Need to Say this

[WYOAnne]

Hi everyone!

I need to say something so that i am sure everyone understands. A lot of you have been asking questions about medications and dosages. We can only answer your questions from our point of view and from our experience. Everything, whether it's medications, dose of these medications, drinking wine, your diet, etc. - it all has to be approved by your nephrologist. None of us are experts. The nephrologist is the kidney expert and with you can help make the appropriate decision to keep you healthy. The one thing I have learned the 8 years before my transplant and the 18 years post transplant is that our kidneys are very complex organs. What works for one, won't work for another.

Ok, I am off my soapbox. Take care!

[SN23]

Thanks. And I do think everyone here is very aware that everything may not work for everyone and that no changes should be made without consulting their respective doctors. Reading about others experiences. however, does open up one to possibilities that one could explore with ones doctors. For example I asked the question about the dosage not to change anything on my own but for my son to discuss with his new nephrologist if going forward that could be a potential option if everything remains stable or improves. His previous nephrologist had prescribed additional medicines that the new one removed. So it is possible that the lower dose options were never tried.

[WYOAnne NKF Ambassador in reply to SN23]

I am glad that you understand that we are not experts and any advice is coming from our experience. I fear that sometimes everyone doesn't understand that.

Hope your doctor answers all of your questions. You need to feel good about how things are going. It's bad enough that your son is going through kidney failure but you need to feel that everything is being done to preserve his function for as long as possible. Thinking of you. Best of luck for your son!

[SN23 in reply to WYOAnne]

Thanks so much. Really appreciate your kind words🙏

[LoisDuncan]

Sometime medicine works other times diet works,or it may take a combination of the two. There may be other factors involved like blood pressure and dibities that may affect each of us. We all share knowledge but our weight vs dry weight may make a difference. However I do feel communication is key to have goals and work to keep them. It may be hard to communicate at times so writing down questions and bring them with you. I even asked a question more than once because I didn't remember it or understand completely. Someone who cares will answer you, and it may take some time to fully understand, just a thought.

[Charlene_Coxhead]

Well said WYOAnne I'm glad someone has said something as I do feel there are some people that think they know everything and are very bossing or forth coming with their advice, most of which they have found on line. Everyone is individual and our bodies are our own, and one fit doesnt fit all. I have low potassium so when people tell me on here to stick to low potassijm diet i do have to chuckle to myself.

I hope you are keeping well.

Charlene

[WYOAnne NKF Ambassador in reply to Charlene_Coxhead]

Thanks Charlene - well said. I really thought things were going too far the other day. I think as an ambassador we help monitor things on Healthunlocked. None of us are experts and can only speak from our own experience. Your right, what works for one, doesn't necessarily work for another. Take care and hope you are doing well.