We have had some ups and downs in regards to the transplant itself, so I figured now that I have good news, I would update you all.
Instead of the long awaited call saying they had a kidney, get to the hospital, they said we have taken you off the transplant list due to the change in your insurance. It was like somebody kicked us in the gut!!!
I won't go into all the financial details, but in essence, because his insurance changed to Medicare, they only cover 80% of medications, so after transplant, you could be looking at HUGE out of pocket costs for the required anti-rejection medications. Therefore, they require you to show proof that you have xxx amount of dollars available in the event you need it. Let's just say we are talking quite a few zeros, much more than we have access to.
So here we are, he is healthy enough for transplant, been on dialysis for about 8 months now, as the doctor said "A Perfect Candidate" for transplant, but yet he was no longer on the list.
As a caregiver, I was very upset, it breaks my heart to see him suffering every night as he endures his 9+ hours of dialysis.
Then yesterday we got yet another call from the transplant center. This time it was good news. His secondary insurance changed October 1, and the amount we had to show proof of lowered considerably and they were putting him back on the active transplant list!!!
They say wait time is usually about 1 1/2-3 years after beginning dialysis, so we are hopeful that it won't be long and we will get that phone call. Although, I understand it could take longer than the expected 3 years, as there are 90,000 people on the wait list for a kidney in the state of Florida. A friend of mine on Facebook had a family member, a young boy, who recently got that wonderful call, and he had been on dialysis for 5 1/2 years! But he got his kidney, and went home 2 days ago! So we have hope that when the time is right, our phone will ring!
More updates as we have them!!!