I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: racko on May 22, 2015, 10:55:11 AM
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Exactly how bad is it?
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Your nephrologist should be talking to you about renal replacement therapy, ie dialysis and/or transplant.
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He did I am not interested in either.
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OK, well, just for your reference, when I received my transplant, my egfr was 14 and my creatinine was 3.99. I had not been ill enough to have had to go on dialysis. There are people who have numbers better than mine but who were sicker, and there are people whose numbers are far worse than mine but managed to stay off dialysis for a fairly long time.
If you are not interested in either dialysis or transplant, then it doesn't really matter how "bad" those numbers are. The other numbers become more important, numbers like potassium and phosphorus. High serum potassium can cause disturbances in the electrical current to your heart (potassium is an electrolyte) and give rise to heart attacks, and high phosphorus will cause itching and calcium imbalances that can cripple you. If you can keep those numbers close to normal, and if you can control high blood pressure, then you may be able to keep going for a good while.
It depends upon how you define a good quality of life for yourself.
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If you choose not to accept treatment, then your doctor & probably a social worker need to help you with palliative efforts/hospice and end of life decisions. Not immediately if your GFR is at 11 and your condition is progressing slowly, but it's best to start making decisions and prepare yourself and your family.
At one time, I thought I would let nature take it's course, too, but after reading postings here, I learned there can be a good life after kidney failure. It doesn't have to be a death sentence. You can always start dialysis and then change your mind. At least it remains under your control.
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I was in your position about 5 years ago. My gfr was reaching the point my nephrologist wanted me to start thinking about dialysis. I did one of the smartest things I ever did by agreeing to have a fistula installed. I was at 365 pounds at the time. I changed my diet to eat more fresh foods less prepared foods and over the next three years I felt great and every three month my nephrologist said it was time to start dialysis. I refused and felt I could wait for a sign you know like a symptom. Well I began to feel run down and occasionally nauseous but one day in work I up chucked at my desk with out warning. I decided to take that as the sign to begin dialysis. I will be the first to admit that first treatment was a horror, mostly because I was so scared about what I was getting into. I can tell you two things after 2years on dialysis. 1. Change your diet watch what you eat and try to avid it as long as you can. 2. If the time comes (I know one person with a 5year old fistula that has never been used) dialysis is better than a trip to the dentist. I worked full time for most of the 2years and at 63 just decided to go out on disability. If I was younger I still would be working. I spend about 15 to 18 hours a week on dialysis or related activities that still leaves 150 hours to have a non dialysys life. Every one hates dialysis but those on dialysis are alive to hate it. Good luck with your efforts and I hope you avoid it for a long time. But it's not the end of the world.
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Thank you all for your informative responses. Your advice is better than anything I got from the medical profession. You all seem very sincere in you response. Thank you Pat