This year I’ll be taking part in the Walk to Make Cystic Fibrosis History on May 31st.
Those that are close to me know this reaches close to home – we as a family know a lot about Cystic Fibrosis as I was diagnosed at birth.
When I was born information about C.F. was fairly limited. Sadly the life expectancy was only 16 years old. Fundraising like this has helped scientists to research and improve the lives of those living with Cystic Fibrosis.
There are now new drugs on the market that edit some CF mutations improving breathing functions and increase weight gain. I was 16 years old and in end stage C.F in 2002, without my life saving double lung transplant I would not be here today.
With the research that’s been possible because of fundraising we are now seeing young CFers become adults bringing the life expectancy in Canada to 52.3 years old.
Your donation of any amount will be a huge help. If you cannot donate please pass on the link to anyone that can, every amount will be greatly appreciated!
Let’s walk together and make Cystic Fibrosis history!
Thank You Dan Pfaff – a C.F. warrior
My views living as an immunocompromised individual towards COVID-19.
“And those who were seen dancing were thought to be insane by those who could not hear the music.”
I try to live as much of a “normal life” as I can, however define “normal”. Normal is an illusion we as a society have created to filter out the odd or different and pinned to a word. In this case to a group of people that fall under the general population and believe their standard actions of day to day routines are acceptable without judgment, they obtain common sense, and settle for an average regular run of the mill, simple homely lifestyle.
We’ve done a poor job at filtering out these people.
“As what is normal for the spider is chaos for the fly.”
The spider in this case represents the majority of healthy individuals and the fly are the individuals that live with an invisible disability, immunocompromised, the elderly, someone living with a health complication, “the ill”.
But in a case with Corona-19 raging through our country, I’ve put myself into total isolation since I was released from the hospital earlier this year. I can’t take a chance of being infected with this virus as the damage could and probably will do is kill me. In the past I have been very susceptible to viruses and had my fair share, more than once: Avian Influenza (H5N1), Swine flu (H1N1), Influenza A and B, all causing severe damage to my lungs- I can no longer afford.
In fact I am still trying to recover from my last few hospital admissions and they were almost three months ago. This isn’t how I imagined living my life- did any of us? I need these precautions, I didn’t go through two double lung transplants, complicated by the fear of some irresponsible individual spreading a virus that could be harmless to themselves, while lifetaking to myself. So at this time I am living in total isolation.
I first heard about SARs COV2 in the beginning of December 2019, as I was in the hospital with a lung infection. After coming across this article I warned my mom and friends that this virus would turn into something huge. It did take some time for the world to experience what was at China’s front door; we have become neighbours in battling and containing COVID-19.
Living as the “Fly” it is easy to be dismissed as a group of people you don’t know much about nor are visually not recognizable. I have been immunocompromised all my life due to living with cystic fibrosis (CF). This became more serious after my first lung transplant in March 2002, because of my disease my lungs lost their ability to function so much so that I had to depend on someone else’s life to end for mine to continue and begin all over again. But living with Cystic Fibrosis Related Diabetes (CFRD) also causes an immunocompromised issue. Making me a “HIGH RISK” person.
DIFFERENCE OF COVID-19 AND CORONAVIRUS
You have probably heard Coronavirus, SARs COV2 and COVID-19 used a lot lately and are wonder if they are the same thing, what’s the differences and where did they get the names from. So let’s clear this up.
Coronaviruses contain different strains of viruses, such as COVID-19, the common cold, SARs and MERs. When visioning Coronaviruses under a microscope they look like little crown like spikes on their surface. This is also where the Coronavirus gets its name from the Latin corona, meaning “crown” or “wreath”, also The Sun’s Corona, “A Fiery Halo”. When looking at the coronavirus you will see what looks like a fiery halo covered in these frown spike like pins.
The virus called SARs COV2; however, once it enters a human it is called COVID-19. The virus causes more symptoms and has more tricks up its sleeve making it harder to fight off, with it’s different genetics and properties signs of what we’re going to be looking for if you’ve been incontact or been infected with are:
-High temperature: average body temp is 36.5C-37C temperature should be checked if hot on forehead, chest or upper back area.
–Flu like symptoms: sore throat, coughing and fatigue.
–Shortness of breath
Some may also experience
-Aches and pain
If experiencing these symptoms you should self isolate and contact your doctor, failing that call the designated helpline for your area regarding COVID-19 screening. It is also recommended to wear a facemask if experiencing symptoms.
Please avoid just showing up at hospital emergencies unless instructed as the hospitals are becoming overpopulated. There are still other health issues happening, heart attacks, strokes, babies. Unless you hare having issues with; mental health, breathing and heart issues, can’t hold down any food or water, increase in sleeplessness, heart attack like signs or any extreme health issues try to refrain from going.
BACTERIA VS VIRUSES
Bacteria is a living organism that has its own self contained system for eating and using up energy, they’re a lot like human life forms. They are microscopic, and as long as food and water are available, can replicate by themselves. It’s -single celled, and can be found everywhere. They can be dangerous, such as when they cause infection, or beneficial, as in the process of fermentation (beer and wine) and that of decomposition. Examples of bacterias include: E Coli, Dysentery/ The Runs, Hemolytic syndrome, TB, and Pneumonia.
Viruses are much smaller than bacteria and aren’t considered, by most scientists, to be a living organism because they don’t make their own energy, a virus isn’t able to replicate without a host. Viruses go into living cells to make more viruses. Think of them as tiny little machines that exist to do one thing, that is too hijacking a host. They can infect all types of life forms, from animals and plants to micro-organisms, including bacteria and archaea. Both bacteria and viruses can survive on surfaces, but as long as there are nutrients for the bacteria to live off of they will live longer. Some viruses can live on surfaces longer than others.
WHAT WOULD HAPPEN IN THE LIKELIHOOD I GET COVID-19
In my case right now if I contacted COVID-19, I would become the one in six people who get COVID-19 that become seriously ill and develop difficulty breathing and likely would die. Patients that are affected by the virus can drop/lose up to 20-30% of their lung function, I currently don’t even have 20-30% lung function on a good day.
There is a lot more at stake for transplant patients like myself. People don’t always understand that what gives the sniffles to them, could potentially kill me. Living with a transplant is always about keeping a balance between rejection and infection. I need to take enough of my medication to prevent organ rejection. But I can’t take too much of this medication because that would leave a higher risk of getting infections. If you looked at me during these 18 years you would have no idea I am still immunocompromised. Leaving me open to higher risk of infections, in fact I’ve contacted my fair share of viruses crossing from H1N1, H5N1 and multiple times of Influenza A & B never fully recovering each time. During each of my transplants there have also been outbreaks of SARs (2002), and my second transplant during swine flu (2009-2010). Making me well aware of the stakes that these viruses pose to high risk people.
Immunocompromised individuals are people that have gone through battles with their health issues and continue to do so, these people have survived. These people consist of transplant recipients, cancer patients, autoimmune diseases, HIV and more. We are all not hidden away in our homes and hospitals despite popular beliefs, we go to battle against these diseases and continue to every day. For this reason, we try to live everyday lives and enjoy what we have left and live more at ease. Many of us work, go to school, and have families, errands to run, work to be on time for, educational goals to pursue and life events to attend just like anyone else. Our body defenses are always on the prowl for germs and other foreign organisms, leaving us always on the alert for someone near or far, sneezing/coughing or even touching/brushing up on surfaces. Everyday I pay further attention to where germs live avoiding potential infections or viruses as if my life depends on it; because it actually does actually does though. Living with cystic fibrosis, CFRD and being a lung transplant recipient these kinds of attacks from bacteria, or viruses usually mean spending more than my share of my life inside a hospital. Never recovering back to the same baseline.
One difficulty of COVID-19 is it’s carriers can be asymptomatic as well as symptomatic, making it difficult to be contained and bringing the importance of the recommended volunteer self isolation.
Asymptomatic infection: Which means that the person can have the ‘germ’ in their body, but they don’t have any symptoms or they have very mild symptoms and don’t present as ill. The particular “germ” can be transmitted by coughing or sneezing, for example, and the person may transmit the infection to someone else without knowing it and without having any symptoms themselves.
Symptomatic infections: The subject becomes symptomatic; in other words, feeling the symptoms which can also be transmitted from person to person. As for viruses that cause colds, people can in fact transmit these viruses with mild or minimal symptoms themselves. In this case, they’re considered asymptomatic carriers still. They usually don’t have the virus in their system for a prolonged period of time, though.
COVID-19 is spread from respiratory droplets, eg: liquid that comes out of your lungs, and something that you may not necessarily see. It’s spread through coughing, sneezing and talking out loud. As these particles spread out and land on surfaces, getting picked up by others in close contact, up to 6’ radius can be infected due to these respiratory droplets, which is why it’s really vital to keep cleaning surfaces and hands where people are coughing, sneezing and brushing up, as people can be asystematic from the virus not knowing what they are spreading.
I’ve been told that most store locations have been sold out of hand sanitizer and Lysol wipes but there has been plenty of soap and spray Lysol cans left. Please keep in mind that hand sanitizer will clean your hands but soap is more effective against COVID-19 than hand sanitizer. Hand sanitizer is just more convenient as you can take it with you making it more portable where running water and soap is not accessible and that Lysol in a spray bottle is just as effective as the wipes. Although Antibacterial wipes will kill most bacterial cells and some viruses living on surfaces. COVID-19 cells scream and cry when it comes to soap or high percentage rates of alcohol higher than 70%. NO your typical drinking alcohol is NOT strong enough to kill viruses/bacteria, the alcohol percentage count needs to be at least or higher than 70%. As well, antibacterial wipes, Lysol and soap will kill surfaces with COVID-19, but some viruses can live against antibacterial wipes that have some sort of antibiotic properties that will only work on bacterial surfaces and not viruses. So stick to the Lysol and Soap when cleaning.
Please remember to wash hands for 20 seconds more often than you normally would, whenever you’re in and out of your home/ clean high touch surface areas, keyboard, phone, remote controls, and try to prevent touching your face.
HOW I DEAL WITH “GERMS” AND “THE PUBLIC”
I’ve learned to second guess everything and need to act as if nothing in the public is clean, if it helps imagine that everything is covered with “shit”, which is how I think it. After receiving a lung transplant at the age of 16 in 2002, I’ve always needed to take in hand extra precautions to prevent getting sick. As to the everyday public I look like a “normal” individual or you can look at it as an invisible illness.
I avoid large gatherings and learn to shop or go out during off peak times, when it is less crowded and gives myself more space to breathe freely. If I can, I try to avoid public transit and if I must take it, clothing becomes my skin, I use my sleeves in the summer and gloves in the winter to hold onto anything that could possibly be a feeding ground for germs. I try to sit or stand near a vent or opened windows allowing air movement, but mostly I will drive myself or take an uber avoiding close contact with unknown crowds. While flying I travel with a mask, wipe down my area and keep my hands in my pockets to prevent me from touching anything in public as well my face. But mostly I try to avoid those situations as much as possible. I wash my hands all the time, as well as when posible am very particular where I eat and when possible watch when my food is being prepared. I try to spend limited interaction with toddlers/ kids as they are huge carriers for spreading germs. Kids are like drunk frat party buses full of college spring breakers but instead of drunk they’re covered in germs. Yeah no thank you, keep those runny noses, goopy eyes, airborne sneezes/ coughs away no matter how cute you may think your child is, they’re a breeding ground for some kind of infection/virus to me. I chose my life over a playdate. Hand washing becomes a thing as if it’s cool, don’t forget your thumbs. And if not hand sanitizer is your sidekick. You learn to act as if every day is the cold/ flu season when out in public.
Think of it this way, how most of you are feeling or fearing from COVID-19 is an everyday life for me due to living with CF and being an organ recipient.
As of March, 11. 2020 the WHO announced a pandemic against SARs COV2/ COVID-19
DIFFERENCE BETWEEN PANDEMIC, EPIDEMIC AND OUTBREAK
Small, but unusual. By tracking diseases over time and geography, epidemiologists learn to predict how many cases of an illness should normally happen within a defined period of time, place and population. An outbreak is a noticeable, often small, increase over the expected number of cases. Imagine an unusual spike in the number of children with diarrhea at a daycare. One or two sick kids might be normal in a typical week, but if 15 children in a daycare come down with diarrhea all at once, that is an outbreak. When a new disease emerges, outbreaks are more noticeable since the anticipated number of illnesses caused by that disease was zero. An example is the cluster of pneumonia cases that sprung up unexpectedly among market-goers in Wuhan, China. Public health officials now know the spike in pneumonia cases there constituted an outbreak of a new type of coronavirus, now named SARS-CoV-2. As soon as local health authorities detect an outbreak, they start an investigation to determine exactly who is affected and how many have the disease. They use that information to figure out how best to contain the outbreak and prevent additional illness.
Bigger and spreading. An epidemic is an outbreak over a larger geographic area. When people in places outside of Wuhan began testing positive for infection with SARS-CoV-2 (which causes the disease known as COVID-19), epidemiologists knew the outbreak was spreading, a likely sign that containment efforts were insufficient or came too late. This was not unexpected, given that no treatment or vaccine is yet available. But widespread cases of COVID-19 across China meant that the Wuhan outbreak had grown to an epidemic.
International and out of control in the most classical sense, once an epidemic spreads to multiple countries or regions of the world, it is considered a pandemic. However, some epidemiologists classify a situation as a pandemic only once the disease is sustained in some of the newly affected regions through local transmission.
To illustrate, a sick traveler with COVID-19 who returns to the U.S. from China doesn’t make a pandemic, but once they infect a few family members or friends, there’s some debate. If new local outbreaks ensue, epidemiologists will agree that efforts to control global spread have failed and refer to the emerging situation as a pandemic.
HOW CONTAGIOUS IS COVID-19
A contagious rate is based off of something called a R0 pronounced (R-nought) rating. When a new disease emerges, health organizations turn to a number to gauge whether the outbreak will spread. It’s called the basic reproduction number. R0, and through useful for decision makers, it’s a nightmare for public communication. In brief, R0 is the average number of people who will catch the disease from a single infected person, in a population that’s never seen the disease before. If R0 is 3, then on average every case will create three new cases. But even though it seems incredibly straightforward, it’s hard to calculate and tricky to interpret.
R0 is important because if it’s greater than 1, the infection will probably keep spreading, and if it’s less than 1, the outbreak will likely peter out. So it offers vital information to organizations and nations as they consider how to respond to an outbreak, such as the one the world is currently experiencing.
On average COVID-19 has a R0 of 1.4-4.8 when not in isolation. Meaning that 1.4-4.8 people will be infected when in contact, SARs in 2002-2003 had a R0 of 1-272. Whereas something like Measles has a R0 of 12-18. The difference of SARs was that symptoms were quicker to develop (2-7 days), whereas COVID-19 symptoms can take up to at least 5-10 days to see or feel any symptoms. That’s why it is asked to self isolate when traveling across borders or if you come in contact with someone that is infected.
At this time we don’t know when the slowdown of contamination COVID-19 will be as SARs eventually slowed down. A Good job of containing this outbreak is going to look like we overreacted. Because the situation didn’t get too bad, one way of containing this outbreak is “contact tracing” to see how and where someone has been or interacted with if it is found out they’ve been infected with COVID-19. It helps to monitor as well contact people that would have been in close proximity and make it a possibility to warn those to look out for symptoms and to self isolate. This method is used with measles, STIs and more. It’s important to move fast as it’s important to stay on top of people that are infected and have others tested. Travel bans are good and bad at the same time, they are good as they prevent people from bringing in the virus but there are still going to be people that will slip out and lie about it if question making “contact tracing” failing to inform others.
It is important to be educated about the virus, allowing people to know how the virus is spread, what are the symptoms and how to avoid/ prevent contamination.
No, a flu shot is not going to save you from getting COVID-19 because they are only for an estimated strain of influenza vaccines designed for very specific strains of viruses.
It is also important to know that vaccines and antibiotics are very different. Where antibiotics work towards fighting off bacteria only. But don’t think a flu shot is useless in this time of COVID-19. It’s important for flu shot as it is less likely to get the flu making it easier to filter out the flu over COVID-19.
A COVID-19 “Vaccine” is not available at this time and will take time for production, dispencement and test to see if it’s safe in humans. So it is important we do everything possible at containing COVID-19. As there has been more community cross contamination of the virus in the US.
More people have gotten the virus in the US than from overseas contact, also currently more people have gotten the virus from traveling to Egypt and Italy then traveling to China and South Korea combined all based on documented cases.
Resulting in higher spike numbers of contamination and a higher curve on the charts.
You probably keep hearing we need to “Flattening the curve” and this is so true. It is so important if we want to contain this virus as “flattening the curve” will help slow down the access to the health care system, it’s the difference between a mob entering or a few people entering a building at once. We can’t overcrowd our health care centers or workers as they only can manage so many people at once and have limited equipment that is accessible. These health centers still need to attend to other health issues that need to be taken care of.
THINK ABOUT OTHERS
Take time to think about all the people that will be harder hit from COVID-19 due to not social distancing/self isolating. If you can work from home and still get paid, do so. Also think about your community, as schools close, kids’ food programs shutting down become hungry/ donate to food banks, don’t forget that the blood banks still need blood so if you’re healthy donate. If you’re young and healthy see if there are “at risk people” in your neighbourhood that could use help ie: getting groceries, drugs, running small errands. So they don’t have the risk of going out and becoming infected.
You no longer are required to provide a doctor’s note if you are sick. We need people to self isolate in order to help flatten the curve. In the last week the protocols have increased rapidly. All restaurants, bars, cinemas, tourist attractions, concerts, day cares, have closed. Coffee shops are only for pick-up, grocery stores are allowing on-line shopping and drive through pick-up. Senior shopping hours are being offered to reduce the risk of close contact.
We all have to be vigilant– there is no time to waste. The news sadly has reported that several seniors and long care homes have cases of COVID-19. As much as you love your aged parents, visits are now dangerous. Face-timing, outside window encounters should now be the new for of communication. Although this will cause stress and unhappiness, we need to focus on the short term in order to appreciate the long term results.
Around 1.4 million people who are most at risk from coronavirus will be told to ‘stop all social contact’ from Monday (March, 23.2020) in the US. Mr. Hancock said people including cancer patients and severe asthma sufferers should “take themselves away from all social contact from Monday onwards for 12 weeks”. At present, anyone with an underlying health condition such as those who usually receive an NHS flu jab, people with weakened immune systems and anyone over 70 is told to be “particularly stringent in following social distancing measures”. The group includes those with particular underlying health conditions, who are most vulnerable to getting complications from Covid-19, and is not defined by age.
-People with cancer who are undergoing active chemotherapy or radiotherapy
-People with cancers of the blood or bone marrow such as leukaemia who are at any stage of treatment
-People with severe chest conditions such as cystic fibrosis or severe asthma (requiring hospital admissions or courses of steroid tablets)
-People with severe diseases of body systems, such as severe kidney disease (dialysis)
-People who have received an organ transplant and remain on ongoing immunosuppression medication.
The request in some countries and mandatory self distancing/ isolation isn’t just for your safety and health it’s also for the high risk group. If we don’t comply with social distancing/ Isolating, the longer we’re going to have to keep practicing this. It may be a request for some, but for others it is a necessity for survival.
Quite a few people that are immune suppressed are on a fixed income and can’t afford a doomsday shopping, or the energy. These are the individuals that need to be reached out to. Call them, shop for them, make some meals, we will get through this keeping kindness in mind. This is a time to not panic but be considerate. While shopping take only what you need, think of others, I have no idea where all the toilet paper has gone. Call your family and friends, check up on them. We are all in this together
Naturally people are feeling anxious and fearful. Covid-19 has totally rearranged our world. We are now in unchartered country and it can be terrifying. Thousands have been laid-off, business’ have closed, financial fears have escalated especially with the critical drop in the stock market.
As most have been asked to self isolate loneliness will begin to set in as self isolation can feel that way. The virus may be a global threat but keep in mind majority people won’t be seriously threatened.
Some will even feel the effects of “Ruminating” while being isolated. We need to learn how to function in a new un-normal. To combat this; turn off push notifications from news sites, limit the amount of news listened to, watched or read. If causing a negative effect pick a couple times a day to be updated on what you may need to know regarding the virus. Studies show that people feel best in the morning and then gradually taper off through the day. Consider making it a breakfast time routine to follow up on.
Go “outside” meaning low density population areas eg: your own yard, hiking trails that have little to no traffic, low risk areas to spread and transmit the virus. Remember to wash your hands when getting home, even a shower won’t hurt.
At the moment we need to self isolate from everyone outside of our family that we live with. No play dates, no coffee moments, no get together with friends. We need to be vigilant otherwise the consequences will be catastrophic. It is important that you don’t cut yourself off entirely, we’re in the era of technology, use it to your advantage: face timing, skype, have a virtual group game night. Try to focusing on small positive thoughts, keeping a healthy mental state in times like these are crucial, take care of yourself and practice positive personal care during these times.
HOW I FEEL ABOUT COVID-19
For the past few months I have been watching, feeling fearful yet telling myself to keep calm, as those tiny red dots on the map of the world cases began to multiply, getting bigger and covering more ground.
It has caused more concern in my life, as well making difficulty due to the need to halt most hospital/tests appointments for my transplant assessment. There is also fear, I can’t afford contacting this virus. My current health is already difficult to deal with at this time. There is no more room for me to jeopardize with my lung function. As I said before because of my disease my lungs lost their ability to function so much so that I had to depend on someone else’s life to end for mine to continue and begin all over again not once but twice, I’ve never wanted to put these gifts I’ve received to waste. Living in a bubble lifestyle is very self limiting. Undergoing a transplant meant avoiding the need to live a life in a “sterile bubble” to stay healthy.
I can take the precautions public health officials are advising, I listen to what health care providers are saying about how to avoid exposure to COVID-19. I can’t always avoid other people naive/irresponsible, complete disregard for others, or lack of proper hygiene. Some may think I’m being over dramatic because I may be young but I am not considered healthy. Besides maybe keeping hand sanitizer near or remembering a yearly flu shot, you probably move through life without much alarm that you’re surrounded by germs all the time. You have the peace of mind of knowing that your immune system will help keep you healthy or at least protect from getting too sick. Not myself nor the high risk people, infact how the general public fears COVID-19 is how a CF/ transplant patent, and “high risk” feels everyday.
Just to make this point clear in case people haven’t realized it yet. The longer we don’t comply with social distancing/ Isolating the longer we’re going to have to keep practicing this. It may be a request for some, but for others it is a necessity for survival. What most of you are experiencing with the fear of COVID-19 is my everyday life, the extra planning and thinking how to complete your day without being in contact with germs. It can be difficult and mentally challenging, and fearful. But we also need to live our lives so be smart, take precautions, self isolate and most importantly wash your hands!
I am not a health expert so take my words with a grain of salt. But I have had my share of hospital life and need to stay informed with issues as such for my own health.
End of the day this is going to be a medical question as we will need a vaccine or treatment. There is a need for a drastic restructuring to our society that will rely on people changing their behavior making decisions, in the trust of everyone else around them who continues to self isolate when needed to.
We need to collectively thank the health professionals, grocery store employees, pharmacist, scientists working on development of a vaccine, most importantly the individuals helping others and those in self isolation and practicing proper social distancing. My heart goes out to those that have contacted this virus or lost a loved one due to this virus.
REMEMBER WASH YOUR HANDS & PRACTICE SAFE SOCIAL DISTANCING/SELF ISOLATION
“Normal is nothing more than a cycle on the washing machine.”
TRANSPLANT UPDATE (18 YEARS)!!
“Enjoy the little things in life, for one day you’ll look back and realize they were the big things in your life.”
In my mind I’ve been trying to navigate around the labyrinth that currently surrounds me. I am in need of a transplant yet I am hiding from the world as a pandemic rages amongst us. Try as I can, I keep coming to a stalemate.
It’s been five years since I was told a third lung transplant would be my only chance of living. Lately there is no telling how quickly my body could deteriorate or plateau. Initially after being told a transplant should be a consideration my body stabilized fairly well for a couple of years. However in the last two years there have been frequent hospitalizations due to infections resulting in the scarring in my lungs. In addition I have on-going rejection all resulting in a drastic decline in my breathing.
A lot of people think that once you’ve passed a certain point that rejection is no longer a fear. But rejection is always a fear for a transplant patient. It could happen at any time, you could be perfectly well one day, then BAM! You’re in rejection.
Within a year I have lost another 9% of my breathing volume bringing my PFTs (Pulmonary Function Test) to an average of 15%, on a good day maybe 17%, not much room for play anymore.
“To give you an idea of what a FEV1 of 15% is, in 2002 before my first lung transplant my FEV1 was 10%. I was entering “End Stage CF” at the time, IT WAS NO LIFE TO LIVE AT ALL.”
Plain truth, I am not going to get any better. I think people have a difficult time understanding that. For them, they get sick and a few days or weeks later they get better. When I am sick it could be months, even a year, but by the time I heal or get rid of the infection there has been permanent damage to my body and health. Each infection reduces my life line.
It is for this reason that many young adults with cystic fibrosis have had a lung transplant. Transplants are a temporary fix, as infections and rejection set in the need for another transplant becomes necessary. Scarring from pneumonias, lung bacteria staphylococcus aureus, haemophilus influenzae, pseudomonas aeruginosa viruses, all cause irreparable damage to the transplanted lungs.
It comes back to “But you don’t look sick”… My flesh hides my illness, My clothing hides my skin, My smile hides my fears and struggles.
The toll and stress from these infections and low oxygen rate brought me to the point that I surrendered to my team at the beginning of this year while in the hospital. l am in need of a 3rd lung transplant. I was so sick I felt helpless, my quality of life had gone to zero; even walking around in my hospital room was too much of a challenge. I would lay in my bed, focusing on breathing, what little air I was getting into my lungs still wasn’t enough. I was exhausted all the time, with no energy or the strength to fight off what was attacking my lungs. I was struggling to live.
“My life situation has become too difficult and I am no longer recovering from when I am hospitalized.”
The last few hospital admissions have taken a large toll on my body. It’s made me realize the harsh reality there is no recovering what I’ve lost. I have to learn how to cope all over again by finding the best way to be comfortable within it. It’s made more challenging days than good ones, requiring me to rest more often.
“I’ve squeezed the lemon and as sour as it might be there is little left to be squeezed out; making the situation all too bitter and dry. I need to pick out the seeds and re-grow again.”
It happened quite quickly, in fact no more than a day or two. The middle of November (2019) I started to feel a little congested, no more than what I thought was a cold, with a small cough. I decided to head into my local lab to do a blood test and give a sputum sample to see if I was coming down with any virus or infection. The next day, I was getting ready for bed and all of a sudden it hit. It felt like someone sucked the air right out of my lungs. Winded I couldn’t breathe; nothing was coming into my lungs but panic. The suffocation sensation embraced my body. My heart rate was increasing to the point where, I felt as if I was a little Hammy the hamster in its plastic round clear ball bouncing down a set of stairs. Light headed, I couldn’t speak as there was no air to use to make any sound. I managed to turn on my oxygen machine hoping this would help. While I waited for my oxygen compressor to warm up, sitting at the end of my bed I checked my SATs and heart rate. My SATs had dropped down to 79% and my heart rate was 138 bpm.
Something was wrong, once I recovered my breath and felt sort of comfortable with my situation and could move I headed to the emergency at Toronto General Hospital (TGH).
After several tests it had been discovered that I had a chest infection of a pseudomonas pneumonia, and a form of mould colonizing in my lungs from a culture that I provided.
The test came back that the pseudomonas was sensitive to a treatment of IV Piperacillin Tazobactam and I would be treated for two weeks of IV meds. Several days went by and my condition wasn’t improving as fast as it should have been. After 10 days of IV meds it felt like we were working with a band aid solution. I was even more exhausted and other issues were popping up. Not only was I having issues breathing I was dealing with high potassium levels, kidney stones, a flare up of nasal polyps which resulted in post nasal drip causing my lung infection to get worse. The light at the end of the tunnel was slipping farther away.
This realization made me turn to the little things in life to start getting me by. When things are great you don’t think of the bad days. It was time to start focusing on the little things in life that bring us joy and happiness. Sometimes it’s the scars that remind you that you’ve survived, sometimes the scar tells you that you’ve healed.
“Sometimes it’s the scars that remind you that you’ve survived, sometimes the scar tells you that you’ve healed.”
What makes your day beautiful, what’s the last thing you think about before going to bed? Do you smile looking back at something that happened the other day? It might be a small thing, and that’s where the beauty lies.
Throughout the day or week, your routine is most likely set and the little things happening during that time are the ones that are making a difference.
Days waking up and someone has made you breakfast, coming home late and there’s a tasty meal ready on the table, mastering a new dish you’ve created in your head come to life, that solo walk you have with your four legged friend, your favorite song comes on the radio at the right moment, late night talks out by the fire with friends, the perfect flavor combination of donuts in a box, completing something off your to do list that’s been there for awhile, unexpected visitors to bring a brighter day, ending that perfect day with a show stopping sunset, the good feeling by bringing someone a warm tasty drink, only one poke while getting blood drawn, breathing in that first fresh breath of air when you step outside, a package in the mail, a cuddle from your furry friend, a smile from a stranger as they walk by, even the silent present of a visitor, to that message of someone checking up on you.
These are just some small things that impact my life. “Notice the little things around, notice the small things that give you happiness, even if it’s just for a short moment. If something makes your soul smile, note it and make sure you include it as part of your routine.”
Life is made up of moments, and if you can collect these moments, you will never feel alone. We all experience those days when nothing seems right and everything seems a challenge, your work, your relationships, your mind worrying about the future. On these days, you need to focus on the things that require little effort to give you some strength. You need to learn how to be kind to yourself.
“Notice the little things around, notice the small things that give you happiness, even if it’s a short moment. If something makes your soul smile, note it and make sure you include it as part of your routine.”
I felt a little more energy near the 10 day mark but I was still very sick and coughing up a lot of junk, still having issues breathing and requiring a couple liters of oxygen. The team decided to extend my treatment for another 10 days and would allow me to go home on home IVs near the end of the week. Hoping being home would let me move around a little easier as well be in a better atmosphere to recover in.
The first few nights being home were the hardest ones that I had ever experienced while on home IV. I wasn’t sleeping, making myself even more exhausted. If I did fall asleep it was shortly lived. I would wake suddenly struggling to breathe with tubing of oxygen, insulin and IV meds wrapped all around me.
Living in a body that is trying to attack and kill you every day is challenging, it’s like working on a building with a collapsed foundation. It definitely takes a toll on the body building anxiety and fears.
On December 6th, 2019, after 3 weeks of IV antibiotics for my pseudomonas pneumonia I had a follow-up appointment with my lung team. At this point I needed to be wheeled around in a wheelchair, was too short of breath and weak to walk. I required 24/7 use of oxygen. I hadn’t felt much improvement and unfortunately was hoping I would be clear of this infection by this time as last year I was admitted over the holidays for basically the same infection.
There was a slight improvement with feeling congested in my chest or maybe I was just trying to tell myself that to feel as though I was getting better, however I was still very short of breath and needed the use of more oxygen as my SATs had been low and my health wasn’t getting any better. My current FEV1 from that day was 15%, two months before it was 24%.
“I JUST FELT LIKE I WAS BEAT UP, EXHAUSTED WITH NO WILLPOWER.”
My x-ray didn’t show much improvement from 3 weeks previous. So my team and I decided to readmit myself and try a course of two new IV antibiotics (Meropenem and Ceftazidime), hoping that would clear my chest and help with the shortness of breath. At this point I had told my team I was ready for a 3rd lung transplant. Surrendering to the infection that was going on in my lungs knowing there wouldn’t be much of a recovery from this point. I had felt I reached a new low in my life and if I plan to be around longer maybe it was time to take them up on the offer of a 3rd transplant.
As a backup, my team and I would begin the process of test and procedures to be reassessed for a 3rd lung transplant while I was in the hospital. As it had been 5 years since my assessment was done for this, most of the tests they had would have been outdated. The only issue was I was in isolation due to not knowing what kind of mould was growing in my lungs. Causing most of my test for my assessment to be put on hold until the results came back from the mould.
With the new course of IV meds my pseudomonas infection was starting to become manageable, allowing some relief with breathing and sleeping. My isolation also was lifted as the mould they found came back negative giving me a chance to get a few tests for my assessment out of the way. One test I had issues with was my walk test. I couldn’t complete it due to the fact I would get too short of breath even with the use of O2 as well my heart felt as if it was going to pound out of my chest. I tried several times but just didn’t feel comfortable breathing with a racing heart. Being in the hospital and isolation for so long made my body became physically weak. Finally I began to notice a little improvement and felt safe enough to go home after another two weeks of hospitalization.
I was able to be released from the hospital again with home IV. I was still nowhere in the clear as there was a lot for my body to recover from. My body was weak, I had lost weight, my muscle and lung capacity had dropped. I did feel better this time, and felt lucky as I was able to spend the holidays at home with my family.
I have had a few follow up appointments with my transplant team since. Currently my body has stabilized. I’ve been working toward building my strength and adding weight back on. As this was one of the requirements that my team said would be needed for a 3rd transplant.
I will not be instantly added to the list, there are still some important tests the team want done as some of the medication I’ve been on for 18 years might have caused damage to my organs. There is a waiting period for these tests to be completed as well a halt due to SARs COV 2. So at this time I am required to wait for my case to be brought forward to the board that will discuss my results and see if I am a candidate for a 3rd lung transplant.
“I am smothered in mixed emotions as mentally I am ready for a third lung transplant, but feel as if I’ve been left on the sidelines.“
The fear of being the first in Canada to receive a 3rd lung transplant doesn’t feed my mind of fear any more, as in April last year (2019) the first successful 3rd double lung transplant was performed at TGH, done to a young man with CF. With the most recent update news he is doing well.
The waiting is brutal! It allows fear to grow. It’s the, “What if’s”. What if I am no longer acceptable for a 3rd transplant, what if the team finds something wrong with my results deeming me no longer a suitable candidate. Living with life as I now know it will be difficult. A quick pick-me up of a box of donuts will not help if the team decides against me being a suitable candidate. My team needs to make sure that my body is still strong and healthy enough to undergo another transplant. I know some of my results have not been the best as I was hospitalized during these tests. I’ve been going through many tests this time around making me feel uneasy about the situation. Week after week I have attended various appointments and still no decision. I am uneasy, not to the point I don’t want a transplant, more of an uneasy as I’ve been lost in communication. There are two sides that communicate with you after your second transplant and they aren’t always on the same page, there’s the “Pre-Transplant Team” when undergoing another transplant and there is the “Post-Transplant Team” who I usually deal with.
Let me put it this way, it is like playing a new game with two groups of people. However, each group tells you similar rules but yet expect you to play by their own rules at the same time. You’re the only new player to the game, everyone else has played. Knowing you’re already at a disadvantage, there isn’t much enjoyment in playing or putting effort into the game. Are you playing just to amuse others around you, or are you playing because you feel there is a small chance you could prove you are a winner?
I still don’t want to get my hopes up high only to have them crash hard.
The hard facts of my life – I am too sick and will never “live a healthy lifestyle” with the way my body is now. This realization that my quality of life sucks makes some days quite challenging. What helps me deal with this are the little things in life. I’ve learned two people can look at the exact same situation and see something totally different. You can either accept your situation or you can get up and make the change to become who you need to be.
Reacquainting myself to the little things in life is helping me adjust. This “new life” requires a great deal more planning. I no longer have the option of just getting up and going. Now there is more thought and additional time required before walking out that door, as oxygen is a necessity. I haven’t been driving so I rely on other people to urber me around.
The magic of starting to focus on these little things is that I’ve gradually shifted my thoughts from what is missing in my life to what is there. It has created a little positive loop in my brain feeding me with motivation and energy. I’ve started to create my own happiness bit by bit.
Point here is that it’s the little things, and little rituals like this that can have a positive effect on your attitude and lead to happiness. Happiness is something that we don’t always know how to define very well, but that we all long for.
“Life is very interesting… in the end, some of your greatest pains, become your greatest strengths.”
If you ask people where happiness is found, you will usually get answers that refer to external things, things which fade, that are out of control.
If we own more and more and we live more and more comfortably, with more abundance, why are we so unhappy? What isn’t working? What’s going wrong is that we believe that external things will make us happy. It is true that getting the job of your dreams, finding a partner who loves you and treats you well, or having money, does give us pleasure, but it is short term. It is pleasure, not happiness.
The ability to appreciate the small things can IMPROVE your life in a big way. There is a reason to celebrate the small things and be grateful every day all you need is just a slight shift in perspective.
How do you start improving your life? Writing is a great outlet, how do you know how you feel if you don’t acknowledge your thoughts. Write them down on your phone, a journal, or even talk to someone about them. Acknowledgment is the first step. If someone is a part of, “your small things” thank them. People like to know they are appreciated. We can sometimes get tied up in our lives forgetting how many amazing people surround us.
Compliment someone for the small things they have done for you, give a sincere compliment to a friend, family member or even a stranger. Try to be specific as possible to make it more meaningful, we don’t always know what’s going on in others lives. A compliment could be all they need that day to make it better and get through to the next day.
Be kind to yourself, good intentions are contagious.
Try to Live in the moment, we can’t change what has passed and tomorrows have their own destiny. Depression is being stuck in the past, anxiety is being overly concerned about the future, but living in the moment you can acknowledge you are breathing, stay safe.
Just as each day has its joys, each day has its struggles, little things at home, things with food, outdoors, music, breathing, connecting, most of all enjoy the fact you can rest. Resting gives us a chance to recharge from stressful events to recover while being sick, helping us return to our original selves.
As I wait for my upcoming tests, dates and results; I will continue discovering the little things in my life that have gone unnoticed bringing more possibilities of happiness, and smiles to my day as well appreciation towards things I never knew existed.
“People deal too much with the negative, with what is wrong why not try and see positive things, to just touch those things and make them bloom.”
The heart of the question is simply this,
I am going to cover most of this ground today but first I ask you these questions.
I recently looked at myself in the mirror and saw a reflection that reminded me of a promise I had made to myself many years ago. Fight for every chance that I am given to have the freedom that fuels my drive and passion. People may think my suffering looks painful, uncomfortable or maybe they consider me unlucky. I think of it as I am here to show them a lesson that despite challenges life can still be enjoyed. I hope that I can inspire people to find pleasure within their own lives.There were times when my mind would be struggling but my lungs somehow continued to hold up. Now I find it more often my lungs struggling and my mind telling them to hold up. The changes within my lungs give me the sensation that everything is crashing in, my breathing is becoming more impossible. The important impact of escaping this feeling doesn’t exist anymore. You can’t get out through the ceiling or tunnel. Fleeing will only bury you deeper. You can’t climb to a safe altitude as that will only leave you falling without a parachute. The only way out is to secure the walls that are crashing in on you and with time you can push them back to where you feel safe enough to exist. There are more times now where I need to feel that “secure sense” by taking small breaks/ rests allowing my breathing and lungs to catch up even with the little activity I am currently doing. I remember some time before my second transplant I was at work and wasn’t feeling the best, with shortness of breath and what seemed like a chest infection. I was discussing with a co-worker at the time about transplants, and she brought up the question about “well what about a second transplant”. At that time I never thought a second transplant was possible nor would be available, nevertheless ever needing a second transplant. I thought once you received a lung transplant that was your last straw. TWENTY-SEVEN. I found out that there have been 27 recorded events of a third lung transplant to date across the world. Stumbling across this fact has instilled and lifted a false hope in my life. Discovering hope has brought more light into my world, my life now has multiple possible endings. Knowing there have been successful third lung transplants encourages me to think positively. It has given me back the determination to fight which of late had been rapidly dwindling. Third lung transplants are not common procedures; in fact a third lung transplant has not been done in Canada, thus leaving it unavailable to determine success rates at any close transplant center. The main reasoning for a re-transplant is “graft failure” usually found at the beginning time of transplant or “chronic rejection”. It has been found that those who undergo a re-lung transplant for chronic rejection have a better survival than those with early graft failure. The survival rates of living from a first lung transplant for the first year is 80% survival, to reach the three year mark is 65% compared to a second lung transplant the survival rate of living one year is 60% and to reach three years is less than 50%. As far as the statistics go for a third transplant the closest for comparison is to compare it to a “second lung transplant” with smaller percentages, followed with more complications of recovery as well more side effects to follow such as higher risks of infection, osteoporosis, bronchiolitis obliterans syndrome, kidney disease, diabetes, cancer and of course rejection. Maybe I fall lucky in the category, if you want to call it that most of the side effects I am living with already. One of the main concerns with doing a second or even a third lung transplant is the scarring of the bronchus tissue used to connect the donor lungs to the recipient. There isn’t any way to tell the state of this tissue unless opening up the patient and actually looking at what damage has been done. This isn’t really an option as doing so could make conditions even worse for the individual needing the transplant. There is also a higher incident of bleeding during and after surgery, due to other scar tissue damage. As well a first transplant can sometimes prime the immune system so that it may be overactive after the second transplant leading to a higher rate of rejection. Your body’s natural immune cells are able to recognize small, unique proteins called “antigens” that are present on the surface of all cells or infectious particles. These immune cells, called the T cells and the B cells, can recognize the antigens as “self” if they belong to you or “non-self” if they do not belong to you (such as those in the donor lung). This recognition occurs mainly through complex proteins on the cell surface called “HLA antigens”. The HLA system is made up of three classes with many subtypes. Each person has a combination of these HLA proteins that makes him or her unique, a signature. The differences in these signatures help our immune cells to separate “self” from “non-self”. They then direct an attack on the foreign donor lung, resulting in “rejection”. Rejection can happen at any time after lung transplant. Just over a third of all lung transplant recipients will develop “acute rejection” within the first year after transplant. Acute rejection is the most common type of rejection. This is a change that develops over a short time and may resolve with prompt treatment. Over time, you may develop slowly worsening, chronic rejection called chronic lung allograft dysfunction (CLAD). A common form of CLAD is called bronchiolitis obliterans syndrome (BOS), which is the leading long-term cause of death one year after lung transplantation. Sadly, a majority of lung transplant recipients develop some form of chronic rejection over the years after transplant. This is a serious problem and may lead to progressive damage and loss of function in the transplanted lung. What brings on rejection? While rejection is a natural response of the body to anything foreign (“non-self”), there are some things that can make it more likely for rejection to occur. The common factors include: infections that involve the lung for example cytomegalovirus (CMV) infection, fungal infection (like Aspergillus) and bacterial infections (like Pseudomonas). Injury to the lungs that happens during and immediately after the transplant surgery (called ‘primary graft dysfunction’). Not taking immunosuppressive medicines regularly and following your treatment plan after transplant, and also gastroesophageal reflux disease (GERD). However knowing that there have been successful third lung transplants gives me hope. I am also very fortunate to live close to my transplant center; Toronto General Hospital is the first institute that completed the first successful lung transplant to a man by the name of Tom Hall in 1983. There had been attempts all over the world starting from 1963 by a Doctor named James Hardy from the University of Mississippi who unfortunately was unsuccessful. Forty-four lung transplant operations had been tried around the world, but unfortunately none of them were successful. Tom Hall on November 7th, 1983 was the forty-fifth attempt and the first one that succeeded. Tom was given the additional chance to create memories with his friends and families as well fulfill many of his dreams.
I do struggle at times with morality knowing that I have been given the chance of two lung transplants while there are still people who are waiting for their first transplant. I hope that these individuals get a chance at a positive match and experience a gift of transplantation allowing them to live out possible dreams.
“All the things you dreamed of is that maybe, I’ll never get a chance to do them. Now they’re all possible again just like a whole new life I get to have.”
“Life is build of segments, these segments are challenges, maybe test to see if we’re ready to move forward on our journey that will bring more sets of challenges but surviving these challenges have only given us more strength and knowledge to defeat our next segment.”The day that I was told a third lung transplant would be necessary has been ever present in my mind. Every day I think I am dying faster than I intended on. Since being told I needed another transplant I have been able to live another three additional years. I am quite happy with what I’ve gotten out of this extra time especially knowing how critical and fragile life can be after a transplant. However it’s still hard to digest to think that my life can be taken away so quickly. Living in the moment sometimes makes it easier to push the negative thoughts to the back of your mind. If you want me to be honest I didn’t think I would be this well last year at this point and please take “well” very discreetly! You see there has been some false hope in my mind. At times I find it exceedingly difficult to keep a positive outlook. This is probably true for the first individual that needed a third lung transplant as well. I wonder what Tom Hall was thinking knowing that there hadn’t been any successful lung transplants at the time when he underwent his operation. I don’t want to get my hopes up high only to have them crash down. I have been in this position before which makes it harder as I know what lies ahead. I am not giving up in anyway, I just feel that my body is exhausted and I am going to need a lot of help this time around. I am not sure why I say this, call it intuition.
One of the biggest issues I find myself facing with going through a third lung transplant is the “wheel itself coming around” repeating similar feelings and situations that have been struggles and challenges from the past to once again be revisited. So I sit with a catch 22, I am in a place in my life that I am uncomfortable and no longer feel useful as my body begins to breakdown. Sometimes I think is it greed that sways me to be free of these failing lungs, to have another chance at life so I can wander amidst the world of unturned stones. However I know how uncomfortable, painful and terrifying this transplantation path can be, I have walked here before, my mind cannot help but be filled with fearfulness.
I once wrote
“I used to believe I had it all figured out, however I was totally wrong. As I get older there are more issues that I need to deal with, struggling with everything from financial to mental to physical and emotional complications.”These complications have added strength and value into my life; lessons that have shown me as well prepared me for harder times that will hopefully come into light. These uncomfortable paths I talk about can be hard to prepare yourself to relive, but I remind myself at times that great rewards in life can cost great sacrifices. Many people may not understand the extreme depth of my current situation. My condition is rapidly deteriorating; my quality of life is evaporating. Existing and no longer really living is inevitable. I consider my future as I feel now and fear consumes me. Entering that lion’s den takes a strong courageous and motivated individual to fight. Do I want to relive the fray raw scale of deterioration as my body slowly suffocates or like a fool with an addiction for “LIFE”, do I want to take a CHANCE? People will read this and think that I deserve another chance at life and I simply should go for a third transplant. What they don’t understand is all the “underlying stuff”. Being on the transplant list is by no means an easy task, mentally and physically. Every moment your mind is thinking is today going to be the day? Every time the phone rings you jump, is it the hospital calling to say come on in we have lungs for you! It is like the biggest card game you will ever play. Do you risk the chance knowing that you might not survive the initial operation? Do you take the chance knowing that complications post transplant are huge and that you might end up right back where you started six months or a year down the road in rejection with the same problems and diminished lifestyle? Existing and no longer really living is inevitable. Considering my future I feel the fear slowly begin to snack on my mind. Entering that dark, cold, wet lonely lion’s den takes a strong courageous and motivated individual to fight. I know in my heart when I think about my future there awaits a devastating life crashing moment, walls closing in, heavy chest, lack of oxygen. The Reality…… there is no easy way out.
Remember when I asked you to think of the thing you feared the most, I want you to write it down on a piece of paper. When you have time fold it up and put it away for awhile. Let some time pass a couple of months a year or so, go find this piece of paper with your fear. There is a good chance your feelings have changed regarding this “fear” you may have a more prevalent fear. You have come through the first step. Looking at and considering your fear!Becoming fearless isn’t the point; I know that it’s okay to be afraid. The important thing is that I now have an understanding of how fragile life can be. Despite all we have to live for each and every moment facing all the aspects that come into play. Living a fearless life would be impossible, as time goes on and the world evolves new fears are made and discovered. The point is learning how to control your fears and how to rise above them at the best of times. Fear is deadly, it causes paralysis, and it feeds negativity it spawns hopelessness. What I do fear? I fear the slow disintegration of my body but more so I fear saying goodbye. It has always been a matter of time before my hourglass runs out. I can either watch the last few grains of sand disappear or I can start building a team that will stand behind me, that will empower me and support me to once again rebuild my world, to give me the faith to face the lions one more time.
There will be moments where I will need to be reminded to breathe.
There will be moments that someone will need to show me there is light when I am in the dark.
There will be moments when I will need to hear a voice when I am left in silence.
There will be moments that I will need someone to argue over sunrises and sunsets.
Most of all there will be moments that I will need to be reminded I am stronger than I believe I am.
The end of May approaches warmer weather greets us which means more outdoor activities. Let me set the day for you. After a cold long winter, there are many people taking advantage of these summer-like days in May by either sitting on a patio taking in the sun, socializing with a group of friends, or simply strolling through the park with their dog. The sun is shining giving everyone that extra happy feeling. A gentle breeze cuts through the sweat perspiring off your forehead giving you that extra push to be a little more physical. With the arrival of good weather, I don’t want to miss a single day, I take every advantage to get outside and enjoy my surroundings. Even the simple things like walking with the sun in your face, enjoying a stroll through the park, and sitting on a bench people watching, just to be outside is very healing until……
A slow gradual tightness dances through my lungs, it spreads instantly throughout creating a sense of strangulation with each breath. My breathing constricts becoming shallow I can feel the throbbing and pumping behind my ears. I no longer hear the surrounding sounds that were clear a moment ago, but now muffled noise leads to confusion.
My Heart begins to pound as if I just got off a treadmill however I’m standing still in place. With each BEAT/THUD felt my heart races faster out of control, the shortness of restricted shallow breaths starts to set in. Anxiety floods my mind, a sense of hopelessness washes over me as I realize the vessel I live in is no longer strong enough to be my operating system.
With the lack of oxygen to fuel your body, you can feel a crash of darkness setting in only to hope in the back of your mind that the foggy cloud of panic and confusion that has overtaken control of your mind and body will dissipate just as the sunrise does on a misty morning.
I can’t get control, the panic sets off a mental distress of confusion in the brain, too much going on and my thought process is overwhelmed. My mind begins to feed off of the bits of anxiety that is settling in. Cold sweat creeps across my back, (why this, why now?). Survival mode kicks in, don’t let anyone see or discover what is happening. Meanwhile, I struggle to control my breathing. “Come on you got this”, I silently scream at myself, yet no results, less and less air is slipping into my lungs. You tell yourself to sit down, you try and gain control. You take a look, is there somewhere to sit, a quick glance confirms nothing in site.
“Live damn-it, just fucking breathe”. If only it was that easy. Take a breath, a deep breath as deep as you can exhale! Repeat, trying to slow down the beat you feel and hear drumming in your ears. Your pulse is strong but your will to live and persevere is stronger. Let your body know you want to live. Come on Dan get a grip of yourself, my mind repeats again and again! The drumming slowly fades away I’m back to the weak shallow breaths I’m used to. The dampness in my t-shirt is the only evidence left of what just happened. My body is still on overload, I slowly start to go into rest mode. I take a step back, find somewhere to sit down and rest. The confusion of lost clarity begins to lift with each full new breath entering my lungs.
I have always hidden these attacks from others but now I think WHY? I have always considered it a weakness but in realization, I should be telling someone in case the situation gets worse and reaches a point that I cannot recover from.
I am scared, almost all the time. But I never tell anyone, I can’t afford to. I’ve made myself believe that I have to go on pretending. I am generally a confident person, I try to keep my disease invisible, and I hate to admit that I have a weakness. When I was younger my experience with mental health was brought to reality by the instabilities that my brother and father struggled with. I never thought it could be a part of my life; I never truly understood what was going on or thought I could help.
Unfortunately, I am not alone mental health issues are quite common in chronic illness sufferers.
Research has shown that patients suffering with chronic disease (defined as a condition that persists longer than three months) often have anxiety and depression. It is estimated that up to one-third of individuals with serious medical conditions will experience depression. Depression can be a common complication of Cystic Fibrosis.
You have a chronic illness yet you thought your mental health wouldn’t be affected. You may tell yourself that everything is gummy- drop rainbows with flying unicorns of joyfulness. However our lives are unpredictable, circumstances change, suddenly you wake up one day to discover the walls crashing in around you. These episodes force yourself to take another look and reevaluate your situation.
The build-up of anxiety from living with a chronic illness such as cystic fibrosis can make the playing field a whole lot different. The mental battles/panics and pain we live with are real and can be very hard on us. Managing your mental health is just as important as any other treatment and regiment that is prescribed by your team. The main goal is to live as much of a “healthy life” as possible by following routine treatments that help keep a CF’er out of hospitalization. However, there are times where we will feel captive in our own surroundings leading to situations that leave us mentally confused and depressed. We are often left feeling weak and sometimes exposed, preferring to hide what’s really going on in our lives.
Interestingly May is the awareness month for both Cystic Fibrosis and Mental Health.
Cystic Fibrosis is the most common Autosomal Recessive life-shortening disease among Caucasians. Studies exploring the prevalence of anxiety and depression in adult CF patients are few. Those that have been performed show inconsistent results and rarely include comparisons with general populations. The prevalence and degree of anxiety and depression that were investigated in adult CF were found higher than the general population. These results have lead to a new screening process that is now being used during clinic visits.
Chronically ill patients wonder whether their chronic illness is making them depressed or is their depression making them ill?
Living with a chronic illness is tough, dealing with changes in mobility, low immunity and never knowing how your body will be on any given day can take its toll. It can be difficult to maintain balance living in a body with a chronic illness that is trying to kill you physically while battling the mental stresses of daily life.
Anxiety and depression of the “bad days” diminish our best attempts at living positively. We are often left feeling weak and powerless, sometimes lifeless.
Mental health is an integral and essential component of health. It is a state of well being in which an individual realizes his or her abilities to cope with the normal stress of life. The individual is able to work productively and make a contribution to his or her community.
I used to believe I had it all figured out, however I was totally wrong. As I get older there are more issues that I need to deal with, struggling with everything from financial to mental to physical and emotional complications adds incredible stress to my life. Increasing numbers of CF patients are now surviving into adulthood. Like myself, this new group of CFer’s are experiencing more and more mental health issues.
Although depression and anxiety are common in CF, the stigma associated with mental health issues often make people less likely to talk to about them.
Depression can be overlooked by doctors when dealing with the bigger picture of a patient’s disease.
Over 6,000 CF patients aged twelve through to adulthood, and over 4,000 parents, found that depression and anxiety were two to three times more elevated in patients with CF and in parents of children with CF.
New guidelines have been developed for screening and treating depression and anxiety found within the Cystic Fibrosis-related community. Patients 12 years and older should receive annual screening for depression and anxiety. Parents of caregivers of patients aged 0-17 years of age should be offered annual screening for depression and anxiety. The purpose of these screenings are now just as important of measuring height, weight, chest x-ray, and PFTs. This is a stepped process for prevention, screening assessment, and intervention. It can include talk, therapy, medication or any combination of the two.
The difficult part with diagnosing depression and anxiety in patients with CF is that most side effects are already common issues found in patients with CF/chronic illness. This often makes a diagnosis difficult.
Most side effects are:
Mixed emotions, loss of energy, feeling hopeless and worthless, loss of things that are enjoyed, problems concentrating, problems making decisions, irritability, sleeping more than usual, trouble falling or staying asleep, unexplained aches and pains, stomach aches or other digestive problems, loss of interest in sex, sexual problems, loss of appetite and weight loss, weight gain, thoughts of suicide, suicide attempts.
CF individuals who suffer from depression are less likely to manage their treatment plans, tend to have worse lung functions, have a lower body mass index (BMI), experience more hospitalizations, often have higher health care costs and experience a lower quality of life.
You can’t manage everything on your own, and pride should not get in the way of happiness. Although it may be difficult at first try to find the right person who understands the multi-level effects that CF can create in our minds. Finding a friend or professional counselor you can trust is imperative. Take the time to invest in yourself.
Dr. Henna Macciocchi doctor of immunology states, “It’s important to remember that mental health and physical health are inextricably linked. People with chronic illness can, therefore, suffer from poor mental health (and vice versa) as a consequence of the illness itself and of the diminished quality of life. Looking after the body is one of the easiest ways to take care of the mind. The importance of a physical lifestyle for someone living with CF is highly important, as it’s a form of keeping the lungs active and healthy aside from being a form of physiotherapy.
Pain is depressing, and depression causes and intensifies pain. People with chronic pain have three times the risk of developing psychiatric symptoms. Vise versa mood-anxiety disorders and depressed patients have three times the average risk of developing chronic pain.
Either way, depression worsens chronic illness and has been linked to higher rates of disease-related morbidity compared to patients without depression. Those with depressive symptoms tend to experience a diminished quality of life and have almost two times as many days of restricted activity or missed work. From a survey of 1,100 patients, 49% of those suffering from chronic illness are on antidepressants, according to a study published in the “Western Journal of Medicine”.
As hard as it might be to admit what is going on with our feelings or mind the human body is a study in staggering complexity. More than 37 trillion cells all working together create our walking, talking and thinking organisms. But for all the body’s amazing biologic mechanics, there are still a few unfortunate quirks that evolution has yet to iron out.
When I was younger it wasn’t always easy explaining to people what Cystic Fibrosis was let alone pronounce the word, as not that much was known about the disease. Telling someone to just Google or show them a meme wasn’t an option nor did they hand out booklets telling you how to introduce yourself, let alone live with the disease.
In my younger days, living with CF was both mentally and physically challenging. A lot of people and kids would come up to me/stare and ask why I was so short or what was wrong with me when I couldn’t stop coughing. My cough was terrible, wet, throaty; distinctive of a 75-year-old chain smoker. It was all consuming and totally uncontrollable, practically always producing phlegm. I would sound like I was drowning, gurgling in mucus, until I couldn’t breathe.
So many times I would plead with my body to hold in the cough that would knowingly set my lungs aflame. I would desperately try to contain it until I could find a location by myself avoiding the questions of what’s wrong with you, or the laser-eyed stares from onlookers. Not only was this terribly embarrassing to me but it also took a toll on my mental ability. So many times my heart broke as the power of this disease was exposed to the public.
One-third of mental health issues begin at school, differences in environment/surroundings, self-esteem, social identity body image, all lead to kids being bullied.
It’s not just kids in the playground that can leave a toll of hurt. Exposure to the adult world can be just as devastating. I now understand that kids at an age of curiosity don’t always understand the entire situation. But growing up it was also the adults who asked unnecessary personal questions. These hurtful comments often deeply scarred me and many will be trapped within my mind forever. The staring, critical quips made by some adults made me feel alienated from society. No one living with or without a chronic disease should ever have to suffer through this trauma.
It was because of these negative reactions that I felt I needed to hide my CF from the “outside world”. What would people say if they saw the drugs I took, the daily inhaled medication or physiotherapy required to help clear my airways. Hiding all this took a toll on me mentally. I understand that adults can be as curious as children however they should learn to practice desegregation.
These questions and comments can leave a child/adult questioning themselves. What is wrong with me? Why am I different? Does my image really matter whether I am short, tall, fat or thin? Does my cough bother you? All these questions affect your perception of where you truly fit within society.
Living an active teen-life can often be challenging for those with CF/ Chronic illness. The time consumed in managing life-sustaining therapies can lead to loss in weekend outings with friends/ family or the socializing at school/events. Recurring hospitalizations due to infections also interfere with a normal social life. Combining this with being a kid/teenager can lead to immense mixed emotions and feelings triggering panic attacks, anxiety, doubt, and depression.
Memories from our youth can leave a permanent negativity in our minds. These deprecating impressions make us feel different, guilty that there is something wrong with us. It takes a toll on our self-esteem, our confidence, questioning where we fit in. Something I learned along the way was, we often cling to memories as if they define us. However, it is our actions that ultimately define who we are. It took enormous willpower to learn how to ignore the comments and looks I received, now it is just natural to disregard the rudeness.
Many describe living with mental health like being on an unpleasant roller coaster ride. The unexpectedness is daunting. When will the cart accelerate? Can you survive the gut-descending fall? The uncontrollable mixed feelings in your mind wanting to get off the ride while feeling you’re a burden to others. You would rather help others around you than face your own concerns. It’s an illness that affects every single thing segment in your life. A word, sound, action, location or event can bring on a surge of panic and anxiety, initiating that depressed feeling of loneliness or hopelessness that washes up within.
Struggling to live with CF and Mental illness can make daily routines very difficult. In addition to normal occurrences, we have other things dragging us down. Watching lung functions drop without control wondering if they will ever go back to previous normal limits. Watching our loved ones worry as we face these battles never knowing what the next day will bring. It is not easy saying no to friends and family. The fear of missing out never knowing if we will get another chance to experience the moment can play havoc with our minds. Waking up at the beginning of the day feeling as if you’re in a fog lacking clarity or focus makes it difficult to complete normal tasks.
Living with CF doesn’t just mean there are complications with the lungs making our breathing difficult. There are different mutations that negatively affect the body including the pancreas, liver, nose sinuses and sweat glands just to name a few.
Some CFer’s suffer from pancreatic issues. Thick sticky mucus creates scarring on the pancreas. This scarring prevents the pancreas from producing normal amounts of insulin which results in type 1 diabetes. In the “CF world” we call this CFRD (Cystic Fibrosis Related Diabetes).
The American Diabetes Association (ADA) warns of the problems that can happen when patients with diabetes have depression that is left untreated. They note that the stress of managing diabetes on a day-to-day level is real, and can make people feel sad and isolated. Depression and diabetes can easily spiral into a vicious cycle. “If you are depressed and have no energy, chances are you will find such tasks performing regular blood sugar testing too much”, writes ADA. “If you feel so anxious that you can’t think straight, it will be hard to keep up with a good diet. You may not feel like eating at all. Of course, this will affect your blood sugar levels, “which will affect your diabetes, which will affect your depression, which will…. you get the picture”. Research shows depression increases the risk for diabetes, and diabetes increases the risk for depression.
My new motto is you cannot pour from an empty cup. Taking the time to refill and refresh your mind, body and soul is not only nourishing but also creates positive energy when dealing with those around you. Don’t be afraid to say “No”! Listen to your body. It can take a long time to understand that there are days where you may need to lay down all day to recharge, don’t feel guilty about it. There are ways to help control living with CF and mental health together such as joining a support group, talking about your problems with people who have the same experience can help you feel less alone. Don’t spend time worrying about your “expiration date” everyone has one just because we are born given a scientific age doesn’t mean you are that “stat”. It’s best to make the most of it without focusing on when and how it will end. Take the best care of yourself to exceed that stat.
Many people with depression withdraw and isolate themselves from others so spend time with people that lift your spirits as well get outside and make time for things you enjoy for at least 30 minutes every day. Avoid alcohol, drugs, caffeine and cigarettes, which can increase anxiety levels, very importantly continue your treatment plan.
Practice good sleeping habits, do your best to get enough sleep. Go to bed and wake up on a consistent schedule and avoid staying in bed when you’re not sleeping.
While these habits are not a substitute for professional care, they can help boost mood performance.
Don’t be afraid to ask for “Help”, there is such a stigma around mental health issues that many people are often afraid and embarrassed to admit they need help. CF causes scars both physically and mentally that we have to deal with on a daily basis and there should be no shame in asking for help. Understanding mobility is the key to freedom, independence and ultimately happiness.
More than 80% of people with depression and other mental health-related issues show improvement with treatment. This is also true if depression is related to chronic illness or the side effects of medicine.
There is a toll on anyone living with CF, not just the body the mind and soul. Doubt creates anxiety and fear, fears that we may not be in control. Someone once told me that depression is the antithesis to anxiety, that when the body gets too much feeling it shuts down the ability to feel at all as a defense mechanism.
Ultimately we are the authors of our lives, we may not be able to have control of the plot but what we do with the characters is up to us. There are days living with CF where you feel like your lungs are drowning you. Anxiety rises as your heart rate increases, you’re slowly slipping under that wave as the water fills your lungs and the panic hits you straight on. The only thing you can try to do is remind yourself to “just breathe”. This may sound easy to most as breathing comes naturally however what would you do if you had to fight to breath? Imagine someone is chasing you up a steep flight of stairs, you are out of breath yet you know if you stop you are in danger. You’re winded you feel as if someone has sucked all the air out of your lungs, your body freezes as you try to grasp your breath but you don’t find it. Fear and pain set in how can you escape? Someone with CF never escapes. Struggling to breathe is terrifying. We encounter these episodes all the time. We learn how to try and steady our gasps until we gain some control over our damaged lungs, always fearing the next attack to come.
In light of Cystic Fibrosis/ Mental Health awareness month coming to an end, I leave you with this, living with a life-threatening illness usually comes in hand with depression and anxiety.
Because the awareness month is over doesn’t mean either of these illness just disappear or heal themselves. The people that live with these conditions continue battling for their lives every day knowing some days are good and others are bad. They both are a battle against themselves.
Behind my smile, there’s a story you would never understand. I’ve fed you bits and pieces of my life to help shine light into what it’s like living with CF; however I’ve only just skimmed the surface. What I have done is let you glimpse down my rabbit hole, this hole gets a lot deeper. My hope is you will walk away with a little more insight into the immense world of disabilities and mental health.
I want to share this topic with all the Cystic Fibrosis/ Lung Transplant family’s and Worriers/Salty Girls out there who aren’t always sure how to deal with our emotions. The feelings of uselessness, confusion, anxiety and depression are real, you’re not alone you have every reason to feel like this at times. We are different, our disease takes its toll however, we can’t change how we were created but we can try and create a strong positive mindset. Our lives mean we face adversity on a daily basis. We have to think of ourselves as warriors as we learn to overcome and find the strength to exceed even the darkest moments.
The Un-knowing of knowing can be a dark place. There are days that I feel totally dead inside, the fight has been extinguished with exhaustion, confusion, hurt and doubt. The realization of a fallen wish or thought has at times evoked thoughts of death.
At times my current state of mind rambles along feeling as if, night is day, day is night. It’s like living in a complicated yet comfortable zone. I get to observe all the plastic skeletons that we hide while we rest.
Despite all, I will constantly bathe my mind in the positive light that maintains “nothing is impossible”! I will show them you can transform strong will and determination into life itself. Learn to be yourself without fear of discrimination, let the observer label you as they will. As long as you act on your own accord and follow your own beliefs confident in your own identity you will be beyond judgments.
Yesterday, (March 21st, 2010) and today, (March 22nd, 2002) are extremely important days in my life. In fact, they are more important than my birthday; I actually consider them as anniversaries.
These days represent life, the new beginnings of who I am today. They are about change and opportunity where the path splits from a dead-end road to a paved new beginning. These dates are the anniversaries of my two double lung transplants.
My first transplant in 2002 was the closest thing to a cure for Cystic Fibrosis. However, with a transplant you often change one set of problems for an entirely different set. When a transplant is going well it means LIFE, new beginnings and possibilities of new and exciting experiences.
My second transplant was the result of chronic organ rejection, this can happen any time living with a transplanted organ. Although I had been down this path once before this time the scenery was quite different. I was now an adult located at a new hospital, working with a new team leaving behind my friendly nurses who were like family, that made the transition into the world of transplantation so much easier!
I’ve had other health issues that I have covered in my blog, and I encourage you to read them.
Unfortunately, at this time I won’t be able to give you my yearly assessment update for another week or so, as this year my appointment falls back on a later date. This appointment is a yearly follow up of tests and results to see where my current health status lays. But marking 16 years of a double lung transplant is quite rare.
With this information being delayed I thought I would write a different post sharing some insights into the world of organ donors and their families.
I NEVER PLANNED FOR A FUTURE,
Many of us only get one chance at life, a chance to grow up, dream, find our purpose and fulfill it. As for me maybe the lion that lives inside of me has brought out cat-like characteristics of 9 lives. Looking back I never did have many dreams or plans for my future. I didn’t envision what school I would go to, a career path to wander down, or what I would do once I finished school. I never took growing up a serious factor in my life as growing up meant an early death; a dark path I never wanted to look down nor venture. Whenever someone would ask me what I wanted to be, the reply would never be serious. The typical answer was “Work in the Mafia as a Hit Man or someone that would take over the world”. Maybe that was because I grew up with Cystic Fibrosis and subconsciously knew I had a disease for which there is no cure. My health challenges shifted my focus and priorities to just surviving, another day, another week another year, thoughts that most young people my age never encounter
I have struggled for a very long time about writing a letter to my donor’s family. I have written this in my head a thousand times but have never published it. Not because I was lost for words but afraid of not saying the right words.
Imagine there is a family that is in shock, grieving the loss of their loved one. Emotions are running on high and yet through all this chaos they are willing to give a complete stranger a gift.
There exist an invisible heart-wrenching thread and a bittersweet bond between donor families and recipients.
Dear Reader /Readers,
I am now ready to share my thoughts and reach out to the families that helped me. I do not know where this letter will end however, I do know it’s written from the heart. I can only hope you’re out there and one day this letter finds you, as you are the reason for me returning life into my body.
I say return life into my body as at the time of March, 22. 2002/ March, 21. 2010 I was in end-stage Cystic Fibrosis (2002) and chronic organ rejection (2010), an organ donor was the only chance I had at living. I look back at what I wrote near the time of my transplant in 2010, you may start to understand what I mean by “returning life back to my body”.
February, 26. 2010
“I am a hollow shell, the life that once flowed throughout my veins has been replaced with stillness, uncomfortable stillness that puts me in a state of high anxiety. Never did I imagine sitting here in this darkness alone, cold, feeling “flat-out useless” as the purpose of a sundial on a moonless night. I fear the nothingness that never existed inside me. I’ve lost everything and have gained invisible weight that only I can feel and see. I can see myself from a far distance, looking for help, light, and a familiar face that can help. I’ve become something that I’ve always feared………….. ALONE, and EXPIRED. I’ve succumbed to that poisonous fear that will eat me alive.”
You are my Donor and Donor’s Family; “You’ve given my body the life that I never thought was possible”. How do I begin or where do I begin? A “thank you”, in my eyes isn’t even close to the expression I wanted to pass on. Every-day I think to myself how to thank-you and show the appreciation that you deserve. There is not a day I have not thought about you, I try to imagine who you were, what you believed in, your goals dreams and what you left behind. I can only hope I’ve come close to what you would want your donor-recipient to be. I’ve written countless amounts of letters on paper, held countless conversations in my mind of thanking you but never believed any of them were up to standards for showing the gratitude that I want to give back.
The battle we share of a faceless world of not knowing each other can leave so many questions left opened.
I fight to keep our story alive. I do this for all the tomorrow’s still to be lived and dreams that need to become realities. My wish is to succeed so that our journey can be “a story” helping to instill faith and hope for those that feel they are in the dark and alone. Tomorrows do exist; there can be light at the end of the tunnel. I am the match; our striking pad is our journey.
Dear Donor family,
I am sure this letter may be difficult to read, it has been difficult to write and will always be.
How can I possibly say “Thank you”? Eight letters aren’t long enough. Eight letters aren’t enough to grab onto all the emotion that I’m feeling as I write this. It isn’t enough to encapsulate the emotions I experience day to day when my donor crosses my mind.
Eight letters for each year added to my life!
“Thank you” is an expression which is used quite often as a polite expression when acknowledging a gift, service, or compliment, or accepting or refusing an offer. This is a different kind of “thank you”; it’s a “thank you” that defies English or any language out there.
How do you say “thank you” that means because of you and your family member I am alive today!
I see a family that lost a precious, beloved person in their life.
Your gift I received the day of my transplant changed my life forever. You have given me a gift that so few could give. You have put life into a dying boy/man’s body, how do I ever begin to thank someone for a gift that powerful? At this point in my life, I can’t fathom the thought that my life could have been cut short at sixteen, I would have missed out on the last 16 amazing years.
I apologize for the time it has taken me to write this letter, and in many ways, I have thought about it but always wanted it to be the perfect letter as you have saved my life and allowed me to share it with others.
There isn’t a day I do not think about you and your lost one and the gift you have given me, there are no words to describe how thankful I am.
You have allowed me to grow and continue a life that I never imagined on living. You allowed me to graduate from school, become an uncle, have shared birthdays I never thought I would see, go to places I have never imagined going to. You gave me my independence back, you have given me a chance to make dreams and let them come to life.
There have been many nights that I lay awake late wondering what life would be like if I wasn’t here. The people I’ve met along the way, how I have changed their lives with our story. I know it would be a lot of great moments and laughs from my family and friends missed, as they really do appreciate the gift you have given not only me but them as well.
I continue my life’s journey letting others know how important being a donor is and the impact of how it can change other lives. Its people like you that we all need to look up to. The most unselfish gift given to save another’s life during an extremely emotional and devastating period in your life is truly amazing and honorable.
You were forced unwillingly to close a chapter in your life, as I was just about to write a new book in mine. This book isn’t fiction, the characters in it are real, the pain, joy, love, our emotions, visions are all real. Real as you and I are. Hero’s are people like you, putting your family’s situation on hold while giving thought to someone else. This is the truest GIFT OF LIFE.
As I said before, a transplant isn’t a cure, but what it does is allow you to buy time, another trilogy of our life. We are all limited by time however, if we use it to our fullest it is incredible what we can accomplish.
There have been times I needed to put my life on hold as my condition had quickly deteriorated. These times of darkness put a huge strain on my family and me.
If you can imagine before I received your gift, life was very challenging. Anything I did required an incredible amount of effort. Even with oxygen, I still had to be in a wheelchair if I wanted to go out. The simplest tasks like putting on socks, showering, getting in and out of the car left me gasping for air. Next to the gasping was the chronic coughing that I was all so well known for. I avoided laughing because it would bring me to a coughing fit and I would be unable to catch my breath.
I want you to know your gift has had a ripple effect of giving. You gave my parents their son back, my siblings their brother, and many people a friend. But most important you have given HOPE and ENCOURAGEMENT to so many other people that our story has reached and touched all over the world.
I don’t know if “Thank you” can truly encompass just how grateful I am for this gift called life. To be honest, I don’t know if I will ever truly be able to wrap my head around this fact. How can I celebrate each and every day knowing that with every breath I take, there is a wonderful family out there grieving, I am the beneficiary of your loss.
One thing I want you to know is with each breath I take and each new experience I am lucky enough to have, I say, “Thank you”. It wasn’t until after my transplant that I knew the immense satisfaction of what a deep breath was. Many people take breathing for granted however when you grow up struggling for air I will forever be grateful for your gift. I am able to walk more than 3 kilometers without being short of breath, without my fingers turning blue or needing to rest every few steps.
You have given me a second chance to live and experience many tomorrows. I am able to see the sun rise and set, feeling the rays on my face.
I feel that each new day has endless possibilities and that my horizons are without bounds. I only hope that I am able to justify the use of this wonderful gift.
You and your family are my heroes. I hope in the process of reading this post you will understand the heartfelt thank you that I am trying to express.
Because of you, I’ve been able to double my life. Because of you, my shell has been filled with life, my veins flow with energy and my life is no longer stagnating. Because of you, there is light in my days, I now see a purpose in my journey. Because of you, I have a sundial that works with each sunrise and sunset, it is beautiful to see. Because of you, our lungs can continue to be filled with oxygen.
Because of your gift of life I’ve learned the true meaning of a quote by William Shakespeare.
“The meaning of life is to find your gift.
The purpose of life is to give it away”.
Thank you for returning the gift of life back into my body.
I’m a 35-year-old runner, gardener, yogi, teacher, wife, and mom. I love reading young adult novels, exploring farmer’s markets, adventuring with my family and experimenting with new recipes. I don’t have cystic fibrosis. In fact, for more than half my life, I didn’t even know CF existed. I had no idea the impact it would have on my life. But then again, for more than half my life, I didn’t know Chad.
Chad, my hubby, my best friend, my person. Chad is the reason I learned about CF. Chad and I met in college. He was the manager at the best college bar in the world and I happened to be working there. Chad was the guy who put flowers in the cooler at work for me, the guy who always stuck around to talk and the guy who walked me home after a late shift. Fast forward and Chad’s the guy who I fell in love with, the guy who proposed and the man I vowed to partner with for the rest of my life.
Like I mentioned, when we met in college, I didn’t know what CF was. I now understand it, as best as a person who doesn’t live it, can understand it. I have seen Chad in awesome health – able to hike in Montana and have the courage to whitewater raft.
I have also seen him in a really scary state – unable to walk across our kitchen without stopping and unsure if he could be the person he wanted to be because of anxiety and depression. Together, we’ve navigated doctor’s appointments, clinic visits, transplant discussions, and IVF. We’ve explained and tried to normalize aging with CF to friends, our parents, and most recently, to our boys.
Normalizing CF….that can be tricky. It’s hard for others to understand that our day can’t work the way most families days work. Chad needs time, both in the morning and night, for treatment. And, as most in the CF community knows, I’m not talking a few extra minutes. I’m talking 2-3 hours a day for treatment, plus time for meditation, exercise, extra rest, medication ordering, nose rinsing, nebulizer cleaning and more. CF also means that Chad sometimes can’t keep pace with others or do all the activities the rest of the group does. As the wife, I try to balance the pace of our kids or friends with Chad’s ability so that all feel like they are doing the right thing. And, more recently as Chad becomes older and his health is harder to rebound, it’s hard to normalize the depression and anxiety that such a demanding disease brings. But we do.
Somehow, we’ve made it so CF is at least for us, normal. The boys help clean nebulizer cups, plug in Chad’s vest, and race down to the basement in the morning to be with him while he does treatment. They know dad has CF, but also know that he’s ok. In their eyes, and in mine, he’s a superhero just the way he is (maybe, he’s a superhero because of who he is). They know Chad not as a CF patient but as a dad. The dad who walks them into school every morning, who reads extra books at night, the dad who loves DC sports and the dad who builds the most incredible Lego creations they can imagine.
There are moments when being the support person and normalizing CF can be challenging. When our older son asked Chad, out of the blue, why Chad has CF and he doesn’t, alerts sounded in my head. I wanted our son to know that questions are good and that it was great to learn and try to understand cystic fibrosis, as best a 6-year-old can. But I also didn’t want my answer about recessive and dominant genes to make Chad feel inferior. This time, I didn’t hit a grand slam. I used “weaker” as another word for recessive to try to make things easier for our son to understand. While supporting one, I hurt another. The balance of feelings, learning, and doing can sometimes tip. I apologized privately to Chad later, when our son could not hear. I have learned it is to be important to keep trying and admit when I fall short.
The other night, our three-year-old was talking with Chad after they had finished reading books before bed. Chad didn’t know I could hear, but our son was asking why Chad “plugs in and shakes.” He was asking why Chad does his vest treatment. Chad, without a beat, explained that he needs to shake up the mucus in his lungs so he can play better. Chad explained that he has CF, but our son doesn’t, so our son doesn’t do the vest. There were giggles next because our son said he likes that vest and likes to be with dad while he shakes.
There are times when being a CF wife and full-time working mom is really, really hard. There are days when the list feels endless and I become frustrated that Chad can’t help or join us playing because he’s doing treatment. Most days I don’t feel like that though. Most days, I am grateful that I get to partner and parent with a man who fights harder than any other person I know. He fights to get to be with me and our children. His devotion to us is shown with every treatment.
The challenges CF brings have brought patience, empathy, and compassion to our family. We purposefully and mindfully look with gratitude at the bright parts of life – riding bikes, backyard grilling, reading in bed and laughing. We can’t change that Chad has CF. We can, though, embrace each other, every day, and do our best to spread more love.
“I am grateful that I get to partner and parent with a man who fights harder than any other person I know. He fights to get to be with me and our children. His devotion to us is shown with every treatment. ” -Julie