Process to get on the list

  • You are eligible to get on the transplant list at eGFR of 20% (creatinine of 2.8). At creatinine of around 2-2.5, you could start checking your kidney function regularly by ordering the blood tests through any of the direct access laboratory testing companies, such as Health Labs, Direct Labs or My Med Lab to catch your eligibility for a transplant list earlier. Recent kidney transplant referral guide recommends clinicians to refer patients to transplant centers eGFR of 30% (creatinine of 2). While every transplant center has their criteria for acceptance, its worth checking if your transplant centers adopted this recommendation.

  • Completing the required medical tests can be done within 2 weeks. While most of the medical tests are valid for a year, its helpful to get them done before getting ready to go on the transplant list, and thus avoid unnecessary delays during evaluation process. Electronic Dropbox software is handy to store the results of the medical tests.

  • Find several kidney transplant centers with the shorter wait for your blood type and PRA. Make sure your insurance covers them. Time is of the essence: your waiting time gets accumulated per center so its important to apply to centers without a delay, especially if you are not on dialysis. If you are on dialysis, your waiting time begins to accumulate from either dialysis start date or the date your center put you on the list, whichever date occurred earlier. Click on an airplane icon to see if there are commercial flights available from you to the transplant center of your choice. Ask if they use steroid-free (Rapid Steroid Taper) immunosuppressive regime. Given that kidney can have warm/cold ischemic time up to 24 hours, the time frame to get to the Transplant Center can be as long as 5-10 hours. Patients experience shows that its possible to fly commercial flight from California to Florida and get a successful cadaveric transplant.

  • When your creatinine hits 2.8 (or eligible level determined by your transplant center), fill out application forms for the Centers of your choice and fax your tests to chosen Centers. Use E-Fax software to fax your medical documents, so you will have an electronic record.

  • Get an appointment at the Transplant Center. You will view an educational video and meet your Transplant Team, including:

    • Financial Coordinator - verifies your medical insurance and will request pre-authorization for the transplant services
    • Social worker - makes sure you are mentally and emotionally strong and ready for transplant
    • Nephrologist - confirms the demise of your kidneys
    • Dietician - goes over renal diet, prior and post transplant
    • Transplant Coordinator - reviews your medical history and requests additional tests if needed. Responsible for adding a patient to UNOS list.
  • Wait for the Transplant Team to get together for the committee review meeting where your case will be presented. Some Transplant Centers have their committee meeting every 6 weeks, significantly increasing the evaluation time for the patient.

  • Yearly check-up: Every year you are on the list, you would need to repeat your medical tests. That will ensure you are able to survive the surgery and thus can be allowed to stay on the list. So bring your most cheerful attitude.

  • Monthly PRA kit blood draw: Every month, you need to mail your transplant centers a tube of blood drawn at your local laboratory. Its necessary for your transplant center to have a fresh PRA kit from you every month, so they can run a crossmatch between your blood and potential donor. If they do not have monthly PRA kit, you are not being matched and there is no chances for a kidney offer. Some centers require monthly PRA kit from everybody; while other centers limit the monthly PRA kit requirement to patients that are closer to the top of the list. Even if you are at the bottom of the list, there is always a chance for a 6 out 6 (a perfect matched) kidney; so its advantageous to list at the center that require your PRA kit monthly.

  • Your compliance with transplant center health professionals during your kidney transplant evaluation is paramount. Your ability to follow transplant health professionals directions, be receptive to their instructions and prompt submission of needed documents and test results are viewed as an indication of your ability to adhere to immunosuppresent protocol after transplant. You could be found incompliant anytime and will be deemed incompliant until proven otherwise by a special committee. Another words, if your transplant coordinator asks you to do 10 push ups, I suggest you do 20.

Advantages of multilisting:

  • Shorter wait time to receive kidney transplant
  • Access to expanded pool of kidney offers
  • Ability to test several living donors at once.

Cost of multi-listing

  • Initial Evaluation: copay for the doctor's visits for required medical tests ($200) and flight to the center with 1-2 days hotel stay ($200).
  • Travel for transplant and post-transplant lodging: Transplant Centers require visits to the post-transplant clinic at least once a week for the first few weeks after kidney transplant to monitor the patient and administer necessary infusions, etc. Meals, transportaion and lodging are covered (fully or partially, depending on your insurance benefits) by health insurance and could run about $3,000-5,000.

    Some insurances, for example, AETNA, reimburse up to $10,000 of the travel and lodging expenses. Anthem policy allows reimbursement of up to $50 a night for patient and $50 for caregiver for a total of up to $100 per night.

Getting there:

Transportaion options include:
  • Driving ($100-200). 2-hour drive from San Francisco to Sacramento or a 5-hour drive from Philadelphia to Pittsburgh might cut your waiting time from 10 years to 3.
  • Using commercial flight (up to $1,000). Click on checkout flight schedules to check out flights schedule and flights availability.

    Commercial flights between big cities frequently available throughout the day: a commercial flight from New York to Pittsburgh is just 1 hour 30 minutes and takes off every hour.

  • Renting out a private jet. The cost of charting a private jet vary (about $1,500-$3,000 per flight hour). Air Charter Guide features comprehensive list of air charter operators in US.
    Are you located in San Antonio, Texas and insured by Medicare? Air Medical will fly you from San Antonio area to a transplant center with the shorter wait and your Medicare will pay for it.
Temporary relocating to the local area close to the transplant hospital is another option. The Iowa Methodist Transplant Center has 6 months wait for all blood types (might be longer for sensitized patients) and moving to Iowa for few months might be a possibility.

Health Insurance and multi-listing

  • Commercial insurance You are not bound by the state borders and can travel for a transplant out of state. The number of the Transplant Centers might be limited by insurance. AETNA covers transplant at certain centers. Anthem BCBS covers most of the Transplant Centers across the US.
  • Medicare eligibility - at the month of transplant or 3 months after starting dialysis, its important to stay working and maintain commercial insurance to obtain a preemptive transplant. Typically, an insurance is billed $100,000 for kidney transplant. Medicare covers only 80% of it, so the remaining 20% is covered by supplemental insurance, in most of the cases, Medicaid. If a Medicare covered patient lists in a different state, the Medicaid, being a state insurance might not cover the expenses. That leaves the patient with $20,000. There are several fundraising web sites to raise the money:
  • Individual insurance As of 2014, Affordable Care Act prohibits insurance companies from excluding anyone with a pre-existing medical condition from coverage. UPMC individual health insurance plan covers transplant in both Ohio and PA. For the individual insurance in your state, check out The Health Insurance Marketplace.

Employment and waiting list:

The researchers found that unemployed folks are less likely to be put on the kidney transplant waiting list and get kidney transplants than employed patients.

Medical Tests

Multi-listing Strategy

Choose high volume transplant center if:
  • Your PRA (antibodies level) is high (all blood types)
  • You are blood type B

Post transplant cost

With the help of medical insurance, the immunosuppresent drugs cost just a copay, which could be 20-40$. The cost of the immunosuppresent drugs without medical insurance:

  • Prograf (1340$)
  • CellCept (960$)
  • Bactrim (20$)

Post transplant care

Transplant centers require you to stay near the hospital for few weeks after your transplant. The doctors appointments ( and your travel to the transplant center) will taper off to twice a week, than once a week, twice a month, etc. Once you are stable, you might opt to receive follow up care at your local doctors office. After about 3 months post transplant your care will consist of:

  • monthly blood check
  • yearly cancer screenings (skin, mammogram)

3 year coverage cut off

Currently, Medicare covers 80% of the cost of immunosuppressive medications for 36 months after transplantation (for those whose Medicare entitlement is based on ESRD). Despite of media and transplant community attention to the issue, the Bill by Senator Burgess to extend the immunosuppresent coverage has not been inacted.

FMLA and employment termination

US practices at-will employment, ie an employee can be dismissed by an employer for any reason and without warning. You job is protected while you on FMLA recovering after your transplant surgery and you may be legally entitled to finite amount of additional time off as a "reasonable accommodation" that's required under the Americans with Disabilities Act (ADA). Quick-trigger firings after FMLA leave are common among newly transplanted employees and the outcome of the associated lawsuits depends on the timing between firing and duration of time elapsed after FMLA ended. Consult your lawyer.