A WARRIOR CAN STILL BE MADE OUT OF ME

 

 

“Life is like a wheel, sooner or later it comes around to where you started, reliving old challenges facing loss and once again rebuilding.”

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The heart of the question is simply this,

“Are you strong enough to take the chance and spin the wheel one more time”?

I’ve always wanted to be that person that defines the meaning, “Nothing is Impossible”. I believe that by showing people you can transform strong will into life makes all things possible. Wanting to live and the respect for life itself is the basis of my will. I know there are quite a few people who look forward to this ritual I’ve started where I leave a blog post on the anniversary of my first transplant. It’s a day that life and death are both mourned and celebrated. Today a family mourns the loss of their own but hopefully they can also celebrate knowing this unselfish act saved others. Today we celebrate 17 additional years of my life. It’s a life that is finely balanced, there is nothing asked in return; but if you are grateful enough you will spread the word of life, fight for those that seek it and lend a hand when asked for it. There is not a day that has gone by that I have not thanked and thought of both my donors, I think about them all the time they are my Heroes. I’ve been asked by a few readers for an update regarding one of my posts about needing a third lung transplant. I’ve also been asked what happens at the end of a lung cycle. What are the success rates and details about a “third lung transplant”, why would a “third transplant” be needed, whether or not I still am able to be a candidate for a “third transplant”, and where I sit on deciding whether or not to be added to the transplant list? I want people to feel comfortable asking these kinds of questions, it helps me to think of posts like this and allows other readers to discover and learn from these topics. There should be no restrictions in asking where I am or how I am feeling regarding any of these topics. I would be more than glad to tell you or even write a blog on a topic if you’re curious please ask away. My email address is on this blog form for that reason. A lot of these factors above have been added into my decision and I feel people need to hear the realities to prepare themselves; as well I need them to understand and respect my decision.

 

I am going to cover most of this ground today but first I ask you these questions.

Are you a registered organ donor, if not have you thought about registering as an organ donor?

 

BECOME A DONOR!

 
Would you want to see into the future if you can’t change the past?
Screen Shot 2019-03-19 at 4.56.26 PMJust because things could have been different, it doesn’t mean they’d be better.
Sometimes I wonder what people think after they hear my story. Some of you have actually become characters in one of the many chapters of my life. I see myself as the author, some friends and family are featured for a while making small cameos, others go on to play more dominant roles. Through these interactions I have learned new lessons which have been passed on to hopefully inspire others who might be in similar situations. I can only hope we have been able to enjoy our times together and that my blogs have been helpful. Now here I go… The altered dimension of my life is closing in. I am too sick for “living a healthy lifestyle” however, now no longer too healthy enough not to have a transplant. I close my eyes and see darkness, as I exhale I can hear my heart pounding, fighting to keep up with the lack of oxygen that my body can no longer supply. My will to live is challenged as I struggle for the air to fill what’s left of my lung capacity. I try to recharge but it’s like recharging a cell phone battery when the charge won’t hold. I open my eyes hoping to find some light, something to grasp onto which will allow me to know everything will be alright. What I want you to do right now is think of something you fear the most and hold that thought! I have to face the plain hard facts, no more fooling myself that I do not need another transplant. The possibility has been lurking in the back of my mind for the last few years. I had really hoped that human transplant technology would be farther advanced by now. I had thought that the ability to regrow organs through cellular technology might have been an option or at least the management of the immune system to the point where it would prevent the rejection of transplanted organs. The need for a third transplant has just recently caught up to me as I’ve been running from the idea for a while. There is always a fine balance in the timing when do I surrender without giving up livable time. Currently I am trying to squeeze out whatever life is left in these old air bags. Out of all the other lung transplanties that I have known who required a third lung transplant none have made it, they ran out of time becoming too ill before an organ was available. Only 1 in 5 lungs from deceased donors ever make it for transplant as they can be easily damaged and prone to infection making this organ extremely difficult for transplantation. Over the holidays I was admitted to Toronto General. I went in with what I thought was a flu bug. For several days before hand I had been wrestling with high fevers, sweats, chills, but once the cough began I knew it was time for a hospital visit. Once admitted it was determined that I had been fighting “Bird FluH1N1, a pseudomonas and pneumonia infections. When someone with lung issues comes across all three of these infections at once a significant amount of damage and scarring to the lungs can occur.  When it came down to it I felt like death and thought I am getting closer to it. Due to the little amount of lung volume I have left, small infections set me back a lot as there isn’t a reservoir of extra air for my lungs to pull in. They have become too damaged. Unlike my old CF lungs the feeling of drowning in my own blood and mucus isn’t there. This time around what has been happening is chronic rejection, this is where the small airways of my transplanted lungs have been so badly scared that they are no longer useable. The scarring will work its way from the small airways to the larger airways cutting off air movement restricting the lungs from fully working not allowing the body to get the right amount of oxygen that is required resulting in the feeling of suffocating. My O2 saturations were low 80’s, when I walked across the room inhaling became a tremendous ordeal I felt like I was chewing the air while gasping for every little breath. Like a fish out of water struggling to breathe, there were moments that I couldn’t move, my chest so tight, eerie wheezing sounds drifting to my ears, no air, panic…..While I was in the hospital my lungs were working at a 19% lung volume not leaving any room for play. img_3716.jpg  Of course I was trying to hide all of this, as if nothing was wrong with me. Why I ask? Who wants to be that person their family and friends are worrying about during the holidays, for that matter anytime? I wanted to keep a positive vibe for the holidays, that’s what it should be about. This traditionally is a time family and friends come together to enjoy each other’s company, however I’ve learned that this can still be done while in the hospital.IMG_3762 We might have not stuck to our original plans of being at my Mom’s for Christmas Eve/Day/Dinner but we were still fortunate. I was able to get a pass and escape to a friend’s house for a delicious Christmas dinner. Lots of visitors, memories and laughs were made; in addition an impressive number of donuts were consumed, thank you to those that made this all possible. It definitely helps lift spirits while spending time in the hospital and not feeling well. Since then I have had a follow up with my team, it was a very brief appointment where they wanted to see if any improvement had come from my hospital admission and IV antibiotics. I’ve been fortunate enough to have gotten off oxygen 24/7 and now only require it while working out or enduring strenuous activities. As well I gained 1% back on my lung volume bringing me to 20%, however it feels like less, my breathing is a challenge at most of times. The topic of a third transplant was re-brought up and the team figured we would go deeper into the conversation during my yearly lung assessment that’s on April 10th. It’s good to know the offer of a third transplant is still up for discussion but this doesn’t mean I will be instantly added to the list. I will still have to undergo a full reassessment of tests to see if my body and mind will be strong enough to pull through during and after transplant as it’s been sometime since my last reassessment. In the assessment process there is an in-depth review of my suitability for a re-transplant. During this process, multiple tests are carried out to evaluate my lungs and other organs such as my heart, kidneys, gut and liver. As well to see if I am mentally capable of managing with the stresses of a transplant. These tests will take about a week to complete. During these tests I am interviewed by a nutritionist, a social worker and an anesthesiologist to determine if I am physically and psychologically ready to manage with the stresses of a third transplant. After all the tests and interviews are complete the results are reviewed at a multi-disciplinary meeting where all members of the team participate. The team will carefully discuss my case and a decision will be made whether I am a candidate for re-transplantation or not. I seem to have been doubting myself lately; my mind is filled with a fog that is affecting my judgment. With the decline of my lung function my thoughts have been preoccupied with survival. I have to remind myself about all the positive things that surround me, I long for the freedom of thought without fear. I need to stop focusing on the negative and develop that confident energy that has helped me through difficult health issues in the past.

Screen Shot 2019-03-19 at 6.10.08 PMI 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.
Suture of donor's lung to patient bronchus.
The donor’s main bronchus is attached to patients main bronchus.
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.

“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.” 

Tom Hall

  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. enlight221
“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.

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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. cropped-screen-shot-2018-03-09-at-1-00-48-am1.png

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.

   

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It’s time I stop running from what I fear the most

and prepare for what I want the most,

Life!

A warrior can still be made out of me.

       

“When you fall get back up! New stories are continued by taking chances, sometimes it will take DRIVE and HOPE that will help bring roads to new opportunities.”

 

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One Comment on “A WARRIOR CAN STILL BE MADE OUT OF ME

  1. Hey DD! Big Ba-ooo from Curacao! Keep on truckin’. The first thing comes to mind is how lucky the folks are to be around you. Really doesn’t matter if it’s family, friends co-workers or somebody reading your words a self-hemisphere away…you have a wonderful, positive impact on people that is based in honest reality. That’s always very appreciated because it lends focus and clarity to the reality of our lives and shared journey. Nobody goes through it alone and I appreciated our time together. Funday doesn’t wait for Sundays! Let’s get ready for some Sundays on Wednesdays and keep it real-deal. Much strength and support headed up! Don

    Like

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