Let’s Hear It From The Other Side

What a weekend!  We went up to Prescott, Arizona, to donate some copies of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to doctors up there and drove right into – are you ready? – SNOW.  We were not prepared, but were absolutely delighted.  This called for an unscheduled stop to feel it on our faces again.  You’ve got to remember I’ve been out of NY for a decade. Above is what we usually see on road trips.  Notice, no snow.

We didn’t just work, either.  I heartily recommend the 1912 Hotel Vendome which is a very homey bed and breakfast with the best home made waffles (home made – low phosphorous, something we can eat!) If you get up there, speak to Eric, the owner, about connecting with Darlene for  a ghost tour which includes as much history as it does spectral information.  Drive over to the Heritage Park Zoo which houses ONLY rescued and rehabilitated animals.

If you’re still feeling zooish, go to Bearizona near Williams which is a drive through.  You better keep those windows tightly closed and keep moving through because those bears are not shy of humans as a swipe at our bumper that set the car rocking let us know. This zoo is 55% rescues and rehabilitated animals.  I don’t think I’ve ever enjoying a working weekend more.

Working… ah, the book.  Remember you can email me at: myckdexperience@gmail.com for a personalized book at the discount price of $10.00.  You can buy it in either the digital or print form at Amazon.com or B&N.com.  It’s also available, but in print only,  at http://myckdexperience.com.

A while ago, Dr. Kevin Pho had me guest blog on his  KevinMD.com.  Recently, I wrote a blog about being in charge of your own treatment.  Somehow, somewhere I realized that I’d never advocated for the physician.  As a patient advocate, that makes sense; but is it fair?  Then I came across this book excerpt on Dr. Pho’s site and I had my answer.  I had to give the other side the opportunity to be heard.

I need to advise you that I have not read this book, simply the excerpt on Dr. Pho’s site.  However, I do like what the author has to say for the most part.  My concern here is if we do attempt to become this friendly and human with the physician, will she (or he) have the time?

It’s been clear to me – no matter what kind of doctor I see – that the physician is very carefully watching the amount of time spent with me.  Other patients I’ve spoken with about this have agreed: our beleaguered physicians have only so much time for each patient.  I would suggest keeping that in mind as you read the excerpt.

An excerpt from The Take-Charge Patient: How You Can Get The Best Medical Care (Lemon Grove Press) which will be released May 15, 2012. 

Here are a few suggestions that will help you make the most of your relationship with your doctor. They are for your benefit as a patient, because the more you know, the more empowered you will feel.

Remember That Doctors Are Human Beings

Almost every health care professional emphasized that we all must realize that doctors are people just like us. They have personalities, feelings, good days, bad days, families and social lives.

Sometimes doctors are forced to sacrifice important events to tend to their patients. They miss their kids’ soccer games, medical appointments, school meetings and social events. Sure, they chose their profession, but the demands and sacrifices are great. I never realized just how much they sacrifice for their patients until I interviewed the physicians for this book.

Humanize Yourself to Your Doctor

It’s easy for us to feel the urgency to get right to the point of why we are seeing the doctor. We begin listing symptoms, talk about how we aren’t feeling well, and ask for help.

I happen to believe that if we jump right into our symptoms, that is how the doctor will view us—as a set of symptoms she needs to diagnose and treat. I want my doctor to see me as a human being, just as I see her. If she sees me as a human being, then more than likely she will connect to me personally, and that can enhance her willingness to help me. This may not always be possible as some doctors simply are not interested in connecting personally to their patients.

Use Your People Skills

If someone likes you, they are more willing to go the extra mile for you. This is where your people skills are useful because your doctor will respond to you more positively if you are friendly. That isn’t always easy if you aren’t feeling well, but I’ve heard from many doctors that a patient who is angry, bitter, belligerent or has a bad attitude is not well liked. Being a likeable patient is being a smart patient.

Being a smart patient doesn’t mean you are faking or being disingenuous. It means you implement strategies to maximize your interaction with the doctor and her staff. You don’t have to put up with bad treatment or allow anyone to treat you disrespectfully—I’m not suggesting that you be a doormat. I’m suggesting that being a nice person will get you more of what you want.

Be Nice to Your Doctor

Be nice, polite and appreciative. Many doctors shared experiences with me about patients who were not nice to them. If you aren’t nice to your doctor, you are not going to get what you want.

Your doctor has something you want that you cannot give to yourself. Do your best to elicit a positive response from your doctor. It’s just common sense.

We’ve all had experiences with doctors who have made us wait forever when we weren’t feeling well or whose staff ignored us or were rude or unhelpful. I’m not asking you not to stick up for yourself; I’m asking you to express yourself diplomatically because you need what this doctor has to offer.

I try to show goodwill and appreciation toward my doctors not just from a public relations perspective (although that does factor in), but also because I do truly appreciate what my doctors do for me. I am mindful of how far a simple verbal thank you or thank-you note goes.

The goal is to let your doctor know that you value the good care she gives you. If your doctor goes the extra mile for you, express gratitude. We all like to hear that we have done well or that we have done something to improve someone else’s life. Doctors need that too.

If you complain a lot or approach the doctor and staff with a bad attitude or a sense of entitlement, you are simply not going to get what you want. If there has been a serious error or act of obvious neglect, channel your anger so you don’t come across as out of control. Remember—be firm but respectful. No name-calling or yelling. You only discredit yourself if you yell at doctors and their staff. You look like the villain if you lose control.

Be Nice to the Doctor’s Staff

Befriend the doctor’s staff. This will help you in a multitude of ways. For example, if you have an urgent message for the doctor, need to see the doctor the same day, need a prescription refill sooner rather than later, or need a procedure scheduled immediately, most of the time you’ll get your needs met much sooner if you are friendly and appreciative of the doctor’s staff.

Most medical professionals suggested trying to talk with the same person each time you call the office to establish a relationship with that person. This will be your go-to person if you ever have an important need to be addressed.

If the front desk person fits you in for an urgent appointment, thank her. This person did you a favor.

Be Nice to the Doctor on Call

Several doctors mentioned the importance of being polite and respectful to the doctor on call—the physician who is covering for your doctor. If you are not, word gets around. This affects how the doctor and her staff perceive you, and it can affect the quality of your medical care.

Act Involved in Your Health

Who knows your body better than you do? You are the expert on you—share with your doctor what you know so she can do her job.

Most doctors said that patients who are involved and invested in their health cause them to be more involved and invested in the patient’s health. Many physicians said that if a patient doesn’t care, it makes their job much more difficult. Many said that patients who don’t care aren’t going to follow their instructions to get better.

If you think about it, what is your doctor’s motivation to go out of her way for you if you give the impression you don’t care about your health and medical care?

You can find the original of this at http://www.kevinmd.com/blog/2012/04/tips-maximize-relationship-doctor.html?utm_medium=twitter&utm_source=twitterfeed

This seems like simple common sense to me, but when you get sick, sometimes that just goes right out the window.  I’m not proud of it, but I clearly remember leaving screaming messages on a former nephrologist’s answering machine when he would not call me back about surgery I was having in just two days.  (I finally had the surgeon call him.)  Yes, he was an incredibly arrogant person who had no respect for me, but did it help that I treated him – shall we say – less than respectfully, too?  Answer: Nope, it just helped my self- respect fly out the window.

Until next week,

Keep living your life!

Pollyanna Lives… In An Artifical Kidney

It’s amazing how long a week can be sometimes.  This week felt longer because I was not careful about overdoing, overdid, and spent two days in bed (well, that part of it was great: DVDs, books, phone conversations, a little internet).  I’ve learned my lesson… I think.  I have this vague recollection of saying the same thing July 4th weekend when we went up to Prescott for the rodeo and parade but ended up in the hotel room pandering to my neglient energy level instead.  Okay, maybe this time I really have learned my lesson – at least, until next time. Some lessons are hard to learn, but I’m hopeful.  Hmmmm, have I mentioned my kids refer to me as Pollyanna?

Talking about Pollyanna, I found this article in Renal And Urology News and started hopping up and down with excitement – while trying to stay seated at the computer. I’m not exactly a kid and am distressed at the thought of having my children disrupt their lives – if they’re even matches – when and if I need a kidney.  My brothers and my finance are all older than I am and, logically although sadly, might not be around at that time.  So who will donate their live kidney to me should the need arise?  If not a living donor, won’t I be placed on the list to wait… and wait… and wait?  Maybe not.  Here’s hope:

Nephrologists and Urologists Collaborate  on Implantable Artificial Kidney

                    Figure 1. An implantable artificial kidney moves closer to reality.
Figure 1. An implantable artificial kidney moves closer to reality.

Four years ago, a joint effort was established between nephrologists and urologists at the Cleveland Clinic Glickman Urological and Kidney Institute to develop and implant a bioartificial kidney. The bioartificial kidney uses a high-efficiency biomimetic silicon nanopore filter that acts synonymously as a glomerulus, in combination with a kidney epithelial cell bioreactor that allows for reabsorbtion of essential electrolytes from plasma filtrate (Figure 1). A Phase 2 trial of an extracorporeal system utilizing these technologies was completed in 2005. Current efforts have been aimed at miniaturization of technology to facilitate implantation of a miniaturized biohybrid device.

This project has been funded by the National Institute of Biomedical Imaging and Bioengineering, the Wildwood Foundation, Cleveland Clinic, and the University of California, San Francisco. Nephrologists and engineers  involved with inception and initial development of the project include William H. Fissell, MD (Cleveland Clinic), Aaron J. Fleischman, PhD, (Cleveland Clinic), Shuvo Roy, PhD (University of California, San Francisco) and H. David Humes, MD (University of Michigan). At Cleveland Clinic, Dr. Fissell, a clinical nephrologist, has teamed with Matthew N. Simmons, MD, PhD, a urologic oncologist to develop prototypes suitable for surgical implantation.  Dr Fissell has a background in biomedical engineering and oversees design and construction of the components of the device. Together, Drs. Fissell and Simmons work through the processes of design modification, surgical implantation, in vivo device maintenance, and functional monitoring. To date they have implanted four hemofilter devices, the last of which remained in vivo for five days.

This project is a model example of the advantages of direct partnership between nephrology and urology colleagues. Dr. Fissell and colleagues provide expertise in terms of materials engineering and renal physiology to develop a device capable of reproducing kidney function.  In partnership with Dr. Simmons and the urology team, they are steadily advancing the transformation of the device from concept to an implantable reality. It is hoped that the success of this research may eventually impact the lives of millions of patients with kidney disease.

You can find the article at: http://www.renalandurologynews.com/nephrologists-and-urologists-collaborate-on-implantable-artificial-kidney/article/216193/

On the book front, there’s another book signing coming up. Here’s the “official” notice”:

Gail Rae, author of “What Is It And How Did I Get It? Early Stage Chronic Kidney Disease” signs the book while the radio shows she’s guested on play in the background.  Not only are the books for sale, but Next has terrific goodies and – of course – coffee for sale. That’s at Next Coffee Company 19420 N. 59 Ave. Glendale, Az. 85308 on Saturday, Dec. 17 at 2.  Locals, come join me!!!!  This is my hangout place when I need to get away from the computer and out of the office so you know one of my two cups of coffee a day is drunk here — and it’s so good.  They have food, too, even rice krispies treats which you know we can eat.

I am excited about having a book signing right in my own backyard so to speak.  It’s not the now transformed Muddy Cup in Staten Island where I used to hang out while Ingrid Michaelson (yes, THAT Ingrid Michaelson) waitressed, but it’s welcoming and you just might meet an interesting medical student since Midwestern University is right across the avenue.  I’ll be looking for you then.

Oh, I’ve got the link to the last radio show I guested on, the one with the heavy hitters full of information I hadn’t heard about before:  http://www.voiceamerica.com/episode/57739/what-is-your-ckd-experience-with-gail-rae-and-a-medical-breakthrough-with-asea-how-redox-signaling

Until next week,

 Keep living your life!