Dialysis Diaries Part 5, Non-revision, Revised by Ron Steinman

Dialysis Diaries, Adjusting: Part Five, Non-revision, Revised by Ron Steinman
I made no changes to this episode of living with dialysis. Obviously, it is not flawless. What really is? It just works well as originally written. It is worth reading again because it is a seminal note early on in my treatment. Do so, if you can. I could have changed a word or two, even a period or comma but that would not have changed its meaning.
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Not all the entries take place when they happened. Filing a diary that is less than spontaneous, yet absolutely true means that some pieces will be out of order, but never out of context. This piece meets those criteria.
When I finished one of my initial sessions on a recent Friday, the nurse working on me quietly warned me about a change coming for my treatment. She said, “Beginning on Monday we will be using larger needles. The bigger the needle, the better the blood will flow. Starting then, your session will be 3 and half hours.” I had been slowly building to that time during my first week on the chair and there it was: my life would never be the same again. She said the bigger needles would easily fit in the AVF placement, the graft and mesh in my left arm. All I could do was nod my head, yes. After all, I do have stage 4 chronic kidney disease and my treatment should be full bore. She walked away slowly, her mission accomplished. I had time, though not much, to ponder my new situation.
Having the disease and learning to cope with it is suddenly taking up all my time. I think of nothing else. Months earlier I did not want to face reality, which is why I waited so long to fully approach the disease. As dialysis was becoming a certainty in my life, I had to make psychological adjustments to my new world. But now after only a week, bigger needles? Mme. Lafarge, her knitting needles clicking away popped into my mind when I thought of impending giant pieces of steel entering my arm. Thankfully that was only an image. But I faced a new reality. I would soon learn the truth.
As a medical tool, dialysis is a relatively new phenomenon. Invented as an artificial kidney in 1943 by a Dutch doctor, William Koff, the machine since then has undergone many changes, all to make it as easy as possible to access the blood in the body so the machine can do its work. Two tubes, one in the vein, the other in an artery, make for a delivery and transfer system over a specified time for the patient, usually as much as three hours and a half hours a session. This alone is complicated enough, but having the basic machine and the fundamental idea allowed, over the years, for scientists to solve the many problems that now go into helping patients, especially those who experience acute renal failure and to keep alive active patients who have end stage renal disease, the perfect description of my current plight.
At first, I did not think that the coming Monday would be different. A bit rocky on Friday– I felt weak and fuzzy — after completing a three-hour session using the smaller needles, I gave no thought to the next time in my assigned chair. However, I had something new to look forward to: a longer session, yes, bigger needles and potentially more physical rockiness at the end of my day. I decided I would tackle those possible consequences later. A weekend free of a treatment loomed. I needed the time to collect myself.
After being in the care of nephrologists for almost 15 years, I knew there was no cure for chronic kidney disease. Importantly, there are no drugs to cure the illness. I can only believe that discovering a cure is as difficult for science to solve as it is to those who have it to realize the disease exists. There are things doctors do to help, but they afford little relief. Keep the blood pressure under control is one. Do it with a variety of meds. I could not help noticing that recently my legs had been cramping more frequently in my sleep, a sure sign of impending problems. Filling the patient with more than ample sodium bicarbonate — the results of which are not always kind to the patient in other ways — does little to slow down the progress of what toward the final stage of the disease is, akin to a runaway steam engine. Eat heaps of protein is another but that is not very effective for reasons too complicated to go into here.
Once the disease’s inevitable and final break out, there are only two solutions: one is a transplant, either live or from a cadaver, both rare and difficult; the other is dialysis, my current situation just started for which I am thankful.
Before dialysis, my blood revealed numbers that were increasingly bad. My nephrologist inferred that dialysis would save my life. She did not demand, nor could she demand I start treatment. All she could do was to lead me to where that decision was mine to make. It would be up to me. I had a dilemma. Who do I believe? Why should I believe anyone but myself and how I felt? Yet I did not trust myself to make the right decision. At first I refused to accept that my body was changing fast and that kidney failure was taking over. My rate of flow, a major marker, was at a dangerously low level. With all the symptoms unfolding rapidly for whatever reason — probably time, age, my body’s inability to cope — I decided getting ready for dialysis was better than being caught with nowhere to go but the possibility of a disaster. Within a week I was on the operating table for what the doctors called a “procedure” to get me ready for dialysis. For me it was an operation. After all, they anesthetized me and cut into me — an operation however one describes it.
And it was not easy. The surgeon found that a typical fistula would not work because my veins were too small. So, instead he created a graft with a mesh, not a usual setup that would allow needles the access they needed to make dialysis work. It has been a difficult path I explained in Diaries Part 4.
Despite the success of the operation, a new complication arose that may have been more confluence than purely medical. Edema struck and I ballooned in weight to almost 200 pounds, more than 20 pounds over my normal weight. After many weeks of suffering and physical and mental stress, my kidneys road to failure was the only reason for the problem I had to reduce the edema and get back to normal. I would do that with medication and dialysis, where I now am.
I do not want to give the wrong impression that dialysis is easy. It is not. Needles in my arm hurt despite that I rub in a combination of Lidocaine and Prilocaine cream each day to dull the pain of being stuck in two places on my arm three times a week. What follows for three and a half hours is generally painless, but it is invasive, and an invasion as carefully planned by doctors and nurses instead of generals, as is any military campaign.
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After reading this episode, take a minute and go to my author’s page on Amazon and, if in the right mood, pickup a book or two for future reading, especially about Vietnam, a subject we should never ignore. Thank you.