Curious: I was musing on something.if you... - Kidney Disease

Kidney Disease
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Curious

S_dillow
S_dillow

I was musing on something.if you have a transplant doesn't that kidney eventually get ckd too ?if so why go through all that only to have the same thing all over?I'd not sorry I was just asking .

40 Replies
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When you get a transplant you should be taking better care of yourself and not slip back into ways that are harmful to your health. While a transplant may be someone's best option it isn't a license to go whole hog. The same with dialysis, the more frequent you are able to dialyze the more you can return to a "normal" meal plan. That still doesn't make it okay to binge eat, drink and go crazy. One of the critical points to remember whether you chose to have a transplant or stay on dialysis is to respect the gift or opportunity you were given to have a second, or third chance and appreciate that and be wise in your actions.

Wow. I needed to see this today! Way to go Mr. Kidney. Even though I know all this it stays me on course. Thanks.

Calvin18
Calvin18
in reply to Mr_Kidney

Isn’t ckd typically on both kidneys? My Dr didn’t tell me it was on just one kidney for me. I don’t think he knows???

S_dillow
S_dillow
in reply to Calvin18

I don't really know myself.ive got it In both.ask jayhawker they're better at the knowledge than I am and I don't want to tell you something wrong

Jayhawker
Jayhawker
in reply to S_dillow

Since the two most common causes of CKD are diabetes and high blood pressure, both kidneys would most often be effected I’d think as both of these two common causal factors would damage both rather than just one kidney. Certainly in my case both kidneys are damaged.

I honestly don’t know if f there are situations where only one kidney would be damaged other than perhaps kidney cancer... I’d suppose it is possible to have cancer on one kidney only—but not being a doctor, I’m not sure if or how frequently that might happen.

Jayhawker

I was thinking the same thing, maybe in case of an accident or any trauma but other than that I am not sure only one could be damaged.

Mr_Kidney
Mr_Kidney
in reply to Calvin18

Your kidneys work together to cleanse your blood. Unless you have a melanoma, specific disease, or injury, CKD will affect both kidneys. As one kidney weakens, the other will have go work harder and therefore becomes weaker.

What I was told by the transplant nephrologist while undergoing evaluation was this:

The donor kidney will improve my renal function overall. But I will still have CKD, just more renal function, eg, my eGFR could be around 60 rather than my current level of 15-17. In addition, the anti-rejection medications, which are needed to keep my body from rejecting the donor kidney, are very hard on the kidney. Thus the donor kidney won’t last indefinitely. On average, the deceased donor kidney I receive will last 8-10 years. Of course, I may be fortunate and, with work on my part, find that my donor kidney will last longer, but in general I should expect it to last 8-10 years.

Consequently, I do expect I’ll need dialysis during my lifetime; quite probably before my donor kidney arrives, but most certainly after my donor kidney gives out. Thus, I’m still doing everything necessary to prepare for dialysis even as I hope I will be blessed to receive a deceased donor kidney

One final thought: There are people who have transplants (deceased donor kidneys) whose donor kidneys have functioned for 15-20 years. So one truly never knows. I will hope for the best should I receive a donor kidney. However, either way, I will still have CKD. There is no cure.

Jayhawker

WYOAnne
WYOAnneNKF Ambassador
in reply to Jayhawker

You need to be POSITIVE! How do you know that when you get your NEW kidney that it will ever give out? And don't expect your transplant will only last 8-10 years...because then it will. I am living well and healthy at 20 years post transplant. I plan to live a long healthy life with my kidney!

KidneyCoach
KidneyCoachNKF Ambassador
in reply to WYOAnne

So just "thinking" positive makes it so??? I believe it takes action as well however over the years I've known super positive people with cancer who died regardless. Also many who did everything right with lifestyle on dialysis or transplant and still died. This is life. Belief, hope or positivity can't control everything. I am super positive person who chooses to fine the silver lining in all things. By this reasoning we all live forever.

But we don't.

We ALL die. ALL.

BLESSINGS

Thank you🐶

WYOAnne
WYOAnneNKF Ambassador
in reply to KidneyCoach

Oh my gosh, really! I have been working with kidney transplant recipients for 20 years now, both with the WI Donor Network and now here in WY. I know only too well all about transplant failures. However, there are so many that have a negative attitude. Being positive can only help and has helped me thru some rough patches. That is all I am saying...

Jayhawker
Jayhawker
in reply to WYOAnne

It’s great that your kidney has lasted 20 years and is still doing well. I certainly am hoping for the best with a donor kidney I receive as well.

However, I’m also listening to what BOTH transplant nephrologists have told me.

As I said in my post, deceased donor kidneys for persons MY AGE (66 years of age) last, on average, 8-10 years, according to both transplant nephrologists. (Unlike when you received your donor kidney 20 years ago, donor kidneys today are matched in part by age of the recipient. This means I’ll most likely receive a donor kidney from another person close to my age. Since all kidneys begin loosing function at age 40, a donor kidney from a person close to my age will NOT be working as well as it did when it was younger. It will automatically have somewhat reduced function due to natural aging.) That means some will last longer and others will last shorter while many will last 8-10 years. Certainly taking meds as prescribed, eating and exercising appropriately, and drinking enough water support the donor kidney.

However, I have no doubt that there are many people who do everything perfectly and yet their donor kidneys do not last as long as yours has. I’d hate to see people in that situation beat themselves up thinking they had caused their donor kidneys to quit working early...

Jayhawker

KidneyCoach
KidneyCoachNKF Ambassador
in reply to Jayhawker

I am in agreement with Jayhawker and this is what I've been told by 3 separate transplant teams and surgeons.

I will add that I've known those who have received transplants and the new kidney has been slow to wake up even months still needing dialysis. While others who's kidneys rejected immediately. Some even get both kidneys removed get a transplant It rejects immediately and they never get off dialysis. It happens. It's a risk. Each recipient must decide for themselves if it's a chance they want to take.

Why go through the effort? Only you can decide.

WYOAnne
WYOAnneNKF Ambassador
in reply to KidneyCoach

YES, I know the statistics only too well, especially regarding a deceased donor transplant ( which mine was). My whole point is ….that you don't have to live by those statistics. ATTITUDE is everything! A positive attitude can only help!

Absolutely! One enters into the transplant surgery hoping for the best; however, I greatly appreciate how honest the transplant team has been. Frankly, if they were less honest, no patient would be able to make a truly informed decision.

On a personal level I’ve decided to take the risk realizing that if the transplant doesn’t work I’ve lost no ground. Without the transplant I know I’m on dialysis. If the transplant fails, I’m on dialysis. Hopefully I’ll incur no additional negative side effects from the surgery itself...

Naturally I’m hoping for a positive result. But as you say, it’s a risk.

Jayhawker

WYOAnne
WYOAnneNKF Ambassador

OK! I had a transplant 20 years ago and my new kidney does not have the disease that effected my native kidneys. My creatinine is holding steady at 0.9.

I think if you religiously take your transplant meds, never skipping a dose, drink plenty of water, eat healthy, walk 3-4 times a week, have your labs done on time, keep all of your doctor appts - you can have a healthy, active life after transplant.

I am not diabetic, nor did I have high BP, my issue was FSGS as a result of strep followed by nephritis when I was a kid. 30 years later I was in kidney failure.

There are exceptions to this, but my nephrologist believes that a lot of transplants fail because patients do not take their meds as prescribed. The meds, immunosuppressants, at first can be "awful" till you get on the right dose and your body adjusts to them.

Because of my LIFE SAVING GIFT OF LIFE, I saw my daughters graduate from college, marry, I saw my grandsons be born, I am able to see them often, I was able to get my masters degree, worked full time, retire, travel to Europe, Canada, Mexico, Caribbean, and have a fantastic life with my husband (48th anniversary this August). Life is good!

What do you think? Was a transplant a good idea?

KidneyCoach
KidneyCoachNKF Ambassador
in reply to WYOAnne

Of course it was. The results prove this. Attitude plays a huge role. YES! Aaannnddd living donors TEND to last longer.

Now to play realistic, one of my friends received a deceased donor transplant just a month offer being listed. She had lower PRA and it was a 4/6 antigen match. She was just over 40 in great health otherwise. She went to ICU, slipped into a coma and died several weeks later. Truth is you can do EVERYTHING right but still end up in rejection. If you don't believe me check out RENAL SUPPORT NETWORK'S founder Lori Hartwell in California. She is the author of "Chronically Happy". She is on her 4th transplant. Surgeons and laboratories aren't magicians.....but neither are patients. Any doctor who insists on patient blaming needs to quit being a doctor --period! Blessings

Of course, I agree with you, KidneyCoach. We do each make our own decisions regarding our medical care as well as how closely we will work with our doctors.

Unfortunately, some of us learn that no matter how hard we try, our renal function deteriorates. It’s a reality with which some of us function on a daily bases.

I’m pleased for those who have better results. I empathize with those who don’t.

As my first nephrologist said during an appointment when I was particularly frustrated about my data, “It isn’t always fair.” He went on to explain that often patients are able to improve their data by doing everything as perfectly as possible; but not always. He said that they just don’t know why it doesn't work equally well across patients, particularly when the patient data looks like mine—glucose in check without meds, no hypertension or other medical conditions. I was frustrated. I was stressed out. I was beating myself up mentally.

It took me quite some time to move past all of that and come to accept that it is what it is. Throughout it all I have kept fighting. I continue to pursue any viable treatment option. I remain what I call guardedly optimistic.

This IS my reality. My doctors consider me to be optimistic with a solid understanding of my medical condition. They know I’ll do what they need me to do to take care of myself. I hope for the best as I prepare for any inevitability. If that’s a lack of hope, so be it. If that’s not thinking positively, so be it.

Jayhawker

WYOAnne
WYOAnneNKF Ambassador

Oh, one more thing....my kidney came from a deceased donor. Life expectancy for a deceased donor kidney 8-12 years? I don't think so. Statistics are just that....don't let them rule your life. They are NOT stopping me.

Mr_Kidney
Mr_Kidney
in reply to WYOAnne

WYOAnne I agree with you that a positive attitude is very important. What I find strange is anyone, especially site ambassadors disagreeing with you. What we are supposed to provide here is information and hope to those with CKD that they can slow the progression of CKD, live well on dialysis, and live a long and productive life with a transplant if that is the path they choose.

Stay strong, stay positive, and continue to share that outlook with others.

WYOAnne
WYOAnneNKF Ambassador
in reply to Mr_Kidney

Thank you Mr_Kidney.

My own mother died of ovarian cancer back in 1980. Back in the '80's it was a death sentence. My mother faced it head on and was always "positive." She never had a "poor me" attitude. It helped her face death. I feel her and she continues to help me everyday.

Does a positive attitude save you from what's ahead? Of course not. But it sure can make things not seem so bad. If your transplant will fail, a positive attitude won't save it, but it sure can't hurt!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That is what my mother taught me

Mr_Kidney
Mr_Kidney
in reply to WYOAnne

Your mother was right. Look at some of the posts in this community from folks who gave up or who have family that have given up. I for one when diagnosed at 32, could have given up, but that isn't my nature. When I learned I could slow the progression, my attitude was "I can do this." And now it's, "I will do this."

Jayhawker
Jayhawker
in reply to Mr_Kidney

I think “we” should be cautious when making assumptions that a person posting in this forum doesn’t maintain hope with regard to their health. Hope manifests itself differently across people.

It’s fairly easy to misjudge a person’s emotions when conversing in person. It’s even easier to misjudge a person’s emotions when participating in an online forum.

Jayhawker

WYOAnne
WYOAnneNKF Ambassador
in reply to Jayhawker

I am only stating what works for me and hoping it will work for others. If you have problems with a positive attitude - than...

S_dillow
S_dillow
in reply to WYOAnne

I don't.i was just at a dark time and couldn't get free of it right away.you and the others helped alot

My philosophy about most things including my CKD: hope for the best but live in reality.

I do approach my life the way you describe. We are each different individuals participating in this forum. What works for Mr Kidney or WYOAnne is wonderful for them. Unfortunately others may do equally well to take care of themselves and yet not achieve such wonderful results. As my first nephrologist said to me in numerous appointments, “It isn’t always fair.”

Imagine how frustrating it is to do everything as nearly perfectly as possible to no avail; your renal function plummets anyway. (Or your transplant fails anyway.) If it were only as simple as doing everything perfectly with a positive attitude; but it just isn’t. And that’s a guilt trip I don’t think any of us need.

So yes, we do our best to handle our diets perfectly, exercise daily, and maintain upbeat attitudes. But after that it’s out of our hands; it’s life.

Jayhawker

Mr_Kidney
Mr_Kidney
in reply to Jayhawker

Life is what you make of it.

KidneyCoach
KidneyCoachNKF Ambassador
in reply to BabbetteFrank

Who I was not disagreeing with you per se, only adding to your comments. Yes we are to be positive and I will add educational and informative as well as realistic IMHO Mr. Kidney. I'm sorry you feel the need to accuse. It matters not what you think of me. This was and IS my thought and way of living. Hold to hope and positive attitude above all wherever and whenever and however possible....no matter what. Anyone who knows me personally will tell you I always have the best attitude. However I am not one to go into something uninformed or uneducated. I know plenty of those who are still living life well 20+ years post transplant, plenty. I also know (sadly) some who quit taking their meds due to non coverage and lost their transplants. It's NOT fair. But it is the reality of living with ESRD.

Now, IF I am being accused by Mr. Kidney of wrong doing I fully accept accountability. He has never needed dialysis. He has not had PKD, or CKD for 40 years been through ANY transplant class or evaluation (to my knowledge) hasn't needed nearly 100 procedures and about 25 major surgeries and multiple broken bones due to complications of long term dialysis (18 yrs), nor has he ever been listed for a transplant. I also survived 7 episodes of sepsis, 2 episodes of C-Diff, more than 3 dozen chest, neck and groin catheters, 14 arm accesses done in center hemo, PD and home hemo and have had both buttonholes (my sticks) and sharp sticks (both myself and hubby do those sticks). I've attended numerous conferences, conference calls, educational seminars and more, mind you all this while raising a family on a farm and then working 2 separate jobs nearly full time. I've also welcomed 10 grandchildren into this world and traveled from Georgia, Texas, North Carolina, Minnesota, Missouri, Iowa, Alabama, Florida to D.C. and more.

Over the past 12-15 years I have served ambassadorships for DPC and AAKP. Volunteered as an accredited kidney health coach with AKF hosting many kidney health classes. I've also served on BOD for Home Dialyzors United, volunteered on several committees with NKF including PAC and Mentor with PEERS mentor program, ESRD Networks acted with NCC for ESRD Networks as a Subject Matter Expert, published multiple newsletters as a Network Patient Representative, written a few blog posts for NN&I, Home Dialysis Cental to mention a few. I've also worked as a patient speaker with MOKP. I am the first to admit I don't know much. I know a little about a lot but a lot about very little but I don't know it all. Nobody knows it all. We can only share our personal experiences.

If you care to accuse me please do so person to person Mr. Kidney. I am not intimidated. I can easily stand strong on my own merits.

I am FAR from perfect but I am ONE TOUGH COOKIE and as positive as they come. I wouldn't be here if I wasn't.

Blessings

WYOAnne
WYOAnneNKF Ambassador
in reply to KidneyCoach

You have no idea of what I have gone thru since my transplant!!

KidneyCoach
KidneyCoachNKF Ambassador
in reply to WYOAnne

No I don't. This ESRD life is not for the weak. I'm so sorry for your suffering. I truly wish you better days, family and friends to support you and ENOUGH of everything else to sustain you. Blessings

My husband had a kidney transplant from my son at the age of 50 and it lasted until age 64. At the age of 64 he got a transplant from me. Every person is different and each person's transplant is different. He had few complications with my son's kidney and more with mine. During this time he tried his best to exercise and eat healthy and was always grateful.

I suppose we could all get brand new kidneys...do everything to take care of them...and then die in a Plane Crash along with hundreds of extremely heathly people...We dont come into this life with any guarantees....We all have an expiration date...We can all get busy living or get busy dying....no matter what our health status is...

Absolutely!

WYOAnne
WYOAnneNKF Ambassador
in reply to RhwnSutchess123

You are so right! Life is not always fair!

Reading some of the comments make me think there's too much negativity on the forum sometimes. Stories about dying etc in surgery do nothing to help people facing difficult moments. People can get it straight from their doctors and come to this forum for hope.

MarissaA_NKF
MarissaA_NKFAdministrator

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