What made you want to become an Ambassador?
I wanted to help people try to avoid some of the pitfalls I had to deal with when I was dealing with kidney disease.
How has being an Ambassador helped you?
It helped me work on some of my public speaking as far as getting over that fear. We've been doing a lot of Zoom meetings now and I'm not getting freaked out. People are paying attention to me and asking questions versus me breaking out in a cold sweat and saying, "Oh no. Not me. Please don't ask me."
What have you learned from being an Ambassador?
I've learned you have to be patient. Because even though we go and we speak [with lawmakers] and try to fight this stuff, you have to sit and wait for the decisions to be made. And you wait for the process to move along hopefully in our favor.
Why should others become an Ambassador?
Because of the fact that each voice gives a new perspective. And something they've experienced might be something that someone else is going through, or something someone else might have a question about but they're too afraid to ask.
What is something you've learned about kidney disease and dialysis that you wish you knew a lot sooner?
It's ok to choose a different doctor. You can get a second opinion when it comes to trying different modalities.
How would you like to stay connected to other Ambassadors?
If someone wants to talk and they're in my area, I'd be glad to make that happen once we're out of COVID-19.
What are your best tips to navigating the transplant process?
I went through it twice. My first time, my body rejected the kidney because of complications from being on dialysis for a long amount of time. So knowing the fact that upfront there is a possibility that your body could reject a kidney even though the deceased donor is compatible with you. My second transplant I got from a living donor. But I had complications. I was in surgery a lot longer than expected. It would be nice after the fact, especially with a rejection, to talk with someone who has been through that.
What do you wish elected officials knew about kidney disease?
It affects everyone differently. Some people can get kidney disease and be fairly active and for others it is very draining. It takes a lot of effort and zaps the energy out of you, not to mention insomnia is one of the side symptoms.
Do you have any advice for newly diagnosed kidney patients?
My advice would be to definitely make sure that you try to be your own advocate, or get someone to assist you with the doctor appointments, just because it's really easy for everything to get blamed on the kidney disease. You could have something else going on besides the kidney disease. Also, some of us can take the news, and some of us, when we hear certain things, everything is ignored.
What do you wish other family members knew about kidney disease or knew about helping others?
With family they need to learn to try to let the person do what they can first and ask for help, instead of just trying to swoop in for the individual. It is OK to deal with the fact that they may get pushed away. The person dealing with the kidney failure will be upset and if you're pushing while they're coming to terms with everything they may push you away.
What are some interesting facts about yourself that you'd like to share?
I did take some time off when I got my kidney disease and was on disability for a while and dealing with depression. During the process I was able to get out of it and start dating and met my wife. I decided to get back to work and I took the time to look in and deal with the things I wasn't dealing with or didn't want to deal with. It's OK to sit back and take time to figure out what you want and where you want to be and that's what I did during my process.