Here in Part Two of my kidney story, I share my experience going through the evaluation process of being a Living Kidney Donor at the Mayo Clinic in Jacksonville.
The purpose of the evaluation is to see if I am healthy enough to donate, be sure I am doing it for the right reasons and that I have all the information needed to make the decision with no regrets.
The first steps after completing the online application answering questions about my medical history, were to get blood drawn and wear a blood pressure monitor for 24 hours.
As we live five hours from Jacksonville, Mayo sent me the tubes for the blood draw and the blood pressure monitor. All I had to do was get the blood drawn locally, wear the monitor, and mail everything back. Everything was pre-paid. I discovered that all medical expenses for the donor are paid for by the recipient’s insurance.
I found out from the blood draw that I am not a match for Liz because we have incompatible blood types. Rather than give up, I entered the Paired Donation program. Kidney paired donation allows two (or more) recipients to trade donors so that each recipient can receive a kidney with a compatible blood type. I can donate my kidney to someone who is a match for me and Liz will get a kidney from someone who is a match for her. This allows more people to get much needed kidneys.
Next I was scheduled for 4 days of appointments at Mayo.
Bob came with me to learn what he will need to do to take care of me, and to help me process all the information. I also wanted him there in case they discovered I had a serious medical problem.
Here are the highlights from each day.
Day 1 — My first appointment was with the transplant kidney doctor. Right off the bat, I learned kidney donation is a bigger deal for the donor than I realized. The point that it is major surgery that carries risk was brought up over and over. The details made the reality set in:
- The surgery is hand assisted laparoscopic surgery with an incision the length of a fist (to reach in and get the kidney out) plus 2 small incisions for the camera and surgical tool.
The surgery lasts 3-4 hours long. Bob will be sweating it out for about 5 hours total while I am being prepped and brought to recovery.
- The donor is in the hospital for 2-3 days and will have a follow up appointment with the surgeon 7-10 days after surgery.
We learned that living with one kidney is the same as living with two . Twenty years of data show extremely low rates of kidney failure for the donor.
I had lots of tests, including multiple blood and urine tests, ECG, ECHO, chest x-ray. It was a little concerning to get a call from the RN Donor Coordinator that there was something on the chest x-ray that they could not identify so they were adding a chest CT scan to my schedule. (I was already scheduled for a CT scan of my abdomen and pelvis).
Bob was worried but we remembered it would be good to know if it turned out to be anything critical and that we were at a great medical facility. We are blessed.
Day 2 started out with a nutrition class for both transplant participants and donors. I love meeting fellow RDNs (Registered Dietitian Nutritionists). Elizabeth Bailey, the dietitian, was great and had some handy resources for me in helping my clients with CKD (Chronic Kidney Disease).
One of my big tasks for the day was collecting every drop of urine for 24 hours. The point is to see how much creatinine my kidneys clear. I was glad I happened to bring a backpack on the trip to carry the jug around. You see people undergoing all kinds of tests at the medical center. It was weird hearing it slosh around while shopping at TJ Maxx.
I also had a stress test with ECHO. Being someone who never has medical tests, I found it fascinating.
Day 3 was the day for CT scans of my abdomen, pelvis, and now chest. Thirty years ago I had an allergic reaction to contrast dye, so they had me “pre-medicate” with steroids 12 and 2 hours before the test to counter any allergic reaction. It worked and I had no problems with dye being injected so they could see my anatomy.
I learned that the two most common reasons donors are medically rejected are: (1) they discover they were born with only one kidney; and (2) the blood vessels are too small to connect with recipient’s.
My other appointments were with a pharmacist and a social worker.
I learned from the pharmacist that I should take potent narcotic pain medicine after surgery, even though I am afraid of addiction. She assured me I would be on no long lasting meds but that I need to have my pain managed so that I can move while I heal.
I was assured that I would be on those medications for a very short time. I also learned that NSAIDs, which include aspirin, naproxin (e.g. Aleve) and ibuprofen (e.g. Motrin) should not be used when having a sole kidney. Acetaminophen (e.g. Tylenol) is recommended.
The social worker did a complete social evaluation. The good news is I learned that Mayo is affiliated with a facility that allows transplant and cancer patients to stay at a fraction of the cost of hotels (as long as there is space available). If I donate, we would like to stay there until our follow up with the surgeon.
Day 4 I had appointments with a psychiatrist, kidney doctor, and transplant surgeon.
The psychiatrist asked questions that once again, hit home the reality of choosing to have a major surgery.
- How would I feel if my daughter needed a kidney and I had already donated mine?
- How will I handle complications and pain?
- What if my kidney was rejected by the recipient?
She made it clear I will have to be cared for, and not in my comfortable caregiver role.
It felt scary and good at the same time. Scary, because I was facing the fact that bad things can happen. Good because I am better prepared to make the right decision about donating and know what I need to do to prepare.
Later that day I met with the kidney doctor from Day 1 who went over all the tests results that were available. The unidentified spot on the chest x-ray was revealed on the CT scan to be a 7cm (big) cyst on my pericardium, the sac around my heart. The transplant doctor showed us the CT scans. He explained that the pericardium cyst probably developed before I was born and over the years has filled up with fluid from the sac. Luckily it’s not a problem and nothing needs to be done about it. The other good news is that I have two kidneys with “good anatomy”.
The doctor also went over the details of the surgery. The biggest complaint donors have is abdominal pain, bloating, and constipation. This happens because your intestines are “put to sleep” for the surgery and it takes about two weeks to fully “wake back up”.
I was told that every day gets a little better than the day before. The doctor said remembering that your discomfort is saving a life helps people get through it.
Next, the Living Transplant Selection Committee will meet to discuss my case to see if I am a suitable donor, and determine if any further tests are required.
Mayo Clinic has a well deserved excellent reputation, and the evaluation exceeded our expectations. They give me unlimited opportunities to ask questions and have supported me along the way so that I can be 100% sure of my decision. They never dodge any questions, try to hide anything or apply any pressure.