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Just diagnosed with Chronic Kidney Disease


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  • Just diagnosed with Chronic Kidney Disease

    I was just officially diagnosed with chronic kidney disease (CKD) at stage 3. I'm a bit shocked, since every time I have had a procedure, the hospital staff informed me that my creatine level is a bit high, but nothing else is mentioned.

    My creatine level has been steadily rising over the past several months. Is there a relationship between HOCM and CKD?

    Are there any other CKD HOCM'ers out there? Now I get to learn the lingo of the nephrologist to boot. A whole new world.

    HOCM was quite enough I thought.

    Thanks in advance for any info you can provide.
    Rick W.

    Diagnosed with HOCM April of 2006
    Myectomy September 11,2008 Cleveland Clinic
    Dual chamber ICD implanted 12/23/09

  • #2
    Re: Just diagnosed with Chronic Kidney Disease

    I don't know if there is a relationship but I was diagnosed with hocm over 10 years ago and about 4 years ago I had acute renal failure. I now have severe chronic kidney disease with only a little over 20% kidney function and trying to remain off of dialysis. I hope you get some answers because I have become very symptomatic of my hocm and can't walk much any more. My doctor wants me to have a septal alcohol ablation but I think that would do my kidneys in and I think a regular myectomy with bad kidneys would do me in period. So I have no idea what to do. I have a consultation with a cardiologist in my area that has done quite a few of these around here (asa) but the dye used is nephrotoxic so I just don't know what to do. I am very untrusting of doctors. Hope you get some info soon. I can tell you that the 2 illnesses together are very difficult to treat. What helps one, harms the other and vice versa.


    • #3
      Re: Just diagnosed with Chronic Kidney Disease

      You both have my sympathies. I find it frustrating to deal with one disease, having two chronic issues must be very taxing emotionally.


      God Squad co-moderator
      Nothing is as gentle as strength and nothing is as strong as gentleness


      • #4
        Re: Just diagnosed with Chronic Kidney Disease

        BTW Rick, do you have a nephrologist? That is a doctor that treats kidney disease. Do you know what kidney disease you have? Because there are several. You need to see if there is anything you can do to maintain what function you have left, eat a certain diet etc. I have maintained my 20% function for several years now which is a miracle in itself but you need to avoid alot of protein etc and try to preserve what you have left. If you are using alot of aspirin etc you need to stop. I don't know if you have seen a nephrologist but please see one pronto to see how you can help yourself.


        • #5
          Re: Just diagnosed with Chronic Kidney Disease

          I have no words other than I am very sorry to hear this for both of you.
          49 yrs. old
          Diagnosed at 31.
          Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
          First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
          Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
          Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
          My brother passed away suddenly at 34 yrs old from HCM.
          2 teenage children, ages 17 and 15.


          • #6
            Re: Just diagnosed with Chronic Kidney Disease

            Of course, I have to qualify that my family are in the 3-5% of HCMers who go to burn-out/end stage as well as don't have obstruction. So, we are different than you but I wanted to provide some info. that might be useful. Yes, I found out my mother this year had 3rd stage kidney disease but she's had diabetes Type 2 for 5 years. But, we knew about the diabetes diagnosis. I wonder if my mom got diabetes because she was hardly walking much anymore due to her weakening heart.
            I was also shocked that my father and sister who goes with my mom to her appts. were never told; I found out by reviewing my mom's medical records this year after my diagnosis of HCM and end stage. I have to say I was angry and upset and ironically told my sister (shortly before my mother's hemorrhage) who goes with my mom that I felt it was a matter of life and death for her to help my mother get to "the bottom" of this issue; I felt that my parents would listen to her more than me. I also discussed this with my father. Both my parents like to listen to doctors but not question them. So, I wanted for her to be an advocate for my mother.
            My mother had hemorrhaged in March of this year in her stomach and lost 5 pints of blood. She never recovered because I think the blood transfusions brought too much blood volume back too fast such that her weak heart couldn't manage the change or increase in blood volume. I did some research after my mom died and found out that kidney disease could have contributed to her hemorrhage and that the fact that she was on coumadin put her at increased risk. In addition, her records consistently showed her blood was too thin. However, I'm not a doctor and I was only trying to find out what caused her hemorrhage. But, what I deduced from my research was that anyone taking coumadin might need to have it monitored more carefully when having CKD.
            I'm sorry and hope that with this knowledge of your CKD you can face this challenge better.
            Last edited by lj; 10-10-2010, 02:30 AM.
            HCM & diastolic/systolic HF (burn-out HCM) DX in 2010
            Brother 34, sister 45, & mother 73 passed away from HCM burn-out/CHF/DCM
            Sister @ 41 got heart transplant on Valentine's day 2002
            Oldest sister, diagnosed with HCM in 2010
            only niece cleared by genetic testing; son not genetically tested yet
            Suspected HCM in maternal grandmother (d. 39), 2nd cousin (d. 33),
            maternal grand aunt (d. 51), & maternal great grandmother (d. 50s); with hrt. conditions/hrt. surgery/kidney d.


            • #7
              Re: Just diagnosed with Chronic Kidney Disease

              Two years ago prior to my HCM diagnosis I had kidney stents put in both kidneys due to my high creatine levels and blockage due to stones in both kidneys. I was told I was in early stages of possible renal failure and seeing a nephrologist. The specialist could not figure what was cauing my problems but everything leveled off to normal and a year later I am diagnosed with HCM. Cause and effect, no clue but I go for a Glofil test next week as part of my Transplant evalaution. Three weeks ago in the hosptial my creatnine levels were above normal the hospital blew it off. I knew it was not a good sign. Just kept my mouth shut getting tired of this crap.
              Last edited by Bob in Texas; 10-10-2010, 02:25 PM.
              Diagnosed HCM 03-2009
              6-2009 Evaluated at Tuft's ICD/Pacer implanted/diagnosed with DD and severe scarring/no obstruction
              8-2009 Evaluated at the Cleveland Clinic/Myectomy recommended/gradient w/Armyl Nitrate
              10-2009 Myectomy CCF
              11-2010 Approved for Transplant Listing

              "I no longer live but exist" Bob in Texas.......


              • #8
                Re: Just diagnosed with Chronic Kidney Disease

                I am also in third stage kidney disease and have been for several years. In fact, the main precaution I take are IV fluids and special pre-medications when I get my pancreatic CTs. The risk from contrast dyes is fairly significant, so my surgeon and I decided to pass on the CTs at least for awhile. The good news is that few people in third stage kidney disease apparently progress on to 4th or 5th stage. In fact my levels had dropped from the middle of the 3rd stage to almost the very bottom of that stage a few months ago, so suddenly all my docs got very alarmed. After thinking things over, I undertook to see if I could reverse this by myself. I cut the amount of diuretics I was taking for CHF in half by only taking them every other day. Once a week or so I substitute a couple of hours in bed after taking that day's dose. Since, when the fluid levels are high, I have to get up a couple of hours early to go to the bathroom, I just take the diuretics (spironolactone and furosemide) then and resign myself to getting up every 15 to 30 minutes. A nuisance, yes, but an extremely successful nuisance, because a month later my kidney function had gone back to the mid-range of the third level and all the docs relaxed again. So, moral of the story, if you are on diuretics for CHF, be aware that they wield a two edged sword. They are needed for CHF and also sometimes for kidney failure, but they also increase kidney failure.

                I don't know whether you are on diuretics, but if you are, keep this in mind.
                Last edited by Laoshur; 10-11-2010, 08:19 PM. Reason: Add my name


                • #9
                  Re: Just diagnosed with Chronic Kidney Disease

                  I am new to this forum [not sure how soon I till I can stop adding the phrase]. However, I have been doing a whole lot of reading and it certainly validates what I have been through I have HTN, CKD Stage IIIB, Type II Diabetes [very well controlled with diet alone], and asthma. The HCM turned acute in August 2014, and I wound up in the hospital with CHF in early September. The dieuretics did the trick and got me out of the hospital in three days. The follow up with the nephrologist has been fascinating....once the Stage IIIB CKD was focused upon, we did a battery of blood work and a kidney biopsy. The kidney biopsy didn't show anything spectacular but importantly did provide a baseline that I understand would be very important.

                  The next step in my HCM treatment was to schedule an angiogram and potentially an alcohol septal abalation. Unfortunately, due to family history, my father was killed by the dye from his pre-mitral valve replacement causing the onset of end stage renal failure. Approximately four months into dialysis he developed calciphalaxis and elected to voluntarily terminate his dialysis due to the complications of the calciphalaxis. Obviously, for a patient in end stage renal failure, the decision to terminate dialysis is a death sentence.

                  As a consequence, I did extensive research and had a long consultation with the nephrologist regarding the impact of contrast induced nephropathy from angiograms. The nephrologist was able to order a pre-procedure hydration and they administered IV sodium bicarbonate in advance of the procedure. [This is quite different from the administration of N-acetylcysteine There is an excellent article on kidney protection during angiogram here. A second excellent article on Radiocontrast induced nephropathy is http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3364502/

                  The angiogram and an unsuccsessful attempt at an alcohol septal abalation was terminated. The follow up decision has been to schedule a septal myectomy for mid-November. The current topic that has grabbed my attention as a complicating factor with the myectomy is the risk of acute kidney injury ["AKI"] due to bypass during the myectomy. After yet another discussion, the active involvement of the NMH inpatient nephrology team has been added to the myectomy process. We shall see how all of this progresses.