Tammy Yergey NETS Cancer
Donation protected
In November 2014, our lives turned upside down. My wife was diagnosed with a rare but slow-growing cancer, Neuroendocrine Tumors (NET). She was told that it was a good cancer to have because you can live for many years with it and you don’t really need any treatment. But we soon found that is not the case at all. The few experts out there all agree that aggressive surgical debulking is necessary to keep the patients alive as long as possible, but that doesn’t mean that the quality of life is good.
In 2015, my wife had a bowel resection in Iowa City, IA and two debulking surgeries in New Orleans. Why travel so far from Kansas? Because we went to the experts. After these three surgeries and 56 days in the hospital, Tammy’s intestines had so many adhesions, that she was unable to eat. She stayed alive by getting nutrition through an IV for 12 hours per day.
At this point, we were out of options. There were too many tumors and too much damage to her intestines. At that point, her expert doctor recommended a Multivisceral Organ Transplant. More or less this meant taking everything out of her abdomen and replacing with new organs. It is to include stomach, small intestines, large intestines, liver and pancreas. This surgery is extremely rare (less than 100 per year) and only two hospitals will perform the surgery for NETs, and only one of those hospitals accepted Tammy - Jackson Memorial Hospital (University of Miami) in Miami, Florida.
To be listed, the patient has to live within 4 hours of the hospital, so this meant that my wife and I moved to Pembroke Pines, FL (with some friends), but we left our kids back in Kansas. We still have two kids in High School, one in college, one just graduated from college, and one just leaving the nest. Tammy has been hospitalized since June 2016 so the only way she can see our kids is if we fly them to Miami (it is a 24 hour drive). I have to go home periodically just to take care of business at home (car tags, etc.).
We got the approval from the insurance and the hospital 8 months ago and started our journey. They on February the 3rd Tammy got a call to tell her she is not approved now for the transplant. Needless to say Tammy was a mess.
So now we are dealing with what I believe is an insurance company making a cap on her treatment. Anyway here is what we know. After calling our company I found out we still have the same insurance but we now are not totally self-insured. We have a reinsurance that kicks in at 175,000. So that is where ...this heartless company comes in to play. I called them and they said that they have a specialist that does the same stuff as Tammy needs and it is experimental. I told them that this was already approved and got a well it is not now. I said that is fine but there are some issues here. I told this to our company also. We were approved for the transplant 8 months ago. That is why we are here. That is why we have missed our children, grandson, friends, animals and home. That is why we have spent well over $30,000 in cost to be here. That is why they did the surgery and removed her organs. It was to prepare for the transplant. If we were not approved we would have probably got a resection and went home and waited for the next issue to hit. We most likely would have done the surgery in Nola and not Miami also. So with all that said we had an approval and that is why all of this has been done. So how do we get all that back? How does Tammy get her old organs back? I told them both as they can see there would be a court battle over this issue. You cannot say yes and then say no. That does not work in our situation. There has been damage done here that cannot be fixed. Tammy cannot live like she is now. Tammy is in the hospital and cannot leave because of the surgeries that helped to prep her for the transplant. They would not have done what they did without that approvals.
I called the transplant center and yes Tammy is on hold status. So we have been waiting 8 months and now she is on hold. What does that mean? If the perfect organs come available she cannot receive them. This part sucks and we have to deal with it right now unless someone has 2 million dollars to give us for the surgery.
So I am here with Tammy as I have been the whole time and I am talking with the transplant center, the transplant team, the hospital, and on the phone with work and the heartless insurance.
I just got done with the Transplant team and they said do not worry. They handle this stuff all the time. They will get on it on Monday and get things figured out.
That is our update and it is the weekend so I am limited on what I can get done. I will update as we go. I hope to get the insurance thing right.
No one messes with my bride. If you ask our kids no one messes with their mom. I am sure my oldest already has the grandson trained that no one messes with grandma. That is how our family works.
We have had some friends that have done some fund raisers and it is hard to except. But this has drawn out so long and so much more to go that I will ask for the help before we have to sell and lose everything over this damn cancer.
In 2015, my wife had a bowel resection in Iowa City, IA and two debulking surgeries in New Orleans. Why travel so far from Kansas? Because we went to the experts. After these three surgeries and 56 days in the hospital, Tammy’s intestines had so many adhesions, that she was unable to eat. She stayed alive by getting nutrition through an IV for 12 hours per day.
At this point, we were out of options. There were too many tumors and too much damage to her intestines. At that point, her expert doctor recommended a Multivisceral Organ Transplant. More or less this meant taking everything out of her abdomen and replacing with new organs. It is to include stomach, small intestines, large intestines, liver and pancreas. This surgery is extremely rare (less than 100 per year) and only two hospitals will perform the surgery for NETs, and only one of those hospitals accepted Tammy - Jackson Memorial Hospital (University of Miami) in Miami, Florida.
To be listed, the patient has to live within 4 hours of the hospital, so this meant that my wife and I moved to Pembroke Pines, FL (with some friends), but we left our kids back in Kansas. We still have two kids in High School, one in college, one just graduated from college, and one just leaving the nest. Tammy has been hospitalized since June 2016 so the only way she can see our kids is if we fly them to Miami (it is a 24 hour drive). I have to go home periodically just to take care of business at home (car tags, etc.).
We got the approval from the insurance and the hospital 8 months ago and started our journey. They on February the 3rd Tammy got a call to tell her she is not approved now for the transplant. Needless to say Tammy was a mess.
So now we are dealing with what I believe is an insurance company making a cap on her treatment. Anyway here is what we know. After calling our company I found out we still have the same insurance but we now are not totally self-insured. We have a reinsurance that kicks in at 175,000. So that is where ...this heartless company comes in to play. I called them and they said that they have a specialist that does the same stuff as Tammy needs and it is experimental. I told them that this was already approved and got a well it is not now. I said that is fine but there are some issues here. I told this to our company also. We were approved for the transplant 8 months ago. That is why we are here. That is why we have missed our children, grandson, friends, animals and home. That is why we have spent well over $30,000 in cost to be here. That is why they did the surgery and removed her organs. It was to prepare for the transplant. If we were not approved we would have probably got a resection and went home and waited for the next issue to hit. We most likely would have done the surgery in Nola and not Miami also. So with all that said we had an approval and that is why all of this has been done. So how do we get all that back? How does Tammy get her old organs back? I told them both as they can see there would be a court battle over this issue. You cannot say yes and then say no. That does not work in our situation. There has been damage done here that cannot be fixed. Tammy cannot live like she is now. Tammy is in the hospital and cannot leave because of the surgeries that helped to prep her for the transplant. They would not have done what they did without that approvals.
I called the transplant center and yes Tammy is on hold status. So we have been waiting 8 months and now she is on hold. What does that mean? If the perfect organs come available she cannot receive them. This part sucks and we have to deal with it right now unless someone has 2 million dollars to give us for the surgery.
So I am here with Tammy as I have been the whole time and I am talking with the transplant center, the transplant team, the hospital, and on the phone with work and the heartless insurance.
I just got done with the Transplant team and they said do not worry. They handle this stuff all the time. They will get on it on Monday and get things figured out.
That is our update and it is the weekend so I am limited on what I can get done. I will update as we go. I hope to get the insurance thing right.
No one messes with my bride. If you ask our kids no one messes with their mom. I am sure my oldest already has the grandson trained that no one messes with grandma. That is how our family works.
We have had some friends that have done some fund raisers and it is hard to except. But this has drawn out so long and so much more to go that I will ask for the help before we have to sell and lose everything over this damn cancer.
Organizer
Daniel Yergey
Organizer
Lecompton, KS
