I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Zog on February 04, 2011, 07:41:21 PM
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My wife finally got on the waiting list for a transplant today. :bandance; It took 3 years of waiting on our hospital and insurance company to work things out. Has anybody else ever had to wait so long just to get on the list? Jenn never had for her earlier transplants. We are okay with the wait as long as we can do home hemo and her access works.
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Did you have to wait until Medicare became primary? I don't understand why it would take so long. :waiting;
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It's a long story. My wife's former employer's insurance would pay for her to get a transplant at one hospital. They were going to evaluate her in late 2007, however we found out Jenn was pregnant, so Jenn quit her job and went on my insurance, which made Jenn's hospital of choice out of network. Because Jenn was pregnant, she was not a candidate for transplant. Meanwhile, because of a clerical error, Medicare had Jenn's birthday wrong. We believe someone may have faked it when Jenn was younger so she could do dialysis in an adult center as a child, but we don't know that. Because of this error, Medicare would not cover Jenn, because they said the birthday from social security was wrong. (This is all silly, but that is how healthcare works in America.) After our daughter was born in April 2008, we had to get Jenn's doctors to refer her to the other hospital. This took a few months. In early 2009 we went to an orientation class at the new hospital, they setup about a dozen different evaluations spread out over several months. During a CT Scan they found a large softball size cyst on one of Jenn's ovaries, because of this they wanted to have an MRI done. This meant scheduling an MRI, which wasn't done until 2010. This showed that the cyst had disappeared. The hospital wanted Jenn to get a dental exam and one more gynecologist visit done before they would put her up for review. We did those in July 2010.
In September 2010, the hospital finally approved Jenn for transplant, however Medicare was dragging their feet on covering Jenn and the insurance company wanted a few new tests redone because they said it had been over a year since the first tests were done. Why the insurance company wanted to spend more money on tests is beyond me. So she had to do more tests and then Medicare admitted they messed up. Well Medicare didn't, but we got a letter from someone in their office that said they had, and they became primary and back dated coverage to 2009. This happened last December. I called the transplant coordinator and asked her if she knew that Jenn had Medicare now in early January, she said we need to talk to someone else in billing, so we did. Last weekend we got a series of letters from our insurance saying Jenn was approved to get a transplant until 2013 or something like that. So today we got a call saying she is finally on the waitlist. This process has been very frustrating, but Jenn isn't as excited about transplants as some people may be, since she has had 3 failed ones. Our hope is that the longer she waits the better the induction therapy and drug regimen will be. She had a major surgery (BVT) in her left arm for the last fistula they can put in that arm in it earlier this year. We are hoping to get a few years use out of it before the next transplant. We would hate to get another transplant that doesn't last long and then after it is rejected have to go through another fistula revision or surgery.