The Cost of Survival

Jerry Seinfeld once said, if your body was a car, you would never buy it because of the upkeep. I think he was specifically talking about transplant patients.

If you read my previous blog post, you know that I am currently trying to raise money for the American Organ Transplant Association. This charity helps pay for the cost of travel, testing, surgery, and aftercare of transplant patients. To give you an example of how expensive it can be to live as an organ transplant recipient, I thought I would go through my past as a patient.

1. When I was 11, my pediatric pulmonologist sent me to Texas Children's Hospital in Houston for a lung Biopsy. I spent 10 days in the hospital and my family had to travel.

2. Next, my parents and I had to move to St. Louis. in 2000, St. Louis Childrens Hospital/ Barnes-Jewish Hospital was the best place in the country to have a lung transplant. Our things had to be stored and we lived in a house with my older brother and his wonderful wife who so graciously took us in.

3. In October 2000, I had a living donor lung transplant. This included an operation on myself, my dad, and on my brother. 3 surgeries, 3 surgeons, triple the cost. Average cost is $550,000. I was in the hospital for 20 days.

4. The hospital required us to stay in St. Louis an additional 3 months after for follow up care which included weekly clinic visits, physical therapy, and testing. Afterwards, we had to fly up for follow up appointments every 3 months, then every 6 months, then yearly until I was an adult. Think of all the travel cost over the years from 12 to 18.

5. Transplant patients take 2 types of anti-rejection medication. First either cyclosporine, prograf, or rapamune (I take prograf) and secondly either cellcept or myfortic (I take myfortic). Without insurance, a 90 day supply of only one of these anti-rejection medications is over $2,000. I've been on them for over 10 years. That's $120,000 for one medication. I take 11 different medications daily. I cant imagine how I could ever have survived without great health insurance, which so many people don't have.

6. I am immunosuppressed. I have been hospitalized for CMV, pneumonia, broken limbs, low potassium, dehydration, cryptosporidium, shingles, bronchitis, pulmonary emboli, migraines, and renal failure just to name a few.

7. I went into end stage renal failure twice. The second time, it did not reverse. I had a kidney transplant in September of 2009. Kidney transplants are thought to cost between $150,000 and $300,000. I spent a week in the hospital.

8. I had to get a port placed for phoropheresis. Every hospital in Texas refused to place a vortex port because such port wasn't being used here for transplant rejection. Therefore, my dad and I had to travel to Kansas for the surgery.

9. Photopheresis is a procedure where your blood is treated with photoactivable drugs and then exposed to UV light. Without insurance, it costs at least $80,000 and most insurance companies don't cover it for the treatment of rejection. I am blessed enough to have an insurance company that did cover it.

This has only been in the past 11 years. You can easily see that I've racked up millions of dollars in hospital cost over this time. I've been so blessed to have started out with good health insurance through my father's employment and now I simply have to be vigilant that I'm always covered. Also, I am so lucky to have been born to parents who have a plethora of financial wisdom. My dad has always stayed out of debt and saved his money. Now that I have been sick, he has the funds saved up to pay for things out of pocket when needed. It doesn't take very long to find people in this world who aren't in the same place of financial stability that my family is. So many people these days live on credit, pay minimum balances, and owe money on homes, cars, school loans, etc. No one expects to get sick, need an expensive transplant, and a lifetime of aftercare. That's why this fundraiser is so important to me. I am in a place of privilege by no doing of my own. I feel that I need to give back to people who haven't been as blessed as I have been, financially, but are still facing the same struggles I am, physically.

If I can make the battle easier for someone who is fighting on two fronts, that's the least I can do. So please, if you can donate, even a dollar, please do! The life of a transplant patient is exhausting enough without medical debt piling up around you!