IGA journey

[rere96]

Hi all,

First of all thank you without this place I think I would have constant anxiety on this journey as I navigate the world as a spouse caring for someone with Kidney Disease. My husband has an upcoming doctors appointment in February so as my anxiety rises I come here to seek hope. I think the fear of if something were to be horrible this month is what scares me. Last blood test my husbands GFR was at 42 which is usually the range his GFR has been since starting this journey, It will fluctuate from 38-42, He does spill protein and his creatine is always a bit high. I worry with every blood test that the number might plumate and then what. He told me last time of a medication called i believe Farxgia that they might try for the proteinuria, is this something anyone has tried? If something does get worse on this blood test would this medication still be an option. Are my fears rational, I know my husband has stage 3b right now but the fear of it progressing lingers in my mind, he's only 34 years old what does life look like with this if progressing, Dialysis? Transplant? am I scared for nothing is it a whiles away or around the corner? Again I thank this community for being so helpful and reassuring.

[itzmich]

I think we all go through anxiety and fear it's only natural. I have about the same numbers and protein which makes me nervous. I try to let go of worry because it robs you of the joy you can have now. Now when he should be pretty healthy. I am 70 and I know 34 is young but transplants and dialysis can extend his life. Diet and exercize is important that's something that he can do now and it will extend the time he stays in 3b. I hope in some small way this helps.

[Skip56 in reply to itzmich]

Je suis tout a fait d accord avec vous ,moi mon mari c est plus grave il est a 25EGFR ,cela m inquiètes aussi, il prend du forxiga, mais ça s améliore pas tellement.Courage a tous

[Bassetmommer NKF Ambassador]

Ok, your anxiety is not helping either one of you. The way to alleviate it is to get educated. Take some kidney classes. There are a ton out there and the best are on the National Kidney Foundation website. Once you understand what is going on, you should calm down. His GFR is not that awful, and he could stay at the area of GFR for years. GFR bounces depending on the time of day, and day, and so forth. Remember, it's a number, that's all. It will go up and down. Next learn about diet. See if he can get a referral to a renal dietician. If not, again, lots of info on the website. This is something you CAN control. NO alcohol, no red meat, no processed foods, low sugar and low fat and healthy choices. Lots of veggies. It is a lifestyle and and major change for most. I stayed off of dialysis for six years just with diet when I was told I would be on in six months. Hang in there and get control of what you can.

[Skip56 in reply to Bassetmommer]

Merci beaucoup de vos conseils,mon mari suit un régime alimentaire pas de viande rouge,ni de fruits qui contiennent potassium, pas de sel,son dfg varie tous les 3 mois , l important c est de le maintenir stable au dessus de 20

[Pepperthedog]

Bassetmommer's advice is spot-on - as I know from 43 years of managing PKD myself, and now at 81 leading a full life without dialysis; in the past 20 years my eGFR has fluctuated from 32-44. What matters is the trend.

On first getting the diagnosis I spent 24 hours in deep despair, then decided to take control of my health (which stiffened my spine and cheered me up). A dietician's advice is very useful, but there are lists of "good" and "bad" foods on various websites: salt and potassium are key ingredients to minimise. Your husband should drink plenty of water, take his medication regularly, and ideally walk or do low-impact exercise every day. And try to get enough sleep. Good luck - and enjoy the life you have.