Living with chronic kidney disease (CKD), like many chronic illnesses, can greatly impact your physical, mental, financial, and social well-being.
However, people living with CKD don’t have to manage this condition alone. If you have a CKD diagnosis, there are professional organizations, support groups, financial assistance programs, and other resources that can help.
In this article, we’ll discuss the daily impact of living with CKD and how you can find support in managing your condition.
Chronic kidney disease (CKD) is a condition in which the nephrons of the kidneys lose their ability to function over time. The nephrons in your kidneys are responsible for filtering and removing waste from your bloodstream.
An underlying condition that damages the nephrons can be the cause of CKD. High blood pressure and diabetes are the most common causes, but other conditions, such as autoimmune diseases and genetic disorders, can also cause CKD.
Proper treatment and management of CKD can be critical in slowing the progression of kidney damage to delay or prevent the onset of end stage renal disease (ESRD).
ESRD occurs when the kidneys are damaged to a level where they are no longer able to remove enough waste from your blood. At this point, either dialysis or kidney transplantation become necessary treatments for you to live.
Managing a chronic illness such as CKD can affect many areas of your life. These can include physical and mental health, as well as your social and financial well-being.
CKD is a chronic condition that can cause a wide variety of symptoms. Depending on the severity of your condition, some of the physical symptoms may include:
- increased need to urinate, especially at night
- blood in the urine
- swollen ankles, hands, or feet (edema)
- muscle cramping
- dry, itchy skin
- poor appetite
- weight loss
- shortness of breath
When CKD is caused by an underlying condition, such as diabetes, that condition may cause additional symptoms. These may vary depending on the condition and treatment.
According to the National Institute on Mental Health, people who live with chronic illnesses have an increased risk of conditions like depression and anxiety. These can add another layer of symptoms.
Living with CKD can cause feelings of isolation and loneliness, especially if you feel like your situation is not fully understood by others. You may also feel a lack of hope or even depression about what your future may look like.
Conditions like CKD can also cause an increase in stress, which may lead to other related mental health conditions. For example, people with chronic illnesses may experience stress-induced anxiety when coordinating multiple healthcare appointments, scheduling treatments, refilling medications, and more.
Building a good support system is important when living with a chronic illness. Unfortunately, this can also place a strain on personal relationships at times.
Those caretaking for people with CKD, especially family members, may have a difficult time watching their loved ones struggle with their physical or mental health.
Family and friends who are heavily involved in caretaking may even experience something called compassion fatigue. This type of fatigue can be especially painful for spouses or partners who play the role of caretaker.
In addition, even when family and friends want to be supportive, they often can’t fully understand what someone with CKD is going through. Not feeling understood — and not being able to fully understand — can put a strain on both sides of a relationship.
Managing a chronic illness like CKD can also cause increased financial strain over time. Even with insurance coverage, there may still be out-of-pocket costs for services, such as:
- doctor’ appointments
- specialists’ appointments
- testing, such as blood work and imaging
- medications, including prescription and over-the-counter drugs
- procedures, such as dialysis
- hospital stays and surgeries, such as kidney transplantation
Many people living with severe chronic illnesses are not able to work, limiting income. Even if you qualify for Social Security Disability Insurance, it can take months for an application to be reviewed and approved, placing a huge strain on finances.
If you find that you have no choice but to continue working, it can be incredibly difficult to find a job that will let you schedule appointments, tests, and other medical obligations. It also can be difficult to find the mental or physical energy to work while managing CKD.
If you are living with CKD, you are not alone. Accordingly to the National Kidney Foundation (NKF), 37 million adults in the United States have some form of chronic kidney disease.
Fortunately, there are organizations dedicated to providing resources, such as financial assistance and support groups, for those with CKD.
Peer support groups
Peer support groups can help people with CKD find ways to manage their condition. When you join a peer support group, you can connect with other people who understand what you’re going through.
These groups provide an important emotional support system that can help you adjust to living with a chronic illness.
Support groups are also helpful when it comes to sharing resources for medications, dialysis, transplants, and other treatment options.
Family support groups
There are also groups that offer support for family and friends of people living with CKD and other chronic diseases. Many peer support groups allow family and friends to attend as well.
When you join a family support group, you’ll connect with other people who have loved ones with CKD. These groups provide important education about the condition, including how to best support a family member or friend.
These groups may also share financial and medical resources that can be helpful for caretakers.
If you don’t have the income to cover out-of-pocket costs from your CKD treatments, financial assistance programs can help.
A handful of organizations, such as the American Kidney Fund (AKF), offer financial resources for people living with CKD. These resources include financial programs, such as grants, that can help cover costs for kidney transplant surgeries, prescription drugs, and more.
In addition to these resources, chronic disease case managers can help people living with chronic illnesses manage their long-term care needs. Research suggests that having a chronic disease manager can improve the overall care your receive if you’re with complex healthcare needs.
Related disease foundations
The NKF was formed in the 1950s to provide resources, news, and other support for people with kidney diseases.
In addition to the NKF, you can also find foundations that offer local resources in most cities or states. There are also groups that focus specifically on underlying diseases that cause CKD, such as polycystic kidney disease or Alport syndrome.
Each of these foundations can be helpful in finding support groups, financial assistance programs, clinical research trials, and much more.
Resources for CKD support
If you’re living with CKD and would benefit from additional support in managing your condition, here are some resources that may be helpful:
- Financial grants. The AKF offers a list of grant programs available to help pay for treatment costs associated with CKD.
- Local CKD support. The American Association of Kidney Patients offers a list of renal support groups by state.
- Mental health support. National Alliance on Mental Illness offers a list of helplines and other resources for people struggling with mental health conditions.
- Other kidney-related foundations. The NKF offers a list of other organizations related to kidney diseases.
It can be very difficult to navigate the long-term treatment and management of a chronic illness like CKD.
Know that you’re not alone, and there is help available if you’re living with this condition.
From support groups to financial assistance programs, there are resources to help you manage the many daily challenges. Reach out to learn more about how you can get help living with CKD.