The words "end stage" are two words that no one ever wants to hear. To be completely honest I never thought that, Cystic Fibrosis even had a "stage" until recently, when I was diagnosed as "end stage".
Normally when referring to stages in any disease your mind tends to go to cancer over other diseases. The truth is, all life threatening diseases have a turning point when it gets to what can be considered "end stage".
I want to explain a little more about my new situation, my plans, and what my mind set is at this point in my life.
First let me say, this is still NOT a death sentence for me by any means. A doctor can and never will be able to tell me when I will go and how long I have left. I am too stubborn to leave this world without doing 95% of everything I want to do.
☆Sometimes I feel that when you are born with a disease the doctors slap your tiny baby butt with a stamp of an expiration date.
All a doctor can do when it comes to life expectancy is go by scientific studies, statistics, and somewhat of an educated guess. In my opinion this makes the doctors almost ignorant to a point, to say a set time that we will leave this world.
Basically, when it comes to CF and how they determine end stage, it is when you are past the point of no return. For many people that can be determined by many different factors. I can only base this on how I meet the criteria.
☆Please, do not get worried if our situations may be somewhat similar, because our bodies are different and so are the treatments. Unless your CF doctor tells you where you are to your face, do not just assume anything.
I was put on the lung transplant list back in May of 2014. My PFT's were bouncing around the low 30's with frequent hospital visits. Which is normally the first step to get evaluated for a transplant. After the week we spent at UPMC Presbyterian Hospital, meeting with the transplant team, and learning all about a double lung transplant we had a lot to figure out. Much like anyone would dealing with such a big and scary decision. What weighed on me more than anything was that pesky little bug that will always be in my system, Burkholderia Cenocpacia.
A lot of surgeons who specialize in lung transplants will not do a transplant on a Cenocpacia patient due to the complications. UPMC is one of the few in the US that will do it. However, after hearing the risks and statistics post transplant, I have decided not to go through with a double lung transplant.
A lot of you are wondering why I wouldn't go for a second chance at life, or why I would turn down something when so many have successfully lived years after transplant? The risks and complications with B. Cenocpacia are at a higher level than a CF patient without it.
Taking immunosuppressant medications after transplant are hard enough on a Cystic who is negative for Cenocpacia, and it is terrifying knowing I would be even more susceptible for infections and rejection if and when it became active again. Fresh donor lungs with Cenocpacia have a higher risk of it becoming active and attacking the new lungs. Making it somewhat pointless. We were told that the average survival rate post transplant of a CFer with Cenocpacia is roughly 6 months. To me once you add in recovery time, extra risks, and medications adding more risk, I do not see it ideal for MY life, personally.
☆Now, that is probably not the case for many or any other CFers, as anything is possible and no one person thinks alike. Some people who have had the transplant and Cenocpacia have surpassed that estimate by several months and even years. It is just not in the cards for me. Also, other hospitals will have a different survival rates and can change. May it be more or less time post transplant.
I believe that there is a "healthier" CFer in need of a double lung transplant that may be able to have better luck with the amazing gift of lungs having better odds than I do. I would rather live the rest of my life with the lungs I was born with and allow them to let me live as long as I can. Than live the rest of my days in agony, because of this crazy bug. Knowing, that I can possibly help someone else live by passing on donor lungs make this decision a little easier for me.
☆Turning down the transplant is one of the main reasons I am considered "end stage" and being put on a new course of treatment and in the care of Hospice.
Other factors that play a role in my medical standing are, my PFT's and my FEV1 dropping rather quickly. Starting out on November 6th my FEV1 was 32% and as of today December 26th they are 20%.
☆Update as of July 20th 2015 my FEV1 is now 16%☆
The antibiotics are no longer improving my health, but only keeping me from falling further down the rabbit hole. At this point there is nothing else the doctors can offer me, other than a steady course of antibiotics to keep things stable. Keeping me informed and being here for questions or bad flairs, helping me with pain management, and staying comfortable. Every coughing fit, deep breath, laugh, or even yawn hurts horribly.
Now, as far as what I am doing and feeling about this I am in great spirits. I am not giving up on my dreams or giving in to my disease. I will be continuing to model for clothing lines and magazines as much as possible, I will be doing Sandi's Candi's in my free time, and I will be making memories with my husband, family, and friends. I have goals for today, tomorrow, and far in the future.
☆My hubby and I have decided that we are going to be taking more trips together so I can visit many states, we will be doing a lot of my bucket list items, and making sure we are always falling in love with one another every day.
♡My family and I are already pretty close, but I plan on continuing to build strong bonds with them. Along with reaching out to the other branches of my HUGE family, that I love and have embarrassingly not been able to spend more time with.
♢I plan on being able to make time with my friends and getting to see the mile stones that they reach in life. Babies, weddings, birthdays, and so much more. I am no longer going to allow CF to stand in the way.
☆♡☆I am focused on quality of life more than quantity of life at the moment☆♡☆
Never Give Up Hope,
Sandi
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