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.”