Tuesday, August 12, 2008

Oh we think we know so much!

I had a fight with my aerobics teacher last night. Yep. Can't say that's happened before.

She was substituting, though I've had her before and don't remember her mood being that foul. She was crabbing at people for not trying hard enough, for not lifting our legs high enough or for not reaching our arms far enough back or for not using heavy enough weights. She said, "You've all been here for years now, and you must try harder!" We raised our eyebrows to each other, but no one commented. On and on she went, relentlessly.

Then it came. This skinny (though none too cute!) little whippersnapper said, "How do you want to die? On a hospital bed like Bernie Mac or like Issac Hayes, who was standing near a treadmill?" She went on to say how Bernie Mac died because he didn't exercise or eat right or live a healthy life. She was laughing and insinuating that if we didn't do better, we'd die just like Bernie Mac. Now I don't know Bernie's medical history, but I do know he had sarcoidosis, which is a rare autoimmune disease that attacks the lungs, and indeed he died of pneumonia. As a faculty member I conducted research on lung transplant patients, some of whom had sarcoidosis. Further, I cannot stand when people make judgments about people's health status. We all have different genes and issues, and it is not up to others to "judge" what someone could have done to have prevented death. I've seen health care providers walk up to a patient dying of lung cancer and the first thing out of his/her mouth was, "Did you smoke?!" It's too late for those sorts of judgments.

But I digress. Back to my story. I couldn't help but speak up at this point. Remember, I'd been slow boiling through this whole class (most aerobics instructers there are excellent). I said, "Well he had sarcoidosis!" She then argued with me that he really died of his gluttony (she knows his medical history?). I explained that sarcoidosis can be quite serious, and she had the audacity of saying, "I read about 'sarcoidosis' today, and it's mainly found in Blacks who neglect their health." She'd read about it??? Where? On Wikipedia? What balderdash! Here is a brief description for those who aren't in the medical fields. That was it. I pulled out the heavy ammunition. Normally I don't brag about my background, but she deserved it. "I have conducted research on patients with lung transplants," I told her. "Some of them were patients with sarcoidosis, so it really is quite serious! It is an autoimmune disease with an unknown etiology, and it most certainly is not caused from an unhealthy lifestyle!" I have to say, this know-it-all did quiet down after my diatribe.

I don't know what Bernie Mac's (or Isaac Hayes's for that matter) actual cause of death was. But for her to assume it was due to lifestyle is just beyond me. The worst part is, besides teaching aeorobics, she is a home health care aide. I'd not want her caring for any of my patients!

10 comments:

BreathinSteven said...

Hey Lady!!

I'm with you... It's so wonderful when people pull this superiority attitude because they were blessed with good genes or a good metabolism or even good discipline... And with my unique ability to pull a superiority attitude from the other side of the fence -- don't forget that she's an aerobics teacher, which is probably on an equal level with the person handing out towels and waterbottles at the counter...

She's not paid to think, or even to have a mind -- she's paid to work your muscles, which is likely all she's qualified to do...

I've dealt with a good number of people like her who would glance over at me with my skinny, pathetic self coughing my guts out in a corner or on a bus -- you could sense that they somehow saw a personal failing: I was a smoker -- I did drugs -- something... It hurt. The bigger problem is that people like her aren't just trying to motivate you -- they actually believe the crap that is spewing from their traps...

I too have met several sarcoidosis patients with major respiratory involvement -- some have new lungs... Some didn't have the opportunity and died while they were waiting... And she has the gall to look at someone like that and make that judgement...

Granted -- sometimes we can take better care of ourselves and sometimes we overindulge -- but please imagine trying to exercise with 15-20% lung capacity while you're sucking O2 knowing that exercise and reducing intake is the only way you'll drop some of the pounds you need to drop... (Also knowing that the one thing that you MAY be able to still devive some pleasure from in life is eating because anything else wastes your precious air and energy...)

I imagine we'd see how quickly she would turn if her daughter were dealing with something like this (of course, the excuses would apply only to her daughter...)

I have cystic fibrosis and a little over eight years ago I received two beautiful, new lungs... After living almost 40 years with truly crappy lungs and never understanding what it was like to breathe "normally" -- this blows my freakin' mind every single day -- and it's been over eight years... I think about the beautiful girl who saved my life throughout the day, every day... I can see her smile when I close my eyes...

I have a little about my story, and a little about my beautiful donor at www.ClimbingForKari.org

Thanks for putting in your two-bits and sticking up for people who we simply don't know about and need to give the benefit of a doubt...

Love,

Steve

Steve Ferkau
Chicago, IL

Cat said...

I, too, get tired of people judging me and thinking they know things about my health because of how I look. I am overweight. I know I'm overweight! That doesn't, however, mean that I'm lazy or piggish. I have heart and respiratory issues that have prevented me from being as active as I'd like. I'd love to be fit, and maybe someday I'll get to be fit again, but for now it's just a long, slow journey. If I had an instructor like that I'd complain to her boss, and I'd also think about taking my money somewhere else.

Kalleh said...

Steve, I don't know how you found this Blog, but I am glad you did! I read your links, the poems, and your heartfelt story. I don't know where you received your lung transplants, but I worked with lung transplant patients at Loyola Medical Center in Chicago. Perhaps I met you? Thank you for your inspiration!

Cat, interestingly there was a new study published by the U. of Michigan that showed a surprising number of overweight people - about half - have normal blood pressure and cholesterol levels while, at the same time, shocking numbers of thin and "healthy looking" people suffer from ills that society associates with obesity. So the people making judgments are just doing so based on false information.

This was a substitute teacher, thankfully. I am contemplating complaining about her, and I most certainly won't attend another one of her classes. I suspect, after our public conversation, that she won't want me in another class anyway!

BreathinSteven said...

Hi Kalleh!!!

I found your blog because you mentioned "lung transplant" and I keep an eye out for that... (I have "alerts" set for such things -- when I see them, if it's someone waiting or considering or surviving lung transplant, I do what I can to try to motivate them...)

And I don't know if we met -- we very well may have! One meets so very many people on this journey! I got very sick in 1996 -- I started the listing process in the summer of 1997... I was listed on September 8, 1997... I naturally attended clinic every three months from that time until transplant (and ever since afterwards...) I also participated in a number of studies and interviews...

After four "false alarms" in 1999 and early 2000, I was transplanted on April 8, 2000... If you were involved during that time, or with post transplant patients in the years that followed, we very well may have met!

Thank you so much for reading my links and poems -- it means so very much to me that people know about Kari... (The poems were by one of her close friends, who is my close friend now...)

I blog about organ donation at Revive Hope with one of Kari's friends (the one who wrote the poems...) I posted some fun news there the other day titled light bulbs, light bulbs, pearls, pearls...

Thanks again for this post... Thanks for all the help you gave me and my peeps who got new lungs...

Love,

Steve

Kalleh said...

breathinsteven,

Our paths absolutely could have crossed if you had your transplants at Loyola because that was just the time my colleagues and I were studying bronchiolitis obliterans and bronchiolitis obliterans obstructive pneumonia (BOOP) which sometimes occurs in transplant patients. We were trying to find ways to prevent it from occurring. I was at Loyola from 1990 to 2002.

I think it's so important for people to donate their organs. How grateful you must be to the family of the girl who donated her organs. When you're working in transplant medicine (I am a nurse with a PhD) the perspective of course is different because you see the joy in one family and the grief in another. It is so good that you've maintained contact with the donor family. I am sure it has helped them a lot.

Thank you for introducing yourself to me! And good luck!

BreathinSteven said...

Hi Kalleh!!!

I just think it's so very cool that you were doing something that may have helped, or may help me personally. Thank you...

I've been so incredibly lucky since Kari gave her gift to me... And please don't ever think that the multitudes of people around me, who helped me, don't cross my mind quite often...

Whatever they do -- honing surgical techniques -- studying better use of immunosuppressive regimines -- learning why patients develop BO / BOS / BOOP / whatever -- you've helped, and you're helping me stay on this beautiful planet just a little bit longer...

I'm sure we overlapped --I hope we've met! I was at Loyola from 1997 through 2006. I'm a doctor/team-follower and I followed them to UofC -- but there is still a star-studded amazing group at Loyola! (Do you remember Penny Pearson and Michele Martin?!?! I totally adore them...)

And I've been involved with Gift of Hope, Iowa Donor Network, UNOS and other donation / transplant related organizations on the joy and grief aspects -- I've met so many donor families and I've cried over so many of their loved ones... Very often I've taken their hurt deep inside. And I try to show them what they and their loved one have given to others -- and how those of us who have received think of them...

I think of Kari always. I think of her Mom & Dad nearly as often...

Thanks again for doing what you do!!!

Love,

Steve

Donate Life said...

Hi Kalleh,

Just wanted to introduce myself as Steve directed me over to your great post. What a great interaction above, such a small world it is.

I manage Donate Life Illinoi which is the statewide coalition of donation agencies that focuses on donor education and registration in Illinois.

I love meeting people from the transplant community and hearing how they've helped save so many other people's lives.

A lot of our focus is on reminding people about the state's new registry and the need to re-register after Jan. 1, 2006 to ensure your wishes to be a donor are honored.

Anyhow, we're over at www.donatelifeillinois.org and and blog at www.iamareyou.wordpress.com if you're interested in checking us out.

Hope you have a great weekend,

Scott
Donate Life Illinois - Campaign Manager

Kalleh said...

Welcome, Scott, and thanks for your good work.

Sometimes coincidences are just too close for comfort. Since I've worked in transplant nursing (I started with kidney transplants right after I graduated from nursing school), I have always been an advocate of organ donation. In fact, when I was at Loyola, I used to work in an exhibit, periodically, where we educated students on organ donations. And of course, my driver's license indicates that I wish to donate my organs.

However, within the last 2 weeks, my darling, lovely daughter emailed me and introduced me to Illinois's new organ donation Web site. She and her friends have registered on it, and she asked me if I wanted to. I did that and just today received my letter from the state saying they've received it. Of course, I am in no hurry for this to happen!!!

Life's coincidences sometimes amaze me.

Steve, I don't recall Michele or Penny, but I was more involved in the academic side, rather than the practice side. Did you recall Dorothy Lanuza? She worked with quality of life with lung transplant patients, and she was also a colleague of mine. I worked with all the surgeons' patients, but I seemed to cross the path of Ed Garrity more than the others. It's a very small world, isn't it?

BreathinSteven said...

Hi Kalleh!

I'm still with Dr. Garrity -- I followed him over to UofC -- I'm a doctor follower and I tend to like to hang with those to "took me to the dance" -- and I just like he and Dr. Bhorade... (The Loyola crew are equally awesome...)

I'm not certain I remember Dorothy Lanuza -- I wonder if her studies were wrapping while my wait was beginning? Her name sounds familiar -- and I definitely remember a "quality of life" study that was releasing initial results in the first year or so of my wait... Maybe she gave a presentation at our group...

The thing I distinctly remember is their findings about cystic fibrosis post lung transplant -- and that we CFers seemed to have a markedly higher quality of life than many others, even if our outcome wasn't as good as others... I think they attributed it to living virtually our entire lives with compromised breathing and new lungs being so far beyond anything we could comprehend that pretty much anyt outcome was pretty dandy...

It's funny -- but I think I hung my hat on that study -- I still had a long time to wait after we heard some of the initial results of that study -- but that study truly gave me a morale boost... It helped me believe that this was going to be awesome...

If Dorothy only knew my outcome!!! It really is beyond my wildest imagination, Kalleh... And I do think about Kari constantly -- I kinda always imagine a precious angel with a beautiful smile always over my shoulder...

Love,

Stewve

Kalleh said...

Well, Steve, Dorothy has left Loyola, too; many of us left around 2002 or so. I found her email address and sent her a link to this discussion. I'd love for her to see how great your outcome was! To hear from patients like you makes everything worthwhile!