The Summit Foundation for Cystic Fibrosis

Status Zero and End Stage Cystic Fibrosis

Status Zero

Status Zero is a level assigned to someone who has completed months worth of medical work up and has been assessed by a team of medical specialists to be a suitable candidate for a certain transplant. In my case, a lung transplant. People with CF must have a double lung transplant. Once a CF’er is transplanted their new lungs do not have CF but the rest of their body does. Lung Transplant is not a cure and is far from it! Status Zero means that I am on the list but am in stable condition and doing well but will need a transplant in the not so far future. The other 2 levels are:
Status One- person is in stable condition but of poor health.
Status Two- person is not in stable condition and health is progressively worsening while running out of time. Also, known as ‘the top of the list’.

Why did I start this process earlier then normally required?
Because I am proactive and a realist. There is no cure for CF. There is no way to reverse lung damage and there are no current treatments that will stop my disease. I only have 28% lung function and nothing will change that. I will not miraculously get more lung function, I will only lose more. To me that is terrifying. I have been stable for years but each year despite how great you are at treatments and taking care of yourself you will always lose some lung function. 3 years ago, I was at 33% and did not need oxygen supplementation. Now I need oxygen for working out, sleeping and doing rigorous household chores. At some point that turns into oxygen 24/7 and more lung infections, more complications with other organs, hospitalization, and more roadblocks limiting my ability to breathe. I am literally being choked to death. It’s a fact of life, my life, a life afflicted by Cystic Fibrosis since the day I started my journey on Earth almost 45 years ago.

I am in an enviable position financially, physically, mentally and emotionally because I have access to whatever I need, whenever I need it to help me do whatever I want. I have a huge support network and an amazing family. I got an excellent education and a great job post University. I married a really good man who remains in my life despite our separation. I take control of my life on my terms. I paid for my oxygen concentrators with my own money because I am not sick enough to get it covered by healthcare. In my mind, that makes such stupid sense. I am prolonging my life by getting on oxygen before I struggle to walk, talk, breathe and just be. Why the hell should I have to wait for my life to get unbearable before I start the use of oxygen. My use of oxygen is what is keeping me stable and thriving, relatively speaking. This was also a decision I made proactively and I know many CF’ers cannot afford $5000 to just buy their concentrator outright. I could so I did.

I honestly think that the smarter you are about your disease the better choices you will start making. I have never trusted stats and percentages. I trust my current situation and not some label of having ‘end stage’ CF based on the numbers alone. I know when something is ‘off’ and I adjust my life accordingly. I am my best advantage in fighting this disease.

I wanted to get on the transplant list so that when the time comes and my life falls apart and I can no longer face my days as easily as I can now, despite the hours spent beating it, that I am ready to move forward with the second part of my life. I could not imagine doing all te tests, procedures and counselling being really really sick! Just trying to find parking at the hospital is a daunting feat let alone having shit lungs that make that walk in to the hospital like climbing Everest.

I am now in a position that allows me to stay in control, not fearing the future, waiting for the other shoe to drop. When that happens, I get bumped up the list and my wait is shorter, my struggle is shorter and I can bid farewell to the lungs that kept me going for x number of years in exchange for a new set, with a new set of problems but easier ones to solve. As all transplanted CF’ers know, you trade one disease for another. Its still not a cure but it is an option to death. Without your health, you literally and figuratively have nothing. When you can’t breathe, nothing is good, nothing is beautiful, nothing is peaceful and everything is about taking that one next breath, just one more breath. Surviving is the only thing going on in your mind and its awful!
Would you do me a kindness? Would you help me try to stop this despicable disease?  If your answer is yes, here is how. Come and support my foundation, my events, my CF family. This year’s gala has an 80’s theme. Why? Because in 1989, due to donations and support provided by people like you, a researcher in Toronto found the defective gene that causes CF. That was a huge discovery. It was one we thought would bring us a cure but after 28 years we still struggle to find a way to stop CF. That just shows you how complex this disease is and what we are up against. We will find a way to stop it, it won’t be in my lifetime, but it will happen. So please go to www.sfcf.ca to show your support or just click on events on this page. Donate, buy a ticket, buy a table, donate an amazing auction item, or sponsor the event. Any way will help find a way to stop this disease and end the everyday struggle just to take a simple breath.

So, to bring back around I am grateful that I am a Zero! And when the time comes I will be ready to fight for a second chance at life. My advice to everyone is do not take your good days for granted for when the bad days come you have something to be grateful for.

“Get busy livin’ or get busy dyin'” – Stephen King from Shawshank Redemption

 

 

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