Peek-a-Boo I C U

I C U. Intensive Care Unit. It's intensive, alright. But it's not a care unit.

On regular hospital floors, during the day, quality staff are available. It's "showtime" at the hospital, where relatives and friends of the patient get to see how caring, nurturing, dedicated, and loving the doctors, nurses, and their staff are. Nighttime at the hospital is quite another story.

Nighttime in ICU is a nightmare.

If you are going to spend time in ICU, I strongly suggest you have someone you know and trust be there all night to advocate for you. Insisting that you have someone there during the night won't win you popularity contests, but it will help ensure that you can avoid the trauma of the very unit that is supposed to take care of you.

After my double mastectomy with reconstruction at a hospital with an excellent reputation, I spent two consecutive nights in ICU, nights so horrific, that I think I could make a living selling t-shirts that say, "I was in ICU, and I lived to tell about it." 

The first night, all night long, a young, inexperienced nurse kept forgetting to check on me at the intervals the doctor had ordered. To make matters worse, even though I was trying to mend physically and psychologically, the nurse kept telling me about each ICU patient's condition. I'll spare you the gory details, but she eventually whispered in my ear, "You're the lucky one. You are the only one getting out of here alive."

At least she whispered. The ICU staff in an adjacent room were singing audibly about one of the unfortunate patients who probably wouldn't make it. I cried, thinking of that person, laying there -- as I was laying there, strapped in -- with a mocking song being the last thing he or she would hear.

By daylight, the smoke screen was back. 

The loving, sweet staff returned by 8 a.m., just in time to give visiting families and friends the show of their lives. When my family brought up my complaints, they were assured that I was delirious from all the medication and that I was exaggerating. I also told my doctors about the things I heard and saw, and they were concerned and complained to the ICU staff about various mistreatments. I was proud of myself: I advocated for myself and would receive better treatment that night.

Or so I thought.

The second night was worse. I woke up in the middle of the night, parched with thirst, and in near-total darkness. My bed was moved into a dark corner, and I was afraid. I called out for someone to please get me water, but to no avail. I begged for water non-stop and begged for someone to come by and help me because I was now afraid that I would die of thirst. I kept begging for help.

Nobody showed up until dawn.

Had a friend or relative been there that entire night to advocate for me, I could've taken a break from begging and allow my companion to do the dirty work. 

The day after the I'm-Dying-From-Thirst-But-Nobody-Showed-Up-Last-Night episode, I told my surgeon what happened. He decided it was detrimental for me to be in ICU any longer, so I was moved to a far better unit, one without the words "Intensive Care" in it.

Whatever hospital unit you are in, I really cannot emphasize enough the importance of having an advocate -- someone you know and trust -- staying overnight with you. If I could rewind back to that time period, I certainly would have done so.

Three-plus years after this trauma, I am still unsettled. But if my experience will help at least one person have an advocate by his/her side during hospital nights, it would make my suffering have more meaning.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

New Year, New Advocate You

Another January is here, and New Year's resolutions abound.

So, with this new year and new decade and this first blog column of 2010, I am suggesting five resolutions that you should make and follow through on.

I am not referring to the latest crash diet or super-fix-it exercise regimen. I am referring to something requiring more courage and determination: Taking care of your health through being your own best medical advocate. Here then are the resolutions:

1. Resolve to make an appointment for a complete physical (including bloodwork and, well, the works).

2. Resolve to ask your doctor two questions during the appointment.

3. Resolve to give your doctor an emotional prompt to measure his/her level of empathy. For example, rather than just saying "Yes, I need this mole checked out," you could say "I need this mole checked out, and I'm very concerned [worried, afraid, etc.]."

4. Resolve to followup with the said doctor via phone to discuss results, future health goals, etc.

5. Resolve to eat sensibly (instead of fad diets, consider lifestyle changes [more fruits and veggies; low-fat, high fiber diets, etc.) and exercise reasonably.

I practice what I preach. In about an hour, I'm leaving to see my first doctor of 2010. I will have two questions, an emotional prompt, and a followup interaction. I already do No. 5.

By the way, given my past health crises, it's no wonder I hate making and going to doctor appointments (although I love my doctors). But I'm going to go through the motions and try to be patient with being a patient.

Make your call and show up. If I can, you can, too.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

A Patient-Centered Bill of Rights

Too often, patients are confused by the language of various Patient's Bills of Rights because the language is often convoluted and confusing. It's hard enough to be a patient, so reading through muddling language only adds anxiety.

So, in my Fantasy World of Medical Advocacy, here's my version of what a Patient's Bill of Rights should look like:

Patient's Bill of Rights

1. You have the right to be civilly disobedient with any medical personnel who you perceive does not have your best interest at heart.

2. You have the right to hire and fire doctors at will.

3. You have the right to question treatments without a doctor being condescending to you.

4. You have the right to understand that you are on equal footing with a doctor because you are both human beings with comparable self-worth.

5. You have the right to truly collaborate with excellent doctors you trust and who truly have your best interest at heart.

6. You have the right to a voice in your own medical care.

7. You have a right to have doctors return your phone calls on a timely basis.

8. You have the right to follow your gut instinct and not allow medical people to manipulate you into ignoring it.

9. Whether you are incapacitated, in the hospital, or extremely sick, you have the right to speak up in any medical settings.

10. You have the right to choose your medical destiny to whatever extent possible.

11. You have the right not to be bullied or badgered by anyone -- from receptionist to doctor -- at any time.

12. You have the right to being treated with respect and to employ civil disobedience if you are being bullied, badgered, and disrespected in any way. In short, say "no" to thugs.

Calling the Shots in Your Medical Care

This blog-form column is designed to encourage and inspire people to take the reins of their own medical care. Whether you have advocated for yourself or a loved one, or you want to know tips on how to do so, this blog is for you.

I became a self-advocacy expert when I was diagnosed with breast cancer in January 2001. The road toward health has been fraught with difficulties, setbacks, losses, and suffering. But I am grateful to be alive and loved -- and to have a platform through which I can help others.

Every person who is diagnosed with any medical condition is unlucky. In particular, the "C" word in particular still fills people's hearts with dread.

In some respects, I was especially unlucky when I was diagnosed with breast cancer. At a relatively young age, I suffered through a lumpectomy, chemotherapy and radiation, constant medical testing, a few false alarms, and eventually a preventive double mastectomy with reconstruction. I had also become infertile as a result of the treatments. The ironic part of it all is that I was in excellent shape and fit.

But despite my diagnosis, I was also lucky: my cancer hadn’t spread, I had excellent doctors, and I had the best advocate in the world – myself.

Through self-advocacy, I caught my own breast cancer, prevented a recurrence, and ensured I received top-quality HMO medical care. Before my breast cancer diagnosis, I knew nothing about interacting with doctors and self-advocacy. Sure, I had routine exams, but like most people, I was intimidated by doctors and believed everything they told me. I was not immersed in the medical world. My breast cancer experience would change all that.

In my self-advocacy journey, I have taken actions that were unthinkable to my pre-cancer self: hiring and firing doctors, asserting my needs to medical personnel, scolding difficult medical staff – and in one instance allowing everyone on a train car to know my sordid, private medical details! (Curious? Stay tuned for a future blog.)

This blog will offer tips on how to advocate for your medical needs. Regardless of your condition, situation, prognosis, or ultimate outcome, too much is at stake to allow organizations and medical personnel to intimidate you and fully determine your fate.

You are the one who can call the shots in your own medical care.

During my public speaking engagements, people often ask my advice on how to find the right physician, what to do if they are unhappy with their doctors, or how to handle being dismissed by medical personnel. When others find out I advocated for myself, they want to talk with me about this topic. People need to know how to advocate for themselves.

Although you cannot always control your medical situation, remember this: you are the driver of your medical care, not a passenger.

When it comes to self-advocacy, you call the shots.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.