My Malfunctioning Body Machine

For the curious, let me just explain my present condition and we’ll move on from there.

I suffer from what is called (rather hopelessly) End Stage Renal Disease (ESRD) or “Stage 5” kidney failure. My kidneys are functioning at about 15% capacity. I am not yet on any dialysis programme and the surgeries and treatments I’ve undergone lately are designed to try to preserve kidney function (perhaps even improve kidney function) in order to keep me off dialysis, inclusive of the renal diet I’m forced to suffer. I spend almost all my time trying to find something edible, but the renal “cookbook” that I’m trying to build up is still disappointingly thin. The food I’m restricted to typically has no schmecks appeal.

The symptoms of kidney failure (unknown to me at the time) began to appear just before Christmas, around the 17th of December. I developed shingles (which, precious, is not very pleasant at all). Then came restless leg syndrome (RLS) and intense itchiness of the entire skin. Next, came the edema (fluid retention) and I began gaining almost a pound of water a day, followed by severe shortness of breath along with random nerve and muscle spasms. It was pretty weird. One consequence followed logically from the other, nonetheless.

So, on 11. February, realising I was at death’s door, I went to the doctor’s. It took him only a few minutes to order me into an ambulance and off to the hospital in the big city. I was basically “disappeared” — snatched off the street. I had to spend the next few days informing people of my whereabouts.

In hospital, you put your modesty and dignity on the shelf. So, the first thing they did in emergency was strip me down and stick a catheter in my bladder to begin draining off the retained fluid. I’ve had more pleasant experiences. For the next 12 days, I was poked, prodded, tested, cut open, sealed up, cut open again, sealed up again. I was attended by five doctors, in all. I’ve had a couple of additional surgeries since, too. A friend had brought me a laptop during my first stay, and I spent much of my time musing on the contradictions of the medical system, the body as machine, the experience of the hospital and so began communicating my impressions of all this to an email distribution list of friends and relatives. I never really thought about posting any of this to The Chrysalis. Perhaps I should have, but blogging was probably the furthest thing from my mind then, as you can well understand I think.

There is still no definitive diagnosis of the reasons for the kidney failure except that, for some reason, the tubes in my body connecting the kidney to the bladder are twisted or “cork-screwed”, as the urologist put it. I’m fortunate in having one of the top 10 urologists in Canada (and a couple of nephrologists also). He told me that in his career, he’s never seen anything like that. The cause is unknown, unless it is congenital. A couple of attempts he’s made to rectify them were not successful. So, I’ve put my foot down now — no more surgeries; no more lengthy hospital stays.

I was discharged from the General Hospital on 25. Feb after a 12 day “internment”. That’s the best word for it, I think. The one joy of my time there was the occasional stroll down to the cafeteria, trailing my bloody nephrostomy bags through the halls, to get a coffee and a doughnut from the cafeteria. Coffee and doughnuts were permissible (and in fact, encouraged). Just to stroll, to walk — that was real bliss for me.

I went into the hospital at an extreme 200 lbs (normal weight is around 165-170). I left hospital at 142 lbs. I also left hospital with two hydrants (taps or valves) inserted into my back and new “channels” dug into my bladder. For some time, this “bag system” (nephrostomy system) is how I drained off retained fluids. As of last week, though, the urologist turned off the taps and gave me the order — go forth and pee! He also gave me instructions of what to do (reassemble my nephrostomy system) should things go wrong and pressure rebuild in the kidney area.

Well, it was touch and go for hours. Then, finally, “Hallelujah!”. A normal piss (albeit a bloody one). And things have been chugging along ever since. Whether or not this will result in improved kidney function will be determined after my next visits to the urologist and the nephrologist, who will analyse blood and urine and determine from the numbers if I’m still at death’s door or not.

Miles to go and appointments to keep — doctors, hospitals, bloodwork, tests, injections. That’s pretty much the routine, lately, along with studying recipes and foods and trying to find something to eat that is edible besides apple fritters, lemons, small bagels with cream cheese or ginger ale and jelly candies.

As a kidney patient, I have to avoid what I call my “three devils” — sodium, potassium, and phosphorus. This is nearly impossible, since almost all foods contain some measure of all three. So, I juggle. These are now poisons for me. Since the kidneys can no longer filter these things out, they accumulate in the blood and become poisonous. It’s a condition called “uremia”, and along with uremia, “acidemia” or “acidosis”. My blood is highly acidic. In addition, the kidneys can no longer effectively produce red blood cells, so I’m also “anemic” and my immune system is compromised.

This is the danger. It’s not so much the kidney failure that is the critical issue, but the consequences of it. That’s what one of my doctors repeated: “Consequences! Consequences! Consequences!” Consequences like cancer, heart failure, bone and tissue wastage, etc. There’s a very long list of potentially fatal but logical “consequences”.

To manage the consequences, I’m required to take about 22 pills a day. Some of these pills I take are also to manage the “consequences” of taking the other pills — the “side-effects”. But, generally, the pill regime works fairly well in controlling the symptoms of Stage 5 kidney failure. I do not have the symptoms any longer, and I feel quite well overall. All vital signs are normal; even better than normal. It sometimes seemingly baffles the nephrologists.

When I went into hospital in the city in February, it was another story. I had an image in my mind of a flickering candle, about to be snuffed out by a draft of wind. It was pretty weak. Over time, though, the image of the flame in my mind grew stronger and steadier, so I knew before the doctors did from their tests and measurements that I was stabilising.

Nonetheless, however well I actually feel now, I know that eventually my malfunctioning kidneys will, in one way or another, do me in. With that sense also comes a high degree of pleasure in the “here and now” — of just being. Walking, the touch and texture of things, the light and colours, plants and animals… all seem quite marvelous, even miraculous and magical.

When I discard and abort this malfunctioning body machine, it is these things that will be “gone”, not me.

 

Advertisements

29 responses to “My Malfunctioning Body Machine”

  1. misterdirk says :

    Oh dear, that sounds harrowing. I had a “medical excursion” myself over the past 18 months which, like yours, heightened my sense of appreciation and perception of the subtle textures and nuances of the here and now. My diagnosis is “incurable” but the actuality of it is that I might very well live many more years in apparent health. So as time passes, that delicate appreciation the miracle of being has sort of receded, despite any of my intentions and efforts, and the old “normal” has resumed. There are moments of wonder, though, as when I was out surfing yesterday, when the whole sensorium tingles and I can say to myself, “You don’t get this for granted!”

    I hope your body finds its ability to heal, and that your sense of a living future increases.

  2. Scott Preston says :

    Thanks for the well-wishes misterdirk.

  3. srosesmith says :

    Dear Scott : Your extraordinary spirit keeps on shining! So wondrous, that you’ve survived and have revived so well, and this, so beautifully expressed, I too experienced (esophageal cancer 1992): “With that sense also comes a high degree of pleasure in the “here and now” — of just being. Walking, the touch and texture of things, the light and colours, plants and animals… all seem quite marvelous, even miraculous and magical.
    When I discard and abort this malfunctioning body machine, it is these things that will be ‘gone’, not me.”

    • Scott Preston says :

      Thanks Sharon. I hear that turmeric is an effective weapon against esophageal cancer cells. Supposedly, it kills them on contact. It;s the curcumin, apparently, in the turmeric. It’s an important herb (practically considered a panacea) in Ayurvedic Medicine. Unfortunately, I don’t think it does anything for crooked kidneys, and is pretty high in potassium itself.

      Well… certainly glad you outlived it.

      “As a survivor, man smiles when realizing how narrowly he has escaped. This smile, unknown to the dogmatic idealist or the scientific materialist, twists the face because a human being has survived danger and therefore knows what matters.” — Rosenstock-Huessy, “Farewell to Descartes”

      And, of course (and especially moreso) woman too. Any woman who has ever given birth probably has more sense than a man.

  4. Jan Goorissen says :

    Dear Scott,
    Thank for the courage and responsability to share your experiences and reactions concerning your bodily manifestation of your Scottyness. Since I am no doctor I can only comment on your apparent giftedness. I am truly grateful for your wonderful wanderings in awareness-land. You have obviously digested a lot of literature and have been pondering intense over the questions underlying our reality. I would consider it as a great personal loss if your Scottyness would stop writing. It is, however, all YOUR experience and there must be something in it for you. If your kidneys can’t purge it out of your stream of consciousness, perhaps your greater Scott can, and help you unscrew the thicket of your pipes. Good luck! Jan

    • Scott Preston says :

      His Scottyness thanks you very much for your well-wishes, Jan.

      Presently, if it weren’t for these implants in my back, I wouldn’t even know I had kidney disease. I feel pretty well overall. Of course, if there’s any improvement in kidney function, these implants will eventually be removed, too.

      • Jan Goorissen says :

        I wonder Scott, (let’s leave out the majestic -ness): the integral perspective felt as a higher dimension that would give access to the physical body in ways the logical mind cannot comprehend. Inside and outside would be meaningelss as a word-pair for there is only presence. Your mind cannot THINK this access to heal yourself, but your integral being can (because it may include wholes of time, place, presence and consciousness that bear riches far beyond our capacities and our ability to envision. I sense there is only trust that can help us to enlarge ourselves into that dimensie. So trust I hope you will gain, enough to counsciously house all 4 levels into this great and promising realm. Then you will be His Scottyness.

        • Scott Preston says :

          I’ll do my best, Jan.

          By the way… there’s been quite a spike in visitors and subscribers to the blog from the Netherlands lately, and not all of it is due to the re-posting of my essay “My Beef With Ken Wilber” on Netherlands-based Integralworld.net. Did you have something to do with it? 🙂

  5. LittleBigMan says :

    “I do not have the symptoms any longer, and I feel quite well overall. All vital signs are normal; even better than normal. It sometimes seemingly baffles the nephrologists.”

    How you feel is really the most important thing. Also, your normal weight range of 165 – 170 lb is a quite healthy range and will no doubt help your recovery.

    “Nonetheless, however well I actually feel now, I know that eventually my malfunctioning kidneys will, in one way or another, do me in.”

    A colleague of mine who retired about 1.5 years ago once told me that he had a close friend who once checked into a hospital for having some issues. After running some tests, the doctors concluded that his friend had pancreatic cancer and as a first measure of saving his life decided to do a surgery.

    After doctors open up this guy’s body, they see the cancer has spread so much that no surgery can ameliorate the situation. So they stitch him back up again without cutting anything out and tell him that he has about 6 months to live.

    He lives another 34 years after that and well into his 90s before passing away! For some unexplained reason that no doctor could explain, the most dangerous cancer simply goes away by itself. My colleague who was telling me the story also told me that his friend had been in good cheers even after the doctors had told him he had the disease.

    These things that appear out of nowhere and bring us down for a while have their own mind. Please be patient with it and, as you are already doing, keep careful watch of what you eat until you find a perfect combination of foods that you like the taste of which, at the same time, allow you to maintain a balance in your bloodstream.

    I really think it is terrific that coffee and fritters, and bagels and cream cheese are on the menu of things you can eat. Those are very tasty choices and a favorite with all kids 🙂

    If you read the label on the ingredients of fritters, that might give you some additional ideas about what else might be a good choice for you.

    For example, I have no doubt that fritters have eggs in them. So, you might want to check with your doctor to see if “egg whites,” which are purely protein and none of the cholesterol, may be a healthy daily diet for you, as well.

    The other thing is that if sugar isn’t bad for you, that means the healthier alternatives like “Honey” and “Dates” may not be bad for you either. So, you might want to ask your doctor about these choices.

    You have already mentioned that fresh vegetables are off the menu. But fruits and vegetables are alkaline and are necessary if you want to keep the acidity of your blood in check.

    So, that brings up the question if it would be alright for you to consume steamed vegetables. If your doctor okays steamed vegetables for you, that would be very good news because you can then begin consuming black beans, garbanzo beans, lentils, peas, cabbage, onions, and whatever vegetable you like after steaming it.

    Also, I have a container of organic rolled oats on my fridge. On the label, there’s nothing about potassium, nothing about phosphorus, and the sodium content is listed as 0% (i.e. 2mg). So, organic rolled oats might be another thing to ask your doctor about.

    Also, if most fresh fruits are off the menu, how about dried fruits……

    Organic Raisins:
    I have a bag of “Organic Thompson Seedless Raisins” that I purchase regularly from Trader Joe’s. I use the raisins to mix in with my steamed rice. Raisins alone are the worst thing for teeth, but when mixed in and cooked with rice they lose their stickiness and are not damaging to teeth anymore. The label on the bag says that the raisins contain 10mg sodium, 310mg (9%) potassium, and it doesn’t say anything about phosphorus.

    Organic Dried Pineapple Rings (unsulfured and unsweetened):
    I buy these from a local SafeWay grocery store. Trader Joe’s has the non-organic version that I don’t buy. I have these as a wonderful snack. They are as tasty as any pastry out there without any artificial sweeteners in them. The label on the bag says that the dried pineapple rings contain 0% sodium, and it does not say anything about potassium or phosphorus. So, I don’t believe they contain any, but I cannot be sure.

    Organic Dried Turkish Apricots:
    I buy these from Trader Joe’s. I have 4 of these with every meal and they help greatly with digesting food. The label on the bag says that the dried apricots contain 0% sodium, 450mg potassium (13%), and there’s nothing about phosphorous on the label.

    Organic Dried Black Mission Figs:
    I have these as a snack, often with some green tea. I buy these from Whole Foods. The label on the container says that the dried figs contain 5mg sodium (i.e. 0%), and there is no mention of either potassium or phosphorus.

    Every health scare is simply an invitation to gain knowledge on health matters. That’s all.

    You’ll be surprised as to how the passage of time and a bit of patience will help you bounce back.

    • Scott Preston says :

      Coffee is actually pretty high in potassium per cup. It would probably be best if I switched to instant or Green Tea, but I would miss coffee. A cup is always by my side when I’m writing.

      Most of the other things you mention I either have to avoid or consume in very, very small quantities (raisins, dried apricots). They are very concentrated sources of potassium and phosphorus when dried. Dried berries, on the other hand, are pretty good.

      I am tipping my diet more towards the alkaline foods gradually. I even have my own invented concoction of fresh berry sauce (homegrown berries) to enhance that effect. Almost all berries are very important in a kidney diet. This is the dilemma. Most alkaline producing foods are also verboten to kidney-patients because of their high content of potassium (K) or phos (P).

      Low-protein diet is also part of the regime. I have to be careful with things like fish and fowl and avoid red meat. Given that, renal diets tend to be very “egg-heavy” — even ridiculously so. Another dilemma. Shrimps are actually fine, and my former spouse actually supplied me with a huge bag of large Bahamian shrimp. Very generous of her, as they’re not cheap. But I must also carefully measure out portions.

      In fact, I weigh, measure and record everything (and I mean EVERYTHING) including whatever spices I use in cooking. Sometimes these are surprising very high in some of my “three devils” as they also are quite concentrated.

      Besides egg. white rice, pasta, wheatlets (cream of wheat), bread (in moderation and only certain types) are staples of the kidney diet. So, I can do things like egg salad, chicken salad, or shrimp pasta. I’m also experimenting with making my own low-sodium flatbreads like roti. I also have to be careful with the “bagels” because they aren’t all equal in the “three devils” content. Some are over the top in sodium.

      Yes, I’ve become an obsessive label reader, so much so that my eyesight is becoming strained trying to make out ingredients and posted nutritional data on the goods. I spend hours in the grocers, and sometimes have to go to three or four grocers in the city before I find what I need. Most don’t post K or P content on their labels, so sometimes I have to contact the processor directly to request these numbers.

      I’m not to impressed by the renal diet plans I’ve been provided with or found on the internet. I’ll build my own. It’s an adventure, to be sure, and a challenge. But eventually I think I’ll put together a pretty good meal plan more suitable for my specific condition.

      That, or starve.

      • LittleBigMan says :

        “Besides egg. white rice, pasta, wheatlets (cream of wheat), bread (in moderation and only certain types) are staples of the kidney diet. So, I can do things like egg salad, chicken salad, or shrimp pasta.”

        Excellent! I don’t know about cream of wheat, but everything else there everyone loves, anyway.

        “Yes, I’ve become an obsessive label reader, so much so that my eyesight is becoming strained trying to make out ingredients and posted nutritional data on the goods. I spend hours in the grocers, and sometimes have to go to three or four grocers in the city before I find what I need.”

        Believe me, here in California, most people do all of those things. So, you’ve become a Californian overnight 🙂

        “I’m not to impressed by the renal diet plans I’ve been provided with or found on the internet. I’ll build my own. It’s an adventure, to be sure, and a challenge. But eventually I think I’ll put together a pretty good meal plan more suitable for my specific condition.”

        Excellent! It seems to me that going with not just any renal diet, but one that specifically suits your situation is the way to go. I’m very optimistic that you’ll bring things under control.

        • Scott Preston says :

          Excellent! I don’t know about cream of wheat, but everything else there everyone loves, anyway.

          Yes, but with salt. Try these things without salt and you might conclude differently.

          Now, cream of wheat (which has excellent numbers) I’ve learned to love because I found a Latin American recipe for it called “Harina del Negrito”. It’s pretty tasty, and has become a staple of my diet. You can form the leftovers into a paddy (about 100 g) in a round container and refry it later like a hamburger paddy or pancake, and it also is very tasty with some applesauce (which is good for me) or a bit of sour cream and berry sauce or syrup.

          • LittleBigMan says :

            Yeah! It’s great to hear that you can keep applesauce on the menu. If I did another surgery on my gums, I wouldn’t mind at all to go on a diet rich in applesauce again. It’s terrific food. The sour cream and berry sauce or syrup sound yummy, too.

            I love paddies. That Latin American recipe sure sounds tasty.

            I know what you mean about that darn salt. It really adds taste to foodstuff, and I myself have to watch out because I am crazy madly in love with “oven fries” or “potato wedges.”

            There’s a frozen bag of them in my freezer right now. But the thing is that oven fries have a high salt content which isn’t good for anyone, and I easily gobble a full bag in one setting which has 5 servings in it (each serving has 10% salt). So, I have to exercise great “will power” to stay away from consuming these little devils multiple times every day 🙂

  6. abdulmonem says :

    I admire the smiling spirit in the face of the tragic and join the others in wishing well, surrender to the alive consciousness and not to the mechanical body is the cure, after all we will all discard this mechanical tool. Mechanical diagnosis is not dependable. I am glad ,despite everything, you are feeling well.

  7. Scott Preston says :

    Come to think of it, when you have kidney disease, the chief challenge is navigating all the dilemmas that follow from that. I’m exploring and becoming very familiar with the nature of dilemma. And that could very well prove to be the very “meaning” of this event in my life — learning about dilemmas and how to navigate through them and beyond them, like Odysseus in his passage between Scylla and Charybdis.

    So, it is a great opportunity, in that regard — to come to understand the meaning of dilemma.

  8. Risto says :

    Well-wishes also from Finland!

  9. LittleBigMan says :

    I’ll have to give the recipe for “Harina del Negrito” a try. Thank you for the link to the recipe.

    However, since you mentioned cinnamon, I have to tell you about a personal theory that I have developed about this herb.

    One of my aunts was known as an avid cinnamon black tea drinker. In fact, she wouldn’t drink the tea in any other way.

    Today, among the 7 aunts I have on both sides of the family, she is the only one with major internal problems, especially of the intestines. If I remember correctly from what my mother told me, the doctors had told her that the walls of her intestines have thinned and that was a reason for the blood that was coming out of her. She is still alive, but she has major internal bleeding problems and I’m not sure how she is coping.

    One of the committees I serve on in my organization is an administrative committee that decides what health insurance plans and providers the organization should contract with from year-to-year. Because of my work on this committee, I come across confidential information (the amounts and types of health claims filed) about the people in my organization. So, I knew of a colleague whom despite her healthy appearance was filing large claims with insurance providers. As time passed, one time when I was chatting with her about food, she mentioned using cinnamon in her food regularly.

    Additionally, years ago, before I knew about the problems my aunt or my colleague were having, a couple of times when I drank cinnamon tea, I developed a sharp stomach ache. I remember the episodes because I never get stomach ache when I drink any kind of tea, so I concluded that it must be the cinnamon in the tea that gave me those stomach aches and stopped drinking the tea.

    So, I began connecting the dots and it is now my theory that cinnamon, despite its heavenly taste and smell, should not be consumed so much for it may cause internal problems or bleeding for reasons that are not yet clear to me.

    So, please be cautious about consuming cinnamon in your food.

  10. Steve Lavendusky says :

    Check out the videos and web-site of Arthur Haines. He is the man I turn too for health advice. Facebook “The Delta Institute of Natural History”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: