Practical Advice From Living Kidney Donors

We interviewed living kidney donors about the things they wished they had known before donation and what advice they had for future donors. Here’s what they said.

Before Surgery

Packing For Your Surgery

Right Before Surgery

After Surgery

 

Before Surgery:

  • Do as much research as you need to feel comfortable, and always ask questions.
  • Make a written list of your questions and concerns and bring it to your appointments at the transplant center. In the moment, it is easy to forget to ask something.
  • If you’re comfortable having someone sit in on your evaluation appointments, ask that person to take notes. That way, you can focus on listening to the information. Your companion can also help you to ask questions. If your companion is the one who will be helping you during your recovery from surgery, joining you during these appointments provides them a chance to ask any questions they might have.
  • Transplant protocols can vary slightly from one transplant center to another, including how potential donors are evaluated and where the incisions are placed during surgery. These differences are usually small and should not affect the safety of your donation, but some donors reported being surprised that there were slight differences between transplant centers.
  • Educate your family and friends about the process.  This will make them more comfortable but also teach them how they can best support you during the evaluation process, surgery, and your recovery. Encourage them to do their own research, or pass along resources that you found helpful.
  • Some donors get frustrated waiting for the donation to happen. Because transplant centers try to be very careful and thorough, the evaluation process can take 3-6 months. Some donors recommend journaling as a way to keep a record of your experiences and vent any frustrations you may have.

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Packing For Your Surgery:

  • Pack comfortable clothes to wear after the surgery, but avoid anything that would be tight around your waist (such as sweatpants with a tight waistband). Most donors wear hospital gowns until they are ready to go home, since these gowns are less restricting and you don’t have to worry if they get dirty.
  • Remember to pack toiletries, like a toothbrush and a hair brush. Of note, most donors do not shower in the hospital because they have bandages on for a few days and then they go home. Therefore, you may not need all of the toiletries you normally bring on an overnight trip.
  • Pack a pillow for the ride home from the hospital. The ride home can be painful, especially if you have to go over bumps! Having a pillow that you can squeeze against your belly will provide some support and hopefully make you more comfortable.

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Right Before Surgery:

  • When you meet with the anesthesiologist (the doctors who help you stay asleep during surgery), you may be asked if you get nauseous after surgery. Many people do feel nauseous when they wake up from anesthesia; this is a side effect of the medications that help you sleep during surgery. If you are worried about feeling nauseous, you can ask them to give you anti-nausea medications before you wake up.  Even if you don’t, you can ask for anti-nausea medications as soon as you wake up.  You should know that there are several medications that can help with nausea, and different people respond to different medications.  If one anti-nausea medication doesn’t work, let your team know and they can try another.

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After Surgery:

  • Get up and walk as soon as you can after surgery.  You may be in a lot of pain or you may feel like you can’t walk, but you should try.  It really does help with the pain, since it gets your bowels moving and prevents the buildup of gas in your belly. As one donor told us:
“It’s important to get up and walk right after the surgery.  I wish I had known that. It hurt a lot and it was hard to sit up, but once I got up and started walking, that helped a lot.  A lot of people told me that afterward. That would have been nice to know.”
  • After surgery, you may not feel like eating for the first day or so. This is partially due to the anesthesia and pain medications that you received. Most donors eat clear liquids and then work up to normal food as they can tolerate, but they may not eat a big meal until after they go home from the hospital.
  • If you’ve never had surgery or stayed in a hospital before, it can be a slightly strange experience. You will be wearing a hospital gown most of the time, doctors and nurses will look at your incision and ask you about your bowel movements, and going to the bathroom on your own will seem like a big accomplishment, at first. Your medical team will tell you things are “normal” even when you don’t yet feel normal. This is all a part of being in a hospital and recovering from an operation.
  • It takes a different amount of time for each donor to feel normal after surgery.  Some living kidney donors told us that they felt better so quickly, they wished they had known they wouldn’t need to take so much time off.  Others told us that they felt a little bit fatigued for several months after surgery. The range of experiences highlights how your recovery process is unique. If you’re ever worried that something isn’t normal, you can reach out to your transplant team. However, most of the changes that donors experience after donating will resolve on their own after a couple of weeks or months.
  • After surgery – even months to years after surgery – some donors can feel paranoid that any symptoms they experience are due to their donation. Since most donors are very healthy before they donate, they may never have experienced any illnesses or had surgery. Therefore, it can be hard to know what to expect. Your transplant center is required to follow your health for two years after your donation. Not all of these visits will be at the transplant center, but they should receive the results of your blood work and doctor’s visits. After those two years, we recommend that all living kidney donors see their primary care doctor for check-ups every year for the rest of their lives.  This is a good time to ask about any concerns that you have. If there is a transplant-specific question, they might have you get in touch with your transplant team.  While living kidney donors are not required to follow up with their transplant centers beyond those first two years after donation, please know that your transplant center is always a resource.
  • For non-directed donors (living donors who decide to donate to a stranger), it is a very personal decision whether or not you want to meet your recipient. Many people decide to meet their recipient, but many people also decide to remain anonymous and not meet their recipient. If you do not decide to meet your recipient, the hospital may reach out to you in the future to see if you have changed your mind.  If you still are not interested in meeting your recipient, that is completely okay.  You should not feel pressured to decide one way or another. Sometimes, it is the recipient that doesn’t want to meet. You need to know that this is a possibility, and that we must respect the recipient’s desire to remain anonymous.

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