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HCM and kidney disease

Posted by nrshields @nrshields, Jun 3 9:05pm

Does anybody have HOCM and kidney disease? My local doctor says HCM surgery may be risky.

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walkinggirl | @walkinggirl | Jun 4 4:13pm

Hello @nrsheilds,

Kidney disease did not stop me from having a septal myectomy at age 75 almost 3 years ago. Keep in mind that all surgery is risky, going to a Center of Excellence (CEO) means that the people caring for patients have seen all kinds of complicated situations and the record is extremely favorable for a good outcome. An evaluation once you are referred - my cardiologist sent all of my information for Mayo to evaluate - will determine the next step.

I have both HOCM and stage 3a kidney disease. I sincerely believe the kidney disease is a result of untreated HOCM - my kidneys were probably not receiving the necessary blood and oxygen to sustain optimum function. Doctors shrug their shoulders when I ask the question if the HCM is the cause of my kidney disease, it began around the time I was diagnosed with HCM. I am "ordered" to drink about 64 oz of water a day to keep them flushed. I never would have known that I had kidney disease if it wasn't for the periodic bloodwork done twice a year. As HCM became worse, so did the kidney disease, as measured by the testing panel numbers. As time went on after surgery, the numbers improved greatly, only one is and will always be out of the normal range. Just like I will always have HCM, I will always have kidney disease. Is it your cardiologist well-informed in HCM? My home cardiologist couldn't wait till I went to Mayo for surgery!

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nrshields | @nrshields | Jun 4 4:49pm
In reply to @walkinggirl "Hello @nrsheilds, Kidney disease did not stop me from having a septal myectomy at age 75..." + (show)
@walkinggirl

Hello @nrsheilds,

Kidney disease did not stop me from having a septal myectomy at age 75 almost 3 years ago. Keep in mind that all surgery is risky, going to a Center of Excellence (CEO) means that the people caring for patients have seen all kinds of complicated situations and the record is extremely favorable for a good outcome. An evaluation once you are referred - my cardiologist sent all of my information for Mayo to evaluate - will determine the next step.

I have both HOCM and stage 3a kidney disease. I sincerely believe the kidney disease is a result of untreated HOCM - my kidneys were probably not receiving the necessary blood and oxygen to sustain optimum function. Doctors shrug their shoulders when I ask the question if the HCM is the cause of my kidney disease, it began around the time I was diagnosed with HCM. I am "ordered" to drink about 64 oz of water a day to keep them flushed. I never would have known that I had kidney disease if it wasn't for the periodic bloodwork done twice a year. As HCM became worse, so did the kidney disease, as measured by the testing panel numbers. As time went on after surgery, the numbers improved greatly, only one is and will always be out of the normal range. Just like I will always have HCM, I will always have kidney disease. Is it your cardiologist well-informed in HCM? My home cardiologist couldn't wait till I went to Mayo for surgery!

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Thank you so much for this information! My husband has stage 4 kidney disease. His eGFR is 20. I suspect it’s due to the HCM as well. He just started Camzyos 7 days ago. I also agree with going to a COE and plan to find a doctor at Mayo for the HOCM.

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