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A Doctor Gets Sick

Introduction

There is no life experience that can prepare one completely for the words from a physician like "you have renal failure and will need dialysis" or "you have cancer and it is metastatic." In all the years that I have told countless numbers of patients that dialysis would be needed, I silently admired them because I did not think that I could ever endure hearing those or similarly fateful words.

To my horrid dismay, on the first of July, 1998, I had such an experience, as a routine chest x-ray revealed metastatic lesions in my lungs. It is amazing how rapidly we accept bad news and how we regroup to develop a strategy to cope with and overcome it.

The first thing I did was become disoriented. I actually got lost in the radiology department where I did my internship. But, after getting a grip I grasped the resolve to fight this dragon.

Fighting the disease

How I chose to fight it is based upon the insight I have gleamed over twenty years from the most brave and tenacious patients I have taken care of. This is sprinkled with the luck of having done part of my internship and residency in the very hospital where I now am a patient (MD Anderson Cancer Center).

Knowledge

There is not an excuse for any patient not to have full information about every clinical trial, every protocol, the side effects and benefits of therapy. He or she has at their fingertips merely to push the correct keystrokes to become very informed. The National Library of Medicine's PubMed was my first stop. I reviewed every possible scenario and therapeutic opportunity, and wanted to be secure that the choices of treatment I had would be of the most benefit to me. Yahoo was an alternative source. I found my support group on ACOR,The Association of Cancer Online Resources, Inc, and the most valuable oncology resources on the web. The ultimate source of knowledge is the experienced physician. Even doctors need doctors.

Physician

Except for the fact that we are both fighting bad disease, there is a world of difference between the nephrologist, your friendly supporter through the odyssey of dialysis and transplantation, and the oncologist. An oncologist today may on the surface be Marcus Welby. But, underneath that veneer of professional polish, lies a warrior. No Mr. Nice Guy to the chromosomally endowed little critters thinking of my lungs as a picnic site. Today's successful oncologist, at least in my case, is your military commando. His war is mitotic cancer cells. He comes in like the general with a battle plan, yes friendly and caring, but also firm and decisive. You are the battlefield and have been invaded by the enemy. His job is to pursue, attack and destroy the enemy, cut out the resistance, then spray again with Agent Orange or Adriamycin or some other certifiable poison until all remnants of the enemy, its family and friends, are dead. It is pure genocide, pure hatred and a military attitude that drives the best of oncologists. Do not let the fact that they may wear a button that says "Searching for sushi" fool you - these men and women are Rambos. Once the beast is dead, cut off its blood supply. Then grow hair back and "have a nice life."

Support (Internet Style)

One of the most useful sources for me as a physician has been e-mail discussion groups. I have been around the world touting this message for NKF cyberNephrologyTM and the International Society of Nephrology. Our focus was establishing links to the famous nephrologist's discussion (and sometimes support) group NEPHROL, headed by Dr. Kim Solez. I have always lurked on DIALYSIS and several patient groups, and even awarded NEPHROL and DIALYSIS the coveted Golden Nephron Awards based upon my impression of how useful it was to patients and nephrologists. Little did I know how truly valuable these are until I too got sick. My SARCOMA e-mail group is made up of a closeknit group of supporters. I have never seen nor had the pleasure of smiling at or hugging one of them in person, but on the web they are my special extended family. Not only fellow patients that have been through what I am going through, but scared newcomers and old weather-beaten soldiers who have fought the dragon of metastasis many times, and serve as an example. He or she can do it, I can do it, you can to. Support, prayers and information are at the heart of these groups, and there is one for you, regardless of your disease.

Compliance

I have spent a tremendous percentage of my time telling my patients that they needed to show up for dialysis, needed to stay for the full treatment. I have heard every type of excuse for cutting times and treatments. Some patients have cussed me out. One said "Get out of my face." Another said "You have no idea what it is like to go through this." I have sometimes become unpopular among patients because I would not accept the selfish remark , "It's my life" My response, "But, what about your wife, your little children and grandchildren, your friends. It is selfish to rob them of your beauty just because you are too impatient to sit in a chair four hours." Maybe it is fate, but my chemotherapy time is the exact time as my average patient's dialysis - four hours. I go to a state hospital, and sometimes have to wait two and a half hours to be put on. I have a pesky pump as my companion, and can either watch boring soap operas, read or sleep. I can complain, laugh, or cry. There is only one thing, and one thing only I cannot let myself do - cut my time short.

There are no guarantees how we will respond to therapy, dialysis or infusions. The best we can do is follow recommendations because they are the results of past experiences and at least we have the benefit of pioneer patients that went three hours and five hours and settled for four.

The same with taking medicines, drinking proper fluids, staying on the right diet. All things in health care work as part of a single system. Doing the right thing is the only way to stay healthy. If one does not want to stay healthy, then think of those who will have to care for you, or will miss you.

With a great deal of humbleness and humility to my patients, I can now very safely proclaim, "It is a lot easier to be the doctor than the patient"

Being a better doctor

Any time you do not have control of your own body it is humiliating and defeating. From the moment the armband is placed on your hand you become different. The needles in veins, shaving your skin, more needles, gowns, betadine stains, tape burns, tests in machines that sound like broken pumps - it all leaves you feeling helpless. This experience is compounded by the fact that you have a disease that has a relatively high mortality rate. All the time I was in the MRI I was thinking about what I could do to make my patient's experiences better based upon the humiliation I was enduring.

Being on time

Patient's time is valuable, even more so if we have a disease that may shorten our lives. Making us wait two hours is cruel and inconsiderate. I will hopefully never do this again. For us doctors, nurses, support persons and dialysis staff to make patients wait an hour or two is extremely humiliating and dehumanizing, especially to one that has taken off work, and is striving to show himself and perhaps his boss that he is not incapacitated by his illness. These waits are the result of understaffing. As medicine has changed to meet economic demands, staff shortages were often seen as the cost-saving remedy. Now, mature health institutions, seeing that quality of care and outcomes are the true measure of success, are realizing this mistake and rehiring staff, decreasing dialysis ratios back to 3:1, for example, and resolving this problem.

Calling my patients by their properly pronounced names and titles.

There is no reason why any office staff cannot take one or two seconds to learn the name and title of a patient. After twenty years of practice I do not like to spend my final years being called mister. "Take a seat, mister, we are running late" is the most hurtful approach one can take to the doctor, judge, politician, general, captain or clergyperson. If one does not even care who you are, how careful are they with your tests, your blood, or sticking you. Staff needs to realize that each person that hands you a card is a precious human life struggling to survive. Sensitivity and respect are everything.

How the doctor can have time for patients

There is always the struggle as a physician of giving a patient enough time to answer all his questions and being on time. The secret is physician extenders. It is unfortunate that still in this state, Texas, and perhaps elsewhere, we have not yet evolved in dialysis to fully utilize these wonderful people. I would rate the professional care I received at MD Anderson the highest in the world, and on par with anything I have seen in Nephrology, and yet I have seen my oncologist only twice. Why am I so happy even though he is not the one that takes my blood pressure and personally tell me my new medicine dose? He spends an hour with me each time, he sits down, and does not leave until every answer is delivered. He is not rushed. He can practice sensible health care.

I have dealt with his extenders every day, sometimes twice a day - they are always there for everything - but he is the general, the chef, definitely in charge, supervising, but not actually performing day to day minor decisions. There exists no reason why this positive experience cannot be duplicated in the management of stable, healthy dialysis patients. The trade off is that I can have much more time for the brand new patient about to start dialysis that really needs my time, more time for preESRD education for newcomers, or for the difficult dialysis patient that does not cooperate, and more time for the patient that has a significant severe problem.

Speeding tickets

I also chose to let this experience become an eye opener for me - making me a better person. My partner and colleague for fifteen years told me , "God just gave you a speeding ticket."

We go through our lives in a work-sleep-work cycle. For me it is a work-Internet-sleep-work cycle. Pretty soon our kids are going to college, our hair is thinning. We forget how to live. We rush through life. Why do we do this? Each is endowed with a tremendous inability to see that we are mortal. We think life is endless, and that someday we can retire and then start to enjoy its full pleasures. Only when a close friend or loved one dies do we ever think about the possibility we may also die. But all too soon its off again to work-sleep-work-sleep.

As tragic and horrible as it is to have a bad type of cancer, there is some good in that it serves as a reminder that every day is precious. We accelerate the parts of life that are enjoyable. We think about all the wonderful and fun things that we were going to do during retirement, and do them now.

A close relative of mine developed metastatic disease twenty years ago, underwent chemotherapy and did great. Now, I realize why we have so many oriental trinkets in our house!!!

So, dialysis patients, friends at Anderson and on the web, and the rest of you, find what you enjoy the most and do it now. Do not wait to retire. There are wheelchair ramps and dialysis machines on most cruise lines. Your history and physical is a keystroke away from a doctor in Paris, London, or Bangkok. You can get excellent transient dialysis in Kathmandu. It is well worth it to have that future trip in mind when you are sitting in the chair for four hours.

To life

Dr. Fadem

©1998 Stephen Z. Fadem, MD FACP. All rights reserved. No part of this article can be reproduced without written permission of the author. International copyright laws apply.

Also read One Year Later
Find out more about Sarcoma



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