Resources for young people with ESRD

My nephew is 24 and has ESRD, CHF and severe hypertension. He lost both parents by the time he was 19 and ended up homeless. He came to live with me about 7 months ago and I just learned about his illnesses in the past five weeks. He was diagnosed 2 years ago, but we had no knowledge of his medical status and situation until now. The doctors I’ve spoken to tell me that he’s not been compliant at all and many clinics and doctors have discharged him due to liability issues and his refusal to do what he has to do to survive. I am making sure he is taking his medications and driving him to and from dialysis three times a week. I’m trying to help him understand how serious this all is. I really think he would benefit from counseling or some sort of ‘group’ if there is such a thing for people who are living with ESRD. For some reason he thought his kidneys would get better - similar to a wound healing or a broken bone…that over time they would heal and he’d be back to himself. He’s very young - I think the trauma of losing his parents and not really having much family to turn to has caused him to regress and he stopped developing mentally and emotionally after 19. I don’t see him as a 24 year old at all. I have five children of my own and my two 19 year olds are in college, but have a much better grasp on reality than he does. I just want to get him all the help I can. To have suffered the traumas he has, and now have the life changing medical condition is very difficult for him to digest and accept. We are located just outside of Houston headed towards Galveston Island. He is on early disability through Social Security, Medicare and I just got his Plan D chosen for his prescriptions because without that they are over $650 a month. I also found the additional assistance program through SS and have registered him for that to provide additional help with his meds. I will continue to do all I can to support him and get him on track, but realistically he needs more support than I can provide and more information and knowledge than I can give. If you know of any groups, resources or counselors that specialize in ESRD it would be so beneficial for him - and we’d welcome any help we can get.
Thanking you in advance for any assistance you might offer. ~ Krista

It sounds like your nephew is lucky to have you take him in and try to help him. It probably doesn’t make it any easier to cope with, but your nephew’s behavior is not that uncommon for someone his age with kidney failure. Delayed maturation is common and people on dialysis of any age may have problems thinking clearly and remembering. Denial is a very common coping mechanism for people with chronic illness and depression is very common, especially for someone like him who has faced all the losses he has faced. It’s also likely that he is anxious about his future which he may see as uncertain. Here is an article that may help you understand more about how to help people his age cope with dialysis:

If he’s getting dialysis in an adult clinic, which is most likely given his age, the adult dialysis system and healthcare providers in it are often ill prepared to handle adolescents and young adults with kidney disease who often are not as mature as others their age and they may expect him to grow up and act his age and he may feel like they’re bullying him. That said, every dialysis clinic must have a social worker who has a masters degree and counseling training and is responsible for helping patients and their families cope with kidney disease and achieve the patient’s desired level of functioning. The social worker is also responsible for helping the dialysis team understand patients’ emotional needs. The social worker in the adult clinic may be less experienced dealing with patients your nephew’s age than with those who are middle aged or older and may refer him to someone in the community who has more experience with chronically ill young people. You should talk with the dialysis social worker about what you know about your nephew’s emotional state and how that affects his behavior. He/she may have some ideas for you. Be aware that because of his age unless you’re his legal guardian, staff are limited in what they can tell you about his specific case because of patient privacy laws. If your nephew is willing and gives permission, they can talk with you and include you in planning for his care as much as he wishes.

So far as resources for counseling or support in the Houston/Galveston area, talk with the dialysis social worker or contact the National Kidney Foundation of Southeast Texas which is located in Houston. NKF’s phone numbers there are (720) 748-9991 or toll free at (800) 961-5683. Other resources for support:

The dialysis social worker can explain federal, state, and local resources for financial assistance and help you and him develop future goals, which hopefully will include school and/or work. People on dialysis often feel like they’re too sick to work, staying active and dialyzing to live instead of living to dialyze helps those who work do better physically, emotionally, socially, and financially…and research shows they often get transplants sooner and the transplants last longer. The Texas Department of Rehabilitation may be able to help him get further education, if needed, or find a job that he can do while on dialysis.

One thing that makes it easier to work is to do home dialysis. There are 5 types that you or your nephew can read about on the homepage of Home Dialysis Central. Another resource to help you and him learn about various aspects of kidney disease is Kidney School:

I hope that your nephew is able to come to terms with his health condition, learn from others who have faced the same obstacles and have overcome them to live full lives in spite of kidney disease.

Thank you so very much Beth. I am trying to do all I can, but have to admit this has been very overwhelming for me. There is so much information to digest and it’s difficult to figure out what his particular needs are medically, emotionally and mentally right now. I did have him sign a Power of Attorney which names me over his medical and financial issues for now. So depsite the medical facilities acknowledging that they can speak to me, they seem to ‘pass the buck’. I’m always told I need to speak to someone else, and the main kidney doctor who agreed to take over his care has yet to call me since his discharge from the hospital the Wed. before Christmas. He was hospitalized for a month with a staph infection in his blood which originated from his chest cath. When he woke me up to race him to the ER one night in pain - is how I learned how sick he is. Needless to say this has been a complete shock for us, and of course a very scary situation for everyone. Your words and information are greatly appreciated…you have no idea. I hope we can get him through this difficult time and help him see the light that is still shining for him. Many doctors asked me if he was suicidal - and I really don’t believe he is…I just really believe he didn’t fully understand and appreciate where he is. You seem to hit it on the head when you said that he needs to come to terms with his health condition and that he’s having difficulty ‘reasoning’, ‘thinking’ and making ‘good choices’ right now. While I can’t make every decision for him - I will continue to take the lead and guide him until I know he’s capable of doing more for himself. Life is just so precious and he is a really ‘neat’ kid with amazing potential if we can just crack it. I’m going to request to speak to the social worker and the dietitian today when I take him to his clinic. I’ve been told that since he’s on Medicare that he’s eligible for services from both through the facility he attends. I would very much like these people to fully understand what’s happening - and maybe together we can create a solid team that can help him see through all the chaos and confusion to brighter things. I am going to review the information that you sent me and combine it with my binder of information and notes - thank you again. I feel blessed to have just a few people like you who are willing to extend. ~ Sincerely yours, Krista

You say he got a staph infection in his chest catheter. I hope that someone has explained to him and you how he needs to care for the catheter when he’s away from dialysis, including avoiding getting the dressing wet. Bacteria can be introduced when the caps are off the catheter ends or when bacteria in water get into the catheter or under the skin at the exit cite. The higest risk for infection, hospitalization, and even death is with catheters. The federal government has funded educational initiatives to promote the use of fistulas or, when it’s not possible to place a fisula, the use of grafts. You can read about types of dialysis access on the Kidney School site.

Peritoneal dialysis is another option for patients who dislike needles and want to be in more control that dialysis in a clinic offers. It requires placement of a catheter in the abdomen and can be hidden under clothing. Peritoneal dialysis can be done totally independently and patients can learn how to do it in a couple of weeks. Dialysis facilities can teach patients and helpers how to do all the types of hemodialysis at home in 3-6 weeks.

You say that your nephew has been discharged from facilities for liability issues over his “noncompliance.” Dialysis facilities are not allowed by federal regulation to discharge a patient for not following their recommendations, including skipping or shortening treatments. However, the same regulations do not govern the physicians who provide care to patients in dialysis clinics. They can terminate their relationship with a patient for any reason as long as he/she offers the patient information on how to get further medical care. Unfortunately, when a kidney doctor terminates a patient’s care and no other doctor who treats patients at a dialysis facility is willing to take the patient, the facility has no one to write orders for dialysis or follow the patient so it can discharge the patient for “inability to meet the patient’s documented medical needs.” This puts patients in a bind if they are asserting their independence because they want to have more control over their illness and treatment. This is another case where home dialysis can be just the key to giving the patient more control and de-escalating the potential for conflict between the patient and staff or doctor. Hopefully your nephew will understand that if he wants to get back to doing things he enjoys doing, it will be important for him to get as much dialysis as possible to remove the wastes from his blood and to take the medications and eat the diet that will give him the best chance to do that. It sounds like a good idea to talk with the social worker and dietitian. Each will be able to share ways to help him do well.