Have question for older kidney donors like me....

[debbie]

Hello to All.

I have a question regarding creatinine levels & GFR rate for those of you who are more of an 'old timer kidney donor like me'.  I was a kidney donor in 1992...to my sister...My story is in this site (Living Donors Online) listed 3rd from the top in the kidney experience section under Debbie's Story (warning- it is very lengthy)......

Do you have a low GFR?....What has or is your nephrologist or doctor doing about it?...What do you know & understand about this?....

I have done some research, but I would like to know how many of you are also at 3rd stage chronic kidney disease??? And, if so what other medical problems/diseases do you have in addition.

I am a 64 year old woman who is not over weight, and excercises & eats a healthy diet.

My creatnine as of March  2011 is 1.27 & GFR (Glomerular Filtration Rate) is 42. (my doctor's report states Stage 3 Chronic Kidney Disease).  This low rate for me is not new - it has been low for quite some time....

OTHER MEDICAL HISTORY:  I have Celiac disease, aortic valve regurgitation/insufficiency/prolapse disease (moderate to severe stage =diagnosed in 1992 as part of donor workup & have had echocardiograms since then to monitor), Hashimoto's thyroid disease, lymphedema in both arms, & arthritis (back surgery last spring because of arthritis), cholesterol has been lowered with med considerably, & coronary artery disease (seeing cardio on Friday March 18 for results from latest heart test=cardiolite stress test to evaluate progression of disease), blood pressure high & on med to lower it.

Meds: spirano lactone/aldactone (for edema), amlodipine (channel blocker for
blood pressure), levothyroxine (hypothyroid disease), & pravastatin (cholosterol)....

It has been a long time since I have posted in here & I couldn't find my old
password to log in with it, so I had to re-register.  Otherwise I could have noted my older postings...

Please respond with answers to my questions...I would really appreciate your
input....

Thank you very much,
Debbie

ps/I also posted this note in the regular donor message board












     

[Donna Luebke]

I donated in 1994.  Am 53. Have your creatinine and GFR been stable over time? What impacts GFR measurement is your age and is one variable we cannot control.  There are other tests that need done to assess your kidney function.  If your physician is only using the Modification of Diet in Renal Disease (MDRD-GFR) calculation this is but one number and if below 60, should prompt further evaluation.  Have you been referred to a nephrologist?  Changes occur as we age which is why need followed long-term and very carefully monitored to protect our lone kidney/cardiovascular health.

My eGFR is 64 with creatinine of 0.88 which has been stable all these years.  Keep in mind that not all of us are created equal.  You have some health issues here which I do not but 10 years from now, I could. 

Not to tell your physician what to do--but Amlodipine (Norvasc) is probably what is causing your edema.  If this is used for high blood pressure, a drug like an ACE-inhibitor is much better and it has renal or kidney protective properties.  I know donors with low GFRs who are taking ACE-inhibitors for this reason alone without high blood pressure issues.  I am leaning toward this for myself and will discuss with my physician next month. 

Because we have one kidney and if should develop high blood pressure, we need treated to get lower to numbers like 110/60 (the community standard to accept a blood pressure of 130/80 is too high for us.)  If changed from Amlodipine, might not need the Spironolactone as the edema would go away. If edema continues and need something more for blood pressure, there are better water pills to use.  We are different patients with different needs than someone with two kidneys.  The cardiologist you are seeing should be able to trial changes here for you.  Good that you had a stress test--and you are right to be concerned since a low GFR is an independent risk factor for cardiovascular disease. At 64 and one kidney, etc--need aggressive risk factor management.  Are you seeing a cardiologist also for the aortic valve disease?  I take Crestor for my lipids so this is good idea for you to keep your LDL less than 70 (to lower cardiovascular risks).  I, too, have Hashimotos or autoimmune thyroid disease--which is very common.  This is not an issue as long as your labwork (thyroid function) is OK. 


Let us know how you do with your appointments.  Hope all goes well. 

[Donna Luebke]

Debbie,

Reads as though you have your bases covered.  Here are a few articles hot off the press to share with your doctors.  You have not only reduced kidney mass but a concern for hypertensive nephropathy which would be another insult to your kidney function.  These articles talk about the known benefits of ACEI like your Lisinopril not only for BP but kidney protection and the use of sodium bicarbonate to treat tubular acidosis.  Increasing your ACEI dose to treat BP requires being careful in monitoring serum potassium and increased creatinine to be sure do not have renal artery stenosis.  If increasing ACEI causes a cough, can switch to ARB which is angiotensin receptor blocker. Angiotensin is a potent vasoconstrictor which increases pressure in blood vessels. Goal is to block this action and lower blood pressure including pressure within the kidney.  Goal to to protect and preserve kidney function.  Overall, your creatinines have held stable.  One variable that cannot control is age--as we age, our kidney function declines so all the more reason to have an aggressive management plan so if things come up, know what to do.  Great that you have shared your information so the reader can follow you over the years.  I am due for a checkup next Monday so will let you know how goes.  I do not have any family risk factors for cardiovascular disease. Appreciate that my physician is managing my lipid profile in setting of lone kidney.  Need attention to the 'risks'--in order to prevent.  Sounds like you are doing OK here.  There is also a new treatment which ablates the renal artery (we have done this in clinical trials where I work but I do not know all the details) to treat high blood pressure.  If you stay less than 120/80 you are doing great--lower is even better.  

Phisitkul S, Khanna A, Simon J, Broglio K, Sheather S, Rajab MS, Wesson DE. Amelioration of metabolic acidosis in patients with low GFR reduced kidney endothelin production and kidney injury and better preserved GFR.  Kidney International. 2010; 77: 617-623.

Sahni V, Rosa RM, Batlle D. Potential benefits of alkali therapy to prevent GFR loss: time for a palatable ‘solution’ for management of CKD. 2010. Kidney International. 2010; 78: 1065-1067.

Mahan A, Simoni J, Sheather JJ, Broglio KR, Rajab RH, Wesson DE.  Daily oral sodium bicarbonate preserves glomerular filtration rate by slowing its decline in early hypertensive nephropathy.  Kidney International. 2010; 78: 303-309.

De Brito-Ashurst I, Varagunam M, Raftery MJ, Yagoob MM. Bicarbonate supplementation slows progression of CKD and improves nutritional status.  J Am Soc Nephrol. 2009; 20:2075-2084.

I plan to talk with my physician about the role of sodium bicarbonate in the setting of reduced GFR even without ESRD.  Why not take something that might protect my kidney.  My creatinine has been stable at 0.8-1 since 1994.  We'll see how goes.  Other items might include low sodium and low protein diet.  Makes the kidney not have to work so hard--and anything in lifestyle that can be changed like exercise, normal weight, no smoking, etc.  It is OK to see a nephrologist if needed--they are experts in kidney function.  Keep us posted--and I will do the same.

Donna

[Little Sister]

I am 55. I donated to an older sibling when I was 48.  It was the best thing I ever did and I do not regret my decision.   

I just found out that I am in Stage 3 Kidney Failure.  I had no idea anything was wrong.    I am meeting with a renal dietician in a few days.

[Fr Pat]

     I donated a kidney at age 56, and am now 67. My most recent check-up with a kidney specialist here in Japan was 2 months ago. My "estimated glomular filtration rate" ("eGFR") was 49.6, creatinine 1.16 . The specialist's opinion was that, taking into account my over-all health which is excellent, these results presented no problem for me and were MY "normal" having donated a kidney.
     I have read that there is an on-going discussion among doctors as to whether ot not to continue the common practice of automatically classifying someone as having "3rd stage chronic kidny disease" as soon as one or two numbers appear on the test results, without also taking into consideration all the other health results and medical history of THAT patient. As Donna pointed out in an earlier post, we are not all created equal. If I had any other health problems (e.g high blood pressure, etc.) my test results would have been more alarming.
     So, I don't know if my own experience is of any help to you. As my over-all health continues to be very good and I continue to do long-distance running regularly my kidney test results may have a different meaning for me than they would for a person dealing with multiple health challenges.
   best wishes,
      Fr. Pat

[Oldnslow]

It has been a while since I was last checked.   But last time it was still 1.5

They basically said that was my normal and probably woul stay about that.    I've lost about 20 or 22 lbs and am working on losing the next ten.   It would be interesting to see if that had an impact.   BP and all else is still very normal.   Sparred last weekend in a black belt promotion, so still kicking 

Oldnslow