Save your own life

Save your own life 24-10-13

The day of my surgery arrived and I was, of course, feeling very apprehensive. I had worked hard to get this appointment because I needed it, but I knew there was a lot that could go wrong.

Because I’ve been on a ventilator many times in the past, and have had two tracheostomies, I don’t have the easiest airways to work with. So I have worked with my respiratory doctor to create a plan to deal with any issues that might arise. But when I arrived at the hospital for my surgery, I hadn’t spoken to anyone on the surgical team about my plan, or my other unique medical conditions (including several allergies). Not having that discussion prior to surgery was very stressful for me.

I had a lovely nurse in the pre-surgery area who took all my concerns seriously. She filled in six or seven pages with information about my allergies and made special note to put the most serious allergies on the first page.

In the past, I have gone over my list of allergies and concerns during my chats with the pre-admission nurse and the pre-admission team. My family doctor had referred me to the pre-admission clinic for this surgery, but received a letter stating that he was not able to submit the referral. So I was relying on the pre-surgery nurse to take care with my information.

She assured me that she would leave the list of allergies on the front of the chart. She seemed as concerned as I was about the complexity of my care, and going beyond the call of duty, she told the OR staff that they would need to be on ‘allergy alert’ with me. Then the manager of the area poked her head in my curtained cubicle. She had been a nurse of mine years ago on one of my many admissions to the intensive care unit (ICU). She said she would also alert staff to my unique situation. I felt a bit better.

Starting to relax, I was wheeled to surgery, where I met with the anesthetist. He is someone I know and feel very comfortable with. A good friend, who is also an anesthetist, had talked to him before my surgery, explaining my allergies and other conditions that put me at high risk for complications. I am lucky to have such people looking out for me, and know that should have made me feel more at ease, but without knowing if everyone involved in my care knew my concerns and wishes, I was still nervous.

My anesthetist listened carefully to my concerns, and told me over and over that I would be fine. I told him I would be watching him closely to make sure he had taken all the tops off the vials of drugs that had rubber on them. Years ago, I ended up in anaphylaxis many times after a doctor or nurse didn’t take my allergies to the rubber stoppers seriously.  So I am always on high alert, making sure everything is just right.

In the Operating Room

I am wheeled into the OR and walked to the bed.  I talk to the anesthetist and watch what he is doing.  I scan the room, making note of who is there. As I get to the table I am so cold and nervous, I began to shake. I lay down on the operating table, thinking it seems very narrow, and hoping I don’t fall off. I am still shaking and ask my nurse for a warm blanket.

A lovely nurse introduces all the staff in the room to me. There is an anaesthesia resident, who looks extremely nervous. Two nurses in the corner are going over the instruments the surgeon will be using. My surgeon walks in and starts welcoming the group, and doing the surgical checklist. Everyone in the room is listening carefully and responding to questions about the tools that are ready, the medications they’ll be using. I hear one of the nurses say, “We have the Heparin ready for the new port.” I freeze.

I lift my head. “Heparin?” I say, “I’m allergic to Heparin.”

My heart starts racing. The relaxation I was starting to feel is being replaced by fear and panic. All I can think about is what could happen if I get the wrong drug: anaphylaxis, a tracheostomy, a stay in the ICU, maybe worse, the unthinkable.

I hear the doctor saying, “Yes that’s right, let’s get some sodium citrate.”  The anesthesia I’ve been given kicks in at that point and I drift off to sleep, hoping things go all right.

————————————————————

The next thing I remember is trying to wake up in the recovery room. I checked my neck to make sure I didn’t have a tracheostomy put in, and was relieved not to find one. I was anxious to talk to my husband to find out how things had gone. But I fell back to sleep, glad that I had remembered to ask the pre-surgery nurse to phone my husband when my surgery was done. When I was finally moved to the pre-surgery area, I still took some time to wake up. When I did, I could see my husband sitting in the corner of the room. He said he was worried, for it was a longer than normal time in the OR. I asked him what the doctor said, and he told me that no one had called him.

After my surgery I kept thinking about it– it was, as they say, a near miss. It scared me. It scared my family, and also it reinforced to me that even those in health care can and do make mistakes. Not purposeful errors – mistakes. They are human.

No one got mad at me when I spoke up. They corrected and got the right medication. I am lucky I was conscious enough to hear them.

I know I am a “high needs” patient. I admit it can be a little trying to take so many precautions because of my allergies and conditions. And I don’t like to cause waves in a system I am so highly dependent on. But I am sharing my story to help educate that next patient who could be lying on the operating table or in another health care setting and see or hear something that doesn’t seem right.

I went home after my surgery. I didn’t receive any information about when to use the port, and my husband didn’t get to speak to anyone about the surgery. There are things that could have gone better. But I went home, and I got to be with my family. So I am lucky.

If you are reading my posts, I encourage you to speak up, and be an active part of your care team.

Know what is going on every step of the way. Ask questions.

You just might save your own life.

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18 Responses to “Save your own life”

  1. Lawrence LeMoal
    Lawrence LeMoal
    November 1, 2013 at 8:06 pm #

    My dear Heather,
    My heart rate went up when I read about your near miss that occured despite the exceptional precautions you took that your care team should have managed. I fear the system is designed for us to be ‘patient’ and passive care recipients, and largely shrugs off engaged and assertive patients like you. We patients must also remember the system doesn’t fully support care providers who identify patient safety and quality issues. Patients, providers and system leaders need to continue collaborating to focus on quality and safety. Hearing stories like yours provides the fuel. Thank you!

    • Heather Thiessen
      Heather Thiessen
      November 2, 2013 at 5:22 am #

      Thanks Lawrence,

      I appreciate you reading and commenting on my post. You’re right. We are not there yet but working so hard to fix things. It will be the collaborating that has been missing and why I spoke up. I did it to not set blame but to use as a lesson and grow from this. I am hopeful that patients are considered a valuable team player. We know ourselves best and can be of great value. We are on the right path, I was listened to and chances made for that next patient entering the OR. Patients do need to be vigilant though and speak up if not feeling right or not heard. It could save their lives too.

      Take care Lawrence and keep up your amazing work too.

  2. Brian Deakin
    October 28, 2013 at 9:09 pm #

    Bravo Heather,
    I have encountered many similar problems where this is very poor or no communication. I no longer trust everyone and recommend we all look after ourselves. after all, if healthcare was rocket science it would not be in the mess it is today.It has got to the point where you could say whatever you want and no one will be listening.

    • Heather Thiessen
      Heather Thiessen
      November 2, 2013 at 5:13 am #

      Thank you Brian.

      I am saddened that you have had similar experiences. I feel with all the incredible work happening in our Province, especially with lean and patient and family centred care the health regions and provincial government are working on things. I would encourage you to contact you local health region and offer your services in an improvement workshop. Either a 3P ( system improvement project like the new Moose Jaw hospital or the Children’s Hospital of Saskatchewan here in Saskatoon) or a Rapid Process Improvement Workshop, which will take a problem in an area and with a team approach, always with a patient, take a week to find a new way to solve it. As a patient who has done a few, I know they work and things are on the right path. You have so much to offer and you thoughts and ideas would be welcome. Please do this, I can help you start if interested. Good luck in your journey in healthcare, remember to speak up. You are a major part of the team too.

  3. Deb Morton
    October 26, 2013 at 4:52 pm #

    HOLY CRAP!!! Heather. Something so “minor” , in some minds, that is so very important for your well being! I have learnt something new today that will make me a better health care professional. Thanxs!

    • Heather Thiessen
      Heather Thiessen
      October 26, 2013 at 5:14 pm #

      Thanks so much Deb. It is wonderful responses like yours that makes me speaking up and telling these events so worth it.

      You have made my day and for that I thank you!!!

  4. Lori
    October 25, 2013 at 9:04 am #

    Heather, I am curious about how you treated your thymoma. My husband is fighting it – he never really had any trouble with Myasthenia Gravis – and is not having much success. Thymoma is so rare we are seeking any ideas out there.

    • Heather Thiessen
      Heather Thiessen
      October 25, 2013 at 2:21 pm #

      Hi Lori

      I don’t often get questions regarding my myasthenia. So thanks as I do like to educate others as it is a not too common disease.

      I was treated with surgery to remove my Thymoma back in 1999. It was hoped that we would see a remission with its removal. Unfortunately I guess I the small percent who’s MG is aggressive. That being said I more stable today withy MG. I think perhaps it did help with the thymus removal. That along with weekly ivig treatment and some other medications I have been lucky. I hope this helps. I also keep a very positive attitude. If you want or need to talk more please let be know.

      • Lori
        October 25, 2013 at 2:49 pm #

        I would like that. Please e-mail me directly and we can make arrangements.

  5. Steven Lewis
    October 25, 2013 at 9:03 am #

    Thank you (again) Heather for this all-too-frequent but chilling story. What I really want to know now is, what did the team/organization do in response to this near-miss? How have they debriefed about the lack of follow-up and continuity once they got you off the table and you survived? It is one thing to acknowledge that humans make mistakes – of course we do. The whole premise of safety and quality is that you design the system(s) to make it much harder to make a mistake. If someone who was part of that team wrote a blog or communicated to you indicating that there had been an examination of what went wrong and a strategy to prevent its recurrence, there would be reason to celebrate the changing culture. It is a natural human response to put near-misses behind us, which is precisely why we need protocols that force us to address them and in the case of health care, to share the outcome with patients. Every study shows that a) harm and potential harm are vastly under–reported; and b) improvement is still largely an insiders’ game. It is changing, but not fast enough nor on a large enough scale.

    When even an articulate and vigilant patient like you, with “friends in court,” remains at risk, what awaits the rest of us? My mother and I are a case in point. Grace Hospital in Winnipeg somehow allowed my mother to wobble out of bed and break her clavicle in the ER observation area, after a TIA. I got a call at midnight from an ER nurse who said, we’ve recorded it as a critical incident. As in your case, it all turned out fine, but neither my mother nor I has ever been communicated with, let alone debriefed. While visiting my mother shortly after her ER admission, I watched 3 consecutive caregivers touch her without washing their hands – and of course I didn’t call any of them on it. All pleasant, reassuring, well-meaning people, in a hospital ironically rated as A+ by the CBC’s rating system, proudly celebrated with a big banner. We have a very long way to go indeed.

    • Heather Thiessen
      Heather Thiessen
      October 25, 2013 at 2:55 pm #

      Thank you Steven.

      So I did send in a written report of what occurred and met with a director who along with someone from the surgical area review and listened to me tell my account of that day. It was an emotional session for me as I always think of the “what if’s”. It is that “what if” that really resonates with me. As I have worked darn hard to be in the current state of health I am in now and do not want to end up in ICU. So I admit I get emotional but who wouldn’t when the thought of life is at stake. Now I am pretty sure I wouldn’t have died, but you don’t know. With my MG I need to avoid all unnecessary stressors. Both physical and emotional.

      I receive a letter back just recently with what occurred on their end. I do know there have been some work done to ensure this situation will not happen again. I feel quit satisfied with the results and do trust that this will not occur again. Guidelines have been set up and for that i am so pleased. I know for some trust may never come back easily but in my case I think my case I am happy.

      It is so important that even with the smallest event that we patients and families do speak up. Not to cause issues but to identify a risk. We can be a vital part in the safety culture in the hospitals. The more we do speak up the more common it will be and we can be continuously improving. Is that not what we want. I know I want to be part of safety and reporting it in our hospitals and I want to see changes.

      I think I have made a step in this direction and hope that many more patients feel they will be able to speak up as well. As with anything to do with change it. Will take time but I am hopeful.

      Thanks again for your comment. I am curious why you didn’t call the staff of hand hygiene. Do you feel you were insulting them. Just do what I do and remind them nicely that I am enjoying staying healthy and want t keep it that way so please please wash your hands!!!

  6. Dennis Kendel
    October 25, 2013 at 8:50 am #

    Thanks once again for sharing your experience to help other patients feel more comfortable with speaking up whenever they sense they are at risk of preventable harm. Keep sharing stories from your wealth of experience.

    • Heather Thiessen
      Heather Thiessen
      October 25, 2013 at 2:35 pm #

      Thanks Dennis

      I appreciate your kind words. It is my personal goal this year to help empower patients and help them be more engaged in their health. I feel it they are more engaged perhaps experiences of “mistakes” will be a thing of the past.

      I promise to keep helping my fellow patient. Whose voice may not be as loud as mine. Right now. Give it time.

  7. Cathi
    October 24, 2013 at 6:51 pm #

    The sad truth of your story is that these events are becoming more frequent all the time. I truly wonder what medical charts are for sometimes. They are supposed to be the “story” of the patient. If a medical professional is too tired/overworked/bored/hurried (whatever the symptom may be) to read AND comprehend the patient’s information, what is the purpose of having it? It appears counterintuitive to go through the motions without using the knowledge with the tools and skills.

    • Heather Thiessen
      Heather Thiessen
      October 24, 2013 at 9:52 pm #

      Hi Cathi

      Thank you for your comments. It does sometimes seem that way. I feel your frustration. This is why I am speaking up and telling my stories. It is my hope that with this story and the focus on the surgical initiative, we maybe sooner but still have work to do on the smarter and safer. Those combined with our provincial lean journey. Stories like mine will be just that. Stories. I have faith this will happen.

      It is so important that we patients and families do speak up. This is why I shared my story. Not only for patients and families but also for the staff. To hope they learn and remember my story for that next patient who enters the OR.

  8. Michele Cozart
    October 24, 2013 at 4:10 pm #

    Thank you Heather for writing as you do. It’s good to know that it’s okay to speak up. So often we leave it in the hands of the staff as they should know what they’re doing. This information says to is that it’s your life they are dealing with and it’s a serious matter. Time to speak up for yourself! Good job! It’s too bad that it had to happen to you again though.

    • Heather Thiessen
      Heather Thiessen
      October 24, 2013 at 9:58 pm #

      Thanks Michele.

      Yes we do trust and I don’t want us to forget to trust. That is why it is so important that patients become part of the team and when we are doing our pre op checks. Patients are included in it. Go over all the information together. OR staff and patients. This way when something is said that is wrong it can be corrected in front of the patient and everyone is at ease.

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