us not let stop forming opinions and making judgments, and then reflecting on them. I do have unemployed qualifications in cartography (through Tech), marketing and human resource management.
I don’t have work and I am not dependent on social welfare. I spend most of my time, when not sleeping, on the internet, taking our dogs, Sasha and Dexter out, and drinking cups of tea.
Sometime soon, I wrote, I will have to go and see my renal specialist. That day has come and gone. He is not pleased with me for my failure of compliance. In addition, he has sent me off to my hematologist. He pointed out, among other things, that a high potassium level increases the possibility of a heart attack. But he does not realize, and I did not tell him, I am trying to avoid seeing doctors to save money (It seems to me here, the less the latitude for error, the greater the likelihood of critical mistakes, independent of budgeting or other money management skill). As I mentioned, my instrument for measuring blood pressure is not 100% accurate, but that is not a reason not to take measurements. And I am on a high protein, low potassium diet, which is slightly different because I am a vegan.
The medical picture is not complete, as I am reminded by just visiting my hematologist who called my a “mystery man”. It looks like I am going to have to endure another bone marrow autopsy. Then I have a congenital heart condition related to the valves which means I have to go and see a cardiologist every two or three years. I make the point to report on my experience in relation to these matters in the hope it may be helpful to others.
Oh, there are various things around the house I am supposed to be keeping up with, but there, as with our former government, work flexibility is my keynote. Life balance, might be apposite, my sense is, as least for some of us, as time expands, the amount of work achieved decreases.
I have some thoughts about blogging, which I am workshopping as I go that in emulation of the good and the great I describe as metablogging:
The duckpond aspires to be a quiet place for reflection, however imperfect and however interrupted by quacking duckspeak, and so would normally (it is be hoped) disdain conspiracy theories, except in so far as they have be a rudimentary framework for thinking. The duckpond is but a small voice in the orchestration of the flow of a larger discourse, aiming to foment a deeper, truer narrative that resolves contradictions as it reviews evidence, and as it respects and anticipates difference, to create productive and positive decisions and outcomes. As in science, any number of hypotheses might be suggested, but independent of their utility, they must be first discovered. For that purpose liberality of expression is not just useful but essential.
It occurs to me that some values might be identified that are important and that should be lived by. I thinking now that these values include seeking knowledge, creativity and intelligence. I cannot help the impression at the weather news, most recently the opening of the North West Passage, that we are in disparate need of enlightened and determined global political leadership. Each of our responsibilities extends only to what small influence we can be within our political systems.
The future will happen, and I undoubtedly will be surprised by it. I will probably be just pleased to be alive.
When I wrote that sentence, I had not anticipated that I would be diagnosed with a perforated appendix, nor how long and involved the recovery – allowing for the imperfections of analogies it is nevertheless a reminder that when natural systems get out of whack, it can take time to right themselves, bearing in mind the climate system, fundamental to continued human existence, is a system like no other on a lesser scale. They said at the hospital that I would feel like a new man – and I do. So I am very fortunate.
Of course, we are guaranteed to feel a surge of optimism, immediately being challenged with mortality, and then later to fall back into routine existence. My sense is that when Epicurus proposed hedonism he had by then put some years of the clock. Much like Dylan Thomas we were all “green and golden” but paradoxically the quality of life lived in the moment may improve even as possibility and capacity diminish.
I went to see my renal specialist on Friday, the horse’s birthday. He was glum. I find that response disconcerting. I will try to keep to the medication. The contrary effect is that it raises blood potassium, which is not a good thing, but the alternative is to have steroids without a guarantee of effectiveness. Actually, I felt quite cheerful as it is possible to be when obvious to the data.
Update: 25 November 2008
Who am I? What am I? I never know how to answer those questions. I now have another question: What is a good life? I pose it because I suggest that the parts of the answer are easier to formulate.
If you are still reading here, your curiosity is to be commended or something, so I will tell you about a medical problem I am experiencing. The kidney problem leads on to a set of difficulties. I have been experiencing cramps for some time, and I have been telling my various doctors about them, but they do not seem to take what they have observed and I am telling them seriously. This morning and this afternoon they have become very severe. When I got out of bed this morning I found myself lying on the floor in pain with cramping in my thigh and calf muscles. After seeing a local GP today the same thing occurred after I had a nap. I now worry about lying down to sleep. I need to speak to my specialist tomorrow so I will emphasize that these cramps are both painful and disabling. The doctor I saw today did not want to recommend anything because of possible complications with my existing medications. It seems to me there is a prioritizing that needs to be done here.
In the spirit of being the person responsible for my health, and using the internet to get some information, I have decided to analyze and work our my own condition. So I conclude that cramping is evidence of dehydration and lack of nutrition, for example the supply of electrolytes. It is contrary, because I am also bloated as a result of the kidney condition, and I have to maintain the prescibed medication.
UPDATE: 2 July 2011
I received a phone call which turned out to be from one of the specialists at the hospital. My renal specialist was away at a conference. He advised me that my neutraphil count, based on my most recent blood test, was 0.05. The normal range is somewhere around 2.00. He advised me to stop taking cyclophosphamide tablets. My dose was 150mg per day. My understanding that with such a low white blood count a person is more susceptible to infection and illness. I have now gone to see my GP and he has given a prescription for another blood test.
My point is twofold. These effects are subtle. They are not obvious to other people, although perhaps I might have a vague sense that something is not quite right. Secondly and self evidently access to expert medical advice is very important. The follow-up blood test on Monday assume some importance.
UPDATE 2 MARCH 2012
The medicine is I think worst than the malady. Cyclophosphamide is the principle medicine I have been prescribed. It suppresses the kidney symptoms, as to whether it is addressing the underlying kidney condition is another story. As you can imagine, my testing results were not quite as benign as I was inclined to think.
Here is a description of the drug:
Cyclophosphamide is one of the old warhorses of chemotherapy. Administered intravenously or orally in tablet form, the drug has been around since the end of the 1950s and has found its way into treatment for a host of cancers, in both FDA-approved and off-label indications.
Because cyclophosphamide has been around for so long, more is known about it—in terms of safety and efficacy—than is known about most anti-cancer drugs. The drug is considered carcinogenic and is frequently implicated in secondary cancers.
This makes sense of the recommendation to see my hemotologist, who I have to see again in twelve months. The “light cells counts” seem to be remain constant.
Otherwise, nothing much changes, although as it happens Sasha, who is sadly missed, died of cancer. So now Dexter and Hannah feature in the weekly Friday Night Dog Blogs.
UPDATE: 21 March 2012
I saw my renal specialist today. He was very pleased with the progress made. I had not idea of how bad things were, because I did not understand the significance of the data. He observed that I had made significant improvement in terms of protein loss, from nine to my present half a gram (could that be the correct measurement?). I doubt if too many people will see this, this is evidence to a person’s health with this disease can be improved with the right medication regime and advice. And now my blood pressure seems ridiculously low compared to what it was, something like 106/65, which the nurses said was a good reading for a kidney patient.
The question immediately arose in my mind, whether my life was worth saving.
UPDATE: 06 March 2013
I went to see my renal specialist again today, and will see him once more in three months. The take away is that the underlying condition remains, although many of the symptoms are not as evident. The principal indicator is the level of protein leakage. I didn’t directly tell him that I had been skipping the medication, but obviously I have to be careful.
Mohandas Gandhi is a more significant historical figure than his contemporary political opponents were prepared to credit. “Ahimsa” (apparently linguistically akin to “asymmetrical” and similar constructions, with the meaning of not violent) and the Gandhian notions such as “trusteeship” are different ways of looking at people and their possibilities. If you are interested checkout the Metta Center reference on the blogroll.
UPDATE: 14 March 2013
I went to see my hematologist (blood doctor), and after waiting for an hour go into see and had a chat. Apparently I have been seeing him since 2005. I should take notes, but feel, for some reason,that would be rude. The result is I can barely remember afterwards what was said. He said my low level of red blood cells (anemia) had been revised. Did I mention, I had my spleen removed because it was enlarged. He told me that I feel in the category of POEMS. There is a ratio between light cells and heavy cells in the blood and that has fallen in my case from 18:1 to 7:1. This ratio is indicative of a predisposition to lymphoma.
UPDATE: December 2013
I told my specialist that I had stopped taking the medications. I did not say this was really over a period of six months. He said that the condition can reassert itself, which I think it may have been doing. My blood pressure seemed OK at 120/80. He said to me I was lucky that there was a treatment that worked. Otherwise the option is dialysis. He also said an abrupt change was not the best way. I cannot believe when I look now at the photos from 2006 of my swollen legs affected by edema. So now I am back on the medication, hoping that the condition will hold out and improve.
- The Kidneys! (lass.org.uk)
- Stage 5 Renal Failure Miracle! (jenniferaccomando.com)
- About Muscle Cramps (echiropractor.wordpress.com)
- Things You Should Know About A Kidney Specialist Beverly Hills (bestdailyentries.blogspot.com)
- What are the Symptoms of ESRD (kidneyfight.wordpress.com)