Kidney Transplant PodcastDX

See Transcription of this recording below pic.

The first episode feature two kidney recipients.  Rodney Fleming, a retired Fire Captain from downstate Illinois and his sister Danell Fleming Kreher, an RN (Registered Nurse).  I first met this family in the winter of 2009/10 through a website called Matching Donors.

 

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? Ok,

 Danell [00:01:31] And only half 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. Youre 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 prednisone,.

 Danell [00:04:32] They don't 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 initianally. 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 fortytwo. 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 t...