Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
I went for my semi annual apt. yesterday and I was very pleased to learn that my GFR has not gone down any further. Actually all my labs have improved. I still remain at 38%, which is stage 3 kidney failure. My kidneys have decided to grow, which I already new, due to my waistline and my clothes issues. My kidney doc was very smypathetic with me yesterday and really puzzled me, why? When everything stayed the same or in some cases, improved would he treat me like that. He looked down at me over his glasses and said, "you know Norma, the disease is progressing, it's just taking longer with you." He further stated that my GFR had declined some 13 points since my first visit to him over a year and a half ago. I begged to differ with him as I have all my labs at home and that is a blatent lie! I went in there at 42 and it is now 38. He didn't comment any further as to that. I did what he asked me to do with the renal dietician and my labs did improve, actually my creatinine is better, it's at 1.3 which is bearly above the high end of normal. Potassium, phosphorus, sodium and protein are all within normal limits. I'am puzzed about this guy that I really don't know, other than the fact that he owns the dialysis center right next to his office! I'am trying very hard not to imply anything, but I have to say, something doesn't feel right about this. Why was he so "sympathetic" with me when everything had acctually improved. Why was he treating me as if dialysis is just around the corner? or imminent? I've really confused and having a hard time understanding what is going on with him. Also at the end of our visit, he told me he won't be seeing me any longer and that his nurse practioner will be taking over my case?
I have all my labs from NC and VA, plus all my labs when I first began seeing him. I have copies of all radiology reports from ultrasounds, I have kept copies of everything and nothing indicates that dialysis is even remotly necessary any time in the near or distant future. If anyone wants to know any of my labs, I would be glad to tell you, it's just that I'am so puzzled about his attitude towards me. Even patting my head as he exitied the room with his head down. Am I going nuts or something or is something else going on that I'am not aware of. Thanks for any help you can give me.
Norma..
I have all my labs from NC and VA, plus all my labs when I first began seeing him. I have copies of all radiology reports from ultrasounds, I have kept copies of everything and nothing indicates that dialysis is even remotly necessary any time in the near or distant future. If anyone wants to know any of my labs, I would be glad to tell you, it's just that I'am so puzzled about his attitude towards me. Even patting my head as he exitied the room with his head down. Am I going nuts or something or is something else going on that I'am not aware of. Thanks for any help you can give me.
Norma..
I will e-mail you later as to my appt tomorrow..
Jen
when I told him I didn't feel I could do dialysis there, due to distance and parking (I had no idea how I would feel after dialysis) he told me to find another nephrologist. best advice I ever got from a doctor, my next nephrologist was wonderful, we won't even mention that he looked like a soap opera doctor. he told me he would do all he could to protect my health. I didn't start dialysis for about 18 months.
1.3 creatinine sounds like normal range to me, I thought 1.5 was the high end.
a doctor who doesn't own a treatment facility has no real advantage in keeping you healthy. its all about money.
I didn't want to come right out and say that, but you did, so thats exactly what I was thinking! Poor guy and to think that he had to pass me off as "status Quo" must hurt is pocket too, sending me to his nurse practionier, of all things! I think it's time for me to find another kidney doc around here, prefably one thats tall, dark and handsome, perhaps I need to interview a few, hah!
Ok, Jen, good luck and I'll talk with you tomorrow. Must be your flash forward was pretty funny too. I probably am pretty funny at my age,I just put myself in fast forward mode. Yikes!
Thanks Helen
It's sad, (to say the least) when a doctor even hints at a conflict of interest.
These days, with doctors becoming part-owners of medical testing and treatment facilities, it seems to become a necessary question to ask when seeking a new doctor.
Interestingly enough, about 10 months before my kidneys failed, I asked my neph when he thought they would fail. He estimated about September. My first dialysis treatment was Aug. 17! Not bad!
As always, Norma,
Best of Luck and Keep On Truckin'!
Peace and Blessings!
CoachRichie