What If?

I am having outpatient surgery next week. The procedure is fairly quick, I’m told. I do not need to go under general anesthesia. I will be sedated, but not intubated.

Given my reduced respiratory function, any surgery has risks. The last time I went in for “routine” outpatient surgery, I ended up spending ten days in the hospital – four of them in a coma in the Intensive Care Unit! I do not rush into surgery without heavily weighing pros and cons.

This time, I have decided the pros (being able to maintain adequate hydration without worrying about pee math) outweigh the potential harm. I am moving forward with my plan for a suprapubic catheter, which I first discussed in this post.

In preparation for surgery, I am updating my advance directives. What – you don’t know many forty-four year old women with advance directives?

I first considered writing my advance directives for my friends and family when I was starting my career as a speech-language pathologist in nursing homes and geriatric rehabilitation facilities. Each day, I saw families struggle with what they thought their loved ones would want to have happen in their medical care. Too often, discussions about important matters such as artificial nutrition and ventilation did not happen until a person faced a life-changing event such as a stroke or head injury.

Living with what some medical providers have called a “terminal illness,” and being described as a person who “requires maximum assistance with all tasks,” means that some people look at the surface of my life and assume I have a poor quality of life. They see a disabled woman using a wheelchair who cannot function without her Personal Assistance staff and mistakenly think I must be struggling with life.

Thankfully, I have communicated my wishes for my medical care to friends and family. They were my voice when I was incapacitated and could not speak. As I lay in the hospital bed, my sister made decisions based on what she knew I would want.

She knew what to do because we talked about it. I wrote it down and sent it to her. She asked questions, and I was honest.

This week is National Healthcare Decision Week here in the United States. If you go to their website, you can learn more about the steps you can take to better prepare for your future. Each day of the week has a theme and Thursday’s theme is “Spread the Word.”

So, I’m telling you I’ve updated my advance directives. I will be emailing them to the people I have designated to make decisions on my behalf should I become ill or incapacitated.

What about you? Even if you are a healthy, young person, illness and disability can happen to anyone at any time. If you are unable to speak for yourself, wouldn’t you want the people who will be advocating for you to know your wishes?

The National Health Care Decisions Day website has a page listing resources. You can find it here, along with tips for how to chose a health care proxy and how to talk to your doctor.

Start the conversation today!

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The Importance of a Plan

April 16 was National Healthcare Decisions Day here in the United States, and I meant to share this post then. Even though it is a day late, the information is still valuable.

There are many times I am lazy. I don’t always sort my mail in a timely fashion. I often choose a good book over exercise. If the papers on my dining room table pile up for a week or two (or seven), I can live with that.

There are occasions when I keep my mouth closed. Granted, they are rare. But there have been instances when I did not share my true feelings with a potential romantic interest for fear of rejection. I have kept quiet in group settings so as not to delay progress towards an objective when I really had nothing additional to offer. This year, I have refrained from most political discussions.

However, when it comes to my healthcare and my wishes, I am never quiet. I wrote my first advanced directives when I was twenty-five. I have regular conversations with my doctors, friends and family about my health. They know my wishes, and thankfully have followed them each time I have needed them to speak or act on my behalf.

Last year, I wrote about my experiences relying on my healthcare agents in this post. In 2013 when I was unresponsive and ventilated in a coma for four days, my sisters and friends ensured doctors followed my wishes. They agreed to treatments based on the previous discussions we had.

This year, while I waited for surgery on my broken leg, I reviewed my wishes with my sister and friend who were with me at the hospital. There was an additional seriousness because we all remembered the last hospitalization. Again, my friends and family spoke up to doctors who only wanted to see a “wheelchair bound” individual instead of the active professional I am. When I was zonked out from the pain or medications, they gathered information and asked questions on my behalf.

Nobody wants to think about difficult times. Nobody wants to think about losing ability or becoming disabled by illness or injury. We avoid the conversations about end of life and disability because these things happen “later,” or to someone else, but of course not to us. We do not like to face our mortality or frailty. We are invincible, and we will be healthy until the day we suddenly die in our sleep.

Of course, life seldom works that way. We have car accidents or strokes. Our hearts, lungs and livers get diseased and fail to work. Or, someone who is supposed to help us get on and off the toilet drops us, and we break a leg. Wait, that may just be me…

The point is, there will come a time when you will need to make important medical decisions. Hopefully, you are alert and conscious when it happens. If you are not, who will speak for you?

Photo of an empty hospital hallway.
Make your plan before you end up here. Image from Pixabay.

I am alive today because I have had – still have – those difficult conversations. The people I trust to act on my behalf have followed my wishes. Yes, medical treatments and doctors have played a role in keeping me healthy. But when I was unable to advocate for myself, I had a support network of people who rallied around me to make sure medical professionals viewed me as a complete person.

The orthopedic surgeon who repaired my fracture in January continues to remark on my support team. Each time I see him the conversation is the same, something like:

Where are your sisters and friends? They’re ‘Johnny on the spot’ for you. You’re lucky to have them – they’re great ladies.

I don’t know if he really thought they were great when they were questioning him during my hospital stay. But he’s right – they ARE an amazing team. I am blessed to have them.

Who is on your team?

Do they know you are counting on them?

Have you given them the tools to do their job?

The National Healthcare Decision Day website has links to resources you can use to help start the conversation. Take the time now to put your wishes in writing and share them with your medical team and your loved ones.

Because, as the theme for NHDD 2016 says, It Always Seems Too Early, Until It’s Too Late.

Do You Have a Plan?

April 16 is National Healthcare Decision Day (NHDD) here in the United States. According to the NHDD website, the day exists to, “inspire, educate and empower the public and providers about the importance of advance care planning.” Everyone can benefit from talking about their healthcare choices and what they would like to have happen if they are not able to speak for themselves.

I have written before about my own experiences with advance care planning. I have been very vocal with those close to me about my wishes should I ever become unable to speak for myself. My first advance directives were written when I was twenty five. I have updated my health care proxy more than once since then. I am so grateful I took the time to have these difficult discussions at what many consider a young age.

In 2013, I entered the hospital for what was meant to be a routine outpatient surgery to remove my gallbladder. When the surgeon was unable to visualize the offending organ laparoscopically, he completed an open procedure. I knew this was the plan if laparoscopy did not work. I woke in the recovery room to learn I would be spending a few days in the hospital. My surgeon stood over me, telling me I had done very well during the procedure – as if I had done anything more taxing than sleep in an anesthesia-induced stupor!

That is the last memory I have from the seven days to follow. I was conscious for the next two days. I argued with the nurses about using a bedpan (I refused, and demanded a bedside commode), suggested my roommate try lamaze breathing for her constant pain, sent email and text messages and called family and friends. I even spent time on Facebook. But I don’t remember any of it.

I have no recollection of the thunderstorm which knocked out power and caused a flood in my room near the wall of windows. I can’t remember having discussions about discharge home and the extra personal assistance I would require. I only know what happened because I’ve read the hospital records and spoken with those who were there.

The surgery was on a Monday. Discharge was planned for Thursday. Sometime early in the morning on Thursday, as I was sleeping, I removed the Bi-Pap machine I wear at night. This machine is a non-invasive form of therapy which helps me maintain respiration at night while I am sleeping. My respiratory muscles are diminished so this machine makes sure I maintain adequate oxygen levels throughout the night.

When the nurse found me on her rounds, I was not breathing. I was unresponsive but still had a pulse. The medical professionals went to work quickly but I was unable to maintain respiration.

My sister Sandy is my health care agent, which means at some level she knows the first call made by doctors in any medical emergency will be to her phone. Knowing it and then receiving the call are two different things. She was an hour away from me when her phone rang that early morning in May and told the doctors to keep me alive until she could get there.

I spent the next four days in a coma in the Intensive Care Unit. My family members who had already spent too many hours in hospital rooms watching loved ones the prior year now spent hours at my bedside. Sandy had to make several difficult decisions.

Would she let them ventilate me to provide a stable airway?

Would she allow a nasogastric feeding tube to provide nutrition?

Would she agree to a central line in my neck to administer medication?

Sandy knew my wishes about all of those questions and acted exactly as I would have wanted her to. However, knowing my wishes did not make it easier for anyone to watch me lying in a bed with tubes and hoses attached to me in various places.

I woke from my coma late Sunday to see my beautiful sisters smiling down at me. They rushed to tell me not to talk, to explain the ventilator. I immediately indicated I wanted to write a message. We spent the next few hours attempting to communicate using a crude alphabet board. I was extubated the following day and probably haven’t stopped talking since.

The next day, I made the physical therapy staff assess me for transferring out of bed. I also begged the nurses to remove the foley catheter from my bladder. The central line in my neck came out the following day and on Thursday, a week after my original discharge date, I went home.

During my coma, my family consistently had to encourage medical staff to ignore the empty wheelchair in the corner and treat me as the otherwise healthy, active, independent woman I am. They would tell the doctors and nurses about my life, my accomplishments and my abilities. They were able to articulate my preferred positions, and repeatedly reminded the staff about the muscle contractures which make it impossible for me to lie comfortably flat on my back with my legs extended.

I am alive today because those I trust knew how to advocate for me when I was unable to speak for myself. Yes, medical treatment and antibiotics helped. But I know if I had not had a team of loved ones intervening and making certain my wishes were followed, things may have ended differently.

Discussions about disability and end of life can be uncomfortable. They remind us of our fragility and mortality. No one wants to think about losing their abilities. However, life happens to everyone and none of us can predict when we will find ourselves on a hospital gurney, staring at the ceiling and hoping someone will come to our aid.

Right now, while you are healthy and independent, you have power. You can control who will get that call, who will be tasked with making those decisions. Exercise your power now. Start the conversation.

Because when you are lying on that gurney, it’s too late.