The sooner that they join when they find out that they have decreased kidney function, the better. Most of the people that come to our support groups tend to be either they just found out that they have some sort of kidney problem, and they want to learn about dialysis and transplant.
Christopher Springmann: That's Debra Elmore, Executive Director of the San Francisco Bay Area Association of Kidney Patients, a support group reaching over 1,100 patients, family members, and nephrologists. Deborah is joined by Philip Wyche, President of the BAAKP.
You both have had exhaustive journeys with CKD, chronic kidney disease. And you both have had kidney transplants. You could have left the past behind, but you're looking forward with the Bay Area Association of Kidney Patients or BAAKP. What work do you need to do?
Phil Wyche: Well, there's our organization. We try to promote self-awareness, self-preservation, and continue the fight. When I first found out I was having kidney issues and kidney failure, I joined this organization to get educated. And then the more I got educated-- and it helped me to receive my kidney after an eight-year struggle, I remained on the board to help educate those that come to our support group.
CS: Debra, when do people typically join a support group like BAAKP? And in your estimation, when should they join?
DE: The sooner that they join when they find out that they have decreased kidney function, the better because there are things that they can do to make themselves healthier and to try to preserve their kidney function. Most of the people that come to our support groups tend to be either they just found out that they have some sort of kidney problem, and they want to learn about dialysis and transplant.
CS: Debbie, you have told me that often family members will come to the support group. Is that unusual?
DE: No.
PW: Not at all.
CS: Who would like to take this? In fact, I'd like to hear an answer from both of you.
PW: The reason why I say no, because a lot of times the patient is non-compliant with trying to follow the doctor's orders or such as lose weight or quit drinking. There's a lot of discussion among the groups that we hold, support groups, that we have to convince people this is either going to be this, our you're going to die. There's only two choices.
People have a tendency that are-- have never experienced it, or there hasn't been anybody in their family that's had kidney failure. Those are the ones that have the most resistance, because all they hear about is the bad things, the needles, the blood, the machine, the fatigue. That's not necessarily true. We help guide everybody and try to be positive and encouraging. Those people tend to come back and learn more.
CS: Debra, would you please give us examples of members of the BAAKP who have benefited by a change in attitude and outlook, perhaps with increased hope from your work and that of the organization?
DE: I'm pointing to Phil, because I know the story that he's going to tell.
PW: There's two in particular that just refused totally to have a transplant. They came to our support group in the East Bay and was bought by a support person. The support person was all for it, trying to get their spouse or significant other to do it. But they put up a lot of resistance, a lot of it.
We have another person in particular that attended maybe over 100 support groups. But he was always, no. And then one day out of the blue, he just decided now it's time. I've heard enough. I'm going to do it. And he has done it. Currently, we've had, through all the support groups that we have attended, we have nine people that have attended our support groups that have had a successful kidney transplant.
CS: Oh, really?
DE: Actually, I would have thought that the number was higher of people that have gotten transplants. I think it's hard to measure because we don't always know why they don't come back. And as we said before, a lot of times once people do get a transplant, then they don't come to our functions anymore. But we had somebody last year that came that we hadn't seen in a couple of years. And he said that we made the difference in him getting a pre-emptive transplant by attending our support groups and our educational presentations.
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CS: Support group members can learn to live their best life possible with kidney disease and dialysis, while bringing their family together, too. A transplant is often a goal for kidney patients, but ultimately, quality of life is what matters most.
Phil, I think it's important that listeners understand that your journey through the woods of dialysis denial-- and I'm quoting here-- that you were not a cooperative patient. You ignored the doctor's advice. And you resisted taking your blood pressure meds on time.
PW: That's true.
CS: This journey also included adverse drug reactions, a cancer that developed, a bleeding ulcer, bouts of depression that you have evolved, that you are now a woke person.
PW: Correct. Yes, very woke. Well, in the beginning, I think it was more of an ego situation because I was always been active in sports and stayed busy constantly. And I always do-- keep myself doing something other than sitting at home. In the meantime, I worked at a pharmacy. So I had seen a lot of patients come in with kidney disease when they first started and as they kept progressing, they're worse and worse, and then they don't come no more. And so that kind of scared me too. I have a very supportive wife, who actually took time off from her job to help me walk through all these processes I had.
CS: A big shout out to Kimberly and the kids.
PW: Thank you.
CS: I was very, very touched by your story. And they are wonderful folks. Let's discuss the important-- the crucial role of nephrologists, as I imagine they actively recommend support groups, especially as patients get closer to their need for dialysis as their kidney function deteriorates. Tell me about the role of the nephrologist.
DE: Nephrologists could definitely do more. We have some nephrologists that we are working with that are very good about putting our newsletters and our flyers for our events in their office and telling their patients about us. But we have a lot of people that find us on the internet because they've asked at their nephrologist office, and they don't know of any support groups. So we're trying to get the word out to more nephrologists so that they can refer people to us.
CS: There is a very conscious effort on the part of Satellite Healthcare to move people into support groups earlier, into exercise groups before they start the dialysis experience. This preemptive approach to treatments seems like a very positive thing. Would you agree with that?
PW: Absolutely.
DE: Definitely.
PW: One of the things about being compliant when you're preparing yourself for a transplant or while you're doing dialysis, the fatigue sets in. And so exercise is very important. And then weight is very important, and your water intake is very important. So those exercise programs that Satellite's-- that are putting together are very helpful for the patient in millions of ways.
CS: Ah.
PW: We always encourage patients who come by themselves, so when they attend the next time, bring a support person. One of the key things we also mentioned is that when you find out, you gather your family in a roundtable discussion. Let everybody know-- my kidneys' failing. I'm at stage whatever, 1, 2, 3, or 4 or 5. And I may change. My attitude may change. So I need some help.
CS: Absolutely. Well, Debra, I was just about to say this-- and I'm so glad you brought it up, Phil-- I should think that one of the roles of the Bay Area Association of Kidney Patients or BAAKP is to help people avoid depression and perhaps deal with it, social isolation, and bring the family together as a support group, especially around diet and exercise issues. That member of the family, the patient, does not want to be ostracized because everyone else is chowing down on pizza, and there's nothing for me to eat.
PW: That's right. [CHUCKLES] That's correct.
CS: It's been said that accepting reality is a higher form of consciousness, and I agree with that. Waking up to the reality of a chronic medical condition like endstage renal disease, making a plan, getting everyone onboard, this is really about life and death. Can you expand on that?
PW: Absolutely. What I did is when I finally-- the light bulb came on is that I was advocating too much for other people then myself. And we try to tell people about the different stories of people who come through our support groups. What made them turn the light switch on, saying today's the day I'm going to do it.
CS: I got the impression, too, that you felt that you were following behind. It was just a series of setbacks and defeats.
PW: Yeah. Especially with the cancer. When you get cancer, you're off the list automatically for three whole years.
CS: Ohh.
PW: But you're still doing dialysis. And that was the most depressing part of my time.
CS: Well, I'm glad you're here. I'm glad both of you are here. Debra, your history goes back--
DE: Generations.
CS: Yes. Your grandfather and great-grandfather died before the age of 45 of kidney disease. Your father discovered he had kidney disease at age 35 in 1974.
DE: Right.
CS: And it wasn't until 2016 that genetic testing revealed the cause of kidney disease in your family, Uromodulin kidney disease. Did I pronounce that correctly?
DE: Yes, you did.
CS: Oh, my goodness.
DE: I'm impressed. And it's UKD for short, which makes it easier.
CS: Let's try UKD. When you discovered that, was there a moment when you said to yourself silently-- and I hope you'll tell us all-- why didn't someone pick this up? Why didn't someone recognize this pattern of disease in the family?
DE: Definitely. We as a family had recognized it, 1980, when my sister and I were being tested and found out that our kidneys weren't 100%.
CS: Oh, that's right. You were rejected as donors for your father.
DE: Yes. And at the time, they told us, "oh, well, what's wrong with your father's kidneys won't affect you. This doesn't mean anything. It's not hereditary." But we knew-- here's three generations of kidney failure. How can you tell us this isn't hereditary?
CS: I'm sure that drove you crazy.
DE: It did. [LAUGHS] He went on dialysis, hemodialysis, then got a kidney from a deceased donor. That lasted about 5 and 1/2 years. And then he went back on dialysis and lived about another five years after that.
CS: Wow. You received what I call the magic telephone call from a friend named Michelle.
DE: My friend, Michelle. Yeah. [CHUCKLES] She's my very best friend.
CS: Part of Michelle is part of you. You have one of her kidneys. And what is the name of that kidney?
DE: Harvey.
CS: Harvey, the kidney. [LAUGHS] I have no idea how you came over that name, but it's very appropriate.
DE: She just liked it. I was asking her about it. And as we went through the testing process, she said she's sort of detached from like ownership of this kidney and began to feel like she was carrying it for me, almost like a baby or something. And just the name Harvey came to her, and she started calling it Harvey.
CS: I like that. Your presence as officers of the Bay Area Association of Kidney Patients and your range of experiences is absolutely startling. Do people find that calming in the sense that, oh, gosh you've been there, and you've done that. I can feel more confident about your opinion?
PW: Oh, yes.
DE: Definitely.
PW: Every support group, there's always one.
CS: But you've got two.
DE: Phil and my's experience is different. We find, actually with the board members, everybody's story is unique. We've got so many similarities. It does help people to come and find out that, oh, somebody else has felt this. Somebody else has gone through that. It always helps just to know that you're not alone.
CS: In fact, Phil, you have said that it's important for people to check out the BAAKP site and watch the videos, which are sponsored and funded by Satellite Health Care.
PW: Correct.
CS: Because I firmly believe, and I think you do too, that people really identify with those issues much like your bio, which was really, really written from the heart.
PW: Thank you.
DE: In my instance, even though kidney disease ran in my family, I didn't let my work network know because I'm a contractor, and I was afraid that if they thought I was sick, that I might not get hired for a job. So I kept it a secret. My friends, obviously, knew, and my family knew, but the general public, in a sense, didn't.
CS: You're really encouraging folks to, when appropriate, to speak up and ask for help.
PW: It's been very difficult on several occasions. But back to a Debra was talking about being informed, a lot of times when you-- after you see your doctor, and they explained to you about your kidney is failing, and you have the potential to be going on dialysis, we try to encourage the patient to go see a social worker because the social worker can tell them about the Disability Acts and how to tell your employer for long-term and short-term disability.
A lot of them then won't tell it because they don't want to be fired. A lot of them aren't informed about that until they come to our group and find out, oh, I could do that? Yeah. You have to go to your employer and tell them.
CS: You also discussed working towards a transplant, Phil-- and I'd like to direct this question to you, too, Debra-- that just getting on the list and waiting, waiting isn't enough; that you need to be proactive; that active participation in securing a transplant is important to making it happen. And, of course, you also need to stay in shape and watch your diet.
PW: Correct.
CS: And be ready when that call comes because you have to qualify, don't you?
PW: Yes, you do. But there's two other issues, or it could be more. But a lot of people get kidney failure from high blood pressure and being a diabetic.
CS: Yes.
PW: So they're fighting a double battle. And that's what sometimes is just overwhelming for one person.
CS: How do you counsel people, if that's the right word? How do you engage people in that conversation when they're having a tough time, and as you suggested, they're overwhelmed by the reality of the experience?
PW: Well, once they attend their support group, and then we get a general feel of what type of a-- or what range of kidney failure they're at, there's always somebody in the group at that level or been at that level. So we let them chime in and tell them what they did or what happened to them. And then everybody else will chime in, "well, you really don't have to worry about that. This is what I did to overcome it."
So we've had several people come in just in tears, couldn't believe it. And they leave a little confident. Come back, and then you don't see them no more. And then one guy in particular, he attended every single one for, like, eight years, and he just didn't want to do it. And then finally, he shows up one day in a gown from the hospital where he took a taxi cab to come let us know he had a kidney transplant. It was that important to him.
CS: [LAUGHS] That's a wonderful story. This must be very gratifying work for both of you to see how people change, how they evolve, and eventually find what they're looking for. That maybe a transplant or perhaps just reassurance that they're not alone anymore.
PW: Correct. One of my volunteer responsibilities is that after every support group, I wait a couple weeks, and I'll call that person and stay in touch with them. Yeah. Just to make sure and let me know that we just care. It's not a one-time thing--
CS: Wow.
PW: --try to show that we care with everyone that attends a support group.
CS: Do you ever find that you're essentially mentoring people in addition to not only chatting with them, and, of course, listening, which is a very, very important quality?
PW: Some of the patients that have had transplant have called me at home saying, "Phil, this doesn't look right. I don't feel right. I don't want to go call my doctor because they may take the kidney back." True story.
CS: Oh, really?
PW: Or they figure they'll have to go back in the hospital. It's been several weeks. They're trying to repair it or keep it functional. I always tell them that's part of the transplant. Just call your doctor and let them know. I always advise them, because I'm not a physician--
CS: Sure
PW: --but I just give the recommendations from past experiences and guide them through it. Even before they've had a transplant the night before, Debra, in particular, she called me a couple of days before, and we talked about a good hour. And she was ready for it.
DE: Thanks to Phil, because I was scared to death. [LAUGHS]
CS: And by the way, after you had your respective transplants, as you came out of the fog of anesthesia, what were you looking for?
DE: I felt so much better right away. That's what I was looking for. I just felt so energized. The doctor said as soon as he hooked up Michelle's kidney inside me, that it immediately squirted urine. It worked immediately. [LAUGHS]
CS: Wow! I think that's a very graphic, appropriate--
DE: [LAUGHS] Yeah.
CS: [LAUGHS] That is the squirt of life.
PW: For me, it the first person-- when I opened my eyes, I was looking for my wife just to say we finally did it together. Not just me. Just it was us as a team.
CS: Well, you did do it together.
PW: Yes, we did. Yeah. It was a hard road, but we made it to the end together.
CS: Right. How old are the kids now, Phil?
PW: My youngest is 18. My oldest is 49.
CS: Well, the kids must be very proud of you.
PW: Well, thank you. Yeah, they are.
CS: Yeah, that's sweet.
DE: I'd just like to add that, in addition to the support groups, our goal is to educate and support kidney patients. We also have educational presentations where doctors and social workers and dietitians speak twice a year. And then we publish a newsletter. And you can watch the speakers on the videos on the website.
CS: I'd like to thank both of you for joining us today on NephTalk.
PW: I appreciate you. I really do.
DE: We appreciate your getting the word out to help kidney patients.
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CS: You can learn more about the San Francisco Bay Area Association of Kidney Patients at baakp.org. Support group meetings typically occur on a Sunday to accommodate the needs of in-center dialysis patients on their day off. The group's website is available 24/7, featuring sign-up information, newsletters, and videos. A valuable resource for national support group information is the American Association of Kidney Patients at aakp.org.
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NephTalk is a podcast series created with nephrologists in mind from Satellite Healthcare, a not for profit dialysis provider and clinical researcher with a special focus on home, as the industry's home dialysis leader. I'm Christopher Springmann and thank you for joining us.
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