Yesterday, Mark and I traveled to Baltimore to meet with the kidney transplant screening team at the University of Maryland Medical Center.
The time leading up to the appointment was nerve wracking for the both of us. Mark had every right to be nervous. He’s the one that needs the transplant and it’s a huge life altering process to go through. As his fiancé and support person, I was just nervous hoping that everything would go smoothly and that the screening process would be as painless as possible for him.
The screening process was an all day event. We had to arrive at 7:45am and were told to expect to stay until 4:00pm. This is because the appointment is scheduled every month, with multiple prospective kidney recipients attending at the same time. Each prospective recipient is required to be evaluated by several members of the kidney transplant team before they can be considered for placement on the United Network for Organ Sharing (UNOS) list.
Once we checked in, Mark gave the receptionist the paperwork that he was required to fill out before his appointment. Most of it consisted of medical history, as well as medical information access consent forms.
He was given a folder filled with literature on different aspects of the kidney transplant process.
He was also given a checklist for each type of provider that he needed to meet with during the day:
- Social Worker
- RN of the Day
I really liked how this was set up. While it’s a long day, he was able to meet with everyone that day rather than scheduling many appointments that would require multiple trips to the hospital.
The process is a little bit different for recipients who are using a living donor because the living donor also has to go through a thorough screening process. It appeared that all of the recipients there yesterday were going the deceased donor route.
Mark had his vitals taken (blood pressure, temperature, and weight). Afterward, we met with the RN of the Day that gave everyone an overview of how the day would go. We were also shown an educational video on the transplant process: what happens before, during, and after the transplant surgery.
Mark was asked to sign consent forms that would specify what organs he was willing to accept or not accept from deceased donors. I learned that there are three different classifications:
- Standard Criteria Donors (SCD) – These donors are usually under age 50 and have kidneys that are in good health. They have no known preexisting conditions that would negatively affect the kidneys, like hypertension and diabetes, that caused their death. The cause of death is usually a traumatic event that causes brain death, like a car accident.
- Expanded Criteria Donors (ECD) – These donors are over age 60, or they are between the ages of 50-59 with two of the following: hypertension, a creatinine level of 1.5 or over, or cause of death is a stroke.
- CDC High Risk Donors (CDCHR) – These donors have been classified by the Center for Disease Control (CDC) as high risk donors. These include donors with a history of IV drug use, hemophilia, prostitution history, high risk sexual activity, exposure to HIV and jail sentencing.
Standard criteria donors pose the least amount of risk as far as the health of the donated kidney and the success of the transplant. Expanded criteria donors pose a higher risk that the kidney is not as healthy, while CDC high risk donors pose the greatest risk. Each recipient has the right to accept or reject any or all of the different classified organs, and consent can be changed at any time. So if a recipient initially decides to only accept a standard criteria donated kidney, but later decides they will accept an expanded criteria donor and/or a CDC high risk donor, they are allowed to change their preferences. The only thing that the recipient needs to do is sign a new consent form.
While the standard criteria donor kidneys offer the least risk, it can also take longer for an offer. Consenting to extended criteria and/or CDC high risk donors may decrease waiting times for transplantation.
We also learned that he is allowed to network with more than one medical facility. It’s in his best interest to go to a different geographic area with a different donor pool. It was also comforting to learn that his time accrued on one list can be transferred to another medical facility if need be. So if his wait time is two years on another hospital’s waiting list, but he decides he wants to transfer that time to University of Maryland’s list, he can do so.
After the education session, we met with the providers listed above. He was evaluated by a cardiologist, nephrologist, and a surgeon that performs the surgery. Each performed a brief medical exam and asked for a thorough medical history. Mark also met a phlebotomist that did a complete blood workup, a dietitian that consulted with him on his current diet and how his diet would change after the transplant, as well as a social worker that assessed what kind of social support system he has in place and how he will cope with life post-transplantation.
One of the more interesting (and shocking) meetings was with the financial coordinator. Her job is to discuss the costs involved with the transplant, as well as evaluate whether or not the patient has the ability to pay the costs that are incurred. This includes proof of adequate health insurance coverage.
We found out the average cost of a transplant surgery only (not including anesthesia or any other services) is between $90,000-$100,000. Luckily, insurance is not currently an issue, but there are people waiting for organ transplants that have no insurance. The financial coordinator that we met with told us a story about a patient that she had worked with in the past that was so desperate to get off dialysis and have the surgery that he went ahead with it without any insurance. I won’t get started on the health care laws in this country. I know there are extreme differing opinions. All I will say is that I don’t think it’s humane to allow someone to go bankrupt in order to save their life. It infuriates me.
Post surgery, a kidney donor recipient has to take anti-rejection drugs for the rest of their life. We were told the number is in the ballpark of twenty different medications. Here’s the kicker. Without insurance coverage, like Medicare, the out-of pocket cost is over $5000 PER MONTH.
We also learned that insurance covers the cost of removal of the kidney from a deceased donor. If a recipient chooses to use a living donor, insurance will cover most of that cost as well. The only thing the living donor is responsible for is preventive screenings that they should be having regardless, like a colonoscopy or pap smear.
After all of these meetings, we met one last time with the RN coordinator who wrote scripts for additional testing that Mark needs to complete. One of the most crucial tests is a blood test to determine blood type. Apparently, there are different waiting times depending on blood type. The shortest waiting time is for AB blood type, followed by A blood type. These waiting times are usually a matter of months to one year in the DC area. The longer waiting times are for O and B blood types, which is upwards of 5 years.
After a long day, we were pleased with the outcome of the visit. Every provider who met with us seems to think that Mark is a great candidate. I was also extremely comforted by their high level of professionalism. Each person was very knowledgeable and took the time to answer our questions. The icing on the cake was that everyone was so incredibly nice. I couldn’t be more pleased with our experience.
The University of Maryland transplant medical team committee meets every Friday to review cases. Each team member makes a case as to why the patient would be a good candidate for transplantation or not. If approved, the patient is added to the list. Then the waiting game begins.
I know that there are thousands of other people in Mark’s shoes as a recipient and in my shoes as a family member supporting a recipient. I plan on documenting as much of this process as I can in hopes that it provides comfort to others who are beginning the process. The unknown can be very scary, so I hope my words can ease some fear.
For now, I will leave you with a thought to ponder. Please consider becoming an organ donor. It’s something that I thought about in the past, without a real connection to it. Now that I have seen my loved one go through it, it’s very personal. Kidney failure is rough, and can take a real toll. Dialysis is tough, and Mark has handled it like a trooper. But he’s young and deserves to have his life back. You can give that gift of life to someone.
You will also love:
- 2013 Northern Virginia Kidney Walk
- Walking for Our Kidneys: An HLB Giveaway for a Great Cause
- A High Sodium Diet: The Scary Truth
- Team Robin