Kidney Disease

Carol passed away on May 20, 2000 from the degenerative effects of Idiopathic Dilated Cardiomyopathy. In short, this is when the heart muscle weakens and dies from causes undetermined or unknown (idiopathic). Her doctor and we felt the cause was due to a viral infection after contracting the flu in February 1998. Although the direct cause of her death was IDC, her immune system was weakened by the loss of kidney function, known as end stage renal disease (ESRD), increasing her receptivity to other disease. Thus the IDC was indirectly caused by her ESRD.

Carol's specific disease was Polycystic Kidney Disease (PKD) which is the most common genetic disease in the US. Those suffering from this disease will see a progressive loss of kidney function over time as the body forms cysts on and in the kidneys. These cysts will displace kidney tissue which results in loss of function. The remaining tissue will enlarge in the body's natural attempt to offset the lost function. This results, along with the ever growing number of cysts, to cause a distortion and swelling of the patients abdominal area as these organs grow in mass.

Below I will organize a number of links related to ESRD, it's causes, treatments and management. Though this is not an exhaustive listing, there are millions of web pages related to kidney disease, these are some of the better sites I discovered in my research. This a field where research is constantly discovering new and better understanding and treatment of this disease, so let this be a starting place only. In time I will add a page on IDC

A great source of information, news and support is the American Kidney Fund (AKF). This organization is at the forefront in providing financial aid, education, research and community service programs for patients and families of patients at risk of kidney disease. The AKF has received several top ratings for charities including from Readers Digest and Charity Navigator.

Another source of support for kidney patients and families is the National Kidney Foundation of Florida

An issue of concern to recently diagnosed ESRD patients and their families is that of expense. Medical management of kidney failure, like all medical procedures, continues of escalate in cost and is beyond the ability of most families to absorb.

The most recent available statistics show the average annual cost of hemodialysis (HD) is currently about $63,340 per year while that of Peritoneal Dialysis (PD) to be $45,420.
These costs are for the dialysis only and do not include professional care services, additional prescription medications etc.

On the other hand, average transplantation cost are $116,100 (1999 figures) with on going cost of more than $20,000 per year for immunosuppressive medications to prevent rejection of the donor organ.
Because of these costs, Medicare began covering the care and treatment of ESRD in 1972, making it an entitlement. This means that the coverage of treatment for ESRD patients is automatic following application. A patient's medical care provider will assist in completing the necessary forms and submitting them for Medicare processing.

The way this work is Medicare pays for 80% of the costs associated with ESRD care. If a patient has other private or group coverage, that coverage will be primary for the initial 12-18 months and Medicare secondary. After that, Medicare becomes the primary insurer. For those with no other coverage than Medicare, the cost not covered can become a heavy burden, that is where the foundations mentioned above, the AKF and NKF come into play, assisting in the coverage of these costs

Transplantation presents another challenge. While the costs associated with the transplant itself as covered by Medicare as mentioned above, currently the immunosuppressive medications are covered for only the first 36 months in all but a few cases where coverage is extended for life. There is legislation currently in Congress (HR588 and S178) to extend these benefits to lifetime coverage under Medicare. To check the current status of this bill you can query the Library of Congress' Thomas Legislative Information Site.

Until the time that legislation should be made law, the patient's personal or group insurance plan will be the primary insurer and/or assistance from the AKF and NKF may be sought.