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Laying in bed lastnight trying to put my thoughts together about how I should or if I should share a tragedy that has hit our family.
Earlier this year, as we were celebrating a great day on the trails in Colorado, and celebrating we were! because the day was fantabulous!
During dinner, my cell phone rang... luckily the layout of the room provided me with an easy escape out to talk to my family...
My brother and his wife have been taking their son, Evan, age 15 to see doctor after doctor, specialist after specialist, and generalist after generalist for over the last several years. Each time they went in, they tried to lay out for the doctor all the symptoms. The doctors each provided inconclusive responses, saying stuff like, "Oh, he is just going through growing pains " or they said, "you know, if he didn't watch and play so many video games, then maybe he wouldn't feel like this". My brother and his wife took the advice of the doctors, because they themselves didn't know what was going on. This whole activity had been going on for over 5 years. Doctors passed up on comprehensive tests because they said it was a waste of time and money. Yes, a waste of time and money, the same money that comes to the hospital via public donations and grants from the federal government.
Finally in August of this year, a doctor who went on a Boy Scout camping trip with Evan saw the symptoms first hand and directed the family to the right kind of doctor...
The results horrified our family. Evan is in end-stage kidney failure (both kidneys) and has been for several years... Yes, are you putting the timelines together? Well, we were informed in early August that Evan was definitely going to need a Kidney transplant. The initial plan was that Evan would receive the transplant in March or April of next year... Evan has taken so well to the dialysis that the doctors would now like to move the transplant date up to November or December of this year. But to add to the shock we found out two weeks ago that Evan’s youngest brother Eli is also in end-stage kidney failure.
My brother works at a rather large US based bank... He has been paying for healthcare coverage for this family for more than 16 years. He has never had anything more than the births of their four boys, common colds, flu's, etc. in all of those years...
Now, their long term healthcare provider, is giving them the run around... They live in Charlotte, home of Levine Children's Hospital, where Evan and Eli's diagnosis and care has been performed and done with fantastic results... Aetna has declared Children's Hospital an "out of network hospital” for the pediatric care required. Yes, you read that correctly, not an "in network hospital for pediatric care". Our first question was to ask what particular type of care would the Children's Hospital be able to do as an "in network provider". Amazing was the answer... This hospital is "qualified and able to perform adult kidney transplants, but is sub-par for pediatric patients". That’s the same doctors, surgeons, nurses, anesthesiologists, operating rooms, and medications, but the care is apparently different for patients under 18 (and maybe anyone under 5 feet tall, an X chromosome or with blonde hair). To be clear, this is a hospital that was ranked in the top 50 in the United States for both pediatric and adult kidney transplants by US News & World Report. The benefit for Aetna is that if my brother were to allow Levine Children's Hospital to do the transplant, then they would have to cover the transplants for Evan and Eli at the 80% level rather than what they’re doing, which is 60% of “customary and reasonable” – several hundred thousand dollars difference. The good news is that they have a family out of pocket maximum. That means my brother won’t have to pay anything out of pocket once they reach that max. But there’s another loop hole… That’s 100% of whatever is covered, not of all things. So the costs are mounting, and the insurance won’t even provide the details on what is covered or the rates for “customary and reasonable”.
Now to the fun part... Estimates are flowing in that the transplant, 3 months of pre-care which includes the dialysis and other treatments, and the first year of post operative care may cost $1M with Aetna willing (and willing to do so because of their great big hearts) to cover 60% of the “customary and reasonable” costs... My brother's plan clearly states that he has coverage for catastrophic health events... so now my brother has to come up with a small fortune in order to save his sons lives. And he needs to generate these funds before surgery, which the hospital would like to schedule for the December or January time frame for Evan and shortly thereafter for Eli...
My brother is an awesome Dad! He is an awesome brother! He is the kind of guy who would do just about anything for anyone at anytime. Just a super guy! And I can only imagine what he is going through. Carmen and I were not given the opportunity to save our daughters life. In 2007 we lost her and there was absolutely nothing that we could have done. My brother knows what has to be done and is going to be leveraging everything he has and has access to.
The reason that I am posting this is to ask for assistance. We are going to set up an account where donations to assist in paying for Evan’s and Eli’s transplant. Under no obligation, but knowing the great spirit of my friends here, I would like to make this information available to anyone who would be in a position to help out. I’ll post links and steps for how to help in the next couple weeks.
Thank you for reading this… Just the fact you got to the end says a lot…
God Bless,
Kindest Regards,
Randy “MyBrokenJeep” Haines
Earlier this year, as we were celebrating a great day on the trails in Colorado, and celebrating we were! because the day was fantabulous!
During dinner, my cell phone rang... luckily the layout of the room provided me with an easy escape out to talk to my family...
My brother and his wife have been taking their son, Evan, age 15 to see doctor after doctor, specialist after specialist, and generalist after generalist for over the last several years. Each time they went in, they tried to lay out for the doctor all the symptoms. The doctors each provided inconclusive responses, saying stuff like, "Oh, he is just going through growing pains " or they said, "you know, if he didn't watch and play so many video games, then maybe he wouldn't feel like this". My brother and his wife took the advice of the doctors, because they themselves didn't know what was going on. This whole activity had been going on for over 5 years. Doctors passed up on comprehensive tests because they said it was a waste of time and money. Yes, a waste of time and money, the same money that comes to the hospital via public donations and grants from the federal government.
Finally in August of this year, a doctor who went on a Boy Scout camping trip with Evan saw the symptoms first hand and directed the family to the right kind of doctor...
The results horrified our family. Evan is in end-stage kidney failure (both kidneys) and has been for several years... Yes, are you putting the timelines together? Well, we were informed in early August that Evan was definitely going to need a Kidney transplant. The initial plan was that Evan would receive the transplant in March or April of next year... Evan has taken so well to the dialysis that the doctors would now like to move the transplant date up to November or December of this year. But to add to the shock we found out two weeks ago that Evan’s youngest brother Eli is also in end-stage kidney failure.
My brother works at a rather large US based bank... He has been paying for healthcare coverage for this family for more than 16 years. He has never had anything more than the births of their four boys, common colds, flu's, etc. in all of those years...
Now, their long term healthcare provider, is giving them the run around... They live in Charlotte, home of Levine Children's Hospital, where Evan and Eli's diagnosis and care has been performed and done with fantastic results... Aetna has declared Children's Hospital an "out of network hospital” for the pediatric care required. Yes, you read that correctly, not an "in network hospital for pediatric care". Our first question was to ask what particular type of care would the Children's Hospital be able to do as an "in network provider". Amazing was the answer... This hospital is "qualified and able to perform adult kidney transplants, but is sub-par for pediatric patients". That’s the same doctors, surgeons, nurses, anesthesiologists, operating rooms, and medications, but the care is apparently different for patients under 18 (and maybe anyone under 5 feet tall, an X chromosome or with blonde hair). To be clear, this is a hospital that was ranked in the top 50 in the United States for both pediatric and adult kidney transplants by US News & World Report. The benefit for Aetna is that if my brother were to allow Levine Children's Hospital to do the transplant, then they would have to cover the transplants for Evan and Eli at the 80% level rather than what they’re doing, which is 60% of “customary and reasonable” – several hundred thousand dollars difference. The good news is that they have a family out of pocket maximum. That means my brother won’t have to pay anything out of pocket once they reach that max. But there’s another loop hole… That’s 100% of whatever is covered, not of all things. So the costs are mounting, and the insurance won’t even provide the details on what is covered or the rates for “customary and reasonable”.
Now to the fun part... Estimates are flowing in that the transplant, 3 months of pre-care which includes the dialysis and other treatments, and the first year of post operative care may cost $1M with Aetna willing (and willing to do so because of their great big hearts) to cover 60% of the “customary and reasonable” costs... My brother's plan clearly states that he has coverage for catastrophic health events... so now my brother has to come up with a small fortune in order to save his sons lives. And he needs to generate these funds before surgery, which the hospital would like to schedule for the December or January time frame for Evan and shortly thereafter for Eli...
My brother is an awesome Dad! He is an awesome brother! He is the kind of guy who would do just about anything for anyone at anytime. Just a super guy! And I can only imagine what he is going through. Carmen and I were not given the opportunity to save our daughters life. In 2007 we lost her and there was absolutely nothing that we could have done. My brother knows what has to be done and is going to be leveraging everything he has and has access to.
The reason that I am posting this is to ask for assistance. We are going to set up an account where donations to assist in paying for Evan’s and Eli’s transplant. Under no obligation, but knowing the great spirit of my friends here, I would like to make this information available to anyone who would be in a position to help out. I’ll post links and steps for how to help in the next couple weeks.
Thank you for reading this… Just the fact you got to the end says a lot…
God Bless,
Kindest Regards,
Randy “MyBrokenJeep” Haines
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