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.