I am a 67 female with polycystick kidney disease my function is now at 22%
I was wanting to see how other people feel at this stage of the game and what their Drs have then doing and how ofter the Dr checks them. My Dr still has me coming in 1 a yr. I am wondering if he is taking this serious enough.
I am a 66 year old lady with chronic kidney disease, stage 4. I have only one kidney. My right kidney was removed three years ago because of renal cell carcinoma cancer. My egfr is at 18%. I am on a low potassium, low calcium, and low salt diet. I have an appointment with my nephrologist every three months and have bloodwork done every three months also. He keeps close tabs on me. It is extremely important to keep your potassium and calcium within normal ranges and monitor your blood pressure. My left kidney has numerous cysts but so far I have been able to avoid dialysis with proper diet and blood pressure medications. My doctor feels I may never have to go on dialysis if I continue to follow his directions. I don't have alot of energy, so I have learned to set limits for myself.
Please feel free to ask any questions, I know how important it is to have others who are dealing with kidney disease to discuss issues with. There are many other people on this board who are always willing to help.
I too am in stage 4, where I have been for years now. My kidney failure was the result of many years of malignant hypertension, that eventually led to four strokes all at once. The strokes happened 10 years ago. In the last 6-8 months my numbers have really fallen. Now my nephrologist wants to see me every 8 weeks, but I have had times where I did not have to go for six months.
My strokes happened when I was only 43, and had devastating effects on me, Besides the kidney failure, I also had other organ damage in the eyes, heart, thyroid and brain. I have refused to give up, but I am much more careful with my time, diet and energy use.
My last blood work results scared the wits out of me. They just came in, but my appointment will not happen until all the tests are completed. I also am in heart failure so I see my cardiologist every 4 weeks. He just put me through the tests I get every 3 -6 months. Thankfully, all my specialists are keeping close eyes on me.
It can be hard to distinguish the effects of the kidney problems versus the all the other things going on. All I can do is be really careful with my blood pressure, my diet, and all the medication I must take. I think the most important thing I can do is maintain a positive attitude and look for the joy that is all around us.
I have also spent lots of time here on the HealthBoards, connecting with others who are experiencing similar things. Just getting it out, and knowing you are not alone is a great boost. Plus there is so much we can share that is helpful to others, whether we know it or not.
I hope you find the same comfort in coming here.
See you again!
Last edited by growagourd; 06-16-2013 at 05:40 PM.
The following user gives a hug of support to growagourd:
Thank you for your reply. My primary Dr feels my kidney dr is not keeping close enough tabs on me , so we do a test at the 6month time. Since I also have parkinson's disease I don't know what comes from what sometimes.
I have noticed a difference in the way I urinate I have a lot of starts stops so fourth. That has been going on for about 4 months.
I follow no diet maybe I should I thought it might be too late for that.
I understand how confusing it can be when you have several health issues going on at once. I never know what is causing what myself. I would side with your primary when it comes to how often you need to have blood work. Way better to have it sooner rather than later. Once we get to this point, things can happen fast. My experience has been that kidney failure happens very slowly though, but now that we are in the last of our numbers, any worsening of our condition needs to be noted.
My urination has changed too. It sounds very much like yours. I tire very easily, and have gone through episodes of depression and anxiety. I actually have a caretaker for my meals, laundry, housekeeping and medication. I fight to the end to keep my attitude positive and my home happy, which is the biggest blessing I have. I think our attitude is key to managing any health problem, which can be no small task at times. It definitely helps to have others to reach out to and share our thoughts and feelings.
I have already been counseled on dialysis, which does scare me a bit. I know that we have to greatly alter our fluid intake, and our diet. My doctor has not suggested any strict diet for me so far. I am careful with my intake of sodium, protein and cholesterol, and do take supplemental calcium and Vitamin D.
I completely agree with Growagourd that things can happen quickly when it comes to stage 4 kidney disease. I also suffer from stomach ulcers and
erosion of my esophagus because of excessive stomach acid. My gastroenterologist put me on the generic form of Zantac and my level decreased to 16%. Scared the heck out of me. After four months of following a strict diet and stopping the medication, my level is going back up slowly, I am at 18%. If I hadn't asked for a blood test to check my creatinine, I hate to think what might have happened.
I haven't been counseled on dialysis and I hope I never will be, but all we can do is hope for the best. I am grateful for every day that I am able to spend with my husband. He also has one kidney and understands how I feel.
These boards have always helped me cope with this disease and I hope I have been able to help others who need issues and questions answered. I wish you both the best and hope to hear from you soon.
Thank you for your reply. I try and have the same attiitude you have and enjoy each day as much as I can I do not have a good mind set as far as going on dialysis . Many of my family have had the same kidney problem as I have so I know what is ahead plus the Parkinson's seems a bit much at times.
You are so right in having help at home, that is something I haven't done yet but probably shoud do so that when I do feel good I am enjoying myself.
Good luck to you, we seem to be in the same stage of our problems and it is good to hear anothers feelings.
By the way, I am a dog lover, so I love your screen name.
Has dialysis been discussed with you? I have actually been on a break from all my doctors, except my cardiologist. There have been one or two times during my 10 years of intense medical scrutiny that I have just taken a break. I know it is not prudent, and I always return to my regular care by all the specialists.
I am still mourning the passing of both of my parents, completely unexpectedly.The passed exactly 30 days apart..My only sister also chose to disappear before the funerals, so I took care of everything. I am still not over it.
I have lost so much of myself to illness and trauma, but I still devote everyday to as many moments of happiness I can provide for my family and friends. So much of it I learned in stroke recovery, only to loose it to kidney failure.
This is not meant to be a sob story. instead a testament to our ability to fight. My kidney failure has always been lurking in the background, and I always had other health issues that took their places in front of the line.
Suddenly the kidney failure has put itself into the front of the line. So we are in the same boat. I still have appointments with my nephrologist and neurologists to clarify the blood work results.
I hope not to overwhelm you with "me me me" statements, I am hoping we can help each other through the present and future.