Newley Diagnosed

[Karen1222]

I just learned I have PKD/CKD. At this point I’m trying to find out all I can about this disease. I was born with only one kidney so I am extremely concerned and a little apprehensive about what the future holds for me. For the last 3 blood tests I’ve had, my GFR has been in the range from 41-43. My calcium has been elevated in the blood tests so my nephrologist wants me to have a Parathyroid Scan. Has anyone had any experience with this test?

[Hidden]

I feel pretty lonely sometimes too and I'm married

[rabbit01]

please don't have anything to do with this guy Juliusk. I have reported him.

[KristiS_NKF in reply to rabbit01]

Thank you!

[rabbit01 in reply to KristiS_NKF]

Thanks for your quick response and action. What awful people there are!

[Hidden]

Hi Karen, welcome to the family. ❤️ I am sorry to hear about your diagnosis. I was diagnosed with PKD 12 years ago at age 36, and I am just starting my journey to peritoneal dialysis at age 48.

Diet and lifestyle are 2 very important factors that can help to preserve your remaining kidney function. Sadly, my unmanaged stress did me in and I wish I could go back. But overall this disease is manageable, and hopefully you have found a good nephrologist and renal dietician to help you in your journey. ❤️

[Karen1222 in reply to Hidden]

Thank you for your encouragement! Unfortunately stress is a huge part of my life right now as well. Trying to manage it best I can but I believe I can at least control my diet.

[rabbit01 in reply to Hidden]

you are so right about stress. I had a two hour each way commute to a stressful job in London. I did that for 20 years 😳. I am convinced that leading that lifestyle had a negative impact on my kidneys.

[rabbit01]

Hello Karen,

Considering that you only started with one kidney then you are not doing too badly with a eGFR of over 40. I was diagnosed with CKD five years ago but was already down to 17% at that point. I started dialysis at home last October. The Parathyroid scan is pretty straightforward. I had one in 2004. It is to determine if one or more of your parathyroid glands is swollen which means it is overactive and producing too much hormone which is called PTH.

[Karen1222 in reply to rabbit01]

Thank you so much! Your input has made me feel much more relieved. Good luck with your dialysis. Sending good thoughts your way.😊

[rabbit01]

That is good then. One of the worst things for our kidneys is stress. I used to have a very stressful job and put work before my health which is never a good idea. I am convinced that chilling 😎 out as much as possible will help. Certainly since I packed up work I feel so much better. In fact being on dialysis is wonderful compared to how I felt before I started. Well look after yourself and feel free to ask us anything.

[Karen1222 in reply to rabbit01]

Thank you!