Timing is a funny thing. After I called to follow-up, the Transplant Center at Carolinas Medical Center (CMC) told me I had to be at a mandatory class in two weeks. In the interim, I went to the local hospital for abdominal pain. Even my kidney doctors couldn’t determine the cause. Then a few days later, I attended the required transplant information session. I include a lot of detail below in hopes that it prepares you if you are suffering kidney failure and are considering transplantation.
CMC opens the seminar to each potential transplant candidate and his or her support person. No children are allowed, and for good reason. The session lasted several hours, and the coordinator gave each patient a folder full of information. Because this was my second request for a transplant, I knew much of the information presented, but I still learned and heard changes in the program since 2006. It might have changed some since 2013, so I will tell you what I believe remains constant.
The nurse coordinator introduces who we will meet during the transplant interview process by explaining what each person does. We will see each of them at least once in the quest to see if we qualify for a kidney in CMC’s program. Then she reviews the kidney evaluation process.
TRANSPLANT TEAM MEMBERS:
- Nurse coordinator
- Social worker
- Transplant nephrologist
- Financial coordinator
- Transplant surgeon (different from the transplant nephrologist)
She adds that other tests and consultations might be required as time passes. Since my class, the team has also added a disease specialist.
- Annual TB test (provided and required at dialysis)
- Pap smear* Dictated by age
Other requirements are to maintain weight and discuss living donation with friends and family. (More information on this below.)
Financial information and follow-up
No housing is available for transplant patients. (Although some grants help with paying for a local hotel or apartment.)
- Medication after transplant is the biggest expense (In 2007, costs for the first year, without Medicare Part D, were estimated to be $350-$500 per month.) Most people suffering from End Stage Renal Disease (ESRD) are eligible for Medicare for up to three years after transplantation. Extenuating circumstances can (extend) affect coverage.
- After your transplant exams and interviews, the medical team discusses your case as a committee and might call for more tests.
- Being sick or on antibiotics can revoke your eligibility, generally temporarily.
UNOS, an invaluable resource for patients
UNOS is the United Network for Organ Sharing, a non-profit charitable organization. They do many things in the transplantation process, but they provide more data than you can digest on their website. UNOS maintains a national transplant database, monitors transplant center compliance, maintains transplant policies, maintains multiple listings, and manages wait time transfer and organ distribution. Kids get priority. (This information is taken directly from the notes and might have changed since 2013.)
Critical information to remember
Patients must complete all evaluations to be approved for transplant. The effective date for the wait list is back-dated to the first dialysis treatment. Although my I was approved in June, my initial wait list date is the date of my first dialysis treatment in April.
Consider that kidney donors can be deceased, living and related, or living and unrelated. Living donors must be over age 18 and in good health. Approved donors’ risks are considered minimal, and quality of life and life expectancy are unaffected after donating a kidney. Our kidneys are able to grow to compensate for diminished capacity or absence of a kidney removed for donation or cancer, for example. Also, the donor’s medical work-up is covered by the recipient’s insurance. Medicare is generally primary insurance, followed by secondary insurance or supplementary Medicare insurance.
Six things must match
For a transplant to be approved through UNOS, these six matches are required: 1) Blood type 2) Human leukocyte antigen (HLA) (tissue typing) 3) Time waiting 4) Medical urgency 5) Antibody level 6) Geographic area/Availability.
High antibodies put you higher on the list. Someone like me, who has had a transplant, blood transfusions and (not my case) pregnancies has more antibodies. O+ is the most popular blood type, and because O- is the universal donor, they are on the list the longest amount of time because O- blood types can be donated to A, B and AB blood types if other factors are favorable. At CMC, 46% of kidney patients in need of transplants are type O. As of February 5, 2016, in North Carolina, 2,613 people needed a kidney transplant. More than 100,000 patients in the United States are in need of a kidney transplant, which is about 83 percent of all patients who need transplants.
LOTS of forms to read and complete
With all of the information presented, I still learned more when I read through the patient packet.
- Transplant center info: unos.org, www.ustransplant.org, www.optn.org
- Finances –Handouts such as “Manufacturer Patient Assistance programs for Rx (Prescription) and Transplant”,“Transplant Fundraiser Programs”, and forms for the National Foundation for Transplants provide fundraising and grant programs to pay expenses not covered by public or private insurance, as well as lodging assistance.
- Medicare eligibility information
- Details about surgery and immediate recovery, complications, rejection immediately after surgery or years later. Some rejections are treated as outpatient, while others require hospitalization. She reviews organ damage, failure, and return to dialysis.
LOTS of duplication in handouts, flyers, booklets
She shares information about support groups in the area, but I find support groups to be more depressing than helpful. To be fair, I’ve never attended support group meetings in our area. However, I know other patients who enjoy the camaraderie of the support group at CMC.
The day after class, I woke with a distended abdomen that made me look several months pregnant and went to my local kidney doctor before ending up at the hospital that provided my transplant six years earlier. The doctors determined I had kidney failure, and I was about to face dialysis indefinitely. So I share my journey to let you know others go through similar─and sometimes starkly different─experiences. But we are not alone in our travels.
If you or someone you care about is facing dialysis, please share your experiences and concerns. This is a forum for learning and inspiration. Please share your stories and questions. What were your experiences and challenges with dialysis?