Questions about life after a kidney transplant?

[MCM5278]

Hello everyone. I am a type 1 diabetic and have ckd which is progressing really fast. By the way things are going it looks like I may start dialysis soon or get a transplant. What I am curious about is after a transplant do your blood pressure problems get better? Right now im takin 14 pills a day to control my bp and I really hope that one day I won't have to be taking all those blood pressure pills and have the up and down bp readings. I was also wondering what the immune suppressing drugs are like and how they make you feel and affect your day. And the last Is about retinopathy. Can it be controlled while you have ckd or will it be a constant problem? Right now I have had to have a lot of treatment for retinopathy and it makes me scared with the hard to control blood pressure that it will continue. Thanks in advance to anyone who might be able to provide some insight on this. Thanks

 

[noblehead]

Certainly it is important to control bp with diabetic retinopathy, but this is easier said than done for someone with CKD, The best people to consult with regards to your questions are your Nephrologist and Ophthalmologist.

There's an article in following about about bp and renal function that might be useful:

http://www.diabeticretinopathy.org.uk/prevention/DiabetesBloodPressureprof.html


Hope it all works out well for you, so best wishes.

 

[MCM5278]

Thanks Noblehead that was definately useful information. This ckd is a pretty crazy ordeal for me. It came on suddenly and has progressed pretty fast. It's a long story but pretty much I went in to the hospital for a screw I stepped on, admitted in with normal blood pressure and decent kidney function never had retinopathy and came out with high blood pressure problems, retinopathy and a declining kidney function. I supposedly had a bad reaction to the antibiotic. So then my first nephrologist didnt have my bp under control so my kidney function went from something above 80% in October, to 44% in December, to 35% in march, to 28% in July. So I got a new nephrologist now and hoping she can help get my bp under control. As far as my opthamologist, I think he's good but the thing I don't like is he is hard to slow down and talk to. I have to work to get a question in before he darts off after saying his bit. My sister has a opthomologist that says with diabetic ret you don't want to treat it to aggressively. Mine has lasered me quite a bit lately. I also have new reAlly bad light sensitivity and when I ask my opthomologist about it he says its probably just me having blue eyes. But I know that's not the case because its new. So I'm wondering if I should seek a new opthomologist with all this being said. Sorry kinda rambled on unnecessary. I stepped on the screw a year ago today. I'm on vacation with my family and its been really hard trying to keep up with them all and it makes me sad so I guess it just feels good to tell my story. Thanks for listening and thanks for the info.

 

[jack412]

@MCM5278 give this research to your new nephrologist, I don't know where it went from the initial mouse trial, she may know.
the doctors use the ketogenic diet as a recognised treatment, to treat epilepsy seizures and it seems it has merit with kidney function too

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0018604
Reversal of Diabetic Nephropathy by a Ketogenic Diet

http://www.nbcnews.com/id/42689095/ns/health/t/low-carb-high-fat-diet-could-replace-dialysis/
A type of low-carb, high-fat diet that's typically used to manage seizures for children with epilepsy could reverse kidney disease in Type 1 and Type 2 diabetics, a new animal study suggests.

the standard LCHF diet is said to help kidney function too
https://www.google.com.au/#q=lchf+kidney+function

 

[noblehead]

Thanks Noblehead that was definately useful information. This ckd is a pretty crazy ordeal for me. It came on suddenly and has progressed pretty fast. It's a long story but pretty much I went in to the hospital for a screw I stepped on, admitted in with normal blood pressure and decent kidney function never had retinopathy and came out with high blood pressure problems, retinopathy and a declining kidney function. I supposedly had a bad reaction to the antibiotic. So then my first nephrologist didnt have my bp under control so my kidney function went from something above 80% in October, to 44% in December, to 35% in march, to 28% in July. So I got a new nephrologist now and hoping she can help get my bp under control. As far as my opthamologist, I think he's good but the thing I don't like is he is hard to slow down and talk to. I have to work to get a question in before he darts off after saying his bit. My sister has a opthomologist that says with diabetic ret you don't want to treat it to aggressively. Mine has lasered me quite a bit lately. I also have new reAlly bad light sensitivity and when I ask my opthomologist about it he says its probably just me having blue eyes. But I know that's not the case because its new. So I'm wondering if I should seek a new opthomologist with all this being said. Sorry kinda rambled on unnecessary. I stepped on the screw a year ago today. I'm on vacation with my family and its been really hard trying to keep up with them all and it makes me sad so I guess it just feels good to tell my story. Thanks for listening and thanks for the info.

That's awful to go into hospital with something so minor and to come out with all those problems.

The Ophthalmology clinics are rather busy and the appointments can be brief, however you should pin your consultant down and ask them all the questions you need to ask, if he is unwilling to answer them then certainly change Ophthalmologists. Good luck and best wishes.

 

[MCM5278]

Jack, wow that's really exciting information. I'm excited to ask my nephrologist about it. That would be super awesome if it could repair things. But even if it didnt repair in sure the diet would e super beneficial. Thanks for sharing, I appreciate that.

Noblehead
Thanks, yea it's a huge bummer and has affected my life in an extreme way. Thanks and I appreciate your advice.

 

[jack412]

Jack, wow that's really exciting information. I'm excited to ask my nephrologist about it. That would be super awesome if it could repair things. But even if it didnt repair in sure the diet would e super beneficial. Thanks for sharing, I appreciate that.

Noblehead
Thanks, yea it's a huge bummer and has affected my life in an extreme way. Thanks and I appreciate your advice.

don't get your hopes too high, as I said I don't know where the mouse study went and if there were human trials re kidney failure.
Most dr will cringe at the mention of fat, let alone going from the current 30% back to the 1970's 40% and even further back to a winter of ketogenic 50+%. perhaps if you also provide your dr with the data on it being used to treat epilepsy safely may help. healthy fats like nuts, olive and coconut oils
It's quite likely your Dr cant get past the eat fat and die, that has been taught for the last 40 years

... but if it was me, I'd at least have it on the back burner. Check with your Dr. I haven't seen any data that LCHF is bad for kidney function. anecdotal statements of improved eGFR and some mice saying it's good...a worse case is maybe it does nothing but wont harm you and helps your BG

 

[MCM5278]

Thanks Jack. I wont get my hopes up to much. I've been doing a lot of looking into this and it makes sense to me how it could if anything be beneficial to me. But I'll definately check with my doctor first. Thanks again.

 

[jack412]

\

Thanks Jack. I wont get my hopes up to much. I've been doing a lot of looking into this and it makes sense to me how it could if anything be beneficial to me. But I'll definately check with my doctor first. Thanks again.

if your Dr accepts that it won't make it worse, with your GFR quickly going down, even if it stabilises, it will be a win,
but I don't want to sell you snake oil and false hope and I know I would build hope