It's Time To Blog!

Celebrating our 1 Yr Anniversary recently....

I finally realized a blog is just as important as the interviews, the social media accounts, or even the audio posted weekly on typical podcast sites: ITunes, Stitcher,Google Play, I Heart Radio, Pandora, Soundcloud, Spotify, or our hosting company Libsyn.  So here we go! 

Episode 1

Kidney Transplant

Audio Link: http://traffic.libsyn.com/podcastdx/Episode_1__Kidney_Transplant_.mp3

Transcription:

PodcastDX Kidney Transplant Episode 1.mp3

 

Jean Marie [00:00:16] Hello and welcome to podcast DX. This show that brings you interviews with people just like you whose lives were forever changed by a diagnosis.

 

Lita [00:00:26] I'm Lita,.

 

Ron [00:00:27] I'm Ron.

 

Jean Marie [00:00:28] And I'm Jean Marie.

 

Lita [00:00:29] Collectively we are the hosts of podcast dx. This podcast is not intended to be a substitute for professional medical advice diagnosis or treatment. Always ask the advice of your physician or other qualified health care provider for any questions you may have regarding a medical condition or treatment. And before undertaking any new health care regimen never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. I am here with Darnell and Rodney and  they're siblings. Whom have both received kidney donations at least once.

 

Lita [00:01:13] Hello and thank you for being on our show.

 

Danell & Rod [00:01:16] Thank you.

 

Rod [00:01:16] Glad you're here.

 

Lita [00:01:18]  How long has it been since your transplants Danell years was a long time Right?.

 

Danell [00:01:23] Mine was in early April. I will be coming up on 17 years.

 

Lita [00:01:29] 17 years.

 

Lita [00:01:30] And you only had the one?

 

Danell [00:01:31] And only had one.

 

Lita [00:01:32] . OK. And Rodney?

 

Rod [00:01:34] My first transplant was in nineteen ninety four.

 

Lita [00:01:38] OK.

 

Rod [00:01:39] Second one was in 2010. Was that right?

 

Danell [00:01:46] Do you remember Lita?

 

Lita [00:01:47] No I don't actually. I don't. So 94' was the first one...

 

Rod [00:01:53]  No. 2014.

 

Lita [00:01:55] OK. All right. So. What, what caused the first one to fail?

 

Rod [00:01:59] Well it's Darnell and my brother and I and Dad it's all the same "All Ports".

 

Lita [00:02:06] OK.

 

Rod [00:02:07] All Ports.

 

Lita [00:02:08] That's a.

 

 [00:02:08] Yes it's an immune problem. Your body attacks your kidney.

 

Lita [00:02:13] OK.

 

Rod [00:02:13] Like some people  have a problem with that their body attacking their heart.

 

Lita [00:02:17] Sure.

 

Rod [00:02:17] Our is our kidney.

 

Lita [00:02:19] OK so. Is there any new stem cell therapy or anything that can help you, like,  alleviate this so that your kidneys are....

 

Rod [00:02:29] Well I wouldn't work on us anyway. You might get to work on somebody whose kidney isn't already shot.

 

Lita [00:02:37] OK. OK

 

Rod [00:02:38] But there's no bringing ours back.

 

Lita [00:02:40] OK.

 

Danell [00:02:41] Yeah, But I don't know about the, like the stem cell. I don't know. That's a good question.

 

Lita [00:02:47] I'm just.

 

Danell [00:02:48] Doing research into that to see, I mean you know they're using it for a lot of things now.

 

Lita [00:02:53] Right.

 

Rod [00:02:53] Well the stem cell research now I think is mainly trying to grow.

 

Lita [00:02:58] New ones?

 

Rod [00:02:59] New ones,.

 

Danell [00:02:59] Yeah.

 

Rod [00:03:00] But you know you can't you can't. Bring a rock back.

 

Lita [00:03:03] No. But I'm just concerned that from, you know, like the first one that you got. Failed because your body is still attacked it. Right? The All Ports attacked it?

 

Rod [00:03:11] Essentially. Well I'm not so sure it was that so much as just transplanted kidneys don't last forever.

 

Lita [00:03:21] OK.

 

Danell [00:03:22] I got like a, 10 year,.

 

Lita [00:03:24] Warranty?

 

Rod [00:03:24] well,.

 

Danell [00:03:25] Well for that's the average,.

 

Rod [00:03:27] For average. Correct. And mine lasted ten years.

 

Lita [00:03:30] OK.

 

Danell [00:03:30] Almost to the month.

 

Rod [00:03:32] Yeah.

 

Lita [00:03:32] And Danell, yours has been 17 years?

 

Danell [00:03:35] Yes I've been 17.

 

Lita [00:03:37] Where did you get the deluxe model?

 

Danell [00:03:38] I think I might have! (laughter)

 

Rod [00:03:39] Well I think hers was a better match than mine was mine was. Just a mediocre match hers and my brothers are both have pretty good matches.

 

Lita [00:03:48] OK.

 

Danell [00:03:48] Yeah they told me that mine was as good of a match as that one my kids had given it to me, so.

 

Lita [00:03:53] OK. OK.

 

Lita [00:03:54] So yes, so that that's probably important too.

 

Danell [00:03:58] Yeah.

 

Lita [00:03:59] And the, the last one that you got from me that one also failed.

 

Rod [00:04:05] Yeah.

 

 [00:04:05] So now. You’re back on Dialysis?

 

Rod [00:04:07] Yeah, That one didn't last very long at all. I think with all the antibodies that I had from the first one it makes it more difficult to match the second one. And also Barnes did not put me on prednisone the second time around which I think had a lot to do with killing it.

 

Lita [00:04:28] Wow.! They didn't.?

 

Rod [00:04:30] No, they don't believe in predinsone,.

 

Danell [00:04:32] They dont do it, So my brother, that had his out in Idaho which has just been about five years for him. It's never never done the prednisone thing..

 

Lita [00:04:41] Hmmm, Well I know Gina just had her liver and she was on prednisone  for probably 60 days.

 

Danell [00:04:49] Really?

 

Rod [00:04:49] Well I was on when they put my first one in I was on massive doses of prednisone but eventually got me down,.

 

Lita [00:04:57] weaned you down.

 

Rod [00:04:57] To a maintenance dose. And I had that the whole time I had my first kidney.

 

Lita [00:05:03] I don't know if Gina's taking it still or not but I know in the beginning she took.

 

Danell [00:05:06] . Yeah.

 

Lita [00:05:07] A lot.

 

Danell [00:05:07] And they might have with Scott too (Scott is their brother in Idaho). But I know that really we can back from the long term use,

 

Rod [00:05:12] When I got the second kidney, of course they didn't put me on prednisone. And after a few months it started dying off. While, while it was deteriorating, I was put on prednisone for a totally nother reason.

 

Lita [00:05:31] . OK.

 

Rod [00:05:33] And it almost stopped the deterioration of the kidney. But at that point I was about 90 percent shot already.

 

Lita [00:05:42] OK.

 

Rod [00:05:43] I am convinced. If they had put me on the prednisone initionally. Your kidney would have lasted me a lot longer.

 

Lita [00:05:50] Okay.

 

Rod [00:05:50] Because once I got on the prednisone the deterioration almost stopped.

 

Lita [00:05:56] But it was too late.

 

Rod [00:05:57] It was too late. Plus,.

 

Lita [00:05:59] Did you mention that to them? Like you know...

 

Rod [00:06:00] Well after is too late.

 

Lita [00:06:01] No. but I mean,.

 

Rod [00:06:01] But if I  didn't realize what was going on.

 

Lita [00:06:04] Yeah. And I'm just thinking for future people you know like maybe they should change their ways,.

 

Rod [00:06:07] yeah, well, tell them that, they don't want...

 

Lita [00:06:10] I know but, I mean, part of, part of education in the medical community I think is feedback from the patients so that they know what works what doesn't work.

 

Rod [00:06:20] What ended up happening then I had to have heart surgery.

 

Lita [00:06:26] Oh right,.

 

Rod [00:06:26] And of course they had to have the MRI's with contrast, which is a big no no for.

 

Lita [00:06:33] That kills the kidneys,.

 

Rod [00:06:34] Kidney Patients but at that point they had to do it and that finished the kidney off.

 

Lita [00:06:40] Sure. ok,

 

Danell [00:06:41] Did you, You had gone back on dialysis but you were still having some benefits of your kidney.

 

Rod [00:06:48] Yeah. I was still putting out.

 

Danell [00:06:50] We are convinced it was because he had gotten on that prednisone while.

 

Rod [00:06:52] I was still putting out a good bit of urine.

 

Danell [00:06:57] It lasted whai?  Maybe about a year?

 

Rod [00:06:58] Maybe yeah,.

 

Danell [00:06:59] Just before you had to have your heart surgery.

 

Rod [00:07:01] Yeah. Finished it off.

 

Danell [00:07:03] Yeah. Even though he had lost a lot of the benefit from your kidney it still you know we continue to have some.

 

Rod [00:07:09] Oh I was still putting out about eight hundred milliliters a day, which I  wasn't having to watch my fluid anywhere near like I do now.

 

Lita [00:07:18] OK,  How often do you go for dialysis now?

 

Rod [00:07:22] Three times a week.

 

Lita [00:07:24] oh, ok, What. What symptoms made you realize, I know it's a long time ago when you first realize that you had problems but what symptoms were there that made you think I've got a problem with my kidney.

 

Rod [00:07:38] None. My, our father had kidney failure.

 

Lita [00:07:43] OK,.

 

Rod [00:07:43] So in the process of they were trying to fight figure out why I had high blood pressure. I found out my kidney was already 25 percent shot 10 years before. They failed.

 

Lita [00:08:01] OK.

 

Rod [00:08:01] Completely.

 

Lita [00:08:01] So most you most many of these symptoms.

 

Rod [00:08:03] No. Most people do not realize what's going on until it's too late.

 

Lita [00:08:10] Hmm, So you're a little like high blood pressure a hidden thing right.

 

Rod [00:08:12] Your body compensates and people don't realize it's going, a lot of people, when they if they find out they have kidney failure when they're in the hospital. Because they get you get flu like symptoms they get feeling just totally run down. That's when they find out. I knew for 10 years ahead of time it was coming.

 

Lita [00:08:35] Because of your dad.

 

Rod [00:08:36] Because my dad.

 

Danell [00:08:37] Right.

 

Lita [00:08:37] And when your dad was diagnosed they found out that it was a genetic problem. Correct?

 

Rod [00:08:44] No.

 

Danell [00:08:45] Actually they didn't find out because dad was. He was just diagnosed with kidney failure.

 

Lita [00:08:50] OK.

 

Danell [00:08:50] They thought it was all brought on by hardening of the arteries.

 

Lita [00:08:53] OK.

 

Danell [00:08:53] Then Rodney when they had diagnosed him again just kidney failure. When. When I started showing signs. The doctor we all had the same nephrologists.

 

Lita [00:09:04] Right,.

 

Danell [00:09:04] You know he's like... hmmmm?

 

Lita [00:09:05] yeah yeah.

 

Danell [00:09:07] So actually I went and got the biopsy that diagnosis with the All Ports.

 

Lita [00:09:12] OK. And what is all ports Exactly?

 

Danell [00:09:14] It's a slow. It's an auto immune but it's just basically a slow deterioration of the glomeruli of the kidney, which is just basically the body.

 

Lita [00:09:22] The filter .

 

Danell [00:09:23] Yeah,.

 

Lita [00:09:23] OK.

 

Danell [00:09:24] Yeah it's a filtering system of the kidney, and there's you know.

 

Lita [00:09:27] They haven't come up with a cure for that.

 

Danell [00:09:30] That's one of the things that happens.

 

Lita [00:09:32] and all of your, You have one brother?

 

Danell [00:09:36] Mhmm.

 

Lita [00:09:36] Besides Rodney? and he has it as well.

 

Danell [00:09:38] Right, He has. Yes.

 

Lita [00:09:39] And he's had a transplant.

 

Rod [00:09:40] He's had a transplant.

 

Danell [00:09:42] He had a living donor transplant.

 

Rod [00:09:44] He was eleven years younger than me. So. Plus I, it progressed fairly rapidly. For me I went,. I went on dialysis when I was forty. They made it closer to 50.

 

Lita [00:09:58] OK.

 

Rod [00:09:59] Our father was 50.

 

Danell [00:10:01] Yeah.

 

Lita [00:10:05] So umm, just to let the listening audience know, umm, possible symptoms are decreased urine output. Fluid retention swelling in your legs ankles and feet drowsiness shortness of breath fatigue confusion nausea and in severe cases seizures or coma and chest pressure that's probably from the fluid.

 

Rod [00:10:31] Well like I said, most..

 

Lita [00:10:33] You didn't have, you just felt flu-ish.

 

Rod [00:10:35] Most people do not realize that's going on until the last minute.

 

Lita [00:10:41] OK.ok,.

 

Rod [00:10:41] They. They get flu like symptoms. They feel like crap and they go into hospital and they. Well your kidneys have quit.

 

Lita [00:10:49] So then what relief do they have? At that point.

 

Rod [00:10:52] Emergency dialysis.

 

Lita [00:10:54] OK. So once you have the dialysis does that take care of the symptoms.

 

Rod [00:11:01] Largely.

 

Danell [00:11:03] Which is really kind of what happened with my dad. He just you know. Started getting very ill. I don't remember what symptoms he had. But then at that point they just have. I don't know. you know, They. Checked. His kidney functioning was all and decrease the numbers. Lab numbers were elevated. We actually took him down to. Houston to a hospital down in Houston and that's where they figured out what was going on and basically he was just in kidney failure. So they did emergency dialysis they put a graft in his arm but they can't you can't use that for a while. It has to...

 

Rod [00:11:46] Emergency dialysis. They put a port in your central vein in your chest and they use that, that's meant to be temporary. They don't like to use them long term. Because too much risk of infection.

 

Lita [00:12:01] Sure sure. Anything close to the heart is. That what. Well you got your heart eventually?

 

Rod [00:12:05] No. No. I just. Just another {unable to transcribe}.

 

Lita [00:12:12] That will be a podcast in the future.(laughter) OK. One thing that we like to discuss with the patients that we're we're interviewing is caregiving in the home. After the procedure and equipment that might have helped you to recover after the procedure. Now as a kidney donor I know that you know, there were some things that assisted me on my recovery but and on the receiving end what. What did you guys do to to help you get over the hump when you got home from the hospital?

 

Rod [00:12:50] I initially started doing peritoneal dialysis that as most people think of hemodialysis where they directly clean the blood peritoneal, they put a port in my abdomen, you put fluid in your abdomen, it dwells, it draws the poison, the chemicals off and you change the flood periodically. I did that for years.

 

Lita [00:13:24] oh, Now, Is that when you say the fluid goes in is it into a vein or is it just a cavity?

 

Rod [00:13:30] It goes into the abdominal cavity and it by osmosis it draws the stuff off. OK. The toxins and the fluid off in your body.

 

Lita [00:13:41] OK.

 

Rod [00:13:41] I did that all together eight years.

 

Lita [00:13:45] OK. And is that the one that you do at home?

 

Rod [00:13:48] That's what I do at home. Yeah.

 

Lita [00:13:49] So you. From what I remember you hooked yourself up to a machine at night and you just let it run.

 

Rod [00:13:56] Yes initially the first year and a half for my first transplant I did it manually and hung a bag of dialysate, it ran it into my abdomen, put it in leave it in here about three or four hours drain that bag out. Put another bag again. I do that three or four times a day.

 

Lita [00:14:18] And this is something that you could handle yourself. They trained you and you didn't have any problem doing this at home.

 

Rod [00:14:23] Right.

 

Lita [00:14:24] Because it sounds very.

 

Danell [00:14:27] It was,.

 

Lita [00:14:28] Technical. Yeah it sounds scary, It sounds...

 

Rod [00:14:31] I after the I lost the first transplanted kidney, I end up doing what is called a cycler, where the machine does that for you. But I was on I had to be on that nearly 11 hours every night and course you can't go anywhere until it is done.

 

Lita [00:14:54] OK.

 

Rod [00:14:54] Well after six years of that my second transplant, lost the second transplant, I started doing it.

 

Lita [00:15:03] Sure.

 

Rod [00:15:03] I never slept well. Now it works better for other people. It didn't, I was tired doing it, all the work that goes with it. All the supplies. It's a constant job. This with hemodialysis I can go to Matt.(?). Go to the dialysis unit three times a week. They run me for three and a half hours. I'm done, done for two days. You don't have to mess with it anymore.

 

Lita [00:15:31] So it's like an oil change.{laughter}.

 

Rod [00:15:33] Pretty much yes pretty much.

 

Danell [00:15:36] But as far as like after the surgery I actually I did very well. I mean I was only forty seven. I was I was active,. {lost audio}

 

Rod [00:15:48] Are you ready?.

 

Lita [00:15:48] Yeah go right ahead.

 

Rod [00:15:50] When you get your transplant it's like you have an immense amount of energy for a good year. After my first transplant I was just Energizer bunny. I was working two jobs, taking care of my kids, and sleep in about five hours a night. God, I had just an immense amount of energy. That's, you start to come back to normal after a while but your body has become so used to having no energy.

 

Lita [00:16:24] OK.

 

Rod [00:16:24] Once this happens you just feel great.

 

Lita [00:16:31] ok.

 

Rod [00:16:31] you feel, really great.

 

Danell [00:16:35] I know talking about symptoms before,  It just all comes along so gradually that you don't realize you're feeling bad.

 

Rod [00:16:45] Yeah.

 

Danell [00:16:46] And then that you're tired.

 

Lita [00:16:50] It's draining.

 

Rod [00:16:51] Well that's it, after your, after your transplant and you feel so great. Then you realize how terrible you were.

 

Lita [00:16:58] You were before,.

 

Danell [00:16:59] Right.

 

Rod [00:16:59] Right.

 

Danell [00:16:59] And I also noticed things like my hair thickening back up after the transplant my nails getting hard after the transplant. Things that had started deteriorating maybe just over such a long period of time you just didn't notice it. Yeah. Afterwards you know after his first one, and then with mine, as far as recovery at home and action was very easy. I went back to work after five weeks and I'm a surgical nurse. So you know really very active and intense. You know. But we were both healthy. You know going into wealthy going into young and we had so many dialysis patients are on dialysis because they are diabetic.

 

Lita [00:17:42] OK.

 

Rod [00:17:43] And so they're fighting they're fighting that complication also. We didn't have that.

 

Lita [00:17:48] OK. So if someone had diabetes on top of the kidney failure.

 

Rod [00:17:53] oh yeah,.

 

Lita [00:17:53] They've got just another hurdle. That they've got to jump over

 

Danell [00:17:56] Right, right.

 

Lita [00:17:56] In order to heal.

 

Danell [00:17:58] Yes. Much more difficult in the healing process,

 

Rod [00:17:59] About actually .

 

Rod [00:18:01] About 30 percent of dialysis patients are there because they are diabetic.

 

Lita [00:18:06] OK. OK.

 

Rod [00:18:08] I worked for 10 years as a fireman on one kidney. Did great.

 

Lita [00:18:14] OK well one kidney working well I can tell you does, OK.

 

Rod [00:18:19]  Oh yeah yeah.

 

Lita [00:18:22] I've got no complaints

 

Danell [00:18:25] We're not the only ones getting by with one kidney

 

Rod [00:18:26] Unless you think you want to be a marathoner I don't think you would notice the difference.

 

Lita [00:18:30] Yeah I would never do that,.

 

Rod [00:18:31] It would just be a slower recovery.

 

Lita [00:18:35] OK.

 

Rod [00:18:36] Cause You'd wear yourself out. But like I said as a fireman I didn't notice it.

 

Lita [00:18:42] OK. Are you worried Danell, that you might be up for another one soon?.

 

Danell [00:18:46] You know I was around 10 years because basically Rodney like I said lost year at 10 years almost to the month. But you know it's 17 now. My last doctor's visit down was down at Barnes, and I've just been doing so well they're like you know which I had been going there just once a year for several years. And they're like that come back for two years now I still get I get my blood drawn every other month and it all gets into Barnes. So they you know they're watching that closely but you know they're like to come back for two years you're doing great. Because I have not once had any concerns about rejection that they're like you know you can put this on.

 

Rod [00:19:32] Well and the better the better your match the fewer drugs you have to take.

 

Lita [00:19:37] OK. OK.

 

Danell [00:19:38] And mine also was I had a cadaver donor and she was a same age I was.

 

Lita [00:19:48] OK.

 

Danell [00:19:48] So you know basically I've got you know it's not like I { un-able to transcribe}.

 

Lita [00:19:53] Yes it grows with you, right. OK. I wanted to discuss a little bit about the the different regions that you can apply for when you're getting a, an Organ, and I know that Rodney your daughter posted an ad on Matching Donors dot com for the second one in order to actually expand your reach when you were looking for a donor.

 

Rod [00:20:22] Well it is when you get on the list you're waiting for them to find you a donor Matching Donors dot com, dot com as a way for you to find your own donor.

 

Lita [00:20:35] You're like advertising.

 

Rod [00:20:36] Essentially.

 

Lita [00:20:37] Yeah.

 

Rod [00:20:37]  Right. right

 

Danell [00:20:39] Yeah. We put a, you know, told all about Rod you know his his life as a fireman.

 

 [00:20:47] Yeah actually I remember. I mean you know my memory is pretty crap,  {laughter} but I actually still remember how strongly the emotions hit me when I read your ad.

 

Danell [00:21:01] Awwe

 

Lita [00:21:02] That I said "why wouldn't somebody have given this guy one already, for crying out loud. Get him on the phone."

 

Rod [00:21:10] Well of course we never put this forth before you when you're on the list. You're waiting for someone to die.

 

Lita [00:21:18] Right.

 

Rod [00:21:19] It's not a question of. I'll give you mine.

 

Lita [00:21:23] Right. But the matching donors allows living right donors to donate a part of a liver or a whole kidney.

 

 [00:21:32] And of course my daughter was fantastic. She did all of that. I did nothing. She talked to different various people about me. At least two of them hinted around about being compensated which technically is illegal in this country.

 

Lita [00:21:51] Right. Right.

 

Rod [00:21:52] So she told them "Forget it". But she found you, or you found me.

 

Lita [00:21:58] Yeah. I found the ad and I was,  and it was, it was convenient that you were in Illinois. There wasn't a lot of transportation involved. You know I can imagine that some people that are are looking nationwide it might be a little bit more difficult if you have to commute or whatever. But ours was perfect. How long were you on dialysis the first time before you got to the.

 

Rod [00:22:25] Before the first transplant I was on dialysis for a year and a half. They found me a cadaver. OK after the first transplant failed I was on dialysis for six years before I got together with you. That one only lasted 10 months. Right now I've been on dialysis about another six years.

 

Lita [00:22:50] OK. And Danielle how long were you on dialysis before I act.

 

Danell [00:22:54] Oh I never had to go on for hours. Oh OK. Was that on the transplant list because now they will put you on it before you get on dialysis. Back when Rodney first started you had to actually be on dialysis before they would put you on. Yes. OK. I I think they figured out hey if we can get him going before the dialysis so I put on a list and told that I would have to be on dialysis within a year and actually it was four months.

 

Rod [00:23:24] She was getting at the point she was getting pretty rundown.

 

Lita [00:23:28] So it was it was like getting close to where you would.

 

Rod [00:23:30] Yeah. It was real close.

 

Danell [00:23:32] There four months is just really even the doctors were like "you were on that list. how long?". Like four months.

 

Lita [00:23:38] Right.

 

Danell [00:23:38] I had a rare blood type and I think well some real rare but I was Rh negative. So I think that could have gone either way. Sure it could have kept me on the list longer or.

 

Lita [00:23:50] If nobody else can take it right.

 

Danell [00:23:52] . Give me that one kidney that no one else could take. So yes I was blessed in that it was only four months.

 

Lita [00:24:00] Have there been any dietary changes to either of you since the transplants have you had to do anything,.

 

Rod [00:24:06] Well once you've had a transplant. No. If you're on dialysis it's extreme.

 

Lita [00:24:14] As far as sodium right?

 

Rod [00:24:15] Sodium. The main thing is phosphorous and potassium.

 

Lita [00:24:20] OK.

 

Rod [00:24:21] Dialysis does not rate remove phosphorus and it doesn't do a very good job removing potassium.

 

Lita [00:24:29] OK. Are those good or bad?

 

Rod [00:24:32] Well they're.... You know.

 

Danell [00:24:33] They're bad, if they {un-able to translate}.

 

Lita [00:24:34] Oh OK. So the levels to be high. Right. And your kidney normally takes care of those.

 

Rod [00:24:39] Correct.

 

Lita [00:24:39] OK I see.

 

Rod [00:24:40] The phosphorus level if you've got an excess of phosphorus it settles in your feet and I have neuropathy in my feet because that has destroyed the peripheral nerve endings in my feet. So it's more difficult for me to walk potassium that gets out of whack. It messes up your heart. That can be real serious.

 

Lita [00:25:08] Sure. But they keep an eye on it.

 

Rod [00:25:10] And then they keep an eye on it.

 

Lita [00:25:11] And medication to adjust levels or the.

 

Rod [00:25:14] . Well that's why take massive amounts of phosphorus binders when I eat the potassium the dialysis will remove it. To some extent but I've got to stay away from my potassium fluids.

 

Lita [00:25:29] Sounds like you guys have to turn into nutritionists in order to stay healthy as I.

 

Danell [00:25:36] Basically eat just like you can. We each have one kidney one good working kidney. So I mean you know you have to be intelligent about it it's just as much as you would in it you know hey what do you want in your body. But yeah. That's the great thing.

 

Lita [00:25:51] Well that's good.

 

Rod [00:25:52]  Like I can eat whatever I want.

 

Rod [00:25:54] Oh yeah I know when I had my first transplant I I would not. You do not know you're working on one kidney.

 

Lita [00:26:05] You mean you don't feel that.

 

Rod [00:26:07] I don't feel. And you're really no dietary limitations because of it.

 

Lita [00:26:13] Because the kidney's working well.

 

Rod [00:26:14] Right.

 

Lita [00:26:16] Are there any support groups or organizations that have been of assistance for either of you?

 

Rod [00:26:22] No,.

 

Danell [00:26:23] That we kind of chose not to. I mean basically that guy right there was our support group.

 

Rod [00:26:28] That's true.

 

Lita [00:26:29] Well  luckily you had each other and you kind of get experience. Also with your dad going through it up before.

 

Danell [00:26:34] We've been through a lot,.

 

Lita [00:26:35] And you being a nurse I'm sure that helped.

 

Danell [00:26:36] Yeah. Yeah. There are you know support groups out there. OK. And the hospital would recommend them. Right. I'm sure Barnes and even at one point asked if I would consider you know kind of being a mentor. But that's a you know from central Illinois it's like a two and a half hour drive. So it really wasn't feasible for me to do it.

 

Lita [00:26:57] Sure.

 

Danell [00:26:57] but. Yes.

 

Lita [00:26:59] And how about through dialysis facility do you notice that anybody there that might need you know like encouragement or advice or

 

Rod [00:27:10] I don’t know,.

 

Lita [00:27:10] Not really advice but support as they're going.

 

Rod [00:27:12] Oh there probably is I'd like to Danell said, they they have people that you can do that with. I'm not a joiner. {laughter}.

 

Lita [00:27:19] Okay.

 

Rod [00:27:19] Leave me alone. {laughter}

 

Lita [00:27:20] Okay.  How about medical equipment supplies or other tools that you've found particularly helpful when dealing with kidney disease.

 

Rod [00:27:33] No, other than, Like I said the peritoneal dialysis was a big burden. But I like I. That's why I like prefer the hemodialysis now because I can go to the unit get it done leave it. All I have to do is watch my diet.

 

Lita [00:27:56] OK.

 

Rod [00:27:56] And my fluids.

 

Danell [00:27:57] Well, after this second one and that kind of started going downhill. And we're different things that you know at one point he had to use a walker and he got to the cane.

 

Rod [00:28:09] Well that was. I greatly blame the nephrologist I had at the time I kept asking him why is this happening. And he had no answer or he wouldn't give me one.

 

Danell [00:28:24] And you're talking about your being so bad.

 

Rod [00:28:26] Yeah. I was almost to the point of being in a wheelchair.

 

Lita [00:28:29] OK.

 

Rod [00:28:30] And when Darnell helped me we get got a neurologist. Twenty seconds he told me what was going on.

 

Lita [00:28:40] OK.

 

Rod [00:28:40] So I adjusted my diet and they got considerably better. Oh all right. But I am. I still have a problem walking.

 

Lita [00:28:49] OK.

 

Danell [00:28:51] We have a.. He has a shower chair/ stool now that helps him a lot in the shower, because his legs are still weak to a point.

 

Lita [00:29:01] Wobbly?

 

Danell [00:29:01] I think I think I {un-able to translate} at one point I brought it back so that I could have it.

 

Lita [00:29:07] OK.

 

Danell [00:29:07] . You know just because of you know after this surgery you're just you know you're tired. You have major surgery.

 

Lita [00:29:13] Sure sure.  I, I know that they also make like almost like support bars that go in the toilet area that can help you get up and down do you need anything like that?.

 

Rod [00:29:25] Of course I do. I do not. I don't sit in the tub, it's too hard for me to get up.

 

Lita [00:29:29] OK. You just shower?.

 

Rod [00:29:30] Stand. So although I do sit on that stool she is talking about in the shower but I don't get down in the tub.

 

Lita [00:29:38] How about a handheld shower that you can be removed from.

 

Rod [00:29:41] No.

 

Lita [00:29:41] Have you ever tried one of those that you attach afterwards?

 

Danell [00:29:44] I actually have one.

 

Lita [00:29:45] . Do you. .

 

Danell [00:29:46] You know there again it's like, I'm not, you know incapacitated in any way but yeah I'll let you know as being a nurse and having worked in nursing homes for you know back years ago. Yeah. Things like that are awesome.

 

Lita [00:30:02] OK great. Great. Well I want to thank you both for all of that information. You probably wouldn't realize how much it means to people to hear the stories of people that have already gone through it. So let's say someone just gets diagnosed and they don't know what to expect. "God I had a kidney disease. What on earth am I up to next". And this way they can hear the podcast they can hear your stories and they can have a little bit of sense of relief say well these two they've gotten through it pretty well and I can certainly get through it and they gave me a couple of Hints and advice and I know what to look for. And it really is helpful so I really want to thank you and I appreciate you taking the time to do this with us today.

 

Rod [00:30:51] You're welcome.

 

Rod [00:30:51] We appreciate everything that you've done.

 

Lita [00:30:54] Oh well it's been an honor.

 

Rod [00:30:56] Well I've I felt bad that I lost your kidney as much for you as for me. You did. You made that sacrifice and I wasn't able to keep it.

 

Lita [00:31:06] what? It was not your fault.

 

Rod [00:31:08] Well this is true but I still felt bad about it.

 

Lita [00:31:10] Don't worry about it. It's okay. I am going to cut this off now.

 

Lita [00:31:15] If you have any questions or comments related to today's show you can contact us at podcast D X at Yahoo dot com through our Web site where you can link to our Facebook page and also see more information as we build our site. Please go to podcast D X dot com.

 

Ron [00:31:36] And for our listeners you have a moment please give us a five star review on item podcast.

Looking Way Back to...

Our first episode did not have the sound quality we have been able to improve over the last year, but the info is so important to get out to our listeners!

Here it is folks< Episode 1.  Kidney Transplant.  Interview Guests were Rodney Fleming and his sister, Danell Fleming Kreher.  This was a story close to my heart (or should I say kidney? LOL! 

PodcastDX Episode 1/ Kidney Transplant

PodcastDX Kidney Transplant Episode 1.mp3

 

Jean Marie [00:00:16] Hello and welcome to podcast DX. This show that brings you interviews with people just like you whose lives were forever changed by a diagnosis.

 

Lita [00:00:26] I'm Lita,.

 

Ron [00:00:27] I'm Ron.

 

Jean Marie [00:00:28] And I'm Jean Marie.

 

Lita [00:00:29] Collectively we are the hosts of podcast dx. This podcast is not intended to be a substitute for professional medical advice diagnosis or treatment. Always ask the advice of your physician or other qualified health care provider for any questions you may have regarding a medical condition or treatment. And before undertaking any new health care regimen never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. I am here with Darnell and Rodney and  they're siblings. Whom have both received kidney donations at least once.

 

Lita [00:01:13] Hello and thank you for being on our show.

 

Danell & Rod [00:01:16] Thank you.

 

Rod [00:01:16] Glad you're here.

 

Lita [00:01:18]  How long has it been since your transplants Danell years was a long time Right?.

 

Danell [00:01:23] Mine was in early April. I will be coming up on 17 years.

 

Lita [00:01:29] 17 years.

 

Lita [00:01:30] And you only had the one?

 

Danell [00:01:31] And only had one.

 

Lita [00:01:32] . OK. And Rodney?

 

Rod [00:01:34] My first transplant was in nineteen ninety four.

 

Lita [00:01:38] OK.

 

Rod [00:01:39] Second one was in 2010. Was that right?

 

Danell [00:01:46] Do you remember Lita?

 

Lita [00:01:47] No I don't actually. I don't. So 94' was the first one...

 

Rod [00:01:53]  No. 2014.

 

Lita [00:01:55] OK. All right. So. What, what caused the first one to fail?

 

Rod [00:01:59] Well it's Darnell and my brother and I and Dad it's all the same "All Ports".

 

Lita [00:02:06] OK.

 

Rod [00:02:07] All Ports.

 

Lita [00:02:08] That's a.

 

 [00:02:08] Yes it's an immune problem. Your body attacks your kidney.

 

Lita [00:02:13] OK.

 

Rod [00:02:13] Like some people  have a problem with that their body attacking their heart.

 

Lita [00:02:17] Sure.

 

Rod [00:02:17] Our is our kidney.

 

Lita [00:02:19] OK so. Is there any new stem cell therapy or anything that can help you, like,  alleviate this so that your kidneys are....

 

Rod [00:02:29] Well I wouldn't work on us anyway. You might get to work on somebody whose kidney isn't already shot.

 

Lita [00:02:37] OK. OK

 

Rod [00:02:38] But there's no bringing ours back.

 

Lita [00:02:40] OK.

 

Danell [00:02:41] Yeah, But I don't know about the, like the stem cell. I don't know. That's a good question.

 

Lita [00:02:47] I'm just.

 

Danell [00:02:48] Doing research into that to see, I mean you know they're using it for a lot of things now.

 

Lita [00:02:53] Right.

 

Rod [00:02:53] Well the stem cell research now I think is mainly trying to grow.

 

Lita [00:02:58] New ones?

 

Rod [00:02:59] New ones,.

 

Danell [00:02:59] Yeah.

 

Rod [00:03:00] But you know you can't you can't. Bring a rock back.

 

Lita [00:03:03] No. But I'm just concerned that from, you know, like the first one that you got. Failed because your body is still attacked it. Right? The All Ports attacked it?

 

Rod [00:03:11] Essentially. Well I'm not so sure it was that so much as just transplanted kidneys don't last forever.

 

Lita [00:03:21] OK.

 

Danell [00:03:22] I got like a, 10 year,.

 

Lita [00:03:24] Warranty?

 

Rod [00:03:24] well,.

 

Danell [00:03:25] Well for that's the average,.

 

Rod [00:03:27] For average. Correct. And mine lasted ten years.

 

Lita [00:03:30] OK.

 

Danell [00:03:30] Almost to the month.

 

Rod [00:03:32] Yeah.

 

Lita [00:03:32] And Danell, yours has been 17 years?

 

Danell [00:03:35] Yes I've been 17.

 

Lita [00:03:37] Where did you get the deluxe model?

 

Danell [00:03:38] I think I might have! (laughter)

 

Rod [00:03:39] Well I think hers was a better match than mine was mine was. Just a mediocre match hers and my brothers are both have pretty good matches.

 

Lita [00:03:48] OK.

 

Danell [00:03:48] Yeah they told me that mine was as good of a match as that one my kids had given it to me, so.

 

Lita [00:03:53] OK. OK.

 

Lita [00:03:54] So yes, so that that's probably important too.

 

Danell [00:03:58] Yeah.

 

Lita [00:03:59] And the, the last one that you got from me that one also failed.

 

Rod [00:04:05] Yeah.

 

 [00:04:05] So now. You’re back on Dialysis?

 

Rod [00:04:07] Yeah, That one didn't last very long at all. I think with all the antibodies that I had from the first one it makes it more difficult to match the second one. And also Barnes did not put me on prednisone the second time around which I think had a lot to do with killing it.

 

Lita [00:04:28] Wow.! They didn't.?

 

Rod [00:04:30] No, they don't believe in predinsone,.

 

Danell [00:04:32] They dont do it, So my brother, that had his out in Idaho which has just been about five years for him. It's never never done the prednisone thing..

 

Lita [00:04:41] Hmmm, Well I know Gina just had her liver and she was on prednisone  for probably 60 days.

 

Danell [00:04:49] Really?

 

Rod [00:04:49] Well I was on when they put my first one in I was on massive doses of prednisone but eventually got me down,.

 

Lita [00:04:57] weaned you down.

 

Rod [00:04:57] To a maintenance dose. And I had that the whole time I had my first kidney.

 

Lita [00:05:03] I don't know if Gina's taking it still or not but I know in the beginning she took.

 

Danell [00:05:06] . Yeah.

 

Lita [00:05:07] A lot.

 

Danell [00:05:07] And they might have with Scott too (Scott is their brother in Idaho). But I know that really we can back from the long term use,

 

Rod [00:05:12] When I got the second kidney, of course they didn't put me on prednisone. And after a few months it started dying off. While, while it was deteriorating, I was put on prednisone for a totally nother reason.

 

Lita [00:05:31] . OK.

 

Rod [00:05:33] And it almost stopped the deterioration of the kidney. But at that point I was about 90 percent shot already.

 

Lita [00:05:42] OK.

 

Rod [00:05:43] I am convinced. If they had put me on the prednisone initionally. Your kidney would have lasted me a lot longer.

 

Lita [00:05:50] Okay.

 

Rod [00:05:50] Because once I got on the prednisone the deterioration almost stopped.

 

Lita [00:05:56] But it was too late.

 

Rod [00:05:57] It was too late. Plus,.

 

Lita [00:05:59] Did you mention that to them? Like you know...

 

Rod [00:06:00] Well after is too late.

 

Lita [00:06:01] No. but I mean,.

 

Rod [00:06:01] But if I  didn't realize what was going on.

 

Lita [00:06:04] Yeah. And I'm just thinking for future people you know like maybe they should change their ways,.

 

Rod [00:06:07] yeah, well, tell them that, they don't want...

 

Lita [00:06:10] I know but, I mean, part of, part of education in the medical community I think is feedback from the patients so that they know what works what doesn't work.

 

Rod [00:06:20] What ended up happening then I had to have heart surgery.

 

Lita [00:06:26] Oh right,.

 

Rod [00:06:26] And of course they had to have the MRI's with contrast, which is a big no no for.

 

Lita [00:06:33] That kills the kidneys,.

 

Rod [00:06:34] Kidney Patients but at that point they had to do it and that finished the kidney off.

 

Lita [00:06:40] Sure. ok,

 

Danell [00:06:41] Did you, You had gone back on dialysis but you were still having some benefits of your kidney.

 

Rod [00:06:48] Yeah. I was still putting out.

 

Danell [00:06:50] We are convinced it was because he had gotten on that prednisone while.

 

Rod [00:06:52] I was still putting out a good bit of urine.

 

Danell [00:06:57] It lasted whai?  Maybe about a year?

 

Rod [00:06:58] Maybe yeah,.

 

Danell [00:06:59] Just before you had to have your heart surgery.

 

Rod [00:07:01] Yeah. Finished it off.

 

Danell [00:07:03] Yeah. Even though he had lost a lot of the benefit from your kidney it still you know we continue to have some.

 

Rod [00:07:09] Oh I was still putting out about eight hundred milliliters a day, which I  wasn't having to watch my fluid anywhere near like I do now.

 

Lita [00:07:18] OK,  How often do you go for dialysis now?

 

Rod [00:07:22] Three times a week.

 

Lita [00:07:24] oh, ok, What. What symptoms made you realize, I know it's a long time ago when you first realize that you had problems but what symptoms were there that made you think I've got a problem with my kidney.

 

Rod [00:07:38] None. My, our father had kidney failure.

 

Lita [00:07:43] OK,.

 

Rod [00:07:43] So in the process of they were trying to fight figure out why I had high blood pressure. I found out my kidney was already 25 percent shot 10 years before. They failed.

 

Lita [00:08:01] OK.

 

Rod [00:08:01] Completely.

 

Lita [00:08:01] So most you most many of these symptoms.

 

Rod [00:08:03] No. Most people do not realize what's going on until it's too late.

 

Lita [00:08:10] Hmm, So you're a little like high blood pressure a hidden thing right.

 

Rod [00:08:12] Your body compensates and people don't realize it's going, a lot of people, when they if they find out they have kidney failure when they're in the hospital. Because they get you get flu like symptoms they get feeling just totally run down. That's when they find out. I knew for 10 years ahead of time it was coming.

 

Lita [00:08:35] Because of your dad.

 

Rod [00:08:36] Because my dad.

 

Danell [00:08:37] Right.

 

Lita [00:08:37] And when your dad was diagnosed they found out that it was a genetic problem. Correct?

 

Rod [00:08:44] No.

 

Danell [00:08:45] Actually they didn't find out because dad was. He was just diagnosed with kidney failure.

 

Lita [00:08:50] OK.

 

Danell [00:08:50] They thought it was all brought on by hardening of the arteries.

 

Lita [00:08:53] OK.

 

Danell [00:08:53] Then Rodney when they had diagnosed him again just kidney failure. When. When I started showing signs. The doctor we all had the same nephrologists.

 

Lita [00:09:04] Right,.

 

Danell [00:09:04] You know he's like... hmmmm?

 

Lita [00:09:05] yeah yeah.

 

Danell [00:09:07] So actually I went and got the biopsy that diagnosis with the All Ports.

 

Lita [00:09:12] OK. And what is all ports Exactly?

 

Danell [00:09:14] It's a slow. It's an auto immune but it's just basically a slow deterioration of the glomeruli of the kidney, which is just basically the body.

 

Lita [00:09:22] The filter .

 

Danell [00:09:23] Yeah,.

 

Lita [00:09:23] OK.

 

Danell [00:09:24] Yeah it's a filtering system of the kidney, and there's you know.

 

Lita [00:09:27] They haven't come up with a cure for that.

 

Danell [00:09:30] That's one of the things that happens.

 

Lita [00:09:32] and all of your, You have one brother?

 

Danell [00:09:36] Mhmm.

 

Lita [00:09:36] Besides Rodney? and he has it as well.

 

Danell [00:09:38] Right, He has. Yes.

 

Lita [00:09:39] And he's had a transplant.

 

Rod [00:09:40] He's had a transplant.

 

Danell [00:09:42] He had a living donor transplant.

 

Rod [00:09:44] He was eleven years younger than me. So. Plus I, it progressed fairly rapidly. For me I went,. I went on dialysis when I was forty. They made it closer to 50.

 

Lita [00:09:58] OK.

 

Rod [00:09:59] Our father was 50.

 

Danell [00:10:01] Yeah.

 

Lita [00:10:05] So umm, just to let the listening audience know, umm, possible symptoms are decreased urine output. Fluid retention swelling in your legs ankles and feet drowsiness shortness of breath fatigue confusion nausea and in severe cases seizures or coma and chest pressure that's probably from the fluid.

 

Rod [00:10:31] Well like I said, most..

 

Lita [00:10:33] You didn't have, you just felt flu-ish.

 

Rod [00:10:35] Most people do not realize that's going on until the last minute.

 

Lita [00:10:41] OK.ok,.

 

Rod [00:10:41] They. They get flu like symptoms. They feel like crap and they go into hospital and they. Well your kidneys have quit.

 

Lita [00:10:49] So then what relief do they have? At that point.

 

Rod [00:10:52] Emergency dialysis.

 

Lita [00:10:54] OK. So once you have the dialysis does that take care of the symptoms.

 

Rod [00:11:01] Largely.

 

Danell [00:11:03] Which is really kind of what happened with my dad. He just you know. Started getting very ill. I don't remember what symptoms he had. But then at that point they just have. I don't know. you know, They. Checked. His kidney functioning was all and decrease the numbers. Lab numbers were elevated. We actually took him down to. Houston to a hospital down in Houston and that's where they figured out what was going on and basically he was just in kidney failure. So they did emergency dialysis they put a graft in his arm but they can't you can't use that for a while. It has to...

 

Rod [00:11:46] Emergency dialysis. They put a port in your central vein in your chest and they use that, that's meant to be temporary. They don't like to use them long term. Because too much risk of infection.

 

Lita [00:12:01] Sure sure. Anything close to the heart is. That what. Well you got your heart eventually?

 

Rod [00:12:05] No. No. I just. Just another {unable to transcribe}.

 

Lita [00:12:12] That will be a podcast in the future.(laughter) OK. One thing that we like to discuss with the patients that we're we're interviewing is caregiving in the home. After the procedure and equipment that might have helped you to recover after the procedure. Now as a kidney donor I know that you know, there were some things that assisted me on my recovery but and on the receiving end what. What did you guys do to to help you get over the hump when you got home from the hospital?

 

Rod [00:12:50] I initially started doing peritoneal dialysis that as most people think of hemodialysis where they directly clean the blood peritoneal, they put a port in my abdomen, you put fluid in your abdomen, it dwells, it draws the poison, the chemicals off and you change the flood periodically. I did that for years.

 

Lita [00:13:24] oh, Now, Is that when you say the fluid goes in is it into a vein or is it just a cavity?

 

Rod [00:13:30] It goes into the abdominal cavity and it by osmosis it draws the stuff off. OK. The toxins and the fluid off in your body.

 

Lita [00:13:41] OK.

 

Rod [00:13:41] I did that all together eight years.

 

Lita [00:13:45] OK. And is that the one that you do at home?

 

Rod [00:13:48] That's what I do at home. Yeah.

 

Lita [00:13:49] So you. From what I remember you hooked yourself up to a machine at night and you just let it run.

 

Rod [00:13:56] Yes initially the first year and a half for my first transplant I did it manually and hung a bag of dialysate, it ran it into my abdomen, put it in leave it in here about three or four hours drain that bag out. Put another bag again. I do that three or four times a day.

 

Lita [00:14:18] And this is something that you could handle yourself. They trained you and you didn't have any problem doing this at home.

 

Rod [00:14:23] Right.

 

Lita [00:14:24] Because it sounds very.

 

Danell [00:14:27] It was,.

 

Lita [00:14:28] Technical. Yeah it sounds scary, It sounds...

 

Rod [00:14:31] I after the I lost the first transplanted kidney, I end up doing what is called a cycler, where the machine does that for you. But I was on I had to be on that nearly 11 hours every night and course you can't go anywhere until it is done.

 

Lita [00:14:54] OK.

 

Rod [00:14:54] Well after six years of that my second transplant, lost the second transplant, I started doing it.

 

Lita [00:15:03] Sure.

 

Rod [00:15:03] I never slept well. Now it works better for other people. It didn't, I was tired doing it, all the work that goes with it. All the supplies. It's a constant job. This with hemodialysis I can go to Matt.(?). Go to the dialysis unit three times a week. They run me for three and a half hours. I'm done, done for two days. You don't have to mess with it anymore.

 

Lita [00:15:31] So it's like an oil change.{laughter}.

 

Rod [00:15:33] Pretty much yes pretty much.

 

Danell [00:15:36] But as far as like after the surgery I actually I did very well. I mean I was only forty seven. I was I was active,. {lost audio}

 

Rod [00:15:48] Are you ready?.

 

Lita [00:15:48] Yeah go right ahead.

 

Rod [00:15:50] When you get your transplant it's like you have an immense amount of energy for a good year. After my first transplant I was just Energizer bunny. I was working two jobs, taking care of my kids, and sleep in about five hours a night. God, I had just an immense amount of energy. That's, you start to come back to normal after a while but your body has become so used to having no energy.

 

Lita [00:16:24] OK.

 

Rod [00:16:24] Once this happens you just feel great.

 

Lita [00:16:31] ok.

 

Rod [00:16:31] you feel, really great.

 

Danell [00:16:35] I know talking about symptoms before,  It just all comes along so gradually that you don't realize you're feeling bad.

 

Rod [00:16:45] Yeah.

 

Danell [00:16:46] And then that you're tired.

 

Lita [00:16:50] It's draining.

 

Rod [00:16:51] Well that's it, after your, after your transplant and you feel so great. Then you realize how terrible you were.

 

Lita [00:16:58] You were before,.

 

Danell [00:16:59] Right.

 

Rod [00:16:59] Right.

 

Danell [00:16:59] And I also noticed things like my hair thickening back up after the transplant my nails getting hard after the transplant. Things that had started deteriorating maybe just over such a long period of time you just didn't notice it. Yeah. Afterwards you know after his first one, and then with mine, as far as recovery at home and action was very easy. I went back to work after five weeks and I'm a surgical nurse. So you know really very active and intense. You know. But we were both healthy. You know going into wealthy going into young and we had so many dialysis patients are on dialysis because they are diabetic.

 

Lita [00:17:42] OK.

 

Rod [00:17:43] And so they're fighting they're fighting that complication also. We didn't have that.

 

Lita [00:17:48] OK. So if someone had diabetes on top of the kidney failure.

 

Rod [00:17:53] oh yeah,.

 

Lita [00:17:53] They've got just another hurdle. That they've got to jump over

 

Danell [00:17:56] Right, right.

 

Lita [00:17:56] In order to heal.

 

Danell [00:17:58] Yes. Much more difficult in the healing process,

 

Rod [00:17:59] About actually .

 

Rod [00:18:01] About 30 percent of dialysis patients are there because they are diabetic.

 

Lita [00:18:06] OK. OK.

 

Rod [00:18:08] I worked for 10 years as a fireman on one kidney. Did great.

 

Lita [00:18:14] OK well one kidney working well I can tell you does, OK.

 

Rod [00:18:19]  Oh yeah yeah.

 

Lita [00:18:22] I've got no complaints

 

Danell [00:18:25] We're not the only ones getting by with one kidney

 

Rod [00:18:26] Unless you think you want to be a marathoner I don't think you would notice the difference.

 

Lita [00:18:30] Yeah I would never do that,.

 

Rod [00:18:31] It would just be a slower recovery.

 

Lita [00:18:35] OK.

 

Rod [00:18:36] Cause You'd wear yourself out. But like I said as a fireman I didn't notice it.

 

Lita [00:18:42] OK. Are you worried Danell, that you might be up for another one soon?.

 

Danell [00:18:46] You know I was around 10 years because basically Rodney like I said lost year at 10 years almost to the month. But you know it's 17 now. My last doctor's visit down was down at Barnes, and I've just been doing so well they're like you know which I had been going there just once a year for several years. And they're like that come back for two years now I still get I get my blood drawn every other month and it all gets into Barnes. So they you know they're watching that closely but you know they're like to come back for two years you're doing great. Because I have not once had any concerns about rejection that they're like you know you can put this on.

 

Rod [00:19:32] Well and the better the better your match the fewer drugs you have to take.

 

Lita [00:19:37] OK. OK.

 

Danell [00:19:38] And mine also was I had a cadaver donor and she was a same age I was.

 

Lita [00:19:48] OK.

 

Danell [00:19:48] So you know basically I've got you know it's not like I { un-able to transcribe}.

 

Lita [00:19:53] Yes it grows with you, right. OK. I wanted to discuss a little bit about the the different regions that you can apply for when you're getting a, an Organ, and I know that Rodney your daughter posted an ad on Matching Donors dot com for the second one in order to actually expand your reach when you were looking for a donor.

 

Rod [00:20:22] Well it is when you get on the list you're waiting for them to find you a donor Matching Donors dot com, dot com as a way for you to find your own donor.

 

Lita [00:20:35] You're like advertising.

 

Rod [00:20:36] Essentially.

 

Lita [00:20:37] Yeah.

 

Rod [00:20:37]  Right. right

 

Danell [00:20:39] Yeah. We put a, you know, told all about Rod you know his his life as a fireman.

 

 [00:20:47] Yeah actually I remember. I mean you know my memory is pretty crap,  {laughter} but I actually still remember how strongly the emotions hit me when I read your ad.

 

Danell [00:21:01] Awwe

 

Lita [00:21:02] That I said "why wouldn't somebody have given this guy one already, for crying out loud. Get him on the phone."

 

Rod [00:21:10] Well of course we never put this forth before you when you're on the list. You're waiting for someone to die.

 

Lita [00:21:18] Right.

 

Rod [00:21:19] It's not a question of. I'll give you mine.

 

Lita [00:21:23] Right. But the matching donors allows living right donors to donate a part of a liver or a whole kidney.

 

 [00:21:32] And of course my daughter was fantastic. She did all of that. I did nothing. She talked to different various people about me. At least two of them hinted around about being compensated which technically is illegal in this country.

 

Lita [00:21:51] Right. Right.

 

Rod [00:21:52] So she told them "Forget it". But she found you, or you found me.

 

Lita [00:21:58] Yeah. I found the ad and I was,  and it was, it was convenient that you were in Illinois. There wasn't a lot of transportation involved. You know I can imagine that some people that are are looking nationwide it might be a little bit more difficult if you have to commute or whatever. But ours was perfect. How long were you on dialysis the first time before you got to the.

 

Rod [00:22:25] Before the first transplant I was on dialysis for a year and a half. They found me a cadaver. OK after the first transplant failed I was on dialysis for six years before I got together with you. That one only lasted 10 months. Right now I've been on dialysis about another six years.

 

Lita [00:22:50] OK. And Danielle how long were you on dialysis before I act.

 

Danell [00:22:54] Oh I never had to go on for hours. Oh OK. Was that on the transplant list because now they will put you on it before you get on dialysis. Back when Rodney first started you had to actually be on dialysis before they would put you on. Yes. OK. I I think they figured out hey if we can get him going before the dialysis so I put on a list and told that I would have to be on dialysis within a year and actually it was four months.

 

Rod [00:23:24] She was getting at the point she was getting pretty rundown.

 

Lita [00:23:28] So it was it was like getting close to where you would.

 

Rod [00:23:30] Yeah. It was real close.

 

Danell [00:23:32] There four months is just really even the doctors were like "you were on that list. how long?". Like four months.

 

Lita [00:23:38] Right.

 

Danell [00:23:38] I had a rare blood type and I think well some real rare but I was Rh negative. So I think that could have gone either way. Sure it could have kept me on the list longer or.

 

Lita [00:23:50] If nobody else can take it right.

 

Danell [00:23:52] . Give me that one kidney that no one else could take. So yes I was blessed in that it was only four months.

 

Lita [00:24:00] Have there been any dietary changes to either of you since the transplants have you had to do anything,.

 

Rod [00:24:06] Well once you've had a transplant. No. If you're on dialysis it's extreme.

 

Lita [00:24:14] As far as sodium right?

 

Rod [00:24:15] Sodium. The main thing is phosphorous and potassium.

 

Lita [00:24:20] OK.

 

Rod [00:24:21] Dialysis does not rate remove phosphorus and it doesn't do a very good job removing potassium.

 

Lita [00:24:29] OK. Are those good or bad?

 

Rod [00:24:32] Well they're.... You know.

 

Danell [00:24:33] They're bad, if they {un-able to translate}.

 

Lita [00:24:34] Oh OK. So the levels to be high. Right. And your kidney normally takes care of those.

 

Rod [00:24:39] Correct.

 

Lita [00:24:39] OK I see.

 

Rod [00:24:40] The phosphorus level if you've got an excess of phosphorus it settles in your feet and I have neuropathy in my feet because that has destroyed the peripheral nerve endings in my feet. So it's more difficult for me to walk potassium that gets out of whack. It messes up your heart. That can be real serious.

 

Lita [00:25:08] Sure. But they keep an eye on it.

 

Rod [00:25:10] And then they keep an eye on it.

 

Lita [00:25:11] And medication to adjust levels or the.

 

Rod [00:25:14] . Well that's why take massive amounts of phosphorus binders when I eat the potassium the dialysis will remove it. To some extent but I've got to stay away from my potassium fluids.

 

Lita [00:25:29] Sounds like you guys have to turn into nutritionists in order to stay healthy as I.

 

Danell [00:25:36] Basically eat just like you can. We each have one kidney one good working kidney. So I mean you know you have to be intelligent about it it's just as much as you would in it you know hey what do you want in your body. But yeah. That's the great thing.

 

Lita [00:25:51] Well that's good.

 

Rod [00:25:52]  Like I can eat whatever I want.

 

Rod [00:25:54] Oh yeah I know when I had my first transplant I I would not. You do not know you're working on one kidney.

 

Lita [00:26:05] You mean you don't feel that.

 

Rod [00:26:07] I don't feel. And you're really no dietary limitations because of it.

 

Lita [00:26:13] Because the kidney's working well.

 

Rod [00:26:14] Right.

 

Lita [00:26:16] Are there any support groups or organizations that have been of assistance for either of you?

 

Rod [00:26:22] No,.

 

Danell [00:26:23] That we kind of chose not to. I mean basically that guy right there was our support group.

 

Rod [00:26:28] That's true.

 

Lita [00:26:29] Well  luckily you had each other and you kind of get experience. Also with your dad going through it up before.

 

Danell [00:26:34] We've been through a lot,.

 

Lita [00:26:35] And you being a nurse I'm sure that helped.

 

Danell [00:26:36] Yeah. Yeah. There are you know support groups out there. OK. And the hospital would recommend them. Right. I'm sure Barnes and even at one point asked if I would consider you know kind of being a mentor. But that's a you know from central Illinois it's like a two and a half hour drive. So it really wasn't feasible for me to do it.

 

Lita [00:26:57] Sure.

 

Danell [00:26:57] but. Yes.

 

Lita [00:26:59] And how about through dialysis facility do you notice that anybody there that might need you know like encouragement or advice or

 

Rod [00:27:10] I don’t know,.

 

Lita [00:27:10] Not really advice but support as they're going.

 

Rod [00:27:12] Oh there probably is I'd like to Danell said, they they have people that you can do that with. I'm not a joiner. {laughter}.

 

Lita [00:27:19] Okay.

 

Rod [00:27:19] Leave me alone. {laughter}

 

Lita [00:27:20] Okay.  How about medical equipment supplies or other tools that you've found particularly helpful when dealing with kidney disease.

 

Rod [00:27:33] No, other than, Like I said the peritoneal dialysis was a big burden. But I like I. That's why I like prefer the hemodialysis now because I can go to the unit get it done leave it. All I have to do is watch my diet.

 

Lita [00:27:56] OK.

 

Rod [00:27:56] And my fluids.

 

Danell [00:27:57] Well, after this second one and that kind of started going downhill. And we're different things that you know at one point he had to use a walker and he got to the cane.

 

Rod [00:28:09] Well that was. I greatly blame the nephrologist I had at the time I kept asking him why is this happening. And he had no answer or he wouldn't give me one.

 

Danell [00:28:24] And you're talking about your being so bad.

 

Rod [00:28:26] Yeah. I was almost to the point of being in a wheelchair.

 

Lita [00:28:29] OK.

 

Rod [00:28:30] And when Darnell helped me we get got a neurologist. Twenty seconds he told me what was going on.

 

Lita [00:28:40] OK.

 

Rod [00:28:40] So I adjusted my diet and they got considerably better. Oh all right. But I am. I still have a problem walking.

 

Lita [00:28:49] OK.

 

Danell [00:28:51] We have a.. He has a shower chair/ stool now that helps him a lot in the shower, because his legs are still weak to a point.

 

Lita [00:29:01] Wobbly?

 

Danell [00:29:01] I think I think I {un-able to translate} at one point I brought it back so that I could have it.

 

Lita [00:29:07] OK.

 

Danell [00:29:07] . You know just because of you know after this surgery you're just you know you're tired. You have major surgery.

 

Lita [00:29:13] Sure sure.  I, I know that they also make like almost like support bars that go in the toilet area that can help you get up and down do you need anything like that?.

 

Rod [00:29:25] Of course I do. I do not. I don't sit in the tub, it's too hard for me to get up.

 

Lita [00:29:29] OK. You just shower?.

 

Rod [00:29:30] Stand. So although I do sit on that stool she is talking about in the shower but I don't get down in the tub.

 

Lita [00:29:38] How about a handheld shower that you can be removed from.

 

Rod [00:29:41] No.

 

Lita [00:29:41] Have you ever tried one of those that you attach afterwards?

 

Danell [00:29:44] I actually have one.

 

Lita [00:29:45] . Do you. .

 

Danell [00:29:46] You know there again it's like, I'm not, you know incapacitated in any way but yeah I'll let you know as being a nurse and having worked in nursing homes for you know back years ago. Yeah. Things like that are awesome.

 

Lita [00:30:02] OK great. Great. Well I want to thank you both for all of that information. You probably wouldn't realize how much it means to people to hear the stories of people that have already gone through it. So let's say someone just gets diagnosed and they don't know what to expect. "God I had a kidney disease. What on earth am I up to next". And this way they can hear the podcast they can hear your stories and they can have a little bit of sense of relief say well these two they've gotten through it pretty well and I can certainly get through it and they gave me a couple of Hints and advice and I know what to look for. And it really is helpful so I really want to thank you and I appreciate you taking the time to do this with us today.

 

Rod [00:30:51] You're welcome.

 

Rod [00:30:51] We appreciate everything that you've done.

 

Lita [00:30:54] Oh well it's been an honor.

 

Rod [00:30:56] Well I've I felt bad that I lost your kidney as much for you as for me. You did. You made that sacrifice and I wasn't able to keep it.

 

Lita [00:31:06] what? It was not your fault.

 

Rod [00:31:08] Well this is true but I still felt bad about it.

 

Lita [00:31:10] Don't worry about it. It's okay. I am going to cut this off now.

 

Lita [00:31:15] If you have any questions or comments related to today's show you can contact us at podcast D X at Yahoo dot com through our Web site where you can link to our Facebook page and also see more information as we build our site. Please go to podcast D X dot com.

 

Ron [00:31:36] And for our listeners you have a moment please give us a five star review on item podcast.

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