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.

Advocacy When Sick, Part II: Quality Control

In my first posting of this series, I discussed the loss of control patients face when they have a medical crisis. 

Well, patients take note: 

You do have control by advocating for yourself during your medical care. 

Doctors, nurses, and other medical personnel are not perfect. Being human like everyone else, they can and do make mistakes.

It is your job to help navigate through the complicated maze known as the medical system. And an important way to do this is by watching your staff cross their t's and dot their i's. In other words: keep your eyes on your medical care.

I'm not suggesting looking over everyone's shoulder and venturing into paranoia. What I am suggesting, though, is to be vigilent by taking an active role in your treatments. This is accomplished by asking questions, politely telling staff when you think there's an error, and just being aware of information and actions regarding your treatment.

I have many examples illustrating the previous paragraph, but I'll just give you a few examples.

My friend was going through chemotherapy and realized at the beginning of one treatment session that the bag of fluids beginning to drip into her body had another patient's name on it. Horrified, my friend alerted the nursing staff and insisted that this treatment be halted immediately.

 

My chemotherapy nurse, on the other hand, didn't make any mistakes with me. But she admitted that because she was dyslexic, she had to double- and triple-check the doctors' orders for all patients. We joked about this at times, but deep down inside, I knew to kindly -- but assertively -- ensure I was getting the right chemo treatment.

My oncologist already told me each of the three chemicals to be administered to me. So I would ask Anne, my chemo nurse, "So what's the name of this chemical?" and "And the Cytoxin follows?" Knowing which chemical was going into me and when each was being administered was super-empowering. 

And even though Anne remembered certain shots I was supposed to get, I felt obligated to myself to remind her or to talk about it during the course of my sitting in the chemo chair.

Another example is when I had a lovely overnight sleepover in the hospital. I was unlucky enough to be in a room near the nurses' station, where they would babble loudly. Feeling that was not conducive to my healing, I told them to keep it down, as I was trying to recover from surgery. 

They kept it down. 

They hated me. 

But they used their inside voices.

Mission accomplished.

So my advice to patients is the following:

• Don't be afraid to remind doctors of tests you need and to confirm your treatment plan.
• Don't be afraid to speak up if you have any doubt you are about to receive the wrong treatment/tests or are doubtful of the ones you are receiving.
• You can control your medical environment to some extent.
• Play an active role in ensuring you get the best possible medical treatment.
• Do all of this courteously. Nobody likes or listens to a whiner.

Becoming a patient with a medical condition isn't an ideal situation for anyone. However, if you are active instead of passive, you will feel empowered. And that's what counts.

Advocacy When Sick, Part I: Loss of Control

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.

Advocacy When Sick, Part I: Loss of Control

This is the first in a multi-part series on how to be your own best advocate and friend in the event you find yourself in the unfortunate situation of facing a serious illness. Other Calling the Shot postings will deal with other issues, but the Advocacy When Sick series is specifically directed at those facing illness and the people who love them.

No matter what the illness or how severe it is, a major problem is the loss of control that a patient feels when diagnosed with an illness and/or going through treatments. This feeling of helplessness dominates a patient's mind and can cause the patient to feel his or her life is spiraling out of control.

And the problem is, that's exactly what's happening. The patient has been diagnosed with a condition that was never wanted and, in some cases, must have treatments on doctors' and nurses' timetables -- not the patients'.

And this is one of a patient's major frustration when dealing with medical personnel. 

While one cannot change one's medical circumstances and their timing, he or she can employ some coping mechanisms to help lighten the burden of feeling that life is spinning out of control. I want to share my own experience and then offer tips to help you feel that you at least have some control over your life.

When I was going through breast cancer treatments, one of my major psychological problems was coming to grips with the fact that I had to cancel business meetings and cancel parts of my life because a doctor and the chemo nurse were scheduling my life: They told me when and where I'd be getting the next round of treatment, when I'd see a doctor, if I'd see a doctor, and so on. I learned pretty quickly that saying "This date won't work for me; can we do the next day?" was futile. The nurse would say (nicely) "You will be here on this date." 

Said nicely or not, those words reminded me that my life was no longer my own, but it belonged to the doctors and nurses.

I'll give you a specific example from my treatment days: One day my radiology oncologist was on vacation (I knew in advance she would be), and I was grateful I wouldn't have to see her that particular day even though she was so sweet to me. After my radiation treatment, the nurse said, "The doctor will see you now" (It was another doctor). I stammered, "But my doctor is on vacation, and I don't want to see another doctor." Despite my complaints, the nurse ushered me into an examining room to wait to see the physician and said nicely, "The doctor will see you soon."

I started to sob. Like primal, baby sobbing. The nurse immediately held me in her arms, wiped away my tears and rocked me like the baby I was. I don't remember her name, but I wished I could've thanked her for giving me the compassion I needed, just at the moment when I felt I couldn't handle any more loss of control.

So whatever your situation, here are some tips to help make your loss of control seem more bearable and how you can feel that you've kept at least some of your control (this can also help loved ones of the afflicted family member):

• Tell doctors and nurses that you feel you no longer have control over your own life. I wish I had verbalized it; I could've avoided a few meltdowns.
• Tell medical personnel of your emotional state. I wish I had done this more often, for I would've felt less lonely.
• Each day write a list of what you do have control over.
• Realize that the truth is none of us has complete control over our lives.
• Realize that you are choosing or not choosing medical treatments.
• Remember that you are hiring or firing doctors and hospitals.
• If you need to, see a pastor, counselor, or whichever person who can best minister to your emotional needs.
• Ask for help from an organization that helps people with your condition. I went to Gilda's Club and used the services from the American Cancer Society's Reach to Recovery program.
• Journal about your feelings. Trust me, a journal will help you feel you have control over your situation because you can write whatever you want in it and not be judged. My journal became my friend.
• Become involved in hobbies that encourage self-expression, such as painting, photography, making collages about your feelings, music, writing, etc. or just get involved in any hobby that you already have or would like to have and can do. You do not have to be Michelangelo or Bach. The point is to keep busy and be distracted from your personal pain.

These tips can somewhat alleviate your feelings that life is spiraling out of control. And any peace of mind, especially when faced with illness, is worth fighting for.

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.