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.

0 Online

creatinine levels

Just curious. My creatinine level has now gone to 1.9. My doctor doesn't seem real concerned about it. 6 months ago it was 1.5 and 3 months before that it was 1.7. Just wondering when your doctors seemed to get concerned for dialysis and transplant with your levels.



It is a little hard to define "normal" creatinine levels because age, weight, sex and muscle mass will make a difference in what level is healthy for you.

Doctors look mostly at trends over time and it does appear that your creatinine is trending updards. With that said, people can stay at the same level for years and years. Keeping blood pressure in check and eating a healthy diet and getting plenty of exercise can all be helpful in stabilizing your function. but of course, PKD can run its course anyway.

My doctor told me that for me (a woman in my 40's) my function would be at about 50% at 2.0, 25% at 3.0 and 12.5 % at 4.0 and 6.25% at 5.0 etc. Meaning that function decreases by half each time the creatinine level goes up another point. My creatinine is currently 4.0 and I am still doing okay though I am quite tired and worked up for transplant when it comes along.

So...get all the information you can, try to be healthy and don't over-worry. You could be a very very long way from transplant if all goes well!

I forgot to add that you can get listed for transplant when your function is below 20%. Decision to go on dialysis is based on your symptoms as well as your labs. I am at 12% and I do not have uremia or other dangerous levels of toxins in my blood but I am planning on starting dialysis in the hope that it will give me more energy. I am also hoping to have a transplant soon from a live donor.

Thank you! I am 43 and when I asked my doctor if I should be concerned that it had gone up he just said everything else looks okay so we will see you back in 4 months. Just got me a little concerned that he wasn't more concerned.

Hi, lathomas!

Yes. You feel like you are ready to fall apart. Your doctor has seen all this before and to you he seems uncincerned!

That's the way it is with many doctors!

There's a line you will learn to walk that's a balance between being so sensitive to your body and its changes, and putting ALL your trust in your doctor's assessment.

Neither extreme seems to be helpful. He sees you for a few minutes every few months, and you live in your body 24/7!

You will now if something happens that would necessitate contacting your doctor.

So, consider giving yourself a daily "once over" about how you feel. You will begin to internally set "benchmarks" for yourself.

If you happen to experience a symptom that seems a bit beyond the "normal" range of your "benchmarks', then consider contacting the doctor!

Hope you don't mind the sharing!

Peace and Blessings!

Thanks for all your help. I'm sure as I walk through this journey I'm going to ask many more questions. I have many family members that have experienced this disease but since my mom passed away not anyone close enough to talk to. Thanks again!

creatinine of 1.9 really isn't anything to get upset about, from a medical standpoint. most people aren't ready for dialysis till their creatinine is over 6 so you have a long way to go.
it may be years before your kidneys fail, but till then do all you can to keep your kidneys healthy, plenty of water, low sodium, a healthy diet, no "bad" things like alcohol, smoking and drugs, even aspirin is a no-no because it is processed through the kidneys. Tylenol is a much better choice and only when necessary.

Here is a link to the National Kidney Foundations eGFR calculator. It's pretty simple, just plug in your serum creatinine, your age, gender and if your African American or All Other Races. It automatically does the calculation for you and tells you where your renal function is. Take into account that if you have a higher muscle mass than the typical female, your function is probably slightly better than what's stated.


Now with that said, here's my take on the situation. Creatinine levels are very accurate in depicting your actual renal function. However, your number is only one source of information for you and your doctors to consider. How you feel is just as important.

For dialysis, the lower the function prior to initializing hemo dialysis therapy, the better. That means that if you can hang in there until your function is less than 15%, you have a much better outcome, long term, on hemo dialysis. (there are studies that have proved this).

But for transplant it's a different story. Most transplant centers will evaluate a patient for potential transplant once their function drops below 30%. You won't be eligible to be placed on the list or even have a live donor transplant until your function gets to 20%, but you can be evaluated prior to that. (of course this depends on your insurance coverage). They prefer that you have a live donor transplant between 15 and 20% function because most PKD patients, especially the younger ones, are relatively healthy other than the renal failure. If you drop below 15% prior to a transplant, they may want you to have a couple of sessions of dialysis prior to a scheduled surgery, just to make sure you're in peak condition for the operation. If you drop to less than 15% and are on the waiting list, you will probably require renal replacement therapy, at some point, until a match comes available. Of course this all depends on how you feel.

I am 42 years old. My creatinine is only 2.4 but my function is only 22-23%. My transplant center told me that when my creatinine reached 2.6 to let them know immediately so that they could list me and we could start the work up on my live donors. They anticipate that I will be at that level by summer (although there's really no way of knowing for sure). For transplant, they would never want me to wait until my creatinine reached 6.0. BUT for dialysis they would as long as I was tolerating my renal failure well. Some people do. Some people, while they may feel like crap, have no other significant issues with a creatinine that high, but there are some that feel bad AND have bad labs with a creatinine of 4.0. It can be very different from person to person.

Does that make sense? I hope so cause I don't want to confuse you any more than you probably already are. If your neph is wanting to see you every three to four months, that's a good thing. That means that he is looking at your labs frequently and will be in a good position to refer you to transplant evaluation (if that's what you want) as soon as you are eligible.

I hope this helped. Glad you're here. Keep up the questions, someone on here is always willing to help out with an answer.

Thanks! I definately want to get a transplant if I check out okay for everything. This site has helped me so much. It helps to have people to talk to that understand.
Posts You May Be Interested In:
  • nana012

    I have cancer

    I had to have a lung biopsy, and I have cancer. A very rare form that doesn't have any standard treatment. There just isn't a lot of case history for this. It is epithelioid hemangio endothelioma. The cancer support group doesn't talk every day. I can understand why. I'm waiting for the oncologist to call back for an appointment, and will hear in the next few days. Who knew. Ha!
  • ainteasybeineazy

    It's my Birthday and no one cares

    Today is my 25th birthday, to my somewhat lack of surprise I can see already no one really seems to care. I've always been the kinda person to make sure that everyone I Care about feels appreciated and knew somebody had their back. I can count 4 times this year when I Went out of my way to make sure a "friend" felt good on their birthday, especially if they got left hanging. Its early in the...