Some Tough Decisions Ahead

I know that is has been a while since my last update and I feel like I should say sorry but I realize that I needed the break. It was good for me. I went up to Philadelphia with my mom and dad to get evaluated for my transplant, this one being a whole lot more emotionally draining than the last one. I was not in a place where I was ready to write about it for the whole world to see. To be honest, there is still a part of me that doesn't want to talk about it. If I acknowledge it, that means it's really happening.
There were three options that the team discussed - none of which my family nor I liked. Fair warning - none of these options are very positive nor are any of them a 'quick fix it all' type of deal. 

  • Option #1: 
They put me on the list and I move to Philadelphia and wait for the perfect match. Since I am 90% sensitized, that means only 10% of the population would be a perfect match for me. T

Cons: They said it could take up to 2 years just to find a perfect match for me. Then after that, I'd be in the area for at least another year while healing. 
Cons: I have an 80% chance of dying on the table due to bleeding - even if they try to coil off some of the collateral vessels. 
Cons: Life expectancy is not much longer than 5 years post transplant for the majority of people with my type of transplant. 

  • Option #2: 
They put me on the list, I move and they do something called Plasmapheresis to try and lower my antibodies so I'm not as sensitize. If this works, it could make my donor pool a bit bigger which means a higher likely hood of finding a donor for me. 

Cons: It is a brutal treatment and it's no guarantee 
Cons: We don't know how long it would take for the treatment to work so I could be there for a while getting it. 
Cons:  The antibodies can come back after transplant and even stronger than ever. 
Cons: I have an 80% chance of dying on the table due to bleeding - even if they try to coil off some of the collateral vessels. 
Cons: Life expectancy is not much longer than 5 years post transplant for the majority of people with my type of transplant. 

  • Option #3: 
We don't do the transplant and instead keep me as well as possible for as long as possible. At this point because of the likely hood of me bleeding to death is so high, they wonder if perhaps the transplant would do more harm than good. 

Cons: I'm eventually going to get sick and options are going to run out... 
Cons: We don't know just how long I'll be able to keep myself as healthy as I am now. 
Cons: Miss my window of opportunity for transplant 
Cons: Will I regret not taking the risk when I had the chance? 

Like I said - none of these options seem very good. The one I am leaning towards though is the 3rd option. My quality of life is way too good for me to move away from family and friends, live across the country from them for 2 years just to die on the table... If I'm going to die, I want to spend as much time with family and friends as I can before it happens. I don't want to spend what could possibly be the last 2 years of my life away from everyone. 

And lets say I do survive the operation, I only have 5 years after that. Where as right now, I have a great quality of life and it could last for who knows how long. I could go downhill in 6 years. Or, I could go downhill in 2 years and miss my window of opportunity... but at least I had a great quality of life and spent it with family and friends for those last 2 years. 

It all goes back to how I want to live my life and what I want to do with it. I've always been a fighter though and I've always said that I'll do anything to stay alive... I just hope that if I choose the 3rd option, I won't feel like I am letting people down or like all their hard work over the years was thrown away because I didn't take the chance. 

What I do know is that I ask all of you to support my decision - whichever it may be. None of these options are good or give 100% guarantee. And I know that it's easy to sit on the sidelines and decide which option is best for me, but until you are in my shoes, you'll never know or understand. I know you all want me to live and trust me - nobody wants that more than me. But I have to decide which option will let me live and not just be alive. I respectfully ask that you keep your opinions on which option is best to yourself. I welcome questions - as always. This though is a decision that is going to take a lot out of me and I ask for nothing but support - whichever option I do choose. 

Thank you for all the love and support. It means more to me than you'll ever know. 
Becca 


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My Life As A Chronically
Ill Young Adult
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