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Name: Ray Py
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TOO MUCH MEDICAL ATTENTION BRINGS ON DESPAIR

 

 

Reluctantly, I have slipped further and further into a dismal depression. I am two more invasive procedures following the disappointing bust last week of an abdoman tap (parancesis) that both me and the doctors felt would alleviate the growing protrusion of my stomach and the filling of my abdomen with fluids. Hopefully I would have been more comfortable, my shortness of breath and exertion problems lifted. 

This week I will have an iron infusion and also an examination and possible procedure by a urologist, Dr. Chris Walsh, because my bladder no longer empties, leaving a vast accumulation of urine in the bladder. This could cause serious infection and lead to possible surgery to correct.

This morning Dr. Carron’s office called and moved an appointment from late in the month to Thursday. So I have doctor appointments this week for Wednesday, Thursday and Friday.

In only two weeks, I have had an upper and lower colonoscopy, a blood transfusion, a stomach tap, various blood tests.

I do not look to these procedures with any hope. Only more invasive attempts to “patch up” some serious illnesses that I know will never be cured. Failure to empty the bladder can cause serious infection in the bladder that could require surgery. The problem can be caused by obstruction, requiring catheters, or weakness of the bladder muscles of which I have little information. 

Yesterday was a bad day and I found it more comfortable to spend the day in pajamas, wrapped in a blanket and staring with more reluctance at a television set or the weather which was rainy, dark and gloomy. Carol helped me through such despair, providing me with my medicines, the food I needed and good company.

The president is dark and gloomy, giving negative approaches to every crisis he is facing in his first few days in office. The economy suck and I most pleased that I am not a stock holder in America’s industry. It does not seem to be a good place to be.

The news that is being printed n the newspaper follows the mood. I am reluctant to read a front page story about a woman who has lost three babies due to crib syndrome. She has the weight of a hippopotamus and has been known to sleep with her babies and in the process, crush them or smother them to death as they sleep.

Earlier in the week we read details about the drug death of a 15 year old girl whose body was tossed up on a driveway by a boyfriend’s father. 

Weather forecasters see no end of winter and more than too many times their predictions of foul and ugly weather are correct. We have had snow, much rain, cold and high winds. 

The sports pages reflect the mood. Today the story or a young high school basketball player who plays to sill play for his team even following his grandmother’s sudden death one week and his house burning down the next.

Business Week magazine informs me that I live in the 11th unhappiest city in America, brought on my continual unemployment and 175 cloudy days. In what few times I can get out, I see only faces marked, as I am sure mine is, with deep furrows. In truth, there are few happy faces out there and today I can only concur with the survey findings. 

 I know that if I have a bad night and cannot sleep, I will sleep most of the next day. I don’t know if this is good or bad. Sleep has a tendency to allow time to pass quickly and without consequence. But it is no way to spend days that I am beginning to feel are numbered somewhere for me.

I read an incredible number of books, probably as many as two or three a week. However, they are popular adventure books with action stories and similar plots. They add little to anyone’s intellectual capacity but when I have noting to read, I am a caged lion.

I can only express disappointment and almost deep resentment to what is offered as reading material in the local newspapers. They insult my intelligence and, I assume, the intelligence of a waning audience of readers. 

My food tastes vary. I have no suggestions as to what to buy at the super market that will change that. Food prices are so high as to make selection difficult. Carol tries hard to bring different menus to the table, but my appetite changes almost daily and I often am not appreciative.

I hear from friends only when I reach out to them with some topic. Or bring them up to date on my health condition. I have had a lot of support from many of my classmates and friends fro outside the city.

 

My immediate family has little time to send e-mails. At most, a short line of acknowledgement or a one-line greeting. Seldom an exchange of information. I get the impression they are all busy with their own lives and are constantly on the run.   

I only hear indirectly about my grandchildren. Chip and Stacey will call on a regular basis but I have not heard from Beth in several months. She has not forgiven me for some political remarks I made about her candidate. If I send out any political matter, I leave their names on the list.

How do you fight such despair?

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LIKE MOST OF US, BRET STILL WANTS IN THE GAME

 

Thursday, February 12, 2009

My intention today was to bring you up to date on spring baseball training which begins this week with the reporting of pitchers and catchers.

But the harpies of the sports press and the hyenas of the television camera will have none of that. They are having their “fun” with news that Bret Favre, an “indecisive” football quarterback of immense fame whom, I am proud to say represented my home state for 17 years has decided to retire. 

Favre says he will not play anymore for the rest of his life.  “Sure, he’s retired.” The harpies  say, “Until August maybe.”

But God Bless Favre and his indecisions. Some where deep inside, Bret wants to play although his aging body suggests differently.

Like so many of us oldsters who felt the gnawing once we gave up the career, Bret’s a hero, no matter how many interceptions, how many losses, how many sacks, how many critics. He still wants in the game. HE WANTS TO PLAY.

Once he retires, he will never do that again. It doesn’t come around again, not for him, not for any of us.

But it wasn’t Bret Favre I wanted to talk about today. I wanted to tell you more about those pitchers and catchers and spring training. I’ll do that tomorrow.

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BAD DAYS BRING BAD NIGHTS AND I PROWL

 

Wednesday February 11, 2009

I have good days and bad days. Bad days are those in which just about every ounce of energy has left the building, shortness of breath becomes painful, thoughts of heart attack are frequent and I am content to lay most of that day in bed. 

It is a bad day because I am almost useless and feel exactly that. It is a time of mental confusion, and the period in my long illness when I come closest to asking God to take me away. 
Bad days turn into bad nights, and if I go to bed too early, I do not sleep for more than an hour and I am often awake before midnight. Then I prowl much of the night that is left, eat small snacks, chew ice cubes, try to read and suffer the late night television programs until they become part of the problem and are not the solution.
 
 I hesitate taking a sleeping medication be cause they all leave me groggy for 24 hours. I have a high anxiety pill that is effective but not appropriate for all occasions.

I look out the windows to dark shapes on the streets, few porch lights, a passing car. I have been awake to greet the morning newspaper carrier. Last night I watched fog loom  and recalled the numbers of movies I had seen over my life when fog and mystery were the topic. When I grow weary, I find some comfort in a lounge chair but I do not sleep there..

I have the company of two police scanners and listen fascinated through the late evening at car chases, license plates being checked, homes being checked for prowlers, an ambulance call, whispering undercover cops following a suspicious drug deal—all into the night.

On Christmas Eve, I was so engaged in late night scanner listening I decided to see how many calls police would have to respond to in the last half hour before Christmas Day.

Like a miracle, the scanner grew quiet about 11:30 p.m. on Christmas Eve and remained so through the first 15 minutes of Christmas morning. I remember marveling at what was fully 45 minutes of  Peace on Earth.

But bad days mean there are also good days and I enjoy those with gusto as you will see in the days ahead.

Ray Py 
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I SEEK A SECOND OPINION FROM UW MEDICAL SCHOOL

 
Tuesday, February 10, 2009

In February 2008 after treatment for one year I asked my doctors to recommend a second opinion doctor to verify diagnosis they had made, particularly in regards to the presence of cirrhosis of the liver. I was delighted when they agreed and sent me to a teaching doctor on staff at the University of Wisconsin Medical School.

The examination was very thorough, but it did conclude that my doctors were correct in their findings. Although disappointed, I nevertheless was relieved to understand that we were not chasing a pie-in-the-sky . 

Soon after that visit I wrote to my children to fully explain the situation. This is what I wrote on Feb. 18, 2008:  

There's not a lot of good things to say about my visit to the Wisconsin Medical School last week to obtain a second opinion on the liver cirrhosis disease I have, but at least there are some answers.

Research into the highly confusing world of non-alcoholic liver cirrhosis is, at this day and time, practically non-existent. There is some work being done as to cause, but it is so minor that there is only a trace of progress to be reported.

They know the disease may be couched in the problems of alcohol, obesity, drugs, and genes, but little has been learned as to the actual causes. They also suspect that fatty tissue in the liver may be a culprit, but they have literally no idea what fatty tissue is.

 However, they do know that it has no relation to any meat diet, in spite of its label. While obesity is an issue in almost every disease, it is also a contradiction. Overweight people can get cirrhosis, but so can those who are malnourished. Vast obesity--those needing staple surgery to lose weight--are not among those who have the disease. They don't know why.

Alcohol is an obvious cause, but to suffer from its effects takes almost a life-long addiction to not only alcohol but to drugs as well. The liver is a tough organ and does not suffer lightly. But street alcoholics or those who drink regularly every day for long periods, may well become victims and suffer their own hell. But in the final analysis, their livers are as diseased as mine, and we die in the same agony. They don't know why.

The genetic issue is recently studied and there are 60 to 70 varied genes within the body that carry the disease, perhaps from one generation to another.

Most liver cirrhosis is discovered as a result of a non-related surgery as mine was or, as some literature states, through autopsies.

Wisconsin Medical is one of the largest and most successful medical research facilities and my second opinion doc, Samer Gawrieh, is also an associate professor there. He agrees with my assessment that liver cirrhosis is not a glamour disease. It is looked upon by the public at large as a curse, similar to the leprosy of biblical days, and therefore, funding for research is hard to obtain.

I have volunteered myself as a specimen, but the doc told me his research was not at the level yet to involve humans. He did promise to have me among the very first disease victims to test possible treatments, should that ever occur. Unfortunately, both the doc and I had to agree that such an effort would have to be sooner, rather than later.

In response to my direct question, the doctor said at the stage my liver was when it was diagnosed as cirrhosis in late March last year, I had perhaps two years of life expectancy. One of those years has ticked.

However, should I avoid becoming ill within 90 days in the year ahead, my survival quotient should improve. He said we had every reason to suspect this could happen.

My most immediate concern is the unfiltered fluids that enter my body. These fluids could grow bacteria in the blood stream, resulting in toxics that could enter the bloodstream, causing mental confusion, a coma and finally, agonizing death.

That's about it. Even though this is not the news I had hoped to hear, I'm glad I asked for the second opinion. I now have some kind of time-frame. Hopefully, I will function for most of that time and be useful somehow. I am weighing options.

One of the final questions I asked the doctor had to do with baseball. "Will I see another season?" I asked and he said I would. And I know pitchers and catchers are in Phoenix right now making that happen.

Love,

Dad


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MY DENTIST BECOMES MEMBER OF MY TREATMENT TEAM

 

Monday, February 9, 2009

I know I have promised not to dwell in this journal on the many discomforts of my diseases on the assumption that any such conversation might make me sound like a whiney old man. But now I have to tell you about dry mouth.

No one of my discomforts is as unpleasant as dry mouth, the result of disease and diuretics I take to prevent fluids from forming in my stomach and legs.

I am “a man in the desert,” gasping and longing for moisture.

Doctors are reluctant to reduce the diuretics because they fear liquid pools more harmful than extreme thirst, although I have asked,

Dry mouth will swell my tongue or cause it to stick to the top of my mouth, affect my speech, closes the throat, and make it difficult to breathe or swallow. It can cause extreme confusion and is a way of life for me all day and all night.

Diabetes has made my feet, ankles and legs dry and scaley and causes itching.

Doctors offer over-the-counter medicines as a solution, but they are difficult to apply and leave a bad aftertaste for many hours. Their effectiveness is questionable. 

Instead, I have sought solutions on my own. I find sucking a simple ice cubes the best way to gain moisture, relaxing and comforting quickly both the swollen tongue and closed throat. For deviation, I have re-discovered orange, grape and root beer popsicles as treats from my youth.

I chew hard candy, splash cold water in my face and mouth, lubricate my feet and ankles with a soothing skin conditioner. I drink cold power aid over ice cubes.

While I have become aware as to how bothersome dry mouth was, I was unprepared for the experience that made me realize that it was dangerous as well.

That realization struck when a large molar from the back and left of my tongue suddenly fell into my mouth. Only days later small portions of a second molar came loose, broke apart and fell into my mouth. Then an entire 4-set bridge fell from its place in an upper gum.

A retired dentist friend of mine gave me some answers. Increased dry mouth and the absence of saliva as a protective cover, had cause my gums to release hold of the teeth and loosen the molars . None of my doctors had mentioned this in the numbers of interviews we have had in the period of my treatment. It never became a topic of concern—ever.

That’s why today I found myself in a dental chair and my regular dentist a new member of my treatment team. Today he successfully capped the broken molar and a week ago he replaced the bridge to its prope place.

A gold-filled molar at the back of my mouth, was not replaced and today I learned that the gold  had earned me a $46 credit on my recent dental bill.   

Tomorrow—I learn bad news at the University Medical School

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