After being in denial about it I hit the guilt stage. Now because I have cystic fibrosis I don’t think I will ever get over the guilt I feel. Looking at the parents of these girls I can’t help but feel guilt. Guilt that I’m still alive while their daughters were taken from them. Then came the anger stage. This stage still comes and goes in my life. The depression stage lasted a few months. Every time I felt some sort of joy the guilt would kick in that I was still here while Lisa and Jessica were not. The guilt would then put me into depression mode. It wasn’t till about 8 months later that I could fully accept that they were gone. I accepted that I could never have them back and I accepted that I would have to continue on this CF journey alone. BUT for some reason I kept going back to anger. To this day I’m still so mad. I know there’s nothing I could have done to bring them back but I couldn’t remain silent about this loss that I had. There is this empty space that will never be the same. This made me angry. I was so mad at the fact that nothing more could be done. I was mad I didn’t get the proper goodbye I would want. My mother helped me realize that I could say goodbye 104 times to these girls and it still wouldn’t be enough. Like I said before I still feel guilt. The anger is still there as well. So I decided to take my anger and use it to my advantage.
Channeling anger to make change happen
I wanted to use the anger I had and make a change. Not just for me and not just for CF patients everywhere. But for Jessica and Lisa. So I slowly started to raise my voice. I spoke publicly about CF and what it does to a person not just physically but emotionally. I was tired of people asking “WHAT IS CF” the more I heard these words the angrier it made me. So I would go on to speak more about not just CF but patient care. Some people don’t know that happiness and being healthy go hand in hand. If you have a strong attitude and a positive mindset you will see a difference in your health. Maybe not today or tomorrow or 5 weeks from now. But I know firsthand that the happier you are the more you tell your mind “I can do this” or “its ok my body is working as hard as it can” you will see a change.
For some reason my anger motivates me. My anger encourages me to speak up not just about cystic fibrosis but about all patients dealing with any illness. The reason I even got involved in patient advocacy was not for me. It is for Jessica and Lisa. It is for all CF patients. It is for all patients with any illness. It’s to recognize that every patient has a voice and a story. Not every patient will speak up. I didn’t speak up for the longest time. I thought no one would listen. The day Jessica died and 8 days later when Lisa died that was when my anger had to be dealt with. Anger towards their death. Anger towards my health. Anger towards every patient fighting every day just to have a life. I needed to do something. I could no longer sit back and watch people fall through the cracks. I took my voice and my struggle with my anger it flipped it. I flipped it to use it to my advantage.
I am at a point in life where I no longer want to watch the clock for the day I pass. I want to change the way patients and their families deal with their care. Depression is an invisible illness that more than 50% of people with an illness deal with. Some may see this as weakness. At age 14 I was diagnosed with depression. My body now depends of anti-depressants. I’m not happy about it. But it’s just another struggle that I will continue to fight with. Once again the anger towards all this motivates me. Rather than sit around being mad at the world I want to educate the world. I want to educate families, patients, doctors, nurses and anyone else dealing with health care. In a way losing my 2 friends made me a stronger person. Some days I break down. I lose sight of why I do what I do. I have to remind myself to take the anger and guilt and move forward be stronger louder more courageous than the Cystic Fibrosis. I will always have bad days. I will always have good days.
The bottom line is I write these posts and give these speeches to avoid anyone EVER being in my position. I know there will another like me someday but I want to avoid them going through the guilt and anger. I want to see patients happy even though they have an illness. Everyone deserves happiness. Especially when you are battling for your life every day.
This is dedicated to Jessica Forsyth & Lisa Lawrenson. CF warriors.
I’ve been a patient of the health care system for over 20 years. When you’ve spent so much time in hospitals, you end up being a teacher of some sort. Look at it this way: you have this subject (your illness) and your job – other than taking care of yourself – is to educate others about your illness.
Although many doctors are also teachers, patients like me often deal with resident doctors (the students). That’s why I’ve written these 5 tips to help teach residents about how to interact positively with patients.
When speaking to a patient or family member, remember to be patient when they ask questions or have concerns. Nobody wants to be rushed when it comes to their health.
Whether you are bedside or in an office, remember to be kind to your patients. They are probably scared and nervous and need to feel that they can approach you (the doctor) without feeling put down. It’s best not to stand over the patient if they are in a bed. Sit next to them and show that you care.
When speaking with a new patient, be mindful of your tone and how you approach the patient and the subject of their health. It’s best not to overwhelm them. Talk to them with an understanding that they are trying to work with you as you are trying to work with them. Your tone will help patients to trust and connect with you.
When dealing with a newer or older patient, try to understand that there’s a lot going through their minds. They may have other issues going on that have nothing to do with their health. Try to understand that they need your help beyond just medications and dosages. Try to connect and understand how your patient is feeling—this will ensure that things go smoothly for all involved.
As you are dealing with your patient try to be transparent and explain the changes you may be making to their care. Try to be as honest as possible even if it is not news they want to hear. There’s nothing worse than being in the dark about your care. For difficult patients, maybe ask a nurse or social worker to be present. These patients are trusting you to make their lives easier, happier and healthier. This will not happen unless you and your patient are open with each other.
I find some residents to be nervous with patients: that’s ok—you are human too! The key to all these tips is to be open. Tell them they can trust you and that you will do everything in your power to help them and make them comfortable. Honesty cannot come from just the nurse. Your patient needs to feel you are being 100% open with them so that they can trust you.
People with a terminal illness often need to be admitted to hospital. For me this is normal. Every few months I need IV antibiotics and monitoring by medical professionals. I would like to take you through the first day of a typical 1-2 week stay in hospital for someone with cystic fibrosis.
The admission process
A few years ago it was decided that cystic fibrosis (CF) patients must be in isolation for 72 hours because we normally come in with cough and fever. This is for our own safety. So the nurses, doctors and any visitors have to wear a gown, mask and gloves. I am now used to being a germ.
The first of several days at the hospital normally starts with a nurse accessing my port-a-cath – a device located under the skin that’s attached to my jugular vein – so that I can be hooked up to IV fluids while waiting for antibiotics. The nurses will then go through the admission process. They check my weight and vital signs, ask a lot of health and home related questions, and go through my medications list so I can receive them while in hospital. This normally takes about 30 minutes.
By this time the resident physician following my case will come up and ask me the same questions. Keep in mind they are still learning and have to ask a boat load of questions! This can sometimes be annoying but it’s all part of the admission process. The doctor then completes a physical examination of my body: he or she listens to my lungs, feels my abdomen, looks into my nose for sinus infections, and checks my glands and ankles to see if there is swelling. Finally, they write the orders and decide who should see me from the CF team.
The joys of breathing and feeding
After all the orders are put in I can have a little nap before the meds come up and I’m hooked up to my first antibiotic. Depending on what my o2 sat (oxygen level) is, I would normally be put on oxygen just to help me breathe a little easier. I don’t mind. It’s nice to have a little help breathing. Sometimes if I’m sick enough my body aches so I am offered pain meds to help me rest easier. The dosages always depend on where my weight is at.
When I’m sick I don’t have that much energy so I sleep a lot. Sometimes I even miss meals so the nurses will hook up the feeding tube located in my stomach. I call it my mickey peg. This tube is literally my best friend on days when I don’t have the energy to eat.
By evening I have to get up to do my nighttime treatments. The respiratory therapist is usually first. They come in and hook up my nebulizer, which is a mask that blows out a medicated mist to help break up the mucus so I can cough out that icky junk. This treatment normally lasts 10-12 minutes. Following this, the nighttime nurses come in and check my vital signs. Depending on the numbers they might give me some oxygen or Tylenol to bring down the fever. With cystic fibrosis, having a fever is normal.
With the right team of caregivers…
By 10 p.m. I am all ready for bed. I am hooked up to my feeding tube, my IV meds are running and I have all my nighttime pills. The nurse will come in to make sure I have everything I need—they always make sure my bell is by the bed in case I need anything during the night.
The nurses are great at helping me stay comfortable and giving me what I need to rest. The nights are difficult with CF. Personally that’s when all my coughing starts. Sometimes it gets so bad that I start to feel nauseous so the nurses will ask the doctor for some Gravol. This helps my stomach especially when I am getting tube feeds.
I have spent so much time in hospital that the nurses are like friends. I know them all by name and I feel comfortable asking for anything and explaining my symptoms even when they are not so glamorous. The doctors and residents are very supportive as well. They make sure that everything I need is ordered in the chart…and because I am there so much they always check if I am comfortable with the orders and choices they’ve made.
Being in hospital is not easy, but with the right team of caregivers I always receive the best care.
My name is Kelsey Lett and I am 23 years old. From a young age I was always sick. My parents didn’t know why I was such a fussy, cranky baby. Finally my family doctor ordered some tests to see why I was malnourished and coughing so much. After 2 years of testing, a sweat test revealed that I had cystic fibrosis.
For those who don’t know, cystic fibrosis (CF) is a genetic disease that affects the lungs and digestive system. It causes thick mucus to stick to my lungs and makes it easy for bacteria to grow there. Inside the pancreas, thick mucus blocks the ducts which usually transport critical enzymes to the intestines to digest food. The body cannot absorb and metabolize nutrients properly, especially fats. People with CF can quickly become emptied of salts, which leads to fatigue, weakness, fever, muscle cramps, stomach pain, vomiting, dehydration, and heatstroke.
I am more than my illness
Despite knowing all this about me, I want you to remember that I am not my illness. As much as I try to not let it define me though, cystic fibrosis is still a huge part of my story. I’ve had over 30 surgeries since the age of 2. I’ve learned to deal with death more than the average young adult. I’ve also met a lot of great and not so great people in our health care system.
Being an adult with CF is very different than being a child with CF. You have more responsibilities. You are forced to grow up. For example, I became eligible for hospital services (e.g. receiving IV meds) in my home after I turned 18. As I received home care more often, I started to educate myself about the services that were offered. This is where the Champlain Community Care Access Centre (CCAC) comes in.
It’s about shifting the culture
Last year I joined the Champlain CCAC’s Patient and Caregiver Council because I wanted to help improve everyone’s home care experience. I was also recently offered an amazing opportunity to become the organization’s first Patient Engagement Advisor. At 23 years old, I already have so much knowledge about the health care system and how it runs. I feel that Champlain CCAC staff really listen to what I have to say and we have been working together to improve services for patients and families.
Over the coming months, I look forward to sharing my stories and thoughts on how to make the health system more patient-centered with you, readers of the Champlain Primary Care Digest. Stay tuned!