Stage 3b and diabetic

[mentaljay83]

Hi so I'm 38 and recently told I'm stage 3b my reading was 36 and now 33 just 4 months later. My specialist told me I should get kidney and pancreas transplant. Any advice ? Wisdom? General info ? Thanks

[S_dillow]

have you talked to your nephro in detail?dont know what other conditions you have but there are docs out there who will push for transplants like that.a little more info?seems kind of odd for 3b

[userotc]

Google for details of your "specialist" and, if he's a transplant surgeon, it indicates the value of his/her "advice"!.

We did this for my mum (stage 3a) and found her nephrologist was indeed a transplant surgeon. So he's probably disappointed mum has managed to increase her eGFR from 36 to (ave) 60 over 5+ years purely by natural means involving diet and lifestyle. Strangely he tries to take credit for that - despite his only advice being "keep doing what you're doing"!

[Hidden in reply to userotc]

Why would he be disappointed? My Neph is also a transplant surgeon and she cheers me on with any progress my disease makes in a positive direction!

If he's that evil, you should switch doctors.

[userotc in reply to Hidden]

I was being a bit facetious (maybe needed a ! mark?). The main point Im making is that a good nephro should do more than just say "keep doing what you're doing" as mum's does. I did recommend that mum changes but, in the end, we decided to manage her CKD ourselves instead.

Hopefully your nephro does more than just cheer you on.

[Hidden in reply to userotc]

Of course she does, as do all of my doctors. Not all "medics" are evil trolls, like yours. Unlike your "Mum" I haven't got a son who manages my care so I leave it to the professionals.

[userotc in reply to Hidden]

Good, I'm glad. We've probably deviated from the original post with our respective experiences. But I'm sure we agree that the "specialist" referred to in the OP qualifies as more of an "evil troll" than mum's nephro with the double-transplant advice. So youre lucky to have a better medic than many others.

PS I'm also a professional being a qualified Nutritional Therapist which I believe is appropriate for early CKD 👍 Take care.

[Hidden in reply to userotc]

LOL! Yes, we know. Take care.

[lowraind]

I would definitely get a 2nd opinion. An endocrinologist referral from your primary physician would be your best choice.

[Tolmezzo]

Variation from 36 to 33 it's nothing. There's a lot you can do to delay progression: diet, life style, BP, dyabets control, exercise, etc. Maybe you are still on time for SGLT1 inhibitors. My wife gained 10 years and still not on dyalisis.

[Darlenia]

I assume you're a Diabetic Type 1 (T1D) since your doctor advised a kidney and pancreas transplant for you. If that's the case, I can understand the recommendation because T1D is particularly harsh on the body as the pancreas is completely nonfunctioning. Unfortunately, in the US, one can't be worked up for the transplant list until eGFR decreases to 20 or less. So your doctor may have suggested going this route simply to get you to think about it. He is smart to prepare you that since diabetes can behave erratically - one day you may be fine, the next day your world may be turned upside down. So knowing the "next steps" is good. In our case, my hubby's (T2D) blood pressure suddenly skyrocketed which required emergency dialysis which was then followed by a transplant a year later. In your case, do whatever you can to keep yourself stable. In my opinion, you've done quite well for yourself thus far. And, besides keeping a kidney/pancreas in mind, you might want to look into a pancreas islet cell transplant too. Canada and some other western nations are performing those quite regularly to restore natural insulin production. It has a high success rate. The US, sadly, is lagging behind in this area but maybe you can find a center doing them them somewhere. Stay focused and good things will come to you. Glad you have a proactive nephrologist.

[mentaljay83 in reply to Darlenia]

Hi Darlenia.Yes this is the case type 1 for 30years and always found it hard to get good hba1c usually around 9 -9.6. So yes I'm starting to get alot of long term effects . I'm in Australia and actually yes the doctor has suggested islet cell and kidney . And yes he was saying this is a preparation as obviously waiting lists are generally a few years . I have changed my diet significantly since consultation so at this point that's all I can do . Just was seeing whether others had had this experience.

[Darlenia in reply to mentaljay83]

So sorry you're going through this. Sending prayers you get that transplant - after thirty years of this, you deserve a wonderful outcome. I have run across people on other forums who have indeed received a pancreas/kidney transplant - which often eliminates their diabetes. Interestingly, some of them seem to get priority consideration on the transplant list - in the US. So be encouraged. Stay positive.