Living with chronic kidney failure is a challenge for you and for your family. The following sections can give you some insight into aspects of living with the changes that may occur in different aspects of your life.
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Travel • Family Impact • Sexuality • Employment • Activity/Social Limits • Sleep • Finances • Appearance • Hospitalizations • Transportation • Time • Clothing • Compliance • Renal Social Worker
TravelYou are encouraged to maintain as independent a lifestyle as possible. This means that you and your family members should continue regular activities, including travel, in order to widen your enjoyment of life.
You can arrange to get your hemodialysis treatment in other facilities when you travel. You will have to start preparing at least several weeks before you want to travel. The social workers will help you to find the dialysis unit closest to where you are going, send the paperwork, and arrange treatment times. You can travel as frequently as you wish.
If you are on peritoneal dialysis the social worker can help you to locate a back-up facility that will help you if you have problems while you are away or run short of supplies.
Insurance Coverage and Travel
Medicare: Pays anywhere in United States and its territories. (An additional coverage, like Medigap, will only pay for what Medicare will allow.) Does not pay for treatments on cruise ships.
Private Insurance: Call your insurance representative to ask about payment for dialysis treatments anywhere (even outside of the US). Many private plans offer payment for dialysis treatments while you travel but you may have to pay first and then get the payment from the insurance company.
Managed Care: Call your insurance company to get authorization. Ask if out of network expenses apply.
Medicaid: (joint state and federal program) The program generally pays only in the same state. Ask your social worker or other designated person for help if you want to travel out of state. It does not pay for treatments on cruise ships.
At the beginning of your treatment you may not be able to remember or understand much of what members of the health care team tell you or give you to read. You may not see how this change in lifestyle will affect many areas of your life.
You are not the only person who will be affected. Your family members will be affected as well. The staff at the treatment center will help you and your family adjust to the changes that need to be made. They will offer suggestions that have worked for others before you. Patience with yourself and others will help you to make your way slowly through the start of a new period in your life that can be as rewarding as the years before it.
Although you are the person receiving treatment, your family members must also adapt to your changing needs. They can help with financial concerns, provide transportation, or receive training to help with medications or the treatment itself if you choose home therapy.
Consumer support groups offer a way to meet and talk with others who have had many of the same experiences. Your facility staff will tell you how to contact these groups and attend meetings. On this Web site, look at the page 'Local Help Groups.'
When you begin treatment most of your focus will be on your illness and what you have to do on a daily basis to feel better. Once the first stages are past, you will want to restore other parts of your life to what they were before the illness.
Intimacy with another person and the physical expression of that intimacy is needed, possibly more now than before the illness. Medications can contribute toward difficulties sometimes encountered. Worry and feelings of inadequacy may affect physical performance.
Talk to your physician about any difficulties you may have. If there is a physical basis, your doctor can help to find it. Your medications can be changed, if needed, or you can decide to try counseling on a regular schedule until progress is achieved.
Counseling can be arranged outside the dialysis unit if you prefer; the social worker will help you find an agency that will be able to help. There are agencies that use a sliding scale fee schedule so that payment is within reasonable ability to pay.
You are encouraged to return to as much of your regular activities as you are able to accomplish. After a time of adjustment, returning to work is very possible. Work gives a sense of personal accomplishment that we need and empowers us with a sense of control over our lives.
You can let dialysis can take over your life with its demands on time and attention. It is much healthier for you to maintain a balance between dialysis and going to work. If you are in retirement or cannot return to work, maintain your social activities. These social activities are very important in living your life, not just dealing with an illness.
The Americans with Disabilities Act protects those persons who are disabled or impaired. Employers cannot discriminate due to anyone’s impairment or disability. If you have concerns about returning to work or finding a different kind of work, speak to your social worker or other members of the health care team.
There is no reason to dwell on your illness or let it rule your life. You have the freedom to choose what you want to do and how you want to live. You can continue to lead a happy and full life while following the medical directions you are given.
Once you are past the beginning stages of your illness and have learned how to adjust, you may continue to take part in almost any activity you did before you became ill. You must take care of your access site. Once you know how, you are in control and can feel sure you know what limits you should observe. Talk with your doctor and nurse to make sure you understand how to protect these sites and how to build your stamina. Exercise is great!
There are many reasons why you may have trouble falling asleep. People who are not on dialysis have trouble falling asleep as well.
The causes can be physical or emotional. Talk with your caregivers and find out if there is something that can be done to help. Then, try it.
Money may be one of the things you worry about most at the beginning of treatment. Do not get 'tunnel-vision' and make this the constant worry in your life. When did worrying about something change anything?
You may feel you are no longer the strong, able one in the family as you were before the illness. In most cases, things will not have to change drastically because there are ways to get help. You might need to just reorganize how you will pay for some things you did not need before you became ill.
The different insurances will pay for most of the additional cost related to treatment. There are supplemental insurance policies that will pay for other items. In general, Medicare pays for 80% of the actual treatment costs, including physician visits if you have both Part A and Part B. Speak to your social worker about the insurances you do have. The social worker will help you complete the paper work for coverage that you need.
You may feel uncomfortable or dissatisfied with your appearance because of your dialysis access. This is not unusual and you are not the first person to feel this way.
For instance, if you are a hemodialysis patient, you may feel that your distended veins may be ugly (although in the eyes of your doctor they are healthy and perfect). If you are a peritoneal patient, you may feel more self-conscious because of the catheter in the abdomen. You may feel bloated and uncomfortable with the physical aspect of treatment. You may think your spouse no longer feels the same towards you because of these changes.
Feelings are OK! They are nothing to be ashamed about. You can use them to find the problem areas you need to look at so you can change your point of view. Feelings should not be kept inside because they get all jumbled together and it gets harder to separate them the longer they all get mixed together.
Feelings have a way of becoming much stronger and more convincing than thinking. Talking to someone about feelings helps give a better view of what is really the truth. Each of us sometimes cannot see the forest for the trees and needs a reality check. Support groups are great for 'reality checks.'
You may have to go to the hospital during your course of treatment. Most often, access problems are the reason for having to go to the hospital. That is why it is so important to care for your access as the nurses and your doctor tell you.
Other medical problems like high blood pressure or diabetes can become problems for you if you do not follow the medical instructions you are given.
“How am I going to get to dialysis?” is among one of the worries you will have when you start treatment. You may think that you are unable to drive yourself to and from the treatment unit or you may feel that asking a family member or friend for help three days every week is too much. For some, there may be no one available and the cost to pay for a cab cannot be met.
Your social workers will examine your situation with you. There are other resources that can be used in many cases. An important part of the assessment process is the evaluation for financial coverage, such as Medicaid or other state/county-based benefits, for the provision of medical transportation.
There are some transport systems available that can possibly assist you get to and from the dialysis facility. Many counties have a transport system available for a nominal fee. There are also non-governmental transportation companies that will transport you to and from dialysis for a fee. Some private insurance companies may cover part of your transport costs, depending on your type of insurance and your medical condition.
Medicare does not pay for transportation in most cases. For help with these issues you should speak with the social worker in your dialysis unit. If you are in the hospital when you begin dialysis, your case manager can help you with these issues.
Keep in mind – Medicare is very stringent about coverage for transportation – it will pay only in cases of extreme medical necessity. You would have to need stretcher transportation for a specific medical condition. If you think you need this kind of transportation (especially when preparing for discharge from the hospital) talk to your renal social worker or another designated person in the facility.
Time is one of your most precious assets. Decide how you want to spend your time while in treatment and when you are at home. Keep your friends in your life and do not make your illness the center of your life. Enjoy going to visit family and friends. Take part in any of the activities sponsored by a religious group to which you belong. You need to remember that you can maintain your independence and live a full life. Do not let others who want to help you, make you completely dependent.
The time of others should be respected as well. Treatment time schedules in facilities are for the benefit of all. You must be at the unit when your treatment is scheduled to start. You can disrupt the treatment of others if you are late for treatment.
Wear clothes that are comfortable, not tight or binding, especially at the access site. Wear things that wash easily. There are some clothes that are made particularly for dialysis patients by dialysis patients. Ask your social worker about this.
You must understand the need to understand and do what members of the health care team advise you. The dialysis schedule and diet seem to be the hardest to live with for some. Do not think of your instructions as 'you may not' do these things. Learn to think of the instructions as 'I will do this so that I will feel better,' or 'I will do this so that I will not have to go to the hospital.' Maintain control over your life but do it in a positive way. You must work with your team to get the most benefit from your treatment and feel good.
If you follow the medical instructions you will have:
Fewer problems during treatment (e.g., cramping)
Lower weight gains between treatments
Physical stamina with well-controlled blood level indicators
Greater feelings of self-control through active lifestyle
Increased longevity and quality of life
Renal Social Worker
The social worker is a licensed health care professional who is knowledgeable about resources and referral services. This person assesses and evaluates your background, support system, and access to fair and adequate resources. The goal to help you understand and integrate the dialysis treatment into your existing lifestyle. Areas the social worker concentrates on include getting access to resources that will lead to the highest level of function; strengthening the ability to deal with new and changing events; and, expanding the support systems to help everyone adjust. The social worker does not act alone, but is part of a vital multidisciplinary team effort geared towards your wellness. Visit the Life Options Rehabilitation Advisory Council site for more ideas at: www.lifeoptions.org.