Hi Anon, you have come to the right place. After reading your posting. I am glad to hear that you will be going to get your ultrasound. With a Gfr of 45%, blood pressure readings of 130/90 - you have classic symptoms of beginning stages of Polycystic Kidney disease. I too went through the same things and same questions as you did in October. Your creatinine level is better than mine (1.7). I was 45% at the age of 43 yrs old too (my points went down 2% since october). You and I are at the same level of this disease process. My suggestion is to see your primary first, she/he might order a CT scan. DO NOT GET THE CONTRAST DYE! Its not good for our type of kidneys. We do not filter the same as a normal functioning kidney. I know someone who had all sorts of problems(after the contrast dye), psychologically and physically with his kidneys. You will probably be sent for tests, dr appts (urologist, oncologist(if needed)). It is a long road that we have to face when we first get diagnosed. I find myself having all sorts of emotions. I see the nephrologist for the 1st time at the end of the month so I don't have anything to tell you about what to expect with that. Its been a difficult year for me because I just go over breast cancer earlier in the year and now I am dealing with this. Like you, I am also thin, extremely active (walking, running, rollerblading). This disease comes in all forms and sizes. Its important to get tests done to see if the polycystic kidney disease spread to some organs (even at our stage). It can spread to all types of organs. Mine has spread to the spine and also have cysts in the back of my skull. We have to be careful of aneurysms in the head too. If you get a chance, please check out "dailystrength.com" to reach out for others with our disease. I am on there. Hope to hear back from you soon. Keep us posted as to how the ultrasound goes. I know I have been where you are, I am 44 - around the same age you were diagnosed (43)..I am here for you, do not worry. Polycystic Kidney disease is something that takes many years to progress, if it does. Not everyone will have renal failure. Our situations are different across the board. Check out PKDfoundation.org. They have a PKD talk coming up on June 13 at 8 pm EST. It should be really interesting.
I was diagnosed with it in October 2009. I do not have family history of PKD and have a mutant gene. I went for an ultrasound and is was discovered that I had PKD. I am sure it was diagnosed at your ultrasound during your pregnancy. I do not have any symptoms as you mentioned above, at least not yet. Sounds like you may have the classic symptoms of PKD and I would get a diagnoses ASAP. You also should see a nephrologist who can better track your care. What my primary was concerned about was my fluctuating blood pressure (one day it would be 120/80, then I would have a string of 130/90 readings). That is why I had the ultrasound. My creatinine levels are about 1.7 so they are still pretty good and my GFr (kidney function) is at 43%. Its best to know those numbers by heart when you have your next blood test. If your doc hasn't checked, its wise to get it. I just had a CT scan without contrast dye and the cysts are now spreading to my spine. Then I had a bone scan done last week and have yet to see those results. Its turning into a summer of tests and dr appts.View Thread
Hi Mammy, I am so sorry about your father. I was just diagnosed with PKD in October 2009 (at 43). This email has taught me that this could happen to me when I am 80. I am sure he did everything possible to deal with this long winded dreaded disease we have. Sounds like he had this for years. Hopefully he will turn himself around for you and your family. I hope he will be an inspiration to us PKD people.
oh my what a story. I found most interesting about the CT scan and your allergy to shellfish. You'd think the physicians would know about it. I wish you a speedy recovery after next weeks surgery. I will pray for you.View Thread
great to hear that here we go now, I am at 43% function but feel like 90%, asymptomatic. I guess everyone is different with their pkd. I do get tired (mostly its because I just got over DCIS breast cancer and rads last month). No problems with my left and right flanks and no foam (not sure what that is?? is this something I should be worried about?). No swelling in the hands or legs. Life is good here too..View Thread
My Primary Dr has ordered me a CT scan with contrast dye. I have been doing much research on the subject and after reading this and getting informed info from my nurse educators at my hospital system I work at, I have been told that under no circumstances am I to do the contrast dye because it could be extremely harmful with the kidneys. So, I cancelled the CT scan yesterday but will meet with the urologist next week to go over my next steps. I would rather be informed by a urologist or nephrologist about my PKD than my primary. I know she ment well but she does not know the affects of the contrast dye and kidneys. My gfr is still in the 40's and I don't want to be sent to the hospital for a week and have my health be at risk.
ok, John. I will make an appt with the urologist to see what he says. Sounds like they want me to see him for a consultation only. I'll make it when I get back from my vacation next week (5/9-5/15).
Right now, I am asymptomatic and at this time, she wants to keep track of things. I have another blood test script the PA gave me to be done within 6 months (I see them again in November but will do the blood test in October). I also have to get a CT scan, it will be done after 5/15.
The GFR only went down a point from 44 to a 43 in the past 6 months. I've had 3 normal readings of BP. they want me to monitor the BP.
Just came from my primary Dr appt on 4/29 (yesterday). Found out that my GF is 43. Creatine levels are just a few tenths of a point higher than it should be (I can't remember off hand what the norm is but if the normal was 1.5, I might be a 1.7, something like that). Should I be concerned about this # at this stage in the game. I was told that my PKD is at the earliest stages. I have to schedule a CT scan. Also, instead of referring me to a nephrologist, she referred me to a urologist. Is this ok? Maybe I should call the primary office and ask what the reason is, or should I just play dumb and call the urology office and ask whether or not they accept PKD patients. I just find it odd.View Thread