I'm new to the kidney forums, wanting to reach out to others dealing with the same thing.
I have CKD due to a genetic condition called Alagilliy syndrome :/ I'm 39 with a husband, 2 cats & a rescue dog
I'm currently in stage 3 almost 4 with my latest eGFR rate being 31 and my creatine at 176.
The only restrictions right now are to try & go more vegetarian... Any words of wisdom from those dealing with it longer ?
Welcome to the board Wendy. I know you will find a lot of people willing to chat with you and discuss what is going on with them and their kidney issues and it helps to talk to others that are in the same boat as you are. It is very hard for people that do not have kidney disease to relate to those that do simply because they can not feel the effects of the disease that you feel.
There is also the psychological side of the disease and that is half the battle in and of itself.
One of the the things I found most helpful is to not live for the disease but to live with it. With modern treatments available today kidney disease is very manageable but it takes a lot of effort, time and work, and like anything else you only get out of it what you put into it.
I think a lot of us get into the why me mind set and become depressed and that's easy to do but the truth is almost all kidney failure is no ones fault it just happens. It is a disease that occurs across the world and no one is immune from it. Very few people have kidney disease from something they did in life that caused it like drug abuse or coming in contact with an outside element that causes the disease to flair up. There is some genetic possibilities but the reality is no one knows for sure what causes it. Again it does no good to point fingers looking for blame. Your time is better spent dealing with the condition and working on keeping the kidney function you have left with proper diet, exercise and medical treatment.
Any questions you have just ask and I am sure others will jump in to try and answer what they can for you.
Shirley they can put an emergency inlet in your neck to get you on Hemo therapy a lot faster so that is not an issue. The tissue is finding a clinic you can get yourself to and I can not help you on that. They will need to do surgery to get a fistula put in for long term hemo dialysis and that takes about 6 months total healing time but the emergency fistula will hold you until then,.. Your in for a lot of new training so get ready to learn a new way of life and diet and exercise.
Best of luck to you!!
Not sure of why things were not done Shirley. Most doctors can not force a person to start dialysis and until they decide to commit to it there is little they can do.
Most times it is the patients reluctance that causes the delay. I know from talking with you the last year you have wavered ever which way on this and now your GFR has dropped enough your starting to take this more seriously and that's a good thing.
I know for me I waited until mine dropped to 20 percent before I got serious and now I regret I did not start sooner but you live and you learn. No going back now you just have to live for the future.
All of us have different situations and circumstances that tend to dictate how we react to being told we have kidney failure and each is unique to each individual and their ability to care for themselves with the support and finances they have available. No one is to blame just life really.