First of all I am 59 years old. I was born with 1 kidney and have had kidney disease of the right kidney for probably 7 years or so.
My kidney doctor feels that the kidney was failing me because of hypertension that went on for years.
One note I was diagnosed with diabetes in 2003. My doctor didnt think that the kidney disease at this point was due to my diabetes. He felt it would take years for the kidney to be affected by diabetes. But felt eventually it may catch up and the dieabetes would have an impact on my 1 kidney.
My creatine level has usually been running steady at 2.0; 2.1. that was where it generally ran.
But in January 2013 the creatinine elevated to 2.45. Plus there were other numbers that were elevated. I dont have the blood work in front of me but can get and post later on. But I think one of the rations maybe the protine ratio if I am correct also showed a big increase,
This concerned my nephrologist. I have been on Ramipril to protect the kidney.
Then the other day my diabetes doctor found something in his lab work that really bother him. First the creatine level went up even further to 2,81. And my potassium which was running high. went up even higher. In january it was 5.3 then with the diabetes doc it was 5,9. that is way to high. Usually antying 6.0 or higher is dangerous from what i was told It was felt that there was a progression of the disease which may be a factor and the Ramipril can increase the potassum levels as well. So we stopped the Ramipril. WE will redo the blood work in 3 weeks to see if there are any changes.
Also my diabets doc has noted that my blood pressure has been higher laterly as well. Putting things together it appears that the kidney disease MAY be progressiong. But waiting for further blood work.
At what point does dialysis begin? If the creatine is still under 3 is that too sone to start dialsysis? At what point is transplantation discussed?
I am really worried with several things now shwoing signs of having progressed.
Any input would be appreciated. Thanks for any inforamtion and input.
Dialysis starts at different points for different people. This is due to several factors. Part of it is how you feel (which is affected by how fast your progression was). If you progress fast, you will probably feel poorly sooner and want the treatment sooner. If the progression is slow, you body will have time to adjust. This is what happened to me and I waited too long to go on (creatinine was over 10). My local clinic starts teaching dialysis/transplant options when the cr. gets to about 4. This typically leaves plenty of time to plan.
Another factor is fluid retention. If you kidneys are not removing fluid you run the risk of fluid around the heart and lungs, and not just in the ankles. Again, this happens much later than the stage you are at now.
A third factor is potassium. If this aspect of the kidney function fails first (different things are affected at different points in different people - I got anemic early but didn't lose a lot of protein) then you might want to start here as well.
Kidney function decline is not a straight line process. You may go through a phase where things decline quickly, and then stabilize. Getting your bp under control will definitely help.
While I'm not a doc, in my experience (with friends from support group) I would say you are still several years away at least from dialysis. If you get sick with something, this may change significantly. If things stabilize for you, it might take you 10 years to get to that point. In the meantime, I would investigate the different modes (I always preferred peritoneal dialysis as it's easier on the body and you can travel and live your life better). It's not as popular in the US as in Canada, but a lot of that may have to do with how much money is made. Knowledge is power and if you know all about this, you won't be quite so scared. Dialysis is not fun, but it's doable. I actually went to Disneyworld while on hemodialysis. All things are possible.
Feel free to ask lots of questions if I missed something.
As to my kidney function I've been told that my kidney has been functioning at about 30% and that seems to be fairly consistent over the years.
As I stated in my first post I did not have the blood lab report in front of me. All that I stated was that on my appointment with my nephroloigst was that my creatinine level had elevated to 2.45. This was up from about 2.0 the time before. And the 2,0 while there was some fluctuation it was neverl anything drastic.
Then within about 3 weeks or so my creatine was elevated again to 2.81 per my diabetes doctor. I have his report as well.
When I saw my nephrologist he was concerned. In the years that I have been seeing him this is the first time that I can recall that our conversation was about his concerns.
Here are some of the results as per the lab work:
Here are the results from January of 2012: I am only putting in the results that are noted as HIGH; etc.
- Glucose Serum 119 normal 65-99
- BUN 43 normal 6-24
- Cratinine, Serum 1.91 normal 0.76-1.27
- egfr non african 38 low >59
- egfr african am 44 low >59
- BUN/Creatinine Ratio: 23 high normal 9-20
- microalbumin, urine 756.2 high normal 0.0 to 17.0
- microalbumin/creatine ration 1231.6 high normal 0.0-30.0
Here are the results from 12/20/12:
-- Glucose serum 84 (compared to 119 last time)
-- BUN 45 not much of a change from last time
-- Creatinine serum 2.45 (1.91 last time)
-- egfr 28 (last time 38)
-- egft 32 (last time 44)
-- Potassium 5.3 (4.9 last time)
NOW FROM DIABETES REPORT 5.9 report 1/17/2013
-- protein urine 136.4 (last time 756
-- protein/creatinine ratio 2608 (last time 1231. BIG CHANGE)
Based on the above especially the creatinine my nephrologist was concrned. He felt going from 1.91 to 2.45 and now 2.81 those are big changes. and the protein/creatinine ration was up.
But looking at the diabetse doctors lab work the microalbumin ruine was 233 and the microalbumin/creatinine ratio was 330. Not sure why it ws 1231 & 2608 in the kidney doctors report.
A lot of this is new to me as to what it means.
As to dialysis I was in the hospital in 2003. At that time there were major complictions. 1 I was diagnosed with diabetes at the time and my blood sugear was >1500. So mentally I was out of it for a long period of time. But something was going on with the kidney. I do remember one of the few times I did, but they did do dialysis on me. From what I remember i had dialysis 3 times while in the hospital. I know it was several horus long. I'm thinking 3 hours long for each session.
I admit I have been living in fear. Not knowing when things would take a turn for the worse. so when the kidney doctor didnt like what he saw and then the diabetes doctor on top of that I really began to worry.
Since my potassium level is so high I was taken off Ramipril From what I know it is a hypertension medication but is used to protect the kidney as well. But one of the side effects is that it can elevate the potassium level. So my doctor as of today I am off the Ramipril. I am to stay off of it and will redo the blood work in 3 weeks. will then see what changes there are between the diabetes blood work and the blood work in 3 weeks.
Not sure what else to add or to even ask at this point in time. Yes, again I am worried as to what to expect.
I did discuss with my nephrologist long term etc. First he felt my kidney damage was due to the absent left kidney.l He felt it would take a long time for the kidney to be affected by my diabetes. As to when things would get real bad I thought it would take a long time. And so did my doc. I know no one can predict accurately as to when things will go from where I am now to when things get bad. But I have been waiting for the shoe to drop. Not knowing if that is occurring now or now. Yes I am a worrier. My personality I guess. I worry alot and Know it doesnt do myself any good worrying but I do. Sorry I cant help and trying to change that mind set.
Just trying to get thru all this as to what to worry about NOW and what not to worry about.
It sounds like you are doing ok. You are researching, asking questions, getting your labs done, and listening to your docs. As I said, lab wise you still have a long way to go before possibly needing dialysis.
Always make sure that you are well hydrated, especially before labs. Later in theh process you may have to cut back on fluids, but in the meantime, it's good for your kidney to have a good amount of fluid to work with.
Feel free to vent any time you need to. I was pre-dialysis for 20 years and had a lot of experience. I am now 10 years post transplant and can tell you about that process too (after 1 year on dialysis).
As I think I mentioned I was born with 1 kidney. I didn't know this until I was 35. No one knew. My parents were still alive at that point; they didn't have a clue nor did my primary doctor at that point.
I found out by accident. I remember experiencing some medical issue; Didn't know what was wrong. So my primary doctor thought it was kidney stones at the time. After going thru an IVP to test for kidney stones, they found that I had an absent left kidney from birth. I never had kisney issues grwoing up so no one ever thought there was a reason to even check.
So the kdney stones were ruled out. And still didn't know why I was getting sick. I was getting radiating pain to the left side, the side where there was NO kidney. I was nauseaous. And whatever else was going on symptom wise at the time. Then they thought there was a tumor in my back. That was ruled out.
Finally it was determined that all my symptoms were spine related. I had several bulging discs in my lumbar spine.
Strange thing, my sister who is 3 years older then I , several years later went thru some test. Low and behold she too was born with 1 kidney. I was born missing my left kidney and she too was missing the left kidney. Both my parents have passed away since my discovery. But both my parents had been thru their own medical journey that I know both my parents had both their kidneys. What are the odds that 2 children would both be missing a kidney. My sister does not have any kidney issues that we are aware of.
So when I first found out I didn't know what to think. Didn't know what to feel. The IVP test was done at a hospital near where I lived. I was there most of the day. After they couldnt find my left kidney on the initial test they reran part of the test. After being there longer then anficipated and not knowing why they were redoing the test they finally confronted me as to what they didn't find. I was supposed to be in and out of the hospital I think in 2 hours. But I was there for probably 6 horus or more I dont recall exactly.
So when I walked into my parents house, after a while they didnt hear from me after the initial calls to them to let them know what was going on, they were frantic. So when I walked into the house I can imagaine what they thought when they saw the expressiono on my face. I was left thinking Ok I have one kidney what am I supposed to do now?
Everyone kept telling me dont worry you can live with 1 kidnay. And yes you can. But for me there was that fear of what IF something goes wrong with the 1 that I do have. So now I am facing those fears that I had back in 1988.
I certainly cant get a transplant from my sister. but here I am having to face the fears. Somehow after the initial shock of things and I can think straight I will get thru this. I will manage this but for now I am worried.