New Lungs, Hepatitis, and Warranty Work: My First Lungiversary

I once told a friend that my two biggest fears were a lung transplant and snakes. At least now I only have to worry about the snakes.

A year ago today I was in a hospital five hours from home and my health was the worst it had ever been. I had been in the hospital for about two and a half months and I was tired. I required supplemental oxygen 24/7 and other things, like my stomach, were not working properly anymore.

That morning, exactly one year ago, my doctor and transplant coordinator came into my room and told my dad and I that they had found a set of lungs that would fit my small frame, something we were told would be difficult. However, there was a catch. The donor was positive for Hepatitis C so if I accepted the lungs I would most certainly contract the Hepatitis. My doctor and coordinator assured us that while this was a very new practice, a new drug capable of curing Hepatitis C would be used to treat me as soon as the virus was detected in my blood. They had consulted with another hospital that had started performing these types of transplants and the transplant infectious disease specialists were confident that they could clear the Hepatitis from my system.

I had half an hour to decide if I wanted to accept the lungs and if I did, I would be going into surgery at 4:30pm that day.

I say that I had to decide, but this was not a choice. Choosing between suffocating to death with sick lungs and receiving an organ transplant with all the risks and complications that can come along with that is not a choice. Not one that a person should have to make at the age of 23 or ever in their lifetime. I knew what I had to do but one part of my brain was screaming at me, asking why I’d agree to the one thing I’d been afraid of my my whole life: having my chest opened up, my ribs pulled back, and my lungs taken out so they could be replaced with the lungs of some unknown person who lost their life too soon; not having control over the outcome; having to endure the pain and frustration of recovery; and having to relearn everything I used to know about my health. The fear and anxiety were overwhelming. How could this be my reality?

I said yes to the lungs and the Hepatitis C.

It’s surprising, looking back, how much of the pain and anxiety surrounding the experience that I’ve been able to forget about. I guess humans are funny that way – able to forget and move on. And I guess it’s true that physical pain really can be temporary. Some of the mental effects still remain because even though it has been a year, a transplant and all the good and bad that comes with it is hard to process. But I’ll get there in time.

I’ve since been cured of the Hepatitis C just as the doctors promised. I was the first person to receive a double lung transplant from a Hep C positive donor in Edmonton, AB, and one of the first in the world. This will change so much in the world of transplants as organs from donors that are positive for Hep C will no longer be turned away and will instead go on to save many more lives.

Besides the Hepatitis C, I’ve had many other complications, some small and some big. It’s frustrating and sometimes I wonder if I’ll ever catch a break.  I wonder why I had to go through all of this bullshit. I think about all the stress and worrying the people who love me have had to endure because of my health. And I get angry. Actually, I get pissed off. And while I am extremely grateful to my donor and my doctors, I think it’s okay and healthy to get angry sometimes. It’s okay to acknowledge that none of this is fair and that it’s been hard.

So I let myself get angry but then I do my best to think of all the good.

The support my family and I received from our family, friends, and community was overwhelming in the best way. So many people stepped up to help during one of the hardest and most tiring times in our life. I will try to carry this forward by being kind and generous whenever possible.

Even though I’ve been dealing with transplant complications – or ‘warranty work’ as my doctors call it – for most of this year, I’ve still enjoyed the benefits of being able to breathe again. I’ve noticed a big difference in small things that a lot of people probably take for granted. Let me tell you, it is so much easier to clean your car off in the winter when you can breathe and aren’t attached to oxygen. I can walk through airports with luggage without having to stop to catch my breath and I don’t develop a pounding headache from lack of oxygen by the time I reach my gate. I don’t have to spend two hours in the morning and evening doing therapy and inhaling antibiotics. My days are drastically different now that I can breathe again.

The biggest thing I’ve been able to do since transplant was plan my wedding and get married. I was able to walk down the aisle without oxygen and enjoy the whole experience without getting headaches or becoming low on energy. I was able to keep up with everyone else for the first time in a long time. This was a dream that seemed extremely far off for so long but transplant made it possible.

The amount of independence I gained after transplant was something I had been yearning for. My husband and I had been in a long distance relationship but after the wedding we were able to move into an apartment and start our lives together. I no longer spend hours a day doing looking after my health. I no longer have to rely on my husband to carry groceries for me. I don’t have to pull an oxygen tank around with me, constantly worrying about how much oxygen I have left. I don’t have to ask my friends to wait while I stop and catch my breath. I feel more like myself and less like the person trapped in a sick body that I was before transplant.

Transplant is not a magic fix and even though I’ve had to overcome some complications from it, I’m still incredibly grateful for this year and the ability to breathe again. Transplant has opened up so many more opportunities for me and my future is not as uncertain as it once was. Here’s to many more years of stable health! I hope that I can fully embrace this gift and remember that life is precious. I know this better than most. I hope to be able to pass that message on to other people through my story and encourage them to do things they love and spend time with people that have a positive impact on their lives because that’s what really matters. Life is too short to spend it being unhappy.

So cheers to you and your happiness and happy first lungiversary to me! In honour of my donor, go do something you enjoy today! I’ll be doing the same.


An Open Letter to My Premier on Healthcare

Mr. Wall,

My name is Cassandra Bumpus. I was born and raised in Saskatchewan and diagnosed with Cystic Fibrosis as an infant. Cystic Fibrosis (CF) is a fatal genetic disease that primarily affects the lungs and pancreas. There is no cure. 

Since my diagnosis, I have spent a large portion of my 24 years of life either in hospital or dealing with the healthcare system in one way or another. Due to these many years of experience, I feel I have some authority to comment on the current state of our healthcare system. I would also like to note that the majority of the dealings I’ve had have been with the Royal University Hospital in Saskatoon. That is, when I could receive the care I needed there without having to travel out of province for it. 

First, I’d like to give you a bit of background information. There are currently two pediatric CF clinics in the province – one in Regina and one in Saskatoon. There is only one adult CF clinic in the province, meaning all 70 adults living with CF must travel to Saskatoon on a regular basis to see the CF specialist and clinic team.

Below, I have outlined only a small sample of some of the more recent issues I have come across in my frequent dealings with our healthcare system.

  1. Over the past twenty years there have been only miniscule improvements to the hospital food. This should be a concern for a few reasons. One, for patients that need to be gaining weight, such as myself, it is very difficult to do this when the food on your hospital tray arrives soggy, lukewarm, and bland. You are then forced to purchase food from the cafeteria which becomes costly over time or you must ask your friends and loved ones to bring food for you when they come to visit. Second, on countless occasions I witnessed nurses looking after and trying to soothe sick and scared children. On top of that already difficult task, it also became the nurse’s job to try and persuade the children to eat the unappetizing items that arrived on their meal tray. This problem and the accompanying stresses could be easily avoided with improvements to the food served to inpatients.
  2. Paying for parking at a hospital is an utterly stupid concept. I have a genetic condition which means I have no choice but to go to the hospital for appointments, medical imaging, blood tests, etc. Why should I be charged to park there when it is not my choice to be there in the first place? It is incomprehensible to me that we would charge parking fees for people coming to visit ill or dying loved ones. Why do we need to add financial stress to their burdens? Is our healthcare system really so desperate for cash that we’ll steal it out of the pockets of our emotionally distressed residents?
  3. When I transitioned from the pediatric CF clinic to the adult clinic, there were two doctors running the clinic. Neither of these doctors running the clinic were specifically trained in CF care and to be frank, I know I would have received better care somewhere else. If my current specialist had not decided to practice here, I would be driving five hours to Edmonton every 4 months to attend their CF clinic. This is unacceptable and just one example of questionable and ineffective staffing. Where are the checks and balances to see if residents requiring specialists are actually getting the quality of care they are entitled to in 2017? 
  4. The emergency room at the Royal University Hospital in Saskatoon is overcrowded, understaffed, too small, and the wait times are truly shocking. This month (June 2017) I spent nine hours waiting to get a final word from the ER doctor about the issue I had come in for. On more than one occasion, I have spent two to three nights sleeping on a stretcher in the ER, sharing a bathroom with many other patients, while waiting for a bed on a ward to open up. I have heard an elderly woman in the stretcher next to me, speaking with the nurse about how she was extremely tired but could not sleep because of how hard the stretcher was on her back. Later, she was crying and telling the doctor she wanted to go home so she could sleep. Is this acceptable?
  5. The RUH inpatient wards are overcrowded. This month (June 2017) I walked past a two-bed room and happened to glance in. There was a patient in each of the two beds with curtains drawn around each, and there was an elderly gentleman lying in a bed pushed up against the wall at the back of the room near the entrance to the bathroom, thus making it a “three-bed” room. This gentleman had no curtains for privacy, no nightstand, no bedside table. While I was waiting in the ER for a room, a nurse mentioned to me that I may be placed in what she referred to as a “pod.” I questioned her and she explained that this is a cluster of beds put together and that extra staff were then scheduled to look after the patients in the pod. Where this pod would be located, I did not want to ask.
  6. The inpatient wards are understaffed and crowded and this leads to nurses making mistakes. I cannot rest and recover in the hospital because I am always on alert, watching my medications and what the nurses are doing. They have brought me incorrect doses of important medications. They have neglected to properly take care of my implanted port through which I receive intravenous antibiotics. I have to remind them that the line needs to be locked with 5 ml of heparin and not just saline. Last night (June 24, 2017), I did not receive any of my nightly medications until 10:30pm, which because of how they are scheduled, meant that I could not go to bed until midnight. That’s not a great bedtime for someone trying to regain their health in a hospital. The excuse the nurse gave was that they had had an admission to their ward that had to be dealt with – paperwork done, medications ordered, etc. Clearly more staff is necessary.
  7. In our province, many children have gastrostomy tubes for various reasons that help improve their nutrition and assist them in maintaining their weight. Now, more and more adult CF patients are having these gastrostomy tubes placed for the same reasons. However, there is only one nurse who handles the education and care of these tubes for all pediatric patients and she is only part time. There is no one to look after the adults who have these tubes so they are forced to contact her and she does her best to make the time to see them.
  8. My current CF specialist takes care of all the 70 adult CF patients in the province out of the clinic at RUH. After the two previous doctors left the clinic, he has taken on all of the adult patients by himself and sadly, he is only ¾ time. Inevitably, rather than spending the money to hire another qualified CF specialist, we will work him until the point of burn-out and then we will lose him too. And myself, and many others, will be faced with the prospect of driving out of province multiple times a year for appointments.
  9. This month (June 2017), I was placed in a private bedroom at RUH. I informed my nurse that, when flushed, the toilet in my washroom would bubble up and spray the dirty water onto the seat and walls surrounding. She brought me disposable pads to place over the toilet when I flush it (it has no lid), because, as she said, “it would probably take forever to get maintenance up here to fix it.”
  10. According to my research, it costs approximately $8000 for an average hospital stay in a bed at RUH. I have been in the hospital for two weeks now, with one of those weeks spent entirely on waiting for a CT guided biopsy to be done. If we optimized the use of our medical imaging department and the staffing of it, would that not save us money in the long run? I would not still be sitting in the hospital, waiting, using up valuable taxpayer dollars.

Changes need to be made. So that patients receive the quality and timely care they are entitled to. So that Saskatchewan can retain medical professionals with competitive pay and access to the latest in medical technology and research. Changes have to be made starting in 2017. Starting with you, Mr. Wall.