I am not a disease, I am not a checklist

[okarol]

I am not a disease, I am not a checklist
JORDAN GRUMET, MD | PATIENT | NOVEMBER 26, 2013

I am not a disease.

Although when I enter your hospital, or office, or outpatient center, you may refer to me as one. You may lump me together with an odd set of symptoms, or signs. You will define me with those antiquated terms. You will pretend that you will know how I, my body, will react when placed under certain stressors. You will prescribe treatments for my disease, and yet leave me out of the equation.


You know, the me that the rest of the world sees when I am outside the obtuse boarders you have created. Only a fraction of my life occurs in your realm. The labels you give, the actions you take, have consequences. They may determine my physiologic or economic well being.

Are you listening?

I am not a checklist.

You may use one when deciding whether my treatments are covered. You may question my doctor, read him the riot act. You will say that I don’t fit your algorithms. I do not adhere to your guidelines.

Diseases follow a pattern, unlike every other aspect of human behavior, they are quite predictable. Why should I be different from any other? Why should my pain and suffering be unique? Require unique solutions?

I am not a mark.

My suffering was not meant for your exploitation. I see your commercials on television. People with my disease run through angelic fields with smiles on their faces. I do not live here. I do not run when my body aches and my mind is numb.

You ride in like a savior and ride out with my wallet strapped on your back. You offer false prophesies. Some of your drugs, injections, and sprays truly save lives. Others are crap.

Must you treat them as one and the same? Just to make money?

I am a human being.

My disease is part, not the whole, of me.

Lift your eyes from your tired misconceptions, your white-washed guidelines, and your market-driven economies.

And look at me.
.................

Jordan Grumet is an internal medicine physician and founder, CrisisMD.  He blogs at In My Humble Opinion.

http://www.kevinmd.com/blog/2013/11/disease-checklist.html

[galvo]

"People with my disease run through angelic fields with smiles on their faces. I do not live here. I do not run when my body aches and my mind is numb."I loath the booklets with smiling youngsters enjoying their supposed kidney diseases!

[MooseMom]

I have a real problem with this blog post, and I am trying to define what that problem is.  So forgive me if my musings sound disjointed.

I've been through the medical minefield just like everyone else here.  Years tracking the decline of my kidney function, two pre-tx evals, pre-tx testing, tx itself and then the aftermath of it all.  I can't honestly say that I have ever felt like anyone's checklist.

Perhaps if we go into all of this with the impression that a medical professional will treat us as a checklist, then we will treat HIM/HER as a checklist, as just one more appointment to attend, just one more medico to confront, one more technician to bear.

I have an interest in the people who treat me.  My neph and I have had many conversations ranging from Scottish architecture to Steig Larssen's Millenium series ("Girl With the Dragon Tattoo", etc).  I know my neph's nurse has struggled with breast cancer.  I know my first pre-tx coordinator spent 15 years as a dialysis nurse and was only 3 weeks into her new post as a coordinator when I first met her.  I know my current coordinator has a little boy and has spent some time as a single mother.  I know my transplant nephrologist is a Muslim from Sudan who spent much of her career caring for dialysis patients but got so depressed by what she saw that she moved to transplant nephrology because she wanted to be able to provide patients with hope.

I have never spoken to anyone who deals with CKD patients who has EVER painted a rosy picture.  My nephrologist flat-out told me that fsgs is "a horrible disease".  No smilies and daisies there.  No one has ever given me a booklet with smiling youngsters or oldsters prancing among the flora and fauna.

I do not let anyone treat me as a checklist because I will not allow myself to treat anyone else that way.  I am curious.  I ask questions.  People like that. 

Just my two cents.

[Stephen Attwood]

I am completely with you. I often have the feeling that the doctor is only interested in the funds he can claim from my medical aid! Last year I was put onto high calcium PD bags (shortage of normal bags....). By April my blood calcium was in the danger zone and I had to be treated to reduce it (saline and cortisone drips, with special care measure blood pressure) - 5 days in hospital. I had severe heartburn before this episode and took Eno Tums (calcium carbonate), Guess what was blamed for the high calcium... not the bags! My GP doctor ordered a ionic calcium blood test, not the total calcium normally checked by the specialist. My specialist told me that ionic calcium was irrelevant. The doctor treating me in hospital (Internist) reckoned the problem was either due to high calcium bags or "milk-alkali syndrome" due to sensitivity to calcium carbonate. My nephrologist did not even appear concerned about my condition and even suggested that the Internist did not do the correct treatment. It is not nice to know that this treatment is not confined to my third world home country (South Africa) but in USA too! I don't mind dialysis. PD is a wonderful method and does not restrict me as much as haemo. I'd love a transplant, but where are the donors? My gripe is with the so-called care providers. What care?

[Jean]

 I thought the post was beautiful.