6/25/09 After a down time w/o any new posts, this one will try to bring you up to date from late May, when I got out of Edward for the fifth and last ? time, up until today.
Walking When I first got home/home, I was in pretty good walking shape. I had gone through about 1 1/2 hours/day of physical therapy (pt). This involved strenuous hopping — at the home, Marianjoy — on one foot for maybe 200 ft/day. So I felt strong. Example — it is now easy for me to stand up out of the car.
I had also done a lot of arm- and leg - exercises, all isometric. Leg exercises were done on a large bench raised off the floor about 2 ft. It was easy to roll over and otherwise move my 222 lbs around. I tried leg exercises at home/home, on the floor. But, it is too hard to get down, roll over and then get back up again — I am 69 and usually feel it! I walk almost everywhere with the walker (from good ole mom). Exception is in the house; when I have less than 30 ft. to go and furniture and walls to hang onto. Daily, I walk over 1200 ft on the driveway. Mike worries about that because there are bumps, twigs and pine cones in the driveway. I do OK, picking the walker up whenever it tries to tip over. So, fairly much walking.
Dialysis/Fistula I have made it about five years with creatinine going up only from 2.9 (1.0 - 1.5 is normal) through 4.5, where it is now. (6.0 or 7.0 = time for dialysis or a replacement kidney.) I dread dialysis. It requires the surgical building of a fistula — a small, skillful joining of a small vein and artery in the wrist. The fistula gives the dialysis personnel a convenient, large-enough spot to insert the two needles — one for taking blood out of the body into the dialysis machine and the second to return it to the body, cleaned of “poisons”. And then, apparently, I will get dialysis every other day for from 3-6 hours at a time. Otherwise, they have to stick the needles under the skin just inside the shoulder.
I am pretty well keeping the creatinine — the percent of poisons in the blood that healthy kidneys flush out — stable, tho it is dangerously high now. Dialysis may be required at any time now, according to Dr. Kalra. The internal medicine guy, Dr. Fang — so help me! — figures that at my current rate of increasing the creatinine level, which is about 1.0 (teaspoons/deciliter? Joke) a year, I still have some time before I have to shudder undergo dialysis, so I can afford to wait on the placement of the fistula. Kalra, like Fang’s predecessor, a Dr. Kozeny, thinks we should have the fistula operation done now; it may take up to a year to mature. So we’ll have it done. Two years ago, I followed Kozeny’s order and got a fistula installed in my right wrist. During the coma, some Dr. Dummy put a line for drawing blood and inserting nutriments in my right arm. And that killed the first fistula. So it has to be done over again. A litle thing, but it’s major surgery….
Eating I have managed to keep my creatinine level down and stable, where it is now, by careful dieting. I read a good book that posits that if you follow a diet low in protein, phosphorus, potassium and sodium, you can avoid dialysis for a long time. According to the case histories in that book, 4 years is a long time…. So I’ve been doing that, not as severely as the book recommends, but pretty faithfully, for the five years of grace. I feel skinnier, tho I have not lost much since the 50 lbs I lost during the coma.
It’s fairly hard to stick to the diet, even to the extent that I have. It means very little tomato whole or juice or paste, oranges or orange juice, corn bread, steak (3 oz is about right), eggs and other protein, dark leafy vegetables, saltines and other salty crackers, potatoes, soups, many prepared foods like deep-fried shrimp, etc., etc. We have a little booklet of about 50 pp that lists many common foods and their levels of the four dangerous elements. I am trying to keep daily entries of what I eat, tho I’m not real faithful about that.
Currently We just saw Dr. Kolra and he said, “Enjoy your life, have a wonderful summer and don’t worry about dialysis for the time being.” I am trying to do all those things.
I sleep pretty well, except that kidney production makes me get up 3 - 4 times/night. I exercise roughly 45″ every day or two, the arm and the leg exercises. I walk on the driveway with the walker about 1200 ft every other day. Mike is here, “baby-sitting” me three + days/wk He drives me all around, makes and makes me keep all the schedules of injections, blood tests, doctor/dental/optomitrist visits, hospital visits, and so on. Kayrene is still working, with a couple of health problems, bless ‘er, and we go to church and out to breakfast most Sundays; we try to go out more often, but I am shy. If you believe that milarky…. John Corkery is still here. He bought a beautiful truck the other day. He is readying all his equipment to get ready to go ferriering. That’s a real word; look it up.
That’s it for now. Peace and love, Donn
or beating more rapidly than the lower section of your heart. You feel an uncomfortable flutter in your chest or like your heart is going to jump out of your ribs or that your heart is “flip-flopping around.” Your pulse is irregular and/or more rapid than normal. Someone described their A-Fib as “…like a motor idling too fast in my chest.” You may feel lightheaded, very tired, have shortness of breath, sweating and chest pain, and sometimes a distressing need for frequent urination (it isn’t clear how A-Fib and frequent urination are related).
