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How it all began. The story of my lazy kidneys...

August 16, 2017

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Ok, So here’s where I’m going to try to make a long story short. Around two months ago, I applied to be listed in Jacksonville. I was thrilled when they accepted me for testing! About a month ago, I visited the Mayo Clinic of Jacksonville to complete a workup for kidney transplant. If you remember, I had to have several meetings and doctor’s appointments before I could get on the transplant list at Tampa General. I’m still listed in Tampa, but here are the reasons I wanted to be listed in Jacksonville:

  1. Closer to home. It takes about one and a half to two hours for my family to get to Jacksonville. (It takes them about five hours to get to Tampa). You are required to have a listed caregiver to be active on a transplant list.

  2.  I feel like my chances are better being on more than one list.

  3. The Mayo clinic has the Paired Exchange program. This means that if a person who is not my blood type can still donate. Their kidney would go to someone who matches them, and I will get a kidney from someone who matches me. (If you’d like to donate or learn more about paired exchange click here for info)

I arrived the week of April 7th and stayed the week in Jacksonville. I met with a surgeon, an infectious disease doctor, a dietician, a nephrologist, a pharmacist, and a social worker. I learned about how cautious I’d have to be after transplant, and as a precaution, I had four shots in my right arm (shingles, pneumonia, hepatitis, and tetanus). Live vaccines can be dangerous after transplant because of your weakened immune system.  

 

Finally, weeks after I was back home in Tampa, I got the call. I am now listed for kidney transplant at the Jacksonville Mayo Clinic! HOWEVER, I am listed as “Status 7” which is as scary as it sounds. Status seven is an inactive status. I am currently inactive due to financial reasons. So get this-kidney transplants are expensive. Who knew? (just kidding. we all knew). Even if I get called at Tampa, I’m still going to need to have a whole lot of money saved. In order to be active on the list and eligible for transplant in Jacksonville (even from a live donor), I have to prove that I have a certain amount of money (around $12,000) set aside for this. If not, you must have a successful fundraising account before you can be active. So here’s where you come in…I have partnered with the National Foundation for Transplants to raise money. My fundraising coordinator has set my goal at $20,000 with the following breakdown:

·         Insurance premiums is $163.50/month = $almost $2,000/year and only covers 80%

·         Travel, Food and Lodging for relocation (I used 4 weeks as an estimate)

--Roughly $2,600 in per diem (daily food allowance)

--Roughly $2,700 in lodging

--Roughly $80 in mileage per trip

·         Rent/mortgage for 3 months immediately post-transplant $833 x 3= $2,500

·         Utilities for 3 months immediately post-transplant  $70 x 3= $210

·         Estimated medication costs $6,800

 

This totals $16,890.  I set the goal at $20,000 to accommodate your 20% co-pay responsibility/unforeseen costs/complications etc.

 

Luckily, I love to plan, and I’m working on some events. If you’d like to donate or get others to donate, here’s the link. As always thanks for reading. This blog has proven to be both therapeutic to me as well as a way to stay in touch. If I am not posting or chatting as much, don’t worry. I’m fine. I’m probably just out here busy hustling for this kidney money 😉  Join me!

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