Interviewed by Simi Juriasingani, Noah Varghese and Katarina Zorcic
Lesley Latchford’s father was diagnosed with chronic kidney disease in 2003. By 2012, it was clear that he would need a transplant eventually. Lesley donated one of her kidneys to her father in February 2017. We recently had the opportunity to speak with her about her experience.
Part 1 of her interview can be found here.
Looking back on your journey, is there something you wish you’d known before going through with the kidney donation process?
Lesley: Not really. The coordinator that I worked with was so great and followed up after my surgery to check in. As soon as I came out of surgery, she was there.The transplant team was very supportive. They were always saying, “You can change your mind and it’s okay.” They made you feel like there was no pressure from their end. Even if someone had told me that the recovery was going to be that painful, I still would have done it.
Was it ever made clear to you exactly how they would handle the situation if you did withdraw your consent?
Lesley: In our case, my dad knew what was going on every step of the way. If I was going to say, “I’ve changed my mind,” I would probably have that conversation with him first before I let the coordinator know. In an anonymous donor situation, if there was somebody who needed a kidney and I anonymously went through the testing, but then I changed my mind, then they would just say to that person, “We’re sorry, we no longer have a donor for you,” and then move on. They would never have known who I was because it’s all anonymous if you just donate to a stranger.
Could you describe some of the factors that organ donors need to think about while considering donation?
Lesley: It does take time, because you have to take time off work to go to do all these tests. You have to have a supportive work environment if you’re working. I had to make sure, post-op, that my husband could step up a little more and take the kids to school and do those things that I would normally do. My mom had to look after my dad, so she couldn’t be looking after me. Somebody considering donation needs to have a good support system. That just makes it less stressful with making a decision and not having to worry about other aspects of your life.
What advice would you give to someone who’s considering donating an organ to a loved one or a family member?
Lesley: It’s just a moment in time. It was painful for me. I have a very low pain tolerance though, so that could just be my personal experience. As long as everything goes smoothly, the end result is seeing somebody that you love have their life back again after being so sick. I would advise them to make sure they have that support system, to ask questions, and just to be informed. The staff inform you every step of the way.
Obviously, it’s okay to feel scared. It is okay to even second guess. I didn’t, but it’s okay to do that. In the end, this is major surgery, so for some that could be a deal-breaker, but the outcome outweighs, in my opinion, all of that other stuff. You bounce back and you get back to regular life and you don’t even miss it. You don’t even notice that you don’t have the second kidney.
Were you medically advised to take any precautions after your surgery? Did they recommend any diet changes or anything that you would have to be mindful of for the rest of your life per se?
Lesley: Yes, I can’t take any type of ibuprofen, like Advil and Motrin due to their effects on the kidney. However, I can take Tylenols and those types of drugs for pain. It’s been tough because I get a lot of migraines, since before the kidney donation. I used to be able to take super strength Advil, and that would help, but I have to take a prescription for my migraines now. That’s really the only change that I had to make.
Also, during the first three months post-op, I couldn’t eat or use protein powder. I had to watch my protein intake, if I can remember correctly. I don’t remember anything too significant.
What advice do you have for someone who doesn’t have any experience with organ donation or transplant, but wants to get involved with transplant advocacy and learn more?
Lesley: You need to talk to people who’ve been through it since like any disease, the ones who provide the best advice and knowledge are the one who have lived through the experience. For example, there’s a group that my dad has spoken to at the kidney center. It’s like an education series where they have somebody who’s on dialysis to talk about their experience, then somebody who’s received a donor kidney, and then a person who’s donated. I know There would be questions that I probably would have asked to have a better idea of things like, “Oh, what’s post-op like?” I think it’s really important to be able to talk to other people who have been through a similar situation.