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LIVING
(& EVENTUALLY DYING)
WITH WEGENERS

When considering writing for publication, an initial question would be "Is there a potential readership sizable enough to begin.

If Wegener's Granulomatosis attacks just one in two million (caucasians only) then interested parties appear very limited. World wide that would only equate to 20,000 folks at best and probably many of those sickies do not read English. Hence, statistically I should probably forget this exercise in futility. However, while dying I vowed to write about my ordeal because there are millions of people who could contract said disease and if this article helped them or their physician to diagnose earlier, the hour or so I spend would be well spent. Besides, time is the most precious thing I have so using it to some end helps my own recuperation.

 

HOW THE MALADY BEGAN:

Pinpointing the day I got sick is impossible. The disease must find a way in and begin a very slow process of taking over the body. I was 67, had not smoked in 10 years, drank moderately before dinner, walked daily a 45 minute 3 miles, walked behind garden tools and the golf course with a vengeance. Of course, I took my marvelous health completely for granted. During the Fall of my 68th birthday I began to notice that grunt work (heavy lifting) caused the need to stop and pant. This annoyance was labeled "well, you're over 65!" Knowing my annual physical was coming up I disregarded this new condition. The physical showed nothing new and my physician sort of brushed off my complaints of tiredness and said that maybe I was getting old.

HOW I ALMOST WAITED TOO LONG!

After the clean bill of health which normally gives one a psychological boost, I felt worse on a daily basis. I developed headaches during the night (I never had a headache in my life even when hung over) pain in my joints and began to fall asleep during the day anytime I sat down. I continued my 12 hour walk and work day but it became increasingly difficult. When others said how well I looked I wanted to punch them. Finally, after deciding that I had leukemia, I heeded my wife's advice to somehow get my doctor's attention.

HOW TO GET YOUR M.D.'S ATTENTION:

In the old days you could walk into a small office and say to the lone receptionist/nurse assistant, "Hi Freda, I need to see Harry". Today, with the advent of modern medicine this scenario does not exist unless you live in a time warp. Knowing this, I simply wrote a terse message and personally placed it on my G.P.'s new desk in his new, sterile, clinic like office. The message simply said, "HARRY, IF YOU DON'T PAY ATTENTION TO ME, THE MESSAGE ON MY TOMBSTONE WILL SAY, I TOLD YOU I WAS SICK GODDAMN IT!!!!"

THE DIAGNOSIS AND HOSPITALIZATION:

Part of the following is etched in my memory forever; part is hazy. The new blood work was done the day before the Fall election. On election day Harry called personally and to get my ass to his office pronto! I saw fear in his eyes when he said I was, at that moment, in renal failure! Also, I heard him say to his assistant, "For God's sake, listen to your patient!" His assistant did a no no when doing my blood pressure as she shouted "My God Arnie, how high can blood pressure get?" I was sent off to find some foul tasting stuff called Koaxylate?? and told to get to the hospital.

When you live far from an urban center, if afflicted with more than a hang-nail, word has it to get to Philadelphia or New York. However, when dying, you not only head for the nearest hospital, you don't even care if your underwear is clean!

That evening Lady Luck and God intervened. A tall stranger, who became my savior entered my sick room and checked me out. He said, "Mr Garinger, you are very ill".
I felt better then because it was obvious he knew his shit. Next he guessed what I had and prescribed a bag of intravenous stuff which, if he was right would save me and if wrong would not hurt me further. He then said I would have to go on dialysis. At this time my creatinine level was 9.6 (normal is .5) my potassium level was 6.1 (normal is under 5.0) and my blood pressure was 210/106.

Again God stepped in. When I was scheduled for dialysis, some other poor bastard was dying and they put mine off for a day. By the next day the poison levels had receded enough to stay the execution, and tell us that while badly damaged, my kidneys were working on their own to some degree. After a week, my blood pressure came down to normal. They told me that without my daily regimen or fast walking that a stroke or worse would have been inevitable. I was sent home to a regimen of 20 pills a day and a god awful diet which follows:

THE DIET AND CONVALESCENCE:

When I was told that I would be taking huge amounts of prednisone (a steroid) I visualized bulking up with huge muscles. Wrong! This steroid knocks the snot out of your muscles and rendered my legs virtually useless and they are still a problem. I had heard that one can get used to any diet, no matter how Spartan. I am here to tell you that a renal diet is just awful for a once large eater. The word diet makes one think of healthy things like veggies and fruit. Forget them! In fact, forget most anything you ever adored. At the outset, take away anything containing salt. Potassium is a no-no so there goes bananas and oranges etc. Anything made by processing out. Anything in a can like a nice cup of soup is filled with salt. Never can you eat a sub or a sandwich with ham or bologna or cheese. Tomatoes are filled with badness so pizza is on the restricted list. Besides you can have so little bread that you cannot have a sandwich anyway, no matter what is contained within. Imagine one fourth cup of milk per day. That amount does not wet much shredded wheat each morning. I was allowed one fourth of a pound of meat each day. Usually chicken which my blessed wife carefully weighed and meted out. My daily manhattans went by the roadside. Chocolate (my favorite) was unheard of. Potatoes and carrots had to be blanched for hours to remove the potassium. As I took more and more prednisone, my taste and smell disappeared so al least I did not miss the wonderful aromas and tastes that I was not allowed. However, the meds and the diet did result in better and better weekly blood work results. After about a year I was slowly allowed to return to a more normal diet although while I would dearly love to put some salt on watermelon or cantalope, I may not.

THE FUTURE:

I have been off cytoxin (the life saving cancer drug that arrested the disease) and prednisone for several months. The medical people said it would take at least 18 months to completely arrest the disease. At this juncture, I am better but far from well. My legs tire easily and both feet feel as if they are heavily wrapped in tape with bubble wrap on the soles. I am playing some golf again but need a cart to get from shot to shot. When one asks questions about Wegener's stuff, there is little reply that makes any sense because there is damn little known about the problem. No one has a clue as to how one gets it. They only know one cannot get rid of it.

My next step is to a nerve doctor. If that proves fruitless I will seek acu-puncture as the next course and if that fails, I guess I will live with my condition and be damn glad about it. It sure beats the other alternative!

If you are going to get my disease, be sure your medical plan includes medication. Ours did not and last year we spent over $10,000 on drugs.

So there you have it folks. Probably you have just read the only epistle ever written by a Wegener's patient. Just in case you get the symptoms I did, don't let the sons a bitches tell you are just getting old.


Wegener's Granulomatosis
Arnie's Postlude
Who is Arnie Garinger
Mollies Follies
Campground Owner
Harvey's Lake
Retirement
Relationship Do's & Don'ts
College Misericordia Speech
Arnie Garinger's Tribute
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Arnie Garinger, May 14, 2002
First Edition
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Arnie Garinger