End-Stage Renal Disease & Lung Manifestations
End-stage renal disease (ESRD) is when your kidneys permanently stop working and require long-term dialysis or a kidney transplant to maintain life. While ESRD is rare in TSC, chronic kidney disease is not.
Chronic kidney disease takes several decades to decline to the point of ESRD. Those with TSC and polycystic kidney disease (PKD) are at a much higher risk of kidney failure over their lifespan. Proper kidney care is essential to preserve renal function. Great ways to proactively protect your kidneys include: careful blood pressure management, prevention of protein in the urine (proteinuria) and a healthy diet. Over time, interventions like reoccurring embolization, nephrectomies, renal hemorrhages, and acute illnesses can take a toll on the kidney’s function. If you find yourself in a situation and your healthcare provider starts to discuss dialysis or renal transplant in your future, the Kidney Foundation or PKD Foundation has excellent resources to help you make more informed decisions.
Individuals with TSC are at a higher risk of developing lymphangioleiomyomatosis (LAM). LAM is a rare lung disease that affects women more often than men, usually between the onset of puberty and menopause. It can cause shortness of breath or other complications. Treatments for LAM can include medication, oxygen therapy, or lung transplantation in very advanced disease
The LAM Foundation has excellent resources and support for those looking for additional information on LAM.
If you need additional support or to discuss options that TSC Support Navigators are available.