Okay--I am going to be the first suggestion here. My one and most important tip would be to WRITE IT DOWN. Keeping an accurate log of doctor appointments, questions for your care team, and what responses they give you is a must. Not only will it give you good order in your treatment/care, this gives you a working diary to help you plan on what questions and concerns you have. The information is in a safe place and not circulating in your mind and creating an anxious anxiety condition.
Now you have my ONE THING--What is yours?
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Bobbiereed
NKF Ambassador
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Listen to you doctors and follow everything to the letter. I'm in end stage and have a gfr between 7.5 and 10% for the last 2 and a bit years and not started dialysis and they say that is because o have followed their strict advice. It's hard some days but worth every excited day I get dialysis free.
On dialysis, keep your albumin level {protein} high { above 4.0}. After transplant take meds every day at the same time. Set your alarm on your phone to remind you to do that. NO junk carbs, only good carbs & protein. GOOD LUCK. 2&1/2 yrs on dialysis, & 6&1/2 yrs post transplant
The one thing I learned the hard way is to be your own ADVOCATE. This is your health and your LIFE! If you don't like what your doctor is telling you and you have doubts - speak up for yourself. Make sure you understand everything they are telling you. And if you still have doubts, you can always change doctors. You do not have to keep your GP or your nephrologist if you are not happy. It is so important to have a doctor you can TRUST and one that BELIEVES what you tell him!!
Yes, be your own Advocate! Make sure you understand everything about your condition and treatment. Ask questions and take notes so you are able to refer to the notes later. If you have access to the internet, research everything! Follow your doctor's orders and find out what and how much you are supposed to eat. And the most important thing is a POSITIVE ATTITUDE!!
Yes! Totally agree with you. To add to your thought---Take someone else with you to your appointments and have them be your note taker so you can focus on what the doctors and clinicians are telling you. Sometimes, they can chime in on things you might have missed or something that they thought of. Four ears are better than just two!
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