When my nephrologist told me that I needed to start considering the possibility of having a kidney transplant, I was in shock. I knew I had bad kidneys, but I had been in denial. I was hoping my kidneys would just stay in the same condition, and not quit working altogether.
Unfortunately, it doesn’t work like that. One of the worst parts of kidney disease is that you can do everything you are supposed to do and still be sick. Even though I do my absolute best to stay healthy, a transplant is still my best course of action.
To be considered for a transplant, one has to be evaluated at a hospital transplant center. I had to fill out a very comprehensive medical questionnaire and provide all of my medical records and insurance information. Once I completed that part of the process, I was invited to the hospital for an in-person meeting.
I live at the very tip of Cape Cod. The nearest hospital with a transplant center is in Boston, a two-and-a-half-hour drive away, at best. Despite having no hospitals near me, I did have my choice of some great ones in Boston. I chose one based on the reputation of its transplant surgery team. After meeting the team in person, I was even more confident I’d made the right decision.
My husband and I drove to Boston the night before to avoid getting up at the crack of dawn to travel. I learned that most hotels offer “hospital rates” for guests who are in town for medical appointments. It’s usually a lower nightly rate than what they advertise. You just have to request it.
The transplant evaluation process lasted all day, even going straight through lunch. Luckily, I had brought a snack. The day began with a description of the transplant procedure. I met with a nephrologist, a surgeon, a pharmacist, a nurse coordinator, a donor coordinator, and a social worker. We went over my physical, mental, and financial needs. They explained what I should expect, such as potential side effects from the medications after the transplant, as well as the length of time I will need to recover. It was a long day of questions and discussion.
The process can be a bit overwhelming, so I was glad my husband, Paul, was with me. If you have the chance, take someone with you. It is a lot of information for one person to process. A partner can write things down for you and ask questions you may not think about. They will likely remember things that you don’t because their focus is on caregiving, not undergoing an operation. They have a completely different perspective of the whole thing. Having my husband there also helped because he knows when I’m getting nervous or stressed and can take the wheel of the conversation while I rebalance. No one knows you like your spouse, family, and friends. It’s been great to have the support of those close to me throughout all of this. They check in with me every week to inquire about the latest news.
The evaluation involves quite a few medical tests, so be prepared. What the transplant center needs to know is that you are in good enough physical condition to fully recover from the operation, and have a successful transplant. I’ve had a colonoscopy, a CT scan, a chest x-ray, an EKG, and a stress test – sometimes having several tests all in one day! This does not include the countless vials of blood they’ve collected from me. They must know your blood and tissue type, and test for antibodies to be able to match you with that perfect kidney.
After the transplant team has all the information it needs, they decide whether or not to accept you into their program. If you are accepted, you can be added to the nationwide kidney transplant waiting list. The whole process takes time, and it can be stressful waiting for answers. I am fortunate. The surgeon told me I am the perfect candidate for a pre-emptive kidney transplant, which means I may be able to avoid dialysis altogether. It’s important to note that if you are not accepted by one transplant center you can always apply to another in a different region. You can waitlist at multiple centers at the same time.
My team is now in the process of testing my potential donors. I am grateful to have made it through the first part of this process, but I’m looking forward to the day when this entire experience is behind me. I can’t wait to feel better. Even though I don’t know yet who my donor will be, I am already grateful. In my mind I am thanking that special someone who will make this transplant a reality for me, allowing me to move on and take care of my gift of life.
I created a website to help get the word out and I encourage you to do the same. www.kidney4bo.com
More about pre-emptive transplants and finding a kidney donor from RSN
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