In the previous episode we heard Darryl’s story, how he needed a kidney transplant because of kidney cancer. This week we meet Jim, who responded to “The Big Ask,” and donated a kidney to his close friend Darryl. Jim shares with us his side of the story, explaining why doing this for his “brother” was so important to him, and he describes his overall experience of making “The Big Give.”
And Dr. Adam Bregman joins us to talk about his experience with kidney transplant patients using resources from programs such as “The Big Ask, The Big Give” to help find their own living donor. He also explains how a kidney from a living donor tends to last longer. We also explore the subject of health disparities in kidney disease and discuss some of the root causes.
With host and series producer Rolf Taylor.
Resources mentioned during this episode:
The Big Ask, The Big Give, National Kidney Foundation www.kidney.org/transplantation/livingdonors
Kidney Transplant Conversations is underwritten by Veloxis Pharmaceuticals, Inc. All views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals, Inc.
© Project Advocacy, 2022-2023
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:08):
Welcome back to kidney transplant conversations.
Episode 12.
In our last episode we heard Darryl's story how he needed a kidney transplant because of kidney cancer.
He'd used a variety of resources to help find a donor,
including the National Kidney Foundation Materials that are available as part of the program,
(00:31):
The Big Ask,
The Big Give and we discussed how people close to him help get the word out that he needed a donor and how it felt to receive the gift of life.
This week we meet Jim who responded to the Big Ask and donated a kidney to Darryl.
(00:52):
Jim shares with us his side of the story explaining why doing this was so important to him.
And Jim also discusses how he feels he has benefited from the experience.
And later in this episode,
Dr Adam Bregman joins us to talk about his experience with kidney patients using resources from the Big Ask the Big Give
(01:14):
program helping to find their own living donor.
We also discussed the extent of health disparities in kidney disease and some of their causes.
Kidney transplant conversations is underwritten by Veloxis Pharmaceuticals, Inc,
and all views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals or the producers.
(01:50):
So welcome Jim Norwood to kidney transplant conversations and in our conversation today,
I'm hoping we can share some insights into the process of becoming a kidney transplant donor that you experienced so that other donors and donor recipients can better understand all that entails.
(02:11):
So let's start with a little bit of background,
How did you become friends With your eventual recipient,
Darryl because I know you guys go back a long way.
Darryl and I,
we met in 2000,
we were at the Command and General Staff Officer College,
which is an army school.
Our families are with us and we ended up being neighbors.
(02:34):
There were 50 or so couples in this cul de sac.
This condominium cul de sac,
you know,
so we immediately had all these friends and our kids had all these friends,
Darryl and Pam,
his wife and our kids just just hit it off.
Uh,
and you know,
we lived right next door to each other.
So wonderful.
(02:54):
And how long ago was that?
That was in 2000 and so we were there for about 11 months.
We did some different adventures together.
We went skiing together locally,
went out to dinner,
had some barbecues,
you know,
that kind of thing.
We just became really good friends and you know,
Darryl and I realized that uh,
(03:16):
we started calling each other "brother" because we have a lot in common and we just had that special connection.
We just felt really comfortable with each other.
And how did you come to learn that Darryl was in need of a kidney?
It was probably 18,
19 years later and my wife told me that Darryl was having problems,
(03:38):
he had lost a kidney had kidney cancer.
He was likely to lose the other one.
You know,
I reached out wishing the best hope everything would be okay.
And it was probably a couple of years later that they had sent an email out.
Friends,
family connections.
Just kind of explaining Darryl's situation at this point.
(04:00):
I want to say you've been on dialysis maybe two years,
2.5 years.
And my wife we were we were actually eating out and she said would you consider donating?
And I said absolutely I've got to he needs one.
So so why not give up one if I can.
And that kind of started the process and very informal manner over over dinner.
(04:21):
And that was just you and your wife talking about the situation with a friend.
It was and then once my wife realized that that I was serious,
she reached out to Pam who is Darryl's wife,
they put us in touch with the the coordinator at U.
N.
C. University of North Carolina.
(04:41):
And I began the process.
Was it a difficult conclusion for you to come to to start that process?
I mean did you really wrestle with it or did it feel like this is like the natural,
this is like a natural obvious decision.
I never wrestled with the decision.
It just seemed like something that I should do.
(05:05):
You know,
if I could help Darryl then that would help his family.
They're a wonderful family.
Darryl's wonderful person.
You know,
he had a young granddaughter,
Michelle and I had just been informed that we were gonna be grandparents and I just started you know thinking about his family you know how they would feel if something you know if Darryl were uh if things were to go south so to speak.
(05:28):
And so I just wanted to help him and help the family.
Did you tell him right away that you were considering this or did you kind of go for an assessment first to make sure that it was a possibility.
I told him that I was interested.
Uh And that I had been contacted by U.
(05:48):
N.
C.
That I had uh you know done the blood draw and everything and that it appeared initially that I was a match and you know I mean he was very very humble very grateful.
It was still too early in the process you know for me to be recognized as a as a valid match for him.
(06:10):
But I did kind of keep him informed as I would go through the different stages of tests and what kind of tests did you did you have to go through?
They checked me out thoroughly.
I had to do a couple of stress tests.
They forget what the procedure is called.
But where they insert the die and they track it through your system.
(06:33):
MRI's cat scans.
I want to say.
I went up there three times each time I went there was at least two days of tests so once they cleared me to donate you know,
I felt really confident that I was in good shape That I could handle it.
Um,
and that,
(06:54):
you know,
this,
this hopefully would be a good thing for Darryl.
It must have been quite an amazing journey to suddenly find yourself on with all of this kind of technology and testing and possibilities.
It was at the time that I donated the kidney,
I was 58 years old and I thought to be in reasonably good health.
(07:15):
I've always kind of taken care of myself um,
but just to have all that validated,
you know,
by the testing,
by the professionals.
Um,
them reassuring me that my quality of life would not change,
that I could continue to live my life as I had in the past.
(07:36):
You know,
it's just that all gave me kind of a sense of confidence that everything was going to be okay.
What about thinking kind of ahead to the future and spending the rest of your life with one kidney and potentially having a financial impact from,
from that whole process.
What were your thoughts around that?
(07:56):
And what kind of discussions did you have around that?
I really didn't focus on the finances so much because early in the process,
you know,
Darryl had formed me about,
um,
his go fund me site through the kidney Foundation,
that they were going to cover,
(08:17):
uh,
you know,
travel expenses,
little things like that,
that his insurance would cover,
you know,
the hospital stay and all that.
And the kidney coordinator and their team,
you know,
that's part of the process.
They want to educate you on everything from the finances,
the insurance,
(08:37):
you know,
all the way to later in life and things like that.
Plus as a,
as a retired soldier,
I have Tricare insurance,
which is really good program.
As a business owner,
I have my own insurance as well.
Uh,
so I just,
I was in a good position to not have to worry about a lot of things.
(09:00):
And probably a lot of people do.
And what about your kind of wider family,
friends and family?
Um,
did you let people know that you were going through this process?
And what kind of response did you get?
It's kind of unusual.
It is,
you know,
my,
my kids wanted to know more,
My boys wanted to know more.
They're both adult adult men.
(09:21):
Uh,
but they wanted to better understand the process and,
you know,
after the donation kind of the back end the recovery and uh,
would I be okay?
You know,
that's kind of what I got from my sister and my in laws,
they just wanted to really better understand the process.
(09:41):
And it's funny you mentioned,
um,
it's funny you mentioned your age at the time,
you were 58 obviously because I'm talking to so many people about kidney transplant.
The thought has crossed my mind.
Well,
could I be a donor?
And I guess I kind of thought,
well,
I'm probably a little too old to do that?
But clearly not now,
it's a the team,
(10:03):
the transplant team told me,
I said,
well,
you know,
you're,
you're not definitely not the youngest,
but you're definitely not the oldest.
Um,
and it really just comes down to,
you know,
are you physically a match?
And then what kind of shape are you at?
Like I said,
I mean I'm retired army,
but I still go to the gym and work out seven days a week.
(10:25):
That's I just do that for me.
That's not something that I started because I was going to donate a kidney.
So I've always just tried to take care of the body of my body.
Yeah,
it just goes to show being physically active.
It's it's it's key.
So,
jim how do you feel now you've been through this process as it changed you?
I think it's changed me for the better,
(10:46):
you know,
I kind of look at things a little differently.
I'm happy to be able to help Darrell,
I'm more patient,
more humble.
So I think it's,
I think it's helped me in terms of your kind of overall experience,
how could it have been better?
(11:06):
And I'm thinking really here,
you know,
for like some of the obstacles you came across or some of the,
some of the,
some of the ways you kind of went into the process?
Could it have been made better?
Do you have suggestions on how kind of becoming a donor could be improved?
I don't think I do.
You know UNC Chapel Hill they have the process down.
(11:30):
And so my perspective is only you know towards that one facility that one institution they knew what they were doing just their whole process.
Any question concern they were able to address it a lot of times before I would even ask the question.
What's interesting is I made this donation right in the middle of Covid originally scheduled for March and then it got pushed in May and and that frustrated me because you know I had my game face on.
(12:00):
I was ready to go in March.
Um you know that I had to get my game face on again and go in May and Darryl and I walked into the hospital with our families.
They were not allowed.
Um And it was you know U.
N.
C.
Was very accommodating keeping the families informed.
(12:23):
Uh it's it's a rather long procedure you know 4.5 5 hours on the table.
But when I woke up you know my wife was there in the room with me and it just they took really good care of me.
So they did an amazing job at a really difficult time.
Well it's really really wonderful to hear your story.
(12:44):
Really appreciate you know the insights that you've shared.
What would you what would you say to other people who are thinking about donating,
Who may be considering that they might give this gift for somebody.
I think that anyone is that's considering it.
You know,
my hat is off to them.
It is something very special for you as well as the recipient and it's,
(13:09):
it's not too often that you get to help somebody in that way and potentially save a life jim.
Thanks so much for joining kidney transplant conversations today and thanks for your service and thanks what you've done for Darryl,
who I now feel connected to having heard his life story.
The good news is is that Darrell is doing really well.
(13:30):
You know,
living a full life,
not tied to a machine and in dialysis anymore,
we do get together once a year,
kind of a reunion every May.
So this will be our second reunion coming up and uh his family,
that must feel quite emotional when you get together.
It is,
it's a very special event,
(13:50):
you know,
and a lot of,
a lot of people don't realize,
but you know,
Darryl is is african american and I'm caucasian.
He's six ft three,
I'm five ft 10 and they just stare at us when we call each other brother and see us out together.
You know,
it's regardless of demographics 11,
he's my brother and love their family and as they say,
(14:11):
all kidneys are pink.
Yes,
they are now.
We're going to talk with Dr ADam bregman.
He's a transplant nephrologist at the University of Minnesota Medical Center and also an assistant professor in medical nephrology at the University of Minnesota Dr BRegman.
(14:38):
Welcome to kidney transplant conversations.
Thank you so much for having me.
I'm excited to be here.
So we are today talking about the benefits of living donor donation and also talking about how we can help the process of asking for a kidney donor.
(14:58):
And National Kidney Foundation has got a terrific program called Big Ask Big Give and I know you've been working with that program with some of your patients and I'm looking forward to getting some insights into how that's working for you at the University of Minnesota Medical Center.
But first could you give us some information about what is the current status of living donor transplants in the context of overall donation and also how that is potentially affecting waitlist and waiting times for a kidney transplant.
(15:31):
You know,
in 2019,
before the,
before the pandemic hit,
it was a record breaking year for living donor kidney transplant.
There were almost 6900 living donor kidney transplants in the country that decreased due to the pandemic to just over 5200 when many centers briefly paused there Living donor programs but then subsequently rebounded to about 6000 in 2021.
(15:57):
Just to put that into context,
there were 24,669 kidney transplants in 2021.
So living donor kidney transplants accounted for 21.2% of all of kidney transplants at that time.
So,
you know,
about 40,000 patients are added to the waiting list for a kidney transplant each year for such a scarce and vital resource.
(16:22):
And at any one time,
there's about 100 and 40,000 patients that are wait listed for for a kidney alone.
Overall,
the the amount of patients on the waiting list has remained relatively stable over time despite increasing the amount of living donor kidney transplant and deceased donor kidney transplant with the improved regulation of kid Any transplants in the country.
(16:43):
So,
if you are waiting for a kidney transplant,
depending on the region that you're in and the blood type you are,
or the amount of antibodies that you have on markers to other people's kidneys.
You can wait from anywhere from one year to eight years depending on a variety of characteristics.
But just some statistics for patients that were wait listed in 2016,
(17:08):
we're still waiting for a kidney.
In 2019,
23% of them underwent a deceased donor transplant,
13.5% underwent a living donor kidney transplant and 20% were removed from the list.
And we haven't even been able to calculate the the average waiting time for a kidney transplant in over a decade,
(17:31):
because 50% of the candidates on the waiting list haven't undergone transplant since 2008 for a variety of,
of reasons.
So it really is in your best interest if you need a kidney transplant to try to get a living donor kidney transplant.
And it sounds like the number of living donor transplants that is taking place is trending up.
(17:56):
It's not a steep rise.
It's a very gradual,
that is correct.
You know,
I I I would love that if,
you know,
if if living donor kidney transplant would would comprise,
you know,
80 or 100% of of our of our total transplants.
But yeah,
you know,
even though it is increasing in number,
(18:16):
but because we're increasing the amount of overall transplants,
um,
that are being done by being maybe more aggressive with the deceased donor organs that are utilized.
The percentage overall remains remains the same.
So obviously it's a great solution for someone who needs a transplant to have a deceased donor transplant.
(18:38):
It's a it's a much better solution than,
say,
remaining on dialysis in the long term.
Um,
but why would a receiving a living donor kidney transplant be even better?
I'd like to explain that with with some statistics.
Okay,
so this is this is data from um,
from the organ procurement and transplant network from,
(19:01):
for transplants,
kidney transplants performed between 2000 and 2015.
Okay,
one year kidney graft survival.
Okay.
For a living donor organ was 97.5%.
And for deceased donor was 93.2%.
At three years,
it was 92.5% for living donors and 85% for deceased donors.
(19:26):
And then at five years,
85.6% for living donors and 74.4% for deceased donors.
So you can see,
you know,
using that data that the kidneys last longer if if they come from a living donor.
And what is not reflected in that data is that they typically work immediately.
There's a very,
(19:47):
a lot lower of a risk for needing dialysis even for a few sessions at transplant.
So,
you know,
not to downplay deceased donor transplant at all.
It is um,
it is life saving and life prolonging.
But if given the choice between living donor deceased donor,
one would um,
(20:07):
certainly want a living donor kidney transplant.
Plus the added benefit that potentially you could be waiting a far far shorter period for a living donor transplant.
But you do have to go through a process which you kind of have to lead yourself.
So we'll come onto that a little bit later.
Um,
has has living donation become easier and safer?
(20:31):
Has has surgery changed?
Um,
and what protection supports are in place for for living donors?
Because obviously they face some kind of financial and insurance implications.
So,
yes,
living donation has certainly become safer for the donor from a nephrologist standpoint when I evaluate a potential donor,
(20:53):
um,
I want them to understand the potential risk of kidney injury and kidney failure themselves.
But in general terms that the donor rate of end stage kidney disease doesn't exceed the end stage kidney disease rate in the general population,
even after taking out one of their kidneys.
That is because our donors are relatively healthy.
(21:15):
Well selected.
They don't have protein in their urine,
high blood Pressure,
diabetes.
Um,
you know,
depending on the on the risk factors of the of the donor,
whatever conditions that they may have,
their increase in risk for for kidney failure in their lifetimes could be 6 to 12 times the rate before donation.
(21:39):
But keep in mind,
That is the absolute risk is very,
very small.
As in like,
you know,
point like .3%,
after donation.
Uh,
you know,
20 year end stage kidney disease risk.
So,
you know,
in a in a paper that I was reading 20 the 20 year end stage kidney disease risk and the average donor is .34%.
(22:06):
And that is actually lower than the risk of the general population.
And you know,
now we have a lot more calculators and models to predict risk based on donor factors like age.
B.
M.
I.
Uh,
systolic blood pressure to identify higher risk donors and,
you know,
be able to warn them the possible risk and then the surgical complications such as wound infection and hernia have also decreased.
(22:33):
Now that most centers are using either laproscopic hand assisted donation or robotic techniques rather than open techniques.
So that means it's a very small incision.
Yes,
it is it is fairly small.
The actual incision,
the largest incision will be where the kidney comes out.
(22:56):
Okay,
So,
you know,
we're we're talking maybe six inches or so to your pa previous point about the protections or support.
You know,
I think that we've really made strides in the last in the last few years.
So recipient insurance typically covers donor medical expenses.
So that means the evaluation,
(23:17):
the donor surgery,
the follow up appointments,
the follow up blood tests.
But the National Living donor assistance Center,
the Ellen Dac um has resources that can provide reimbursement for travel,
lost wages and dependent care expenses.
In addition,
there are grants through the american transplant foundation and individual centers may have resources as well as well as certain parrot exchange programs that have their own benefits.
(23:47):
You know,
lastly,
the patient protection and Affordable Care Act has made it illegal to deny coverage or increased premiums for organ donors.
So a an organ donor does not need to be concerned about being denied health insurance in the future.
So there really has been a lot of progress in the in the area of general support.
(24:07):
You mentioned an L back and we already scheduled a future episode to talk with the team there.
Um,
and take a little bit of a deeper dive into how that whole program works who is eligible and what they will,
what financial support they will provide.
So,
um it's exciting to see all of those things falling into place.
I think one of the one of the concerns we we've seen on the on the podcast and previous episodes is the fact that we do see differences in terms of access to transplant and length of time spent on dialysis with minority populations.
(24:44):
So we see a disparity for african americans for Hispanics and also for asians.
Could you talk a little bit about what are the reasons for those disparities?
So we can kind of understand how we can work to address them.
Yes,
absolutely.
And and you know,
you're right,
it's extremely unfortunate that that is occurring that there is decreased access for patients of color.
(25:07):
So just to kind of give you an idea,
non hispanic and black patients are four times more likely than patients who are non hispanic and white to have kidney disease,
but only half as likely to undergo kidney transplant.
Black patients have disproportionately lower rates of living donor kidney transplant.
And these racial disparities persist.
(25:29):
Even after accounting for medical differences,
there was actually a recent study in C.
Jason in 2021 that showed that even after accounting for the social determinants of health,
black patients had a lower likelihood of kidney transplant by 26%.
They were 51% less likely to get a living donor kidney transplant.
(25:50):
But they actually didn't find any any differences in deceased donor kidney transplant.
You know,
talking about reasons why these disparities may exist.
It's complicated.
It could be due to one of three categories or even parts of each one.
So access to care meaning being referred at an appropriate time.
(26:14):
You can be referred for evaluation for a kidney transplant.
Once you're g fr,
your filtration rate reaches 20 mL per minute potentially they don't start seeing an astrologist until until later issues related to outcome after kidney transplant.
So so meaning the patient needs to be aware of what kidney transplant is.
(26:37):
Want to go through the process and then following through with care,
having the ability to go to the doctor whether that means you know having access to transportation and there are certainly some you know,
funds that one will need to to purchase their medication even with the assistance of of insurance,
a few things that have been done in the last few years to um to try to remedy this disparity was trying to eliminate the estimated G.
(27:05):
F.
R.
Correction for race which could delay referral for transplant evaluation.
So that's been changed for a lot of health centers in the in the past few years because before that african americans would have a correction such that their G fr was estimated to be higher than the same creatine for a white person.
(27:28):
So that maybe their estimated G.
F.
R.
Was 23 mL per minute instead of 20 mL per minute.
Which would delay their um their referral for for kidney transplant.
And then in addition the Yunos decision to eliminate priority allocation for h.
L.
A.
B.
Antigen.
So basically a marker on cells that can be in higher preponderance in blacks was eliminated in 2003.
(27:57):
And that led to a 20% reduction in disparity in rates of deceased donor kidney transplant between minority and white recipients.
In terms of waiting time.
We certainly have a lot of room for improvement.
And you know,
by no means.
Is is it completely equitable right now it sounds like there are some barriers that are being reduced.
(28:21):
Um I just actually had my my annual checkup and I noticed that there was a notification on my on my kidney data to say that they were removing the distinction.
Um and that was on that.
So I think that's an automated thing that it just goes to show.
These things are actually built into the electronic health record.
And that that difference for E.
(28:43):
G.
F.
R.
Between african americans and other patients historically was really just based on bias.
It wasn't based on scientific reality.
Yes,
by large.
Absolutely.
You know,
and I think that we need to take each patient individually a frail 70 year old woman with a creatinine of one and a and a muscular 25 year old man with a creatinine of one obviously had very different kidney function.
(29:11):
Okay,
Because of the difference in muscle mass.
So I don't think that it was fair for for there to be a correction factor for blacks when that potential recipient could be bed bound or less muscular than somebody else.
So I do think that it was a step in the,
in the right direction.
(29:32):
So what are the challenges with increasing living down to transplantation?
We realized that there were a lot more challenges during the pandemic.
So canceled transplants,
not being able to meet colleagues or friends in person to either ask or even increase awareness in uh,
(29:52):
for a living donor kidney transplant because those people may potentially have been donors in in the past if they knew about a person's medical issues.
But I think,
you know,
as a whole,
the ability to see potential donors in a timely fashion um,
is certainly important to speed up evaluations and increase the number of living donor kidney transplants.
(30:17):
And you know,
not all centers are involved in paris exchange.
So parrot exchange involves donating a kidney to someone that is not your intended recipient.
In order to have your intended recipient get um,
a well matched and well functioning living donor kidney.
(30:38):
So you may know that there are multiple um,
paired exchange programs in the country to two main ones.
And not all centers are involve at all.
And you have some centers in one and some centers in the other.
So I think that in order to really increase the amount of living donor kidney transplant,
(30:58):
especially for patients that have a lot of antibodies or you know,
have say,
o blood type,
which they can only receive an O organ by and large.
I think we really need to have one parent exchange network for the entire country.
And then not to mention our donor pool is decreasing because of the increased incidence of obesity,
(31:21):
metabolic syndrome and diabetes.
Um,
you know,
in this country,
so we wouldn't want to take a kidney from somebody who has diabetes because of their potential risk of diabetic kidney disease and subsequent failure potentially in their lifetime.
So that's really a fundamental preventive health challenge that we have in the United States,
(31:42):
because the increase in obesity rates has continued,
it keeps going.
It just keeps going up.
We've got reduced physical activity,
increased obesity rates.
And so that's reducing the pool of patients who are available to actually donate a kidney,
whether it's a living donation or whether it's a deceased donor donation.
(32:02):
And,
you know,
the donor may the potential donor may actually have the same disease that led to kidney failure in their intended recipient.
And,
you know,
the type two diabetes,
diabetic and property is the leading cause of kidney failure.
And in the Western world,
you know,
from conversations we've had with patients on kidney transplant conversations,
(32:23):
it's pretty clear that sometimes it appears to the patient that going through the transplant process.
Whether it's asking patients asking for a living donation from people they know or from their family Or whether it's thinking about the additional finances and the complexity of it.
It can seem like a much heavier lift than just staying on dialysis.
(32:44):
And we had one patient who recently was talking about his journey where he spent 19 years on dialysis before receiving a transplant.
And it wasn't that he was waiting for a transplant for 19 years.
It was for a lot of that time he really didn't want to be in the process.
He felt he felt some reservations about going into the process.
(33:05):
So I,
so I think it's um,
it's interesting to talk about what's happening with the Big Ask Big Gift program,
which National kidney Foundation has put together and is and is being used by many,
many centers because it seems like part of the barrier is kind of having the,
having knowing what to say.
(33:26):
Have you been using the program with your patients and what kind of,
what kind of experiences have you had?
Yeah,
absolutely.
So,
um,
you know,
we we've been a part of big ask to give for um,
for um,
for a little bit now and,
and,
you know,
I've only been at the University of Minnesota now for for a year and a half.
But I've already seen it.
(33:47):
It's benefits that we,
that we have successfully transplanted a number of patients living with living donor kidneys from people they asked because of the the tools and tips that they learned from big gas to give.
So,
you know,
learning about the perspectives of the,
of the recipient from the resources and and seeing the tips that they have to overcome the fear of asking for a kidney,
(34:15):
how to ask um,
and ideas to increase awareness,
such as sharing your story on social media and being ready for to answer certain questions about concerns that have perspective donor may have has really opened my eyes to um,
to how important of a resource this is.
And you know,
we've seen it in in real time that we've seen an increase in amount of living donor kidney transplants being done at our center from people that have gotten living donors from just from this program.
(34:49):
From learning how to ask,
what is it fundamentally about the process within the program or the tips within the program.
Do you think that kind of moves people into that into that zone of being successful with asking for a kidney.
It uses stories that,
of people that were in the same situation as a person that is waiting for a kidney transplant?
(35:12):
That,
you know,
it it's obviously a vulnerable position,
but it it allows them kind of to to have a helping hand from someone that's that's gone through the same thing.
So,
and using the tips that a previous person is used to become successful and and and realize their dream of getting a living donor kidney transplant.
(35:37):
So I think it's an amazing resource and,
and I tell each and every one of my potential recipients and I'm evaluating to um,
to go and look at the resources on M.
K.
F.
For the guys to get.
It sounds like a big part of it is kind of like getting over this idea,
being,
being comfortable with the idea.
It's okay to ask.
It's okay to say no,
(35:58):
and it's okay to say yes,
these are all good.
These are all good conversations.
But if you don't have the conversation,
you're not gonna,
you're not gonna make progress.
Yeah.
And,
you know,
it's,
uh,
it's surprising sometimes who would be willing to,
who would be willing to be evaluated and who would be willing to donate.
(36:18):
But just as you said,
if you don't ask,
you know,
the answer is never gonna be yes.
Wonderful.
Well,
we actually are talking with Jennifer from National kidney Foundation very soon,
um,
and she's going to give us a deeper dive into into the program and how it works and,
and,
and how,
how people can engage with that.
(36:39):
It sounds like the process of big ask give could bring someone into,
into the,
into being prepared to donate a kidney,
then you might find that that kidney is not compatible with the recipient.
You could still donate that kidney to somebody else and do a swap.
(37:03):
So the person that you want,
you wanted to give a kidney to gets a kidney.
Um,
that that is a good match.
So that exchange process is really important.
I completely agree.
And and especially with people having needing more than one transplant in in their lives as um,
(37:26):
as our long term graft survival increases,
we're going to see more subsequent transplant needs.
And and those patients may be a little bit more difficult to match.
Um,
so,
and not to mention that parrot exchange,
you know,
you're not just helping one person,
you're helping multiple,
(37:46):
you're helping everyone in that chain because without you as a donor,
the chain would not exist.
Dr Bregman,
it's been wonderful to have you on the podcast today.
Thanks so much for sharing all your insights and really important information.
Just in closing is there anything else you'd like to to add or share about living donation and transplant?
(38:08):
First off,
thank you so much for having me.
This is this has been a pleasure.
But you know,
I I just want to tell people that are trying to get a kidney transplant,
you know,
although the prospect of Xeno transplantation is exciting,
like,
you know,
pig kidneys,
you hear about it in the in the news and the possibility of implantable artificial kidneys in the next few years,
(38:32):
kidney transplant is it still remains the treatment of choice for kidney failure in terms of quality of life,
freedom from dialysis,
fluid and dietary restriction in longevity.
Living donation can take away the need for dialysis at all by getting a preemptive transplant with less waiting time,
(38:54):
better function,
immediate function and improve survival.
So,
I just want our potential recipients to,
you know,
to be aware of that.
It's the treatment of choice.
It's the best choice right now and will probably remain so for a long time.
Yes,
I look forward to um the the new advances in the field over,
(39:15):
you know,
over the next 30 or something years that I'll that I'll be practicing transplant nephrology.
I really don't see Away at least in the next 20 or so years that living donor kidney transplant won't be the preferred treatment of choice for kidney failure.
Wonderful,
well,
thank you again for joining us and we hope to see you again on the podcast in the future.
(39:39):
I'd love to be here.
Thank you so much and many thanks to Jim and to Dr Adam bragman for joining us today in our next episode.
We'll be hearing from the National Living donor Assistance Center about the financial help they can provide to people planning on donating a kidney for transplant.
(40:05):
And we'll talk with Reza Simon about the donor seeker program.
Thanks again to our underwriters Foxes pharmaceuticals and thanks for listening,
Be safe and be well.
Copyright Project Advocacy,
2022.
Welcome back to kidney transplant conversations.
Episode 12.
In our last episode we heard Darryl's story how he needed a kidney transplant because of kidney cancer.
He'd used a variety of resources to help find a donor,
including the National Kidney Foundation Materials that are available as part of the program,
(00:31):
The Big Ask,
The Big Give and we discussed how people close to him help get the word out that he needed a donor and how it felt to receive the gift of life.
This week we meet Jim who responded to the Big Ask and donated a kidney to Darryl.
(00:52):
Jim shares with us his side of the story explaining why doing this was so important to him.
And Jim also discusses how he feels he has benefited from the experience.
And later in this episode,
Dr Adam Bregman joins us to talk about his experience with kidney patients using resources from the Big Ask the Big Give
(01:14):
program helping to find their own living donor.
We also discussed the extent of health disparities in kidney disease and some of their causes.
Kidney transplant conversations is underwritten by Veloxis Pharmaceuticals, Inc,
and all views and opinions expressed in the podcast reflect those of the participants and do not necessarily represent the views and opinions of Veloxis Pharmaceuticals or the producers.
(01:50):
So welcome Jim Norwood to kidney transplant conversations and in our conversation today,
I'm hoping we can share some insights into the process of becoming a kidney transplant donor that you experienced so that other donors and donor recipients can better understand all that entails.
(02:11):
So let's start with a little bit of background,
How did you become friends With your eventual recipient,
Darryl because I know you guys go back a long way.
Darryl and I,
we met in 2000,
we were at the Command and General Staff Officer College,
which is an army school.
Our families are with us and we ended up being neighbors.
(02:34):
There were 50 or so couples in this cul de sac.
This condominium cul de sac,
you know,
so we immediately had all these friends and our kids had all these friends,
Darryl and Pam,
his wife and our kids just just hit it off.
Uh,
and you know,
we lived right next door to each other.
So wonderful.
(02:54):
And how long ago was that?
That was in 2000 and so we were there for about 11 months.
We did some different adventures together.
We went skiing together locally,
went out to dinner,
had some barbecues,
you know,
that kind of thing.
We just became really good friends and you know,
Darryl and I realized that uh,
(03:16):
we started calling each other "brother" because we have a lot in common and we just had that special connection.
We just felt really comfortable with each other.
And how did you come to learn that Darryl was in need of a kidney?
It was probably 18,
19 years later and my wife told me that Darryl was having problems,
(03:38):
he had lost a kidney had kidney cancer.
He was likely to lose the other one.
You know,
I reached out wishing the best hope everything would be okay.
And it was probably a couple of years later that they had sent an email out.
Friends,
family connections.
Just kind of explaining Darryl's situation at this point.
(04:00):
I want to say you've been on dialysis maybe two years,
2.5 years.
And my wife we were we were actually eating out and she said would you consider donating?
And I said absolutely I've got to he needs one.
So so why not give up one if I can.
And that kind of started the process and very informal manner over over dinner.
(04:21):
And that was just you and your wife talking about the situation with a friend.
It was and then once my wife realized that that I was serious,
she reached out to Pam who is Darryl's wife,
they put us in touch with the the coordinator at U.
N.
C. University of North Carolina.
(04:41):
And I began the process.
Was it a difficult conclusion for you to come to to start that process?
I mean did you really wrestle with it or did it feel like this is like the natural,
this is like a natural obvious decision.
I never wrestled with the decision.
It just seemed like something that I should do.
(05:05):
You know,
if I could help Darryl then that would help his family.
They're a wonderful family.
Darryl's wonderful person.
You know,
he had a young granddaughter,
Michelle and I had just been informed that we were gonna be grandparents and I just started you know thinking about his family you know how they would feel if something you know if Darryl were uh if things were to go south so to speak.
(05:28):
And so I just wanted to help him and help the family.
Did you tell him right away that you were considering this or did you kind of go for an assessment first to make sure that it was a possibility.
I told him that I was interested.
Uh And that I had been contacted by U.
(05:48):
N.
C.
That I had uh you know done the blood draw and everything and that it appeared initially that I was a match and you know I mean he was very very humble very grateful.
It was still too early in the process you know for me to be recognized as a as a valid match for him.
(06:10):
But I did kind of keep him informed as I would go through the different stages of tests and what kind of tests did you did you have to go through?
They checked me out thoroughly.
I had to do a couple of stress tests.
They forget what the procedure is called.
But where they insert the die and they track it through your system.
(06:33):
MRI's cat scans.
I want to say.
I went up there three times each time I went there was at least two days of tests so once they cleared me to donate you know,
I felt really confident that I was in good shape That I could handle it.
Um,
and that,
(06:54):
you know,
this,
this hopefully would be a good thing for Darryl.
It must have been quite an amazing journey to suddenly find yourself on with all of this kind of technology and testing and possibilities.
It was at the time that I donated the kidney,
I was 58 years old and I thought to be in reasonably good health.
(07:15):
I've always kind of taken care of myself um,
but just to have all that validated,
you know,
by the testing,
by the professionals.
Um,
them reassuring me that my quality of life would not change,
that I could continue to live my life as I had in the past.
(07:36):
You know,
it's just that all gave me kind of a sense of confidence that everything was going to be okay.
What about thinking kind of ahead to the future and spending the rest of your life with one kidney and potentially having a financial impact from,
from that whole process.
What were your thoughts around that?
(07:56):
And what kind of discussions did you have around that?
I really didn't focus on the finances so much because early in the process,
you know,
Darryl had formed me about,
um,
his go fund me site through the kidney Foundation,
that they were going to cover,
(08:17):
uh,
you know,
travel expenses,
little things like that,
that his insurance would cover,
you know,
the hospital stay and all that.
And the kidney coordinator and their team,
you know,
that's part of the process.
They want to educate you on everything from the finances,
the insurance,
(08:37):
you know,
all the way to later in life and things like that.
Plus as a,
as a retired soldier,
I have Tricare insurance,
which is really good program.
As a business owner,
I have my own insurance as well.
Uh,
so I just,
I was in a good position to not have to worry about a lot of things.
(09:00):
And probably a lot of people do.
And what about your kind of wider family,
friends and family?
Um,
did you let people know that you were going through this process?
And what kind of response did you get?
It's kind of unusual.
It is,
you know,
my,
my kids wanted to know more,
My boys wanted to know more.
They're both adult adult men.
(09:21):
Uh,
but they wanted to better understand the process and,
you know,
after the donation kind of the back end the recovery and uh,
would I be okay?
You know,
that's kind of what I got from my sister and my in laws,
they just wanted to really better understand the process.
(09:41):
And it's funny you mentioned,
um,
it's funny you mentioned your age at the time,
you were 58 obviously because I'm talking to so many people about kidney transplant.
The thought has crossed my mind.
Well,
could I be a donor?
And I guess I kind of thought,
well,
I'm probably a little too old to do that?
But clearly not now,
it's a the team,
(10:03):
the transplant team told me,
I said,
well,
you know,
you're,
you're not definitely not the youngest,
but you're definitely not the oldest.
Um,
and it really just comes down to,
you know,
are you physically a match?
And then what kind of shape are you at?
Like I said,
I mean I'm retired army,
but I still go to the gym and work out seven days a week.
(10:25):
That's I just do that for me.
That's not something that I started because I was going to donate a kidney.
So I've always just tried to take care of the body of my body.
Yeah,
it just goes to show being physically active.
It's it's it's key.
So,
jim how do you feel now you've been through this process as it changed you?
I think it's changed me for the better,
(10:46):
you know,
I kind of look at things a little differently.
I'm happy to be able to help Darrell,
I'm more patient,
more humble.
So I think it's,
I think it's helped me in terms of your kind of overall experience,
how could it have been better?
(11:06):
And I'm thinking really here,
you know,
for like some of the obstacles you came across or some of the,
some of the,
some of the ways you kind of went into the process?
Could it have been made better?
Do you have suggestions on how kind of becoming a donor could be improved?
I don't think I do.
You know UNC Chapel Hill they have the process down.
(11:30):
And so my perspective is only you know towards that one facility that one institution they knew what they were doing just their whole process.
Any question concern they were able to address it a lot of times before I would even ask the question.
What's interesting is I made this donation right in the middle of Covid originally scheduled for March and then it got pushed in May and and that frustrated me because you know I had my game face on.
(12:00):
I was ready to go in March.
Um you know that I had to get my game face on again and go in May and Darryl and I walked into the hospital with our families.
They were not allowed.
Um And it was you know U.
N.
C.
Was very accommodating keeping the families informed.
(12:23):
Uh it's it's a rather long procedure you know 4.5 5 hours on the table.
But when I woke up you know my wife was there in the room with me and it just they took really good care of me.
So they did an amazing job at a really difficult time.
Well it's really really wonderful to hear your story.
(12:44):
Really appreciate you know the insights that you've shared.
What would you what would you say to other people who are thinking about donating,
Who may be considering that they might give this gift for somebody.
I think that anyone is that's considering it.
You know,
my hat is off to them.
It is something very special for you as well as the recipient and it's,
(13:09):
it's not too often that you get to help somebody in that way and potentially save a life jim.
Thanks so much for joining kidney transplant conversations today and thanks for your service and thanks what you've done for Darryl,
who I now feel connected to having heard his life story.
The good news is is that Darrell is doing really well.
(13:30):
You know,
living a full life,
not tied to a machine and in dialysis anymore,
we do get together once a year,
kind of a reunion every May.
So this will be our second reunion coming up and uh his family,
that must feel quite emotional when you get together.
It is,
it's a very special event,
(13:50):
you know,
and a lot of,
a lot of people don't realize,
but you know,
Darryl is is african american and I'm caucasian.
He's six ft three,
I'm five ft 10 and they just stare at us when we call each other brother and see us out together.
You know,
it's regardless of demographics 11,
he's my brother and love their family and as they say,
(14:11):
all kidneys are pink.
Yes,
they are now.
We're going to talk with Dr ADam bregman.
He's a transplant nephrologist at the University of Minnesota Medical Center and also an assistant professor in medical nephrology at the University of Minnesota Dr BRegman.
(14:38):
Welcome to kidney transplant conversations.
Thank you so much for having me.
I'm excited to be here.
So we are today talking about the benefits of living donor donation and also talking about how we can help the process of asking for a kidney donor.
(14:58):
And National Kidney Foundation has got a terrific program called Big Ask Big Give and I know you've been working with that program with some of your patients and I'm looking forward to getting some insights into how that's working for you at the University of Minnesota Medical Center.
But first could you give us some information about what is the current status of living donor transplants in the context of overall donation and also how that is potentially affecting waitlist and waiting times for a kidney transplant.
(15:31):
You know,
in 2019,
before the,
before the pandemic hit,
it was a record breaking year for living donor kidney transplant.
There were almost 6900 living donor kidney transplants in the country that decreased due to the pandemic to just over 5200 when many centers briefly paused there Living donor programs but then subsequently rebounded to about 6000 in 2021.
(15:57):
Just to put that into context,
there were 24,669 kidney transplants in 2021.
So living donor kidney transplants accounted for 21.2% of all of kidney transplants at that time.
So,
you know,
about 40,000 patients are added to the waiting list for a kidney transplant each year for such a scarce and vital resource.
(16:22):
And at any one time,
there's about 100 and 40,000 patients that are wait listed for for a kidney alone.
Overall,
the the amount of patients on the waiting list has remained relatively stable over time despite increasing the amount of living donor kidney transplant and deceased donor kidney transplant with the improved regulation of kid Any transplants in the country.
(16:43):
So,
if you are waiting for a kidney transplant,
depending on the region that you're in and the blood type you are,
or the amount of antibodies that you have on markers to other people's kidneys.
You can wait from anywhere from one year to eight years depending on a variety of characteristics.
But just some statistics for patients that were wait listed in 2016,
(17:08):
we're still waiting for a kidney.
In 2019,
23% of them underwent a deceased donor transplant,
13.5% underwent a living donor kidney transplant and 20% were removed from the list.
And we haven't even been able to calculate the the average waiting time for a kidney transplant in over a decade,
(17:31):
because 50% of the candidates on the waiting list haven't undergone transplant since 2008 for a variety of,
of reasons.
So it really is in your best interest if you need a kidney transplant to try to get a living donor kidney transplant.
And it sounds like the number of living donor transplants that is taking place is trending up.
(17:56):
It's not a steep rise.
It's a very gradual,
that is correct.
You know,
I I I would love that if,
you know,
if if living donor kidney transplant would would comprise,
you know,
80 or 100% of of our of our total transplants.
But yeah,
you know,
even though it is increasing in number,
(18:16):
but because we're increasing the amount of overall transplants,
um,
that are being done by being maybe more aggressive with the deceased donor organs that are utilized.
The percentage overall remains remains the same.
So obviously it's a great solution for someone who needs a transplant to have a deceased donor transplant.
(18:38):
It's a it's a much better solution than,
say,
remaining on dialysis in the long term.
Um,
but why would a receiving a living donor kidney transplant be even better?
I'd like to explain that with with some statistics.
Okay,
so this is this is data from um,
from the organ procurement and transplant network from,
(19:01):
for transplants,
kidney transplants performed between 2000 and 2015.
Okay,
one year kidney graft survival.
Okay.
For a living donor organ was 97.5%.
And for deceased donor was 93.2%.
At three years,
it was 92.5% for living donors and 85% for deceased donors.
(19:26):
And then at five years,
85.6% for living donors and 74.4% for deceased donors.
So you can see,
you know,
using that data that the kidneys last longer if if they come from a living donor.
And what is not reflected in that data is that they typically work immediately.
There's a very,
(19:47):
a lot lower of a risk for needing dialysis even for a few sessions at transplant.
So,
you know,
not to downplay deceased donor transplant at all.
It is um,
it is life saving and life prolonging.
But if given the choice between living donor deceased donor,
one would um,
(20:07):
certainly want a living donor kidney transplant.
Plus the added benefit that potentially you could be waiting a far far shorter period for a living donor transplant.
But you do have to go through a process which you kind of have to lead yourself.
So we'll come onto that a little bit later.
Um,
has has living donation become easier and safer?
(20:31):
Has has surgery changed?
Um,
and what protection supports are in place for for living donors?
Because obviously they face some kind of financial and insurance implications.
So,
yes,
living donation has certainly become safer for the donor from a nephrologist standpoint when I evaluate a potential donor,
(20:53):
um,
I want them to understand the potential risk of kidney injury and kidney failure themselves.
But in general terms that the donor rate of end stage kidney disease doesn't exceed the end stage kidney disease rate in the general population,
even after taking out one of their kidneys.
That is because our donors are relatively healthy.
(21:15):
Well selected.
They don't have protein in their urine,
high blood Pressure,
diabetes.
Um,
you know,
depending on the on the risk factors of the of the donor,
whatever conditions that they may have,
their increase in risk for for kidney failure in their lifetimes could be 6 to 12 times the rate before donation.
(21:39):
But keep in mind,
That is the absolute risk is very,
very small.
As in like,
you know,
point like .3%,
after donation.
Uh,
you know,
20 year end stage kidney disease risk.
So,
you know,
in a in a paper that I was reading 20 the 20 year end stage kidney disease risk and the average donor is .34%.
(22:06):
And that is actually lower than the risk of the general population.
And you know,
now we have a lot more calculators and models to predict risk based on donor factors like age.
B.
M.
I.
Uh,
systolic blood pressure to identify higher risk donors and,
you know,
be able to warn them the possible risk and then the surgical complications such as wound infection and hernia have also decreased.
(22:33):
Now that most centers are using either laproscopic hand assisted donation or robotic techniques rather than open techniques.
So that means it's a very small incision.
Yes,
it is it is fairly small.
The actual incision,
the largest incision will be where the kidney comes out.
(22:56):
Okay,
So,
you know,
we're we're talking maybe six inches or so to your pa previous point about the protections or support.
You know,
I think that we've really made strides in the last in the last few years.
So recipient insurance typically covers donor medical expenses.
So that means the evaluation,
(23:17):
the donor surgery,
the follow up appointments,
the follow up blood tests.
But the National Living donor assistance Center,
the Ellen Dac um has resources that can provide reimbursement for travel,
lost wages and dependent care expenses.
In addition,
there are grants through the american transplant foundation and individual centers may have resources as well as well as certain parrot exchange programs that have their own benefits.
(23:47):
You know,
lastly,
the patient protection and Affordable Care Act has made it illegal to deny coverage or increased premiums for organ donors.
So a an organ donor does not need to be concerned about being denied health insurance in the future.
So there really has been a lot of progress in the in the area of general support.
(24:07):
You mentioned an L back and we already scheduled a future episode to talk with the team there.
Um,
and take a little bit of a deeper dive into how that whole program works who is eligible and what they will,
what financial support they will provide.
So,
um it's exciting to see all of those things falling into place.
I think one of the one of the concerns we we've seen on the on the podcast and previous episodes is the fact that we do see differences in terms of access to transplant and length of time spent on dialysis with minority populations.
(24:44):
So we see a disparity for african americans for Hispanics and also for asians.
Could you talk a little bit about what are the reasons for those disparities?
So we can kind of understand how we can work to address them.
Yes,
absolutely.
And and you know,
you're right,
it's extremely unfortunate that that is occurring that there is decreased access for patients of color.
(25:07):
So just to kind of give you an idea,
non hispanic and black patients are four times more likely than patients who are non hispanic and white to have kidney disease,
but only half as likely to undergo kidney transplant.
Black patients have disproportionately lower rates of living donor kidney transplant.
And these racial disparities persist.
(25:29):
Even after accounting for medical differences,
there was actually a recent study in C.
Jason in 2021 that showed that even after accounting for the social determinants of health,
black patients had a lower likelihood of kidney transplant by 26%.
They were 51% less likely to get a living donor kidney transplant.
(25:50):
But they actually didn't find any any differences in deceased donor kidney transplant.
You know,
talking about reasons why these disparities may exist.
It's complicated.
It could be due to one of three categories or even parts of each one.
So access to care meaning being referred at an appropriate time.
(26:14):
You can be referred for evaluation for a kidney transplant.
Once you're g fr,
your filtration rate reaches 20 mL per minute potentially they don't start seeing an astrologist until until later issues related to outcome after kidney transplant.
So so meaning the patient needs to be aware of what kidney transplant is.
(26:37):
Want to go through the process and then following through with care,
having the ability to go to the doctor whether that means you know having access to transportation and there are certainly some you know,
funds that one will need to to purchase their medication even with the assistance of of insurance,
a few things that have been done in the last few years to um to try to remedy this disparity was trying to eliminate the estimated G.
(27:05):
F.
R.
Correction for race which could delay referral for transplant evaluation.
So that's been changed for a lot of health centers in the in the past few years because before that african americans would have a correction such that their G fr was estimated to be higher than the same creatine for a white person.
(27:28):
So that maybe their estimated G.
F.
R.
Was 23 mL per minute instead of 20 mL per minute.
Which would delay their um their referral for for kidney transplant.
And then in addition the Yunos decision to eliminate priority allocation for h.
L.
A.
B.
Antigen.
So basically a marker on cells that can be in higher preponderance in blacks was eliminated in 2003.
(27:57):
And that led to a 20% reduction in disparity in rates of deceased donor kidney transplant between minority and white recipients.
In terms of waiting time.
We certainly have a lot of room for improvement.
And you know,
by no means.
Is is it completely equitable right now it sounds like there are some barriers that are being reduced.
(28:21):
Um I just actually had my my annual checkup and I noticed that there was a notification on my on my kidney data to say that they were removing the distinction.
Um and that was on that.
So I think that's an automated thing that it just goes to show.
These things are actually built into the electronic health record.
And that that difference for E.
(28:43):
G.
F.
R.
Between african americans and other patients historically was really just based on bias.
It wasn't based on scientific reality.
Yes,
by large.
Absolutely.
You know,
and I think that we need to take each patient individually a frail 70 year old woman with a creatinine of one and a and a muscular 25 year old man with a creatinine of one obviously had very different kidney function.
(29:11):
Okay,
Because of the difference in muscle mass.
So I don't think that it was fair for for there to be a correction factor for blacks when that potential recipient could be bed bound or less muscular than somebody else.
So I do think that it was a step in the,
in the right direction.
(29:32):
So what are the challenges with increasing living down to transplantation?
We realized that there were a lot more challenges during the pandemic.
So canceled transplants,
not being able to meet colleagues or friends in person to either ask or even increase awareness in uh,
(29:52):
for a living donor kidney transplant because those people may potentially have been donors in in the past if they knew about a person's medical issues.
But I think,
you know,
as a whole,
the ability to see potential donors in a timely fashion um,
is certainly important to speed up evaluations and increase the number of living donor kidney transplants.
(30:17):
And you know,
not all centers are involved in paris exchange.
So parrot exchange involves donating a kidney to someone that is not your intended recipient.
In order to have your intended recipient get um,
a well matched and well functioning living donor kidney.
(30:38):
So you may know that there are multiple um,
paired exchange programs in the country to two main ones.
And not all centers are involve at all.
And you have some centers in one and some centers in the other.
So I think that in order to really increase the amount of living donor kidney transplant,
(30:58):
especially for patients that have a lot of antibodies or you know,
have say,
o blood type,
which they can only receive an O organ by and large.
I think we really need to have one parent exchange network for the entire country.
And then not to mention our donor pool is decreasing because of the increased incidence of obesity,
(31:21):
metabolic syndrome and diabetes.
Um,
you know,
in this country,
so we wouldn't want to take a kidney from somebody who has diabetes because of their potential risk of diabetic kidney disease and subsequent failure potentially in their lifetime.
So that's really a fundamental preventive health challenge that we have in the United States,
(31:42):
because the increase in obesity rates has continued,
it keeps going.
It just keeps going up.
We've got reduced physical activity,
increased obesity rates.
And so that's reducing the pool of patients who are available to actually donate a kidney,
whether it's a living donation or whether it's a deceased donor donation.
(32:02):
And,
you know,
the donor may the potential donor may actually have the same disease that led to kidney failure in their intended recipient.
And,
you know,
the type two diabetes,
diabetic and property is the leading cause of kidney failure.
And in the Western world,
you know,
from conversations we've had with patients on kidney transplant conversations,
(32:23):
it's pretty clear that sometimes it appears to the patient that going through the transplant process.
Whether it's asking patients asking for a living donation from people they know or from their family Or whether it's thinking about the additional finances and the complexity of it.
It can seem like a much heavier lift than just staying on dialysis.
(32:44):
And we had one patient who recently was talking about his journey where he spent 19 years on dialysis before receiving a transplant.
And it wasn't that he was waiting for a transplant for 19 years.
It was for a lot of that time he really didn't want to be in the process.
He felt he felt some reservations about going into the process.
(33:05):
So I,
so I think it's um,
it's interesting to talk about what's happening with the Big Ask Big Gift program,
which National kidney Foundation has put together and is and is being used by many,
many centers because it seems like part of the barrier is kind of having the,
having knowing what to say.
(33:26):
Have you been using the program with your patients and what kind of,
what kind of experiences have you had?
Yeah,
absolutely.
So,
um,
you know,
we we've been a part of big ask to give for um,
for um,
for a little bit now and,
and,
you know,
I've only been at the University of Minnesota now for for a year and a half.
But I've already seen it.
(33:47):
It's benefits that we,
that we have successfully transplanted a number of patients living with living donor kidneys from people they asked because of the the tools and tips that they learned from big gas to give.
So,
you know,
learning about the perspectives of the,
of the recipient from the resources and and seeing the tips that they have to overcome the fear of asking for a kidney,
(34:15):
how to ask um,
and ideas to increase awareness,
such as sharing your story on social media and being ready for to answer certain questions about concerns that have perspective donor may have has really opened my eyes to um,
to how important of a resource this is.
And you know,
we've seen it in in real time that we've seen an increase in amount of living donor kidney transplants being done at our center from people that have gotten living donors from just from this program.
(34:49):
From learning how to ask,
what is it fundamentally about the process within the program or the tips within the program.
Do you think that kind of moves people into that into that zone of being successful with asking for a kidney.
It uses stories that,
of people that were in the same situation as a person that is waiting for a kidney transplant?
(35:12):
That,
you know,
it it's obviously a vulnerable position,
but it it allows them kind of to to have a helping hand from someone that's that's gone through the same thing.
So,
and using the tips that a previous person is used to become successful and and and realize their dream of getting a living donor kidney transplant.
(35:37):
So I think it's an amazing resource and,
and I tell each and every one of my potential recipients and I'm evaluating to um,
to go and look at the resources on M.
K.
F.
For the guys to get.
It sounds like a big part of it is kind of like getting over this idea,
being,
being comfortable with the idea.
It's okay to ask.
It's okay to say no,
(35:58):
and it's okay to say yes,
these are all good.
These are all good conversations.
But if you don't have the conversation,
you're not gonna,
you're not gonna make progress.
Yeah.
And,
you know,
it's,
uh,
it's surprising sometimes who would be willing to,
who would be willing to be evaluated and who would be willing to donate.
(36:18):
But just as you said,
if you don't ask,
you know,
the answer is never gonna be yes.
Wonderful.
Well,
we actually are talking with Jennifer from National kidney Foundation very soon,
um,
and she's going to give us a deeper dive into into the program and how it works and,
and,
and how,
how people can engage with that.
(36:39):
It sounds like the process of big ask give could bring someone into,
into the,
into being prepared to donate a kidney,
then you might find that that kidney is not compatible with the recipient.
You could still donate that kidney to somebody else and do a swap.
(37:03):
So the person that you want,
you wanted to give a kidney to gets a kidney.
Um,
that that is a good match.
So that exchange process is really important.
I completely agree.
And and especially with people having needing more than one transplant in in their lives as um,
(37:26):
as our long term graft survival increases,
we're going to see more subsequent transplant needs.
And and those patients may be a little bit more difficult to match.
Um,
so,
and not to mention that parrot exchange,
you know,
you're not just helping one person,
you're helping multiple,
(37:46):
you're helping everyone in that chain because without you as a donor,
the chain would not exist.
Dr Bregman,
it's been wonderful to have you on the podcast today.
Thanks so much for sharing all your insights and really important information.
Just in closing is there anything else you'd like to to add or share about living donation and transplant?
(38:08):
First off,
thank you so much for having me.
This is this has been a pleasure.
But you know,
I I just want to tell people that are trying to get a kidney transplant,
you know,
although the prospect of Xeno transplantation is exciting,
like,
you know,
pig kidneys,
you hear about it in the in the news and the possibility of implantable artificial kidneys in the next few years,
(38:32):
kidney transplant is it still remains the treatment of choice for kidney failure in terms of quality of life,
freedom from dialysis,
fluid and dietary restriction in longevity.
Living donation can take away the need for dialysis at all by getting a preemptive transplant with less waiting time,
(38:54):
better function,
immediate function and improve survival.
So,
I just want our potential recipients to,
you know,
to be aware of that.
It's the treatment of choice.
It's the best choice right now and will probably remain so for a long time.
Yes,
I look forward to um the the new advances in the field over,
(39:15):
you know,
over the next 30 or something years that I'll that I'll be practicing transplant nephrology.
I really don't see Away at least in the next 20 or so years that living donor kidney transplant won't be the preferred treatment of choice for kidney failure.
Wonderful,
well,
thank you again for joining us and we hope to see you again on the podcast in the future.
(39:39):
I'd love to be here.
Thank you so much and many thanks to Jim and to Dr Adam bragman for joining us today in our next episode.
We'll be hearing from the National Living donor Assistance Center about the financial help they can provide to people planning on donating a kidney for transplant.
(40:05):
And we'll talk with Reza Simon about the donor seeker program.
Thanks again to our underwriters Foxes pharmaceuticals and thanks for listening,
Be safe and be well.
Copyright Project Advocacy,
2022.
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