Just a quick question for everyone.......We have had a lot of "newbies" on HealthUnlocked lately and it seems like everyone has been grouped together as having CKD. Just as everyone of us is unique there are many causes and types of kidney disease. Maybe a "newbie" can relate to you if you both have the same kidney disease!#@
So, what is your kidney disease? Do you know what caused it? Let us know your story.
I have FSGS (focal segmental glomerulosclerosis). My native kidneys are all scarred up inside. My cause of FSGS was from strep/nephritis that I had when I was a child. It was 40 years later that I was diagnosed with FSGS. I had a transplant in 1999.
Chronic Kidney Disease is Chronic Kidney Disease. I believe you may be referring to a possible underlying cause. In my case, it's Diabetic Nephropathy with an assist from being Hypertensive. It doesn't change the fact that I have CKD. In addition to the precautions, I take as a patient with CKD I have to extra vigilant on my blood sugar/pressure issues. To further highlight my issues I have known for about 14+ months that I have CKD. For that same time, I have also been off all medications for T2D. My blood pressure is also under control and has been for the last 2 1/2 years. That doesn't mean that I can ignore those issues now and just deal with my CKD. For many, many years they were the underlying reasons that caused my GFR to decrease. I have to watch everything.
For those with genetic conditions, they still have CKD but must be aware of the underlying issues and watch them all. It's a balance but it's also CKD.
I guess that is what I am getting at.....what is the underlying cause?
Diabetes? Polycystic kidney disease? Lupus? Kidney injury? Kidney cancer? IgA Nephropathy? etc?
Sometimes it helps someone that is new to all of this to have someone with the same cause.
That would mean that many people are also unaware that the "underlying" issues which they knew about, were usually not aware that it could lead to CKD. That makes me one of those patients. I knew for years that I had Hypertension but although I tried many things to lower it, I never had a physician tell me that it could lead to CKD. Same thing for Diabetes. I had T2D for almost 17 years before I was told that it was a leading cause of my CKD. The reason I bring this up is to further point out that many doctors are failing their patients by not informing them of this possibility.
After speaking to many folks from other countries who face the same situations as we in the USA face with regard to being notified early enough of their complete health issues.
Even with years of this happening to me I never thought it would be kept from me and did nothing to research each specific illness. Once I was told I had CKD my desire to research it and its causes kicked into overdrive. I've spoken to all of my doctors and the consensus from them it's really up to the individual doctor to take the time and openly discuss all issues with their patients. Sadly, this does not occur with the frequency it should.
Mr.Kidney - My friend- I did NOT know you had type 2 diabetes. Since when did you quit medicine and since when do you have CKD ?
what was your last A1c ? how did you manage to quit medicine?
I am T2 also - for 23 yaers. My A1C between 6.4 and 6.8 last 3 or 4 times. I am learning - trying to prevent any feature kidney problems. I am 73 yrs young. have had retinopathy.
My eGFR some havw inceraed last blood test - 3 weeks ago- It was 103 as compared to 93 - 3 months ago.
Besdies LCHF diet - what else can be done.
Hi, I did not quit medicine. I have worked hard, controlled my "bad" habits, exercised daily and was determined to not have diabetes control my life. It took me 16 years. In June of 2017, my doctor told me I could stop taking my final medication to help control diabetes. (At one time I had been taking four different ones. Slowly, by getting my numbers under control I was told I could stop taking the last pill for T2D I was taking). I got a second opinion on that because while that was my goal all along the fact that I succeeded was nothing short of miraculous. At that time my A1c was 5.5.
Since then my A1c's have been 5.4, 5.3, 5.4 and just in June 5.3 again. I'm due again in late September for another one. I don't expect it to be much different. Also, in June of '17, I had lost 140+ pounds on a diet that was developed by a nutritionist. Also, at that time I was told that I was at Stage 3 CKD. I bike, hike and exercise every day. No set mileage or time. Weather permitting, I walk or bike on local trails, if the weather is not cooperative, I go to the local (wherever I happen to be since I travel around quite a bit) senior center or similar place and work indoors for a period of time. I take Saturday off during the most of the year and when I'm traveling I take off on travel days.
Since finding out I had CKD I haven't been able to lose much more weight But it doesn't change my routines for exercise. What has changed is that I have had to switch from the nutritionist recommended diet to a Renal Dietitian meal plan based on my numbers. I don't cheat as that would be counter-productive to my hoped-for end result, staying off dialysis for as long as possible.
Thats great- commandable. A1c under 6 - you do nOT need any medication.
I am still taking metfornin 1000 mg ER - two tiems and Glipiride- 2mg one time
How did you develope CKD ? sorry for that
Sixteen years of T2D and as many years with high blood pressure without accompanying symptoms (just higher than normal numbers) is what my doctors believe were the major underlying causes of my CKD diagnosis.
Mr. Kidney,
Did you have surgery to help you lose weight or did you do it all on diet and exercise alone. Congratulations of getting off the T2D meds. That is my goal also.
All diet and exercise. It was suggested that I consider a gastric sleeve. I watched the video and that was my motivation to do it on my own. Even though I knew it would be difficult I nevertheless felt I had no real options. I've kept it off and lost an additional 16 pounds since finding out I had CKD.
Your success with weight loss is inspiring. I have lost 203 lbs in 5 years with several periods of slacking off. I could have reached my goal a long time ago if I had had your determination. In May, I had a massive piece of pannus (lower belly area) removed that hung past my knees. It weighed 48 lbs. Another 9 lbs from the area not hanging down. All dead fat tissue. I was very determined while home health therapies in place. Since then I have slacked off and can tell the difference. I share all this to say. Despite all this I am truly blessed to have all this and posts like yours give me back that drive. Many of you have shared that it is up to each person to learn, decide on your own best path and go forward. Thank you and the others for sharing your knowledge and insight.
Alot of hard work and taking care of yourself has been wonderful!
Kudos and support as the journey is not an easy one but a new road can be followed.
👍