Krystas Story: Compartment Syndome
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If you clicked on this link you know Krysta somehow, or she has impacted your life in someway.
As many of you know Krysta has suffered from Chronic Exertional Compartment Syndrome for what seems like her whole life; but it has only been about 10 years. If you know her you know how debilitating this is to her and how this impacts her daily life. However, if you don't know we are here to tell you why she needs this help and how this is going to change her life.
Krysta was/is the most active, generous, and compassionate person we have ever met. Though that activeness stopped in 2009. She was in a scouting tournament for basketball, for which she was incredibly talented, when she collapsed and couldn't walk. The trainers immediately thought it was acute compartment syndrome and thought they would have to take her in for emergency surgery. Little did we know it wasn't acute, but 8 months later she was diagnosed with exertional compartment syndrome. There was and is little to no research on this condition. But seeing her go through this pain and missing coaching and playing the games she loved was devastating. At the time the only option was a bilateral fasciotomy. She said yes; anything get her back on the court, playing the games she loved and out of pain.
Fast forward several months, she had the surgery on both legs; at the same time mind you, and it failed. Within a couple weeks all of her pain returned. This began the road to find out what else this could be, why this is happening, and why her.
Now we won't get into all of the details of the last 9 years but here is a synopsis. Krysta has been EVERYWHERE, and we mean everywhere. We are talking Johns Hopkins, The Mayo Clinic, University of Michigan, all of the local hospitals, and has wrote to so many doctors around the country and overseas. All of them are so interested in her case and try to help, its rare, so they are excited. However every single doctor said the same thing; all of our tests show your abnormalities, show your pain, but we cannot figure out how to fix it. Some even went as far as to say it was in her head- that was devastating because as outsiders we see it's not but she doesn't understand why no one can help.
In-between these doctors, Krysta still carried on with her "normal" life. She went to school, graduated college with honors, and went to work. Now we don't know how she did it, or how she manages it, but she does and always with a smile on her face. Though through doing all of that, she was in the hospital at least every other month, and in her personal doctors office at least every other week. And consistently stuck in bed or at home not being able to do those normal things. However, unless you were in her close circle you would never know. She never wanted people to know something was wrong, or she was hurting, or anything at all. Her goal was to look and be treated as normal, unless you were in her trusted circle. However, now we are inviting everyone in because we need help.
Krysta has officially been accepted into a doctor's practice in Casper, Wyoming. She had to go through several interviews to even be considered because again what she has is incredibly rare. This doctor has a 70-95% success rate in stoping the pain of exertional compartment syndrome. Through her interviews the doctor has expressed that he believes he can get her to about 80%+ pain free.
Now let's pretend you are in the doctors office and they ask you to rate your pain on that smiley face scale. On a daily basis Krysta rarely ever gets below a 5, again you would never know. However, most of her days he ranges betweens a 6-8.
Now what does 80%+ pain free mean for Krysta: it means no more random trips to the hospital, it means less trips to her doctors- maybe we could get her to every 3 months. This also means, most likely, no more medication. This means she can be what really is a normal 25 year old girl. She can go to cedar point, she can go hiking again, she can coach and play sports again- well maybe not as competitive but still. She can do all of the things we take for granted and she deserves.
There is just one problem with this doctor. The procedure he does and the appointments he needs are not covered by insurance. This is not FDA approved. Krysta will need roughly 3 appointments. This first one is the biggest they do MRIs, CT scans, the consultation, and just so much more, plus the first procedure. The second appointment can be anywhere from 3-9 months later. They would just do necessary scans and the procedure. The third, and hopefully last appointment, can and usually stops all pain from there forward, or severally diminish.
We are seeking 20K, yes that is a lot of money. Though that doesn't even cover all of it - but it is enough that she won't have to take out loans.
Krysta is the friend everyone wants and everyone should have. She hates asking for help but will drop everything to help someone else. She tries to never complain about the cards she was dealt, and we truly believe she is the only one who could ever handle being in this pain and still survive and thrive in this world. This procedure will change her life in every way possible. Please think about helping her - because you know she would help you if you ever needed it.
If you have any questions or want to help us fundraise please email us or call, well her cell phone as after this is posted she will know!
Please and many thanks!
Her loving friends, family, and coworkers
As many of you know Krysta has suffered from Chronic Exertional Compartment Syndrome for what seems like her whole life; but it has only been about 10 years. If you know her you know how debilitating this is to her and how this impacts her daily life. However, if you don't know we are here to tell you why she needs this help and how this is going to change her life.
Krysta was/is the most active, generous, and compassionate person we have ever met. Though that activeness stopped in 2009. She was in a scouting tournament for basketball, for which she was incredibly talented, when she collapsed and couldn't walk. The trainers immediately thought it was acute compartment syndrome and thought they would have to take her in for emergency surgery. Little did we know it wasn't acute, but 8 months later she was diagnosed with exertional compartment syndrome. There was and is little to no research on this condition. But seeing her go through this pain and missing coaching and playing the games she loved was devastating. At the time the only option was a bilateral fasciotomy. She said yes; anything get her back on the court, playing the games she loved and out of pain.
Fast forward several months, she had the surgery on both legs; at the same time mind you, and it failed. Within a couple weeks all of her pain returned. This began the road to find out what else this could be, why this is happening, and why her.
Now we won't get into all of the details of the last 9 years but here is a synopsis. Krysta has been EVERYWHERE, and we mean everywhere. We are talking Johns Hopkins, The Mayo Clinic, University of Michigan, all of the local hospitals, and has wrote to so many doctors around the country and overseas. All of them are so interested in her case and try to help, its rare, so they are excited. However every single doctor said the same thing; all of our tests show your abnormalities, show your pain, but we cannot figure out how to fix it. Some even went as far as to say it was in her head- that was devastating because as outsiders we see it's not but she doesn't understand why no one can help.
In-between these doctors, Krysta still carried on with her "normal" life. She went to school, graduated college with honors, and went to work. Now we don't know how she did it, or how she manages it, but she does and always with a smile on her face. Though through doing all of that, she was in the hospital at least every other month, and in her personal doctors office at least every other week. And consistently stuck in bed or at home not being able to do those normal things. However, unless you were in her close circle you would never know. She never wanted people to know something was wrong, or she was hurting, or anything at all. Her goal was to look and be treated as normal, unless you were in her trusted circle. However, now we are inviting everyone in because we need help.
Krysta has officially been accepted into a doctor's practice in Casper, Wyoming. She had to go through several interviews to even be considered because again what she has is incredibly rare. This doctor has a 70-95% success rate in stoping the pain of exertional compartment syndrome. Through her interviews the doctor has expressed that he believes he can get her to about 80%+ pain free.
Now let's pretend you are in the doctors office and they ask you to rate your pain on that smiley face scale. On a daily basis Krysta rarely ever gets below a 5, again you would never know. However, most of her days he ranges betweens a 6-8.
Now what does 80%+ pain free mean for Krysta: it means no more random trips to the hospital, it means less trips to her doctors- maybe we could get her to every 3 months. This also means, most likely, no more medication. This means she can be what really is a normal 25 year old girl. She can go to cedar point, she can go hiking again, she can coach and play sports again- well maybe not as competitive but still. She can do all of the things we take for granted and she deserves.
There is just one problem with this doctor. The procedure he does and the appointments he needs are not covered by insurance. This is not FDA approved. Krysta will need roughly 3 appointments. This first one is the biggest they do MRIs, CT scans, the consultation, and just so much more, plus the first procedure. The second appointment can be anywhere from 3-9 months later. They would just do necessary scans and the procedure. The third, and hopefully last appointment, can and usually stops all pain from there forward, or severally diminish.
We are seeking 20K, yes that is a lot of money. Though that doesn't even cover all of it - but it is enough that she won't have to take out loans.
Krysta is the friend everyone wants and everyone should have. She hates asking for help but will drop everything to help someone else. She tries to never complain about the cards she was dealt, and we truly believe she is the only one who could ever handle being in this pain and still survive and thrive in this world. This procedure will change her life in every way possible. Please think about helping her - because you know she would help you if you ever needed it.
If you have any questions or want to help us fundraise please email us or call, well her cell phone as after this is posted she will know!
Please and many thanks!
Her loving friends, family, and coworkers
Organizer
Krysta Kincaid
Organizer
Macomb Township, MI
