Tune in as host Mike Lollo recounts his own donor work up and he and co-host Samantha Hil are joined by Kari Rancourt, Lead Kidney Paired Exchange Coordinator at Hartford Hospital, to discuss everything involved in becoming a living kidney donor. Be prepared to be schooled as the trio discusses everything in the evaluation process from blood work, the 24-hour urine test and more. This is a must listen for anyone who has wondered "what would it take?"
Tune in as host Mike Lollo recounts his own donor work up and he and co-host Samantha Hil are joined by Kari Rancourt, Lead Kidney Paired Exchange Coordinator at Hartford Hospital, to discuss everything involved in becoming a living kidney donor. Be prepared to be schooled as the trio discusses everything in the evaluation process from blood work, the 24-hour urine test and more. This is a must listen for anyone who has wondered "what would it take?"
Speaker 1 (00:03):
Welcome to today's episode of One is Enough. I'm Samantha Hill, living kidney donor recipient and the director of marketing here at the NKR. Speaker 2 (00:11):
And I am Michael Lalo, a living kidney donor and the chief Strategy officer here at the NKR. Speaker 1 (00:18):
Well, turnabout is fair play, right, Mike? Today's episode is your specialty, the donation process. The testing phase of donation can be so confusing for potential donors because there's so many different facets to it. It can also be kind of unnerving. I mean, we're talking about volunteering for major surgery. Yeah. So let's normalize the process a bit and remove the guesswork from figuring out what is involved in getting medically cleared to be a donor. We're going to be joined by an expert coordinator and living donor later. But first much as you took me back to my donation experience, I'm going to be taking you back with certainly not quite as far to your donation experience so that we can do a deep dive on the workup and donation process. So let's begin. Speaker 2 (01:03):
So can I just skip to our guest or do I have to Speaker 1 (01:05):
No, no, no, no, no, no. This is your therapy session. I can't. So when did you donate and what first brought donation to your attention? Speaker 2 (01:13):
That is a great question. So back in 2018 while I was working as a detective with the NYPD, it was April and we have something called an intranet. It's like a police website if you will, NYPD website. And a flyer came over saying that there was a police officer named Tommy Alexander who needed a kidney and there was a telephone number and they asked for people to call. And I don't know anyone who ever donated a kidney. I didn't know anyone that was on dialysis. The closest thing I guess I knew to kidneys was my grandfather who had I think type two diabetes and took a pill and he was fine. So it was a fellow cop that needed help. I remember calling my wife saying, Hey, there's a cop that needs a kidney. Should I call? She's like, yeah, sure. She's like, give me the number.
(02:01)
She's like, I'll call too. So I called the transplant center and unfortunately it didn't work out, and that was it. I put it out of my mind, didn't get a phone call. I assumed the guy got a kidney and I went on with my life. That was April of 2018. And then in August of that same year, so about four months later, New York Post article came out about a guy named Mark Weiner who had a billboard donated to him in Times Square. And so for whatever reason, it was just odd that I was alive for 46 years, never heard anything about kidney donation, and now twice in four months, Speaker 1 (02:38):
It was the year of the kidneys, they were haunting you. They Speaker 2 (02:40):
Was 2018, a good year for kidneys. Speaker 1 (02:42):
Apparently it was for you. Speaker 2 (02:43):
I got to check the NKR stats and see how you guys were doing the 2018 i good. They were pretty good. And so I was one, and now I'm giving the end of the story, but I Speaker 1 (02:52):
Was one is enough. Speaker 2 (02:53):
Oh, very good, Samantha. Very, very good. So I attempted to donate to the gentleman for the billboard, and while I was waiting for the results to come back, I just did with our next guest is probably going to cringe. I googled about kidney donation and the process. And honestly, it seemed like the impact to myself was so small compared to what it could do for someone. I couldn't find a compelling reason not to donate. And then I got the phone And you were Speaker 1 (03:26):
Looking? Speaker 2 (03:27):
Yeah, I did a lot of research. I read blogs and vlogs and all these other things that I found. I watched YouTube videos. I watched a couple of TED talks. I really was searching for an answer why I shouldn't do it, and I really couldn't find one. And then I was told that I wasn't a match and I asked the transplant center, well, I didn't know about the voucher program, so I just assumed I'd have to donate directly to him. I was told it wasn't a match. And that's when I asked the transplant center could I donate as a non-directed donor, a good Samaritan donor. So December of that year, 2018, I contributed one kidney to the National Kidney Registry. I ultimately donated into the NKR. So at the end of that year, December of 2018, I donated as a non-directed donor into the NKR. And what was interesting was I had the opportunity to donate to the wait list at the transplant center that I donated at, or I had one of the best coordinators I think in the United States of America. I'll give her a shout out. Marian Charlton, she's from, she will Speaker 1 (04:39):
Be on later. Speaker 2 (04:40):
She's from Ireland and she gave me the opport. Yeah, well, so the opportunity of either donating to their wait list or donating into NKR and the NKR offers a lot of supports and protections for donors. There's also the opportunity to do a chain, so where it's not just going to one person, you can help multiple people. So ultimately I made the decision to donate into the NKR. Speaker 1 (05:05):
Great. Now we have an expert on the donation process joining us in a bit, not Marian, but she'll be on a later episode I'm sure. But what was the biggest hurdle you ran into when you were going through the workout? Speaker 2 (05:17):
So there was no issues with my evaluation process. The issue that I had during my donation journey was really me. Speaker 1 (05:27):
So it wasn't them. It was you? Speaker 2 (05:29):
Yes, it was not them. It was me and it was me because when I was a little kid, I never liked getting blood taken. I had a bad experience at a doctor's office and it messed me up for my whole life. But as an adult, I've been pretty good getting two or three vials of blood. And in the initial stages of the process, the NKR only asked for three or four vials. I went to a Quest diagnostic, so I thought I had this blood thing down pat, and when I went in for my full day of evaluation, the first person you see is the phlebotomist. I didn't know what a phlebotomist was. That's the person that steals the blood from your body. Steals, Speaker 1 (06:09):
Okay, we're going with Speaker 2 (06:10):
Steals. I never got it back. So yeah, they stole my blood from my body. So I'm sitting there and she's taken some vials out of the cabinets and I made the mistake of counting the vials. So it was like eight, it was 10, it was like 20. And I'm like, what is how many vials she taken out of here? And she got to 25 and now I could already feel my head kind of like, what is going on? This is a lot of blood. And I got to 25 and then she reached into the cabinet and took out three more. So it was 28 vials of blood. I'm like, holy mackerel. No big deal though. I was okay. So she starts to take the blood out and when I got to vial number nine, I told her I'm going to faint. And she goes, oh honey, no you're not. I said, oh, oh, I know myself. I said, I'm going to faint. And she's like, oh no. So she pulls the needle out and she gives me some alcohol swab to put to my nose and I go to get up and she's like, oh, don't do that.
(07:16)
And then I remember waking up on a gurney
(07:21)
And I said, oh, what happened? I fainted. They're like, oh yeah, your eyes went back in your head. Oh my god. And all that stuff. So I was so embarrassed and I told now the head nurse was there and I said, oh, I'm so sorry. I messed everything up for the day. I guess I'll have to reschedule. And she said, oh no, honey. She goes, you're not going to faint laying down. So she goes, we're just going to take the restroom while you're laying down here. I go, oh, okay. Yes. I remember texting my wife that I fainted and she just sent back a big OMG. They're probably putting a big red X on your folder like this guy's going to get rejected. But ultimately the fainting did not prevent me from donating a kidney. Speaker 1 (08:05):
In addition to living through the donation process, you've guided other donors through it as well, Speaker 2 (08:09):
Correct? A couple, yeah. Yeah. Speaker 1 (08:12):
And how does a potential donor go about finding somebody else who's donated to do that with them? Speaker 2 (08:19):
So back in the day when I was donating so long ago, right? In 2018, Speaker 1 (08:25):
That's not long ago. I was the long ago. Mike, you were recent. Speaker 2 (08:29):
Well, I'm old though. I could say back in the day, back in the day 2018, there wasn't really a formalized national type of donor mentoring. So the hospital that I donated at, which was Weill Cornell, they had sort of ad hoc mentoring service. So Marian had some donor's names written down basically on a piece of paper next to her computer that she knew were not crazy out there people. And she would give those donors out to donors that wanted to speak to someone that went through the process. But nowadays we have something called Donor Connect, which the NQR created in conjunction with the National Kidney Donation Organization. So now we have a formalized process for people to speak to a donor if they so choose. Speaker 1 (09:20):
How do they go about doing that? Oh, Speaker 2 (09:22):
It's super easy when they go to start the process, whether it's through our website or the transplant center's website, they're able to, I got to figure out, because it's complicated to explain actually. It Speaker 1 (09:35):
Actually kind of is. Yeah. Speaker 2 (09:37):
So the way someone goes about talking to a donor mentor is when they're going through the intake process, there's a description of the donor mentoring program and they can either continue on, which would then forward their information with their permission to a donor mentor, or if they didn't want to speak to someone at that time, they can click a little button that ops them out and then nobody's going to contact them, Speaker 1 (09:59):
Right? Because it's not mandatory that you talk to a donor. Speaker 2 (10:02):
It absolutely is not mandatory. I personally highly recommend it, but it is absolutely not mandatory, which is really cool is that the NKR has enhanced that process because if someone doesn't feel comfortable talking to somebody in the beginning and then they start going through the process, they get sent to a transplant center and the coordinator thinks that it would probably be a good idea if you spoke to someone that has donated in the past, they have the ability to connect them with one of those donor mentors on their end as well. Speaker 1 (10:32):
Let's just go ahead and welcome our guest for today, the fabulous Kari URT from Hartford Hospital who donated her own kidney through the N KRS Family Voucher Program this past January. Since October, 2015, she's helped grow the Living Donor program at Hartford Hospital, but more than double the volume. Yeah, Hartford's been absolutely one of the best hospitals we've been working with. They're really top tier. She's passionate about educating patients, staff and the nephrology community and the public about living donation. She serves on the operations committee for the National Kidney Registry, the medical advisory board for the National Community Foundation, Connecticut, and as a co-chair of the board of directors for Donate Life Connecticut, Kari has also headlined a lot of our training events. She's a tremendous friend of the NKR and I'm so glad that she was able to come down and join us for this. Absolutely. Welcome. Speaker 3 (11:21):
Hello and thanks for having me Speaker 2 (11:22):
Today. We are super excited. I'm really excited because you are like a unicorn in the transplant world because you're a transplant coordinator, which is absolutely fantastic. Very important part of the entire process, but you're one of the rare people in the transplant community that has actually, what is it? Walk the walk, talk the talk, right? You have donated your kidney. I sure did. And not that long ago, right? Speaker 3 (11:54):
Yep. Back in January I became a non-directed donor utilizing the family voucher program. Oh, Speaker 2 (11:59):
Well we definitely have to get to that. We can to talk about that too. Yeah. So can you share your donation story, why you decide to donate? Yeah, Speaker 1 (12:07):
Why did you decide to be one of the rare ones and donate? Speaker 3 (12:12):
I think it was more rare that I became a transplant professional because I graduated nursing school having no idea what I wanted to do with my career. And on a whim I just accepted a position on the inpatient transplant floor and I just fell in love with it. It was awesome watching people come in so sick and then walk out of the hospital healthy again. And then it was just an incredible change. And so then I would be taking care of donors as well and I thought that is a really cool thing to do. And I kind of told myself at 22, I'm going to do that someday. And I knew definitely at 22 I was not ready to do that then. So it was always kind of in the back of my head and I'd never thought I was going to stay in transplant as long as I did. But one thing led to another and since 2015 I've been working with living donors and it's just been amazing. It's such a good fit and it's probably just because I've always wanted to donate and knew that that was in my future, that I found such a good fit in my role in our department as well. Speaker 2 (13:20):
So you've been working in transplant since 2015? Speaker 3 (13:23):
Well, since 2006. Speaker 2 (13:25):
2006. Speaker 3 (13:26):
I've been working outpatient as the living donor coordinator since 2015. Speaker 2 (13:29):
So why now? Yeah. What took you so long? Speaker 1 (13:32):
What made you finally make the leap? Speaker 3 (13:35):
Well, I wanted to have kids first. Even though I know it's perfectly fine to have kids afterwards, I just kind of wanted to get that out of the way first. Make sure they didn't need any transplants themselves. There's no kidney disease in my family. There were no congenital issues. And then they're a little bit older now, they're four and seven. So it wasn't taking care of small children or babies at the time. And then I figured I'd do it before I got too old. And it was kind of that sweet spot. I was healthy enough to do it. My kids were big enough. It all just kind of lined up. Speaker 1 (14:16):
Now did you faint like Mike did? Speaker 3 (14:18):
I did not. I Speaker 1 (14:20):
Had Have you had donors stay on you? Speaker 3 (14:22):
I have had painters and they're almost always men. That Speaker 1 (14:25):
Makes so much sense. So what Speaker 2 (14:28):
Was the We're big wimps. Speaker 1 (14:29):
You really are. Speaker 3 (14:31):
But I will say it is a lot of blood. Speaker 2 (14:33):
So I dunno if you heard much, I dunno if you were listening earlier, it looks like Speaker 3 (14:37):
A lot of blood. Speaker 2 (14:37):
It's not that much blood, 28 vials, that is like 28 gallons of blood, right? No, Speaker 3 (14:44):
Not Speaker 1 (14:44):
Even close, Mike. Speaker 3 (14:46):
No. It looks like a lot more when it's in the tubes than if you were a weirdo that would empty out. Speaker 2 (14:51):
So are you're saying it's kind of like when you're in a car and you have the little writing on the mirror. It says objects in the mirror appear closer than they really are. Are you saying that the blood in the vial is, Speaker 1 (15:01):
Appears larger Speaker 2 (15:01):
Than it's appears larger than it is? Yes. I'm not buying it. Here's thing they took out 28 Speaker 1 (15:05):
Gallons, Mike, Mike, just talk to any recipient and see if they think 23 vials is that much. I guarantee you they'll be like, oh, that's a day in the park. Wait until you get the 50 or something. Oh my god. Speaker 3 (15:16):
But I do think almost every donor is surprised by that first blood draw and how much there is. So I try to warn them about Speaker 2 (15:23):
It's one's thing. Mion Charlton did not tell me. She kept that from me. If we're Speaker 1 (15:30):
Going to call her out this much, we're going to need to get her on here so she can defend herself. At the very Speaker 2 (15:36):
Least, the three of us will have a conversation for sure. So tell us specifically about your, so Speaker 1 (15:43):
Were there any hurdles for you if blood wasn't the issue? Speaker 3 (15:46):
Not really. I mean, my biggest hurdle was also myself. So more just trying to tear myself away from my desk long enough to be worked up. You'd think it'd be easy. I donated at my own center, but you guys keep me so busy that trying to get away from my desk, you can't Speaker 1 (16:06):
Help, but you're a really good center. We have to give you kidneys, Speaker 3 (16:09):
Which I appreciate. And so I will take that challenge, but we Speaker 1 (16:13):
Got to put 'em somewhere. Speaker 3 (16:14):
I think it was just trying to be comfortable with the time off of work and things like that to get through the evaluation. We typically do it at our center in one day, but I broke mine into two pieces just so that I could not take time off of work. Speaker 1 (16:34):
So that's typical one day or is two days more common? Speaker 3 (16:38):
So one day is typical for us. One of the big challenges I'm sure you guys are aware of is not every transplant center does these evaluations in the same setup. And we typically offer it as a one day evaluation, but sometimes that doesn't work for donors. And so we can be flexible and we can split it up if that's easier for someone. Speaker 2 (16:58):
So before we get into a little bit more detail about the testing, you said that you were a donor. Who did you donate to? Speaker 3 (17:08):
I donated to someone through NKR. I know it went to a child in Minnesota. That's about all I know. Speaker 1 (17:17):
So you never got in contact with your recipient? Speaker 3 (17:21):
Not yet. I mean it's only been I think eight or nine months. So you know, got a lot going on. You're adjusting to everything, Speaker 1 (17:31):
Especially if you're at ped. Yeah, I mean the parents are taking care of that kid pretty good. Speaker 3 (17:36):
Samantha Speaker 2 (17:36):
Would know. Yes, Speaker 1 (17:37):
I did. I was there. Speaker 3 (17:39):
And so I think it's nice for me to be able to have that knowledge of what it looks like post as well, so that I'm perfectly okay. I went into this knowing was putting this out there with no expectations, no plans for anything. And so that was my path. Speaker 1 (17:58):
But you also donated as a voucher, so you technically also donated on behalf of whom? Speaker 3 (18:03):
My children and my husband and my parents. Oh and my brother. I went over, I did six. Speaker 2 (18:10):
And what is that program called? Speaker 3 (18:11):
That is the Family voucher program. Speaker 2 (18:14):
Excellent, Kari, that was a test. And you have passed. Yes. Speaker 1 (18:17):
You get a gold Speaker 3 (18:18):
Star. I spend a lot of time educating people about vouchers. Speaker 1 (18:22):
In that case we might need to back Speaker 2 (18:24):
I'm sure at some point, right? Speaker 1 (18:26):
Maybe. Yeah. Oh definitely. That's on the list for 2024 Speaker 2 (18:28):
Topics. So one of the most common types of questions that we get as mentors, I used to be a mentor a long time ago, back in the day, Samantha are medical questions, but Speaker 1 (18:39):
You're back in the day is like the sixties. Mine is like the 1240s. Speaker 2 (18:42):
I was born in the 72, not the sixties. But a critical pillar of the donor mentor program is that mentors cannot and do not offer medical advice as they are not medical professionals. I clearly am not. But Kari, you are. So I ask you this, what can a donor expect from the process medically and what are the tests and how long does the whole process take? I know we talked a little bit about that already with Samantha, but if you can go over the actual testing process, the actual exams that are going to be performed, that would be very helpful I think to our million listeners Speaker 1 (19:23):
Or the one guy in his basement, whatever it happens to be. Speaker 2 (19:27):
So walk us through the evaluation process and the actual tests that are performed. Speaker 3 (19:32):
Sure. So medically, I guess at the most simplest terms, a donor can expect to have the best physical of their life. Speaker 2 (19:40):
And how much does that cost? Speaker 3 (19:42):
That is at the very low cost of $0. Speaker 2 (19:45):
$0 free. Why is that? Speaker 3 (19:49):
Because donating a kidney shouldn't cost you anything more than a kidney. Speaker 2 (19:53):
So who pays for all the testing that you're going to talk about in a minute? Speaker 3 (19:55):
Either the transplant center or the recipient's insurance. We have a whole financial team that sorts that out for me and I would not be able to do my job without them. But it is all taken care of by either the transplant center or the recipient's insurance. Speaker 2 (20:11):
That's awesome. So tell all these donors what they're going to win by going through the evaluation process. Speaker 3 (20:17):
So like I said, best workup of your life. So for us, we typically start with just some education and screening over the telephone with one of our coordinators as the very first step just to outline the process, explain some of the risks and benefits, really explain what you can expect and what the testing looks like and what the options are. Because in addition to having that medical workup, there's also a lot that every donor needs to know about this to make a truly informed decision. So we sprinkle that education throughout, as long as there are no major red flags on our screening, then we have our folks do all that lovely blood work that you described. In addition to that, we do a 24 hour urine collection, which is exactly what it sounds like. Speaker 2 (21:05):
It's 24 hours of collecting your urine, correct? Speaker 3 (21:09):
Yeah, it's really fun. Speaker 2 (21:11):
It is not as easy. Speaker 1 (21:13):
It's really not. Speaker 3 (21:15):
No, no. Not even for Speaker 1 (21:16):
A guy apparently. And Speaker 3 (21:18):
You get nervous Speaker 2 (21:19):
Too. That part is easy, but you got to have the jug with you everywhere, right? Including in your Speaker 1 (21:25):
Workplace. Speaker 2 (21:26):
Including your workplace. You have to click the urine. Speaker 3 (21:29):
I did it at home. You weird? Speaker 1 (21:32):
No, Speaker 2 (21:32):
I brought it to work. Speaker 3 (21:34):
Okay, Speaker 2 (21:35):
What am I going to take 24 hours off of work to go pee in a jug? You could use a Speaker 1 (21:39):
Weekend. Speaker 3 (21:40):
I did it on a Sunday. Speaker 2 (21:41):
No, see I did it a lot differently. I started it on a Sunday knowing that I'd finish at work on Monday and then I wanted to not go to Quest on a weekend. So I took it with me on my way home and dropped it off at Quest. Speaker 3 (21:59):
So let me offer you this start at Sunday morning and go to Quest before you go to work on Monday morning. Speaker 2 (22:06):
No. Yeah, but's much smarter, but I couldn't have done that. It's like I've been doing this, I couldn't go almost. I couldn't do that. I started at two 30 in the morning. Speaker 1 (22:14):
That's weird. Okay, nevermind. Michael's bathroom habits are a completely separate episode of this and only available. Speaker 3 (22:23):
You should state checked. Speaker 2 (22:26):
Alright, so go ahead. They do the 24 hour urine in. Speaker 1 (22:29):
I think we're still on this. We've actually, we used to require a 24 hour urine with our pre-test work. Speaker 3 (22:36):
Yes, I remember. Speaker 1 (22:37):
Yes, we're sorry. Everybody should see the look she's giving me. It's one of pure hatred. But anyway, we had people very confused by this. We also had people with really intense kidneys who would walk into Quest with empty milk cartons and the jug and a water bottle and it was like, here's all of it. It's like, what the hell? Speaker 2 (22:57):
You said 24 hours? Speaker 1 (22:59):
Yeah, you did. Yeah. Speaker 3 (23:02):
Alright, so if you can pass that first step of successfully collecting 24 hours worth of urine, which Speaker 1 (23:09):
Apparently is also an IQ Speaker 3 (23:10):
Test, and then do all that blood work without fainting. Speaker 1 (23:15):
Oh, they don't care if you faint. Apparently they just keep going. Speaker 3 (23:19):
So then for our center anyways, if all that comes back normal, the next step is to come spend the day with us in the office. So that's going to consist of an hour one-on-one with the coordinator, more education about the process, what the options are. It's about an hour with a nephrologist really going over their individualized risk, medical history, family history Speaker 2 (23:42):
And nephrologist specializes in Speaker 3 (23:44):
Kidneys, right? Kidney? Yep. It's a medical doctor that specializes in kidney health. We also have everyone see a social worker just to make sure they have the right supports in place. And there are no major concerns psychologically. We have everybody see a donor advocate as well, who is literally just there to advocate for the donor if they need someone. We have everyone see a dietician to really go over what their dietary habits are, if there are any changes they need to make. Sometimes people need to lose a little weight to qualify. So they can also help offer some resources with that, Speaker 1 (24:20):
Which is a whole nother episode. Speaker 3 (24:21):
Want to make sure I'm not forgetting anyone or they'll be offended. And a surgeon. We do like to have somebody see everyone see a surgeon, they'll be Speaker 1 (24:29):
Offended. So it's not just a guy with a melon ball or good to know. Well, Speaker 3 (24:32):
No. We do often say the evaluation day. It's not uncommon for us to skip the surgeon if they're tied up in surgery or things like that. They're a little bit more important at the pre-op visit. Speaker 2 (24:42):
I mean, who would want to meet the person that's going to cut open their body and take the kidney out? Speaker 3 (24:46):
Well, they will at the pre-op visit. Oh, okay. Alright. But at least evaluation day. As long as there are no surgical concerns. So we do an EKG, we do a chest x-ray, we do a CAT scan is really important. Why? Well, we want to make sure you already have two kidneys to start. What Speaker 1 (25:04):
That actually knocked my father's father, my paternal grandfather out of donating kidney to me, he still tried because he was crazy, but I love him dearly. God rest his soul. But he had actually lost a kidney in a boxing accident when he was in college. So he had no idea that it was damaged beyond repair. It was the fifties when he was in college or sixties and they just left it. That didn't do anything to him. Speaker 3 (25:34):
It was still in there. It Speaker 1 (25:35):
Was still in there. It was scarred. And so he was like, wait, I only have one that works. Oh, never knew that. Speaker 2 (25:40):
Cool. Have you had people who were born with only one did not know and then the CAT scan revealed that? Have you had that? Because I actually Speaker 3 (25:47):
Spoke to one of them. I personally have not, but I've heard of plenty of those. Yeah, Speaker 2 (25:51):
I spoke, I was mentoring someone, was an older person and they called me up to tell me that they wouldn't be able to donate. And I said, oh my gosh. I'm like, why? They said when they did the CAT scan, I only have one kidney and they said that it's back in the day before my day. They didn't have all these fancy ultrasounds and sonograms and all this stuff. So now they check for all the organs. They just, yeah, you got a baby in there and then a baby is born. So he had no idea that he only had one kidney. Speaker 3 (26:24):
Yeah, it can happen. It's a sign that you can live. One is enough, Speaker 2 (26:28):
One is enough. Speaker 3 (26:30):
All right. What other tests can donors expect? So Speaker 2 (26:33):
A CAT scan was we Speaker 3 (26:35):
Scan? Yep, we did CAT scan. Depending on their medical history or their lab results, we may ask them to do additional testing. So a pretty common one for some folks is to see a cardiologist for clearance, maybe do some cardiac testing along there. For us, if somebody has a history of smoking, we like them to do pulmonary function tests. Speaker 2 (26:55):
What about for men over a certain age? Do you require a colonoscopy? Speaker 3 (27:00):
Well, men and women require Speaker 2 (27:02):
Both men and women. We Speaker 1 (27:03):
Both Speaker 3 (27:03):
Have colons. Speaker 1 (27:05):
Okay, Speaker 2 (27:08):
This is turning into a biology. Speaker 3 (27:11):
This is why Mike's not the medical expert. Speaker 1 (27:15):
This is why we don't let mentors speak on medical stuff. Speaker 2 (27:18):
I heard I'm up for nomination for the medical board, so maybe I wonder if this is going to help or hurt. I think Speaker 1 (27:23):
This is going to cancel that nomination, Mike. Speaker 2 (27:25):
Okay, so men and women colonoscopies, when would they have to get that? Speaker 3 (27:29):
We do require folks to be up to date on routine cancer screenings. So mam, I think the latest as well. Yeah. So whatever the latest thing that the American Cancer Society is recommending, that's what we align with. So for us, colonoscopy start at 45 mammograms pap smears. We don't necessarily require people to be up to date to start the testing, but we do let them know that you do have to get these things done in order to donate. Speaker 2 (27:55):
Cool. Alright. What else do we got? What Speaker 3 (27:56):
Else do we have? So if we see anything abnormal, we'll send people to see specialists all the time normally. And Speaker 1 (28:03):
Who pays for those specialist trips? Speaker 3 (28:05):
We do. Speaker 2 (28:07):
It's still free Speaker 3 (28:08):
Now. We don't often pay for the colonoscopies and the mammographies, that sort of thing. Because it is routine healthcare. And that's Speaker 2 (28:16):
Covered Speaker 3 (28:17):
Under your Speaker 2 (28:17):
Own major insurance companies, correct? Speaker 3 (28:19):
Correct. And if there's a barrier, if that's the one thing that's stopping somebody from being able to donate, we would of course see if there's any way we can help out. So it doesn't really come up anymore. Speaker 1 (28:30):
What's the weirdest test you ever sent to anyone for? Speaker 3 (28:33):
I don't know if I can think of weirdest. It's just I think sometimes I get these obviously healthy people that it's just one thing after the other, after the other. And so for example, if you're going to see your primary care physician for a routine physical and your blood counts are just slightly abnormal and you have no history of anything, they'll say, Hmm, that's weird. Let's see what it does next year. Whereas with donation, we don't have that luxury. So we will jump and send somebody to see a hematologist and that often goes down a rabbit hole that often ends in a bone marrow biopsy and things like that. Wow. Really leaving no stone unturned because donor safety is our number one priority. So I will have people do everything under the sun so that we can confidently say that this is safe for you to do. Speaker 2 (29:24):
Wow, Speaker 1 (29:25):
That's fantastic. And it makes sense because I mean this is major surgery we're talking about and you want to make sure that this person is not going to be negatively impacted by having only one. Speaker 2 (29:36):
Yeah, because I can't think of another person walking into a hospital completely healthy saying perform a procedure on me. Speaker 1 (29:47):
Well, certain housewives and nose jobs, but we might need to cut that Speaker 2 (29:55):
Plastic surgery was not even on my list of things. I Speaker 1 (29:58):
Need liver donors. Liver donors do do that. Speaker 2 (30:00):
Well, organ donors. Yeah, very rare does someone walk into a hospital and say, take my kidney, take my liver, please Speaker 1 (30:09):
Perform a major operation where I can't return to work for several weeks afterward. Speaker 2 (30:15):
And you've had this, I'm sure having donors go through the evaluation process. I've talked to donors who were crushed that they found out medically they were ineligible and maybe they're trying to even help a loved one, right? They're going to do a direct donation, like a good Samaritan donation that you did. And they almost want to, I just spoke to someone recently that said, I'll sign a waiver that you could do an open nephrectomy that you just take my kidney so I can help my family member. And I told the donor, I said, they're never going to do that. They're never going to allow someone to donate if they're not going to leave the hospital perfectly healthy minus one kidney. Speaker 3 (31:02):
Correct. And I have had to have a lot of those difficult conversations with people who really, really want to donate. I've had plenty of people offer to sign that same waiver and say whatever they can do that they don't care about the risks. And I always have to remind them that we do and it's a risk for them. And also if something negative were to happen that could impact donation overall, even if they sign off on it. We want to make sure that when people like Samantha need a kidney, that we have a system where yes, please, where they can get one and that we didn't do something that shut the whole thing down. Speaker 2 (31:44):
Is there a common thing that would prevent someone from donating a kidney in your experience? Speaker 3 (31:51):
I mean, diabetes is usually a big one and cancer obviously is a big one. But what I find a lot of times is it's not always one big thing. It's a lot of little things that add up to many risks and so we're always trying to see how we can get over those, how we can safely get somebody across that finish line. But it always has to come from that perspective of safety. Speaker 2 (32:17):
So is there anything that could rule a donor out initially, but maybe they can do something to fix it so they can ultimately donate? Speaker 3 (32:29):
Yeah, I mean not every rule out is reversible, but I mean we've had one where somebody had a large kidney stone and they went and took care of it with the urologist and came back and they were low risk for forming more. So we said sure. Again, with the weight, sometimes people don't qualify. If they're at a higher BMI, maybe they're starting to show some signs of metabolic syndrome, but they can adopt a healthier lifestyle and make some changes and come back. That's the biggest one we see people because it's modifiable. Speaker 2 (33:05):
What about smoking? Would that preclude someone from donating? Obviously I've heard stories that you guys recommend that they stop a certain amount of time before and don't smoke a certain amount of time after. Can you answer the smoking question? Speaker 3 (33:20):
So that's one of those things that is very center specific. So every center has their own policies and guidelines on what they will do with smoking. We do require folks to quit because it can impact your kidney health to some degree. It can increase your overall risk to develop kidney disease. So we do require people to stop smoking and we have resources in place to help them with that if they need that help. But ultimately afterwards they're going to do what they're going to do. Speaker 2 (33:54):
Think about Speaker 1 (33:56):
Alcohol. Speaker 2 (33:56):
Oh, it's funny. That's up there is probably number the one thing that I get asked. Can I still drink? Speaker 3 (34:03):
Yes. Speaker 1 (34:04):
Well we know what Speaker 3 (34:05):
People, but alcohol is still bad for you. So yeah, alcohol, we're taking a kidney, not a liver, but in general we are looking at things to make sure you are using and not abusing alcohol use disorder is not good if you're going into a stressful situation like this. But if you like to have some drinks on the weekend, like I'm not taking that away from you. Speaker 1 (34:31):
And you do have to see a psychologist and pass a psyche Evel. Correct. Speaker 3 (34:35):
You have to have a psychosocial evel. So for some centers that means psychologist. For a lot of us it means a social worker. And then if there are further concerns, we may ask somebody to see the psychologist because yes, we are looking not just at medical safety, but also their psychological safety donation is a stressful thing and we know that people do experience some depression and anxiety throughout it. And so we want to make sure, not that we're going to rule people out, but we want to make sure that they have the support in place to withstand those stressors and that they are aware that that could happen. Speaker 2 (35:11):
You mentioned, I think Samantha mentioned earlier that you're here as a transplant coordinator from Hartford Hospital and the process that you described is the process at your transplant center. Correct. And I think you just mentioned that I think in the United States of America there's like 259 transplant centers. The N KR really Speaker 1 (35:32):
Specific number. Mike, Speaker 2 (35:34):
I just saw the number, but he thinks there's that, I saw the yesterday, so I think it's still 259 and the NKR has 102 transplant centers that are in our network. Every transplant center has a different process. So the process that you described is specific to your center? A lot of it I think was general, but each transplant center, we could have listeners from all over the country and they could be going to a transplant center in California or Florida or Chicago, wherever they are. And the experience might be a little bit different, right? Speaker 3 (36:07):
Correct. We all have these standard tests we have to perform, but the way we structure that is different center to center. We all also have our own cutoffs based on our own experiences and comfort level. So there are definitely things that vary center to center, but it's usually similar type setup to what we do at Hartford. Speaker 1 (36:30):
Cool. Yeah. What I was going to actually inject a little bit was that if you are ruled out at one center, that doesn't necessarily mean that you're going to be ruled out at another one. True. Speaker 2 (36:40):
Correct. Very Speaker 1 (36:41):
True. And it's definitely a question worth asking because usually the centers kind of know who's who a little bit and who will allow what. And plus there are always trials going on for different things and we'll probably have some guests on for all of them at some point, hopefully if we stay on the air. But I think it's called either the HOPE trial, the New HOPE trial, that's HIV positive to HIVV positive. I know that's going dawn, that's going on at NYU at the very least and a couple other centers. So it used to be that that would completely preclude you from donating and now there are certain places where you can, so it's definitely worth talking to your center even if you are ruled out. Speaker 3 (37:24):
Absolutely. And asking around and finding those other centers are helpful. If I rule someone out and I'm aware of another center that's somewhat nearby, ideally that might be able to work with them, I won't hesitate to reach out on their behalf. Speaker 1 (37:42):
All right. So on that note, is there anything else before we conclude and thank everybody that you'd like to tell a potential donor or somebody working through the process who might be a little stuck or as both a donor and a transplant coordinator? Speaker 2 (37:58):
The unicorn, Speaker 3 (38:00):
Can you please Speaker 1 (38:01):
Stop calling her a unicorn? Speaker 3 (38:04):
So the big thing I often will say to anyone who's listening, who's considering donation is to ask questions. So I know you said that you shouldn't be Googling things I did, you should not Google your own medical results, but it's perfectly fine to Google the donation process to get that information. There is actually a lot of good information out there now. It didn't always used to be that way. You guys have done a great job of putting a lot of helpful information out there. You Speaker 1 (38:35):
Thank you. We Speaker 3 (38:35):
Try. There's some very helpful Facebook groups out there as well. So there are a lot of ways where people can get connected to good information. But yeah, don't Google your own results because that's Speaker 1 (38:46):
A, you'll end up with 17 different cancers and a death sentence. Speaker 3 (38:49):
Yes. Don't play Dr. Google, but get that information about the process. Comparing the centers, that's always encouraged. And if you have to go to different specialists, so you have to do these extra steps, don't get discouraged. That means you're not ruled out yet. It means we're trying everything we can to make sure that this is safe for you. So just stick with this on the journey. I've had people get through it in about two weeks and I've had some people take a year or two to do the whole piece. So everybody's different. And if we're asking you to do more steps, it means there's a chance. Right. Speaker 1 (39:23):
Wonderful. Alright, thank you Kari. We want to thank you for not just this podcast, which is for being such a help and advocate for the NKR. I'm sure that we're going to need you again for more training events and more discussion topics, more about, Speaker 2 (39:41):
Especially if our ratings jump up because we had the unicorn on the show. We are definitely bringing her back. Speaker 1 (39:46):
My God, can we please stop in the unicorn? Speaker 3 (39:50):
It's my pleasure. It's always fun and it's been great working together, so I hope to continue. Speaker 1 (39:55):
Oh, we hope so too. I mean, you've authored a bunch of our blog posts as well. I mean, you're one of our go-tos because you're so willing to help us. And so we thank you very, very much for that. We wouldn't be able to do as much as we do without you. And we also thank Hartford Hospital for allowing you to be such a great help and such a great friend of the NKR and for allowing you to join us today on one is Speaker 3 (40:18):
Enough. Well, thank you. We recognize as long as there's good information out there, the patients are better educated and if I can help teach other coordinators, then the whole system works better as well. So it really is a win-win. Speaker 1 (40:31):
And that's the goal of this podcast. I mean, we just want to try and get that correct information out there because there are the false starts out there and Dr. Google is a thing and it's not always the correct information. So that's kind of what we're trying to do here. So thank you. Awesome. Speaker 2 (40:53):
You can learn more about the podcast by visiting kidney registry.org/one. When you're there, you could sign up to be on our email list so that you'll be the first to know when we drop a new episode. And trust me, you want to be the first to know.