My wife and I have an older friend who took in a young dialysis patient (24 years old). I think he has been staying with her for over a year now. Anyway my wife is telling me he is looking in pretty bad shape. A transplant is out of the question right now for him from what my wife tells me due to dental problems. It is also starting to look like he is about ready to give up.
I can’t help thinking home dialysis might be part of the ticket to recovery, but I’ve hesitated to approach the fellow about it; I’m not sure he has somebody to help him with it - the lady he is staying with may not be able or willing to help in that regard. I guess I’m looking for some advice on this.
Obviously there are a number of questions here, one of them being the one you already mentioned, Plugger, which is how much help is your friend willing to be in the home dialysis process. Some others I can think of are:
– Where does your friend live? (Is nocturnal in-center hemo maybe a possibility?)
– What does this patient do when he’s not at dialysis? Sit around and think about what a wretched life he has?! In order to have hope, you have to believe it’s possible to have a good life, and it helps to get outside of yourself–to get a job, go to school, or volunteer and do something for others
– Is there storage space in your friend’s home if this patient were to choose PD or daily home hemo with the NxStage machine?
Is there more you can tell us about this situation?
To the best of my knowledge looks like he has having hard time coping with while dealing with personal problems he may had or has. In a situation like that alot of attention and support is needed, but I assume your older friend can’t be there all the time for reasons of work or other related schedules. Possibilty he may need professional counseling…
Perhaps dialysis at home for him might be helpful, but again…any personal problems he may have may intefere in preparing him, any mental, personal problems need to be sorted out first before persuing to go home and doing dialysis…
Encouragement and support are the first steps in trying get him out of the state of giving up…you can try and I know it’s very hard and sometimes we feel guilty for not succeeding in helping someone in that situation but we try our best and get rolling with it and cross your fingers that you really make a difference in this person’s life…
Plugger, if it is at all possible or an option, I would pursue the home dialysis. If the young man is only 24, he needs to be able to have a life. The only way he is going to feel healthier and more in control is to be able to schedule his own time and have the benefits more dialysis offers. Maybe printing out some patients statements from this board would encourage him and help him believe there is something better out there and you can have a life beyond dialysis.
Where does your friend live? (Is nocturnal in-center hemo maybe a possibility?) ---- I checked and I don’t see any nocturnal in-center hemo here in Colorado, the best I can find is conventional home dialysis about 40 miles away.
– What does this patient do when he’s not at dialysis? Sit around and think about what a wretched life he has?! In order to have hope, you have to believe it’s possible to have a good life, and it helps to get outside of yourself–to get a job, go to school, or volunteer and do something for others ----- I talked more to my wife and it sounds more like he isn’t depressed, just doesn’t give a darn, he doesn’t sound like the most compliant of patients. He did have a rather physical job, but lost it due to fatigue and hospitalizations. But I understand he has had a girlfriend for some years now, I’m thinking that could be motivating factor to straighten up.
– Is there storage space in your friend’s home if this patient were to choose PD or daily home hemo with the NxStage machine? ---- The place is a fairly good sized 3 bedroom condo, looks to me to have plenty of room.
Gus, you might be right. He might have to sort out some personal stuff first and lose the don’t-give-a-d**n attitude, I don’t know. But it might be easier if he felt better. So I think I’m going to take Marty’s advice and print out some statements from here, then approach the lady who saw enough good in him to take him in. Maybe between us and the girlfriend he might consider something like home dialysis.
The first thing to do to start getting some control over the situation, in my opinion, is to take care of those dental problems, whatever they are. No matter what dialysis method you may be thinking about, the most important thing is for him to get back on the active transplant waiting list. There’s nothing more depressing than knowing you are out of the running because of some medical or other problem. I’ve already been on hold twice.
I did call a foundation I know of in town that might be able to help with the dental problems and left a message. I also called a clinic I believe helps those with a lower income; I couldn’t leave a message - their mailbox is full. From what I understand medicare isn’t going to cover his dental, at least this is what my wife claims he said. This is starting to confirm what I’ve always thought, poor and sick in this country is a deadly combination.
I am a social worker by training and worked with dialysis and transplant patients for many years. Every dialysis clinic should have a clinical social worker to counsel with patients to help them cope with kidney disease and help them find the treatment that fits best with their lifestyle. Unfortunately, social workers have been pulled away from the role that they should be filling to do paperwork and be sure that patients have insurance, rides, and medicines. I’m not knocking the importance of helping people find the resources that they need, but I am concerned when patients’ emotional needs are overlooked.
I wouldn’t be surprised if the young man is afraid that his life will always be the way it is now – which sounds pretty depressing to me. If he thinks he can’t get a transplant because he can’t afford dental work, this could add to the extent of his depression. There is a donated dental program that helps people get dental work. In CO the program is called Colorado Foundation of Dentistry for the Handicapped. You can find out more about the CO program at www.nfdh.org/state/CO.html.
I hope that someone sits down with him and asks him what he always wanted to do with his life. He may believe he has to put his dreams on the shelf and this doesn’t have to be. He could go to school, volunteer with some group in his community where he gets joy, get a part-time (or even full-time) job, get married, have kids, travel, etc. He may be more limited by his own expectations than by his disease.
Thanks for the info on the organization! I will relay it on to him. I was thinking he might be able to get into a better frame of mind if he felt better, maybe I’ll see how he feels about home dialysis after I get him the dental info.
There is a donated dental program that helps people get dental work. In CO the program is called Colorado Foundation of Dentistry for the Handicapped. You can find out more about the CO program at www.nfdh.org/state/CO.html.
Re the donated dental program, is there a website or directory for locations in each state?
Also, when patients get worked up for tranplant list isn’t dental paid for?
Some commercial insurance includes dental coverage, but Medicare does not cover dental evaluation or treatment of dental problems as part of transplant care.