Everything you said was what I wanted to hear. When you start on dialysis the bottom seems to fall out from under you, but there is a way up & that is HHD.
I talked to the administrater at the center & asked her if they would start teaching Rob self cannulation & she agreed. When the damage that was done from infiltration heals they will start. She said it might be better if I learned first, I told I will absolutely learn, but Rob first. It will be his first step in self care & that is where to begin. I have read over & over that the best one to do this is the patient.
I mentioned the NxStage & she never heard of it, but was interested & asked that I send her information. I sent her a link to their web site.
I’m wondering if she has any authority to have the center where she works start teaching & using them.
Jane, I wish you and Rob the best; I know what it’s like to feel just ok, but not good. I drag on from day to day not feeling quite well, and other days just wanting to stay in bed; I don’t have the priveledge of being able to do that; most of us don’t! Some have seen this as not trying hard enough, or whining, but you and I both know it’s the opposite. I read the posts from those on home hemo and they always tell that they feel better, can do more, eat more ect… I want me some of that action lol I don’t care if I ever can eat a banana, but I sure would like to tackle a plate of spinach, or down a glass of fresh squeezed oj. Lin.
If you spoke with the administrator, she could have the authority to start a home hemodialysis program if the medical director and corporation (if the clinic is in a corporation) agree. Administrators are the ones that deal with the finances, policies, procedures, hiring and training of staff, dealing with getting licenses and certifications, etc.
Didn’t know you were not on HHD, guess I kinda thought everyone here was. Are you able to learn at your center & are you going to, if you can then go for it & have that spinach & glass of OJ & a lot of other things too. :lol:
Rob is one that is able to stay in bed most of the day & he does. It’s not much of a life anymore, no more vacations, no more out to dinner, no more energy to do a lot of things. And you know I never thought ESRD was like this. I didn’t have the slighest idea it was so completely life changing. Of course I knew about kidney failure & dialysis, but I thought dialysis was almost like a cure & would do a job as well as kidneys. I didn’t know it had to be several times a week & I didn’t know that you felt like crap after a treatment. I didn’t know anything.
And then I found HDC. It was like a miracle to learn about HHD & a way back to some sort of normal life & I’m going to keep at it until I get it for Rob & me too & I hope you do too.
I still have problems getting Rob to be involved in his care & my plan is to start him learning self cannulation since he still won’t sit down at the computer.
I was so happy to hear the administrator was agreeable because last week I talked with one of the techs or maybe she was a nurse, not sure, & was told we have never done that before & she didn’t seem very open to the idea.
About the buttonhole method I didn’t dare mention that, YET, but now I am going to send the administrator the link Beth posted. Can’t help it, but I get the feeling the center is not open to being asked to do things a little differently. So I’m going to take it slow & easy with them. They seem like very nice people & I liked the administrator right away.
Thank you so much for the links & I will keep frowarding them on to the center & hope it can make a difference.
I will do all I can to pass on information on any new things that come along, remember I said no one at Rob’s center has ever heard of NxStage. Other good points about that machine is can be plugged into any outlet & no extra plumbing is required. That in itself is a big plus where someone may not be able to afford to pay for the extras required for other machines or even may not want to be bothered.
So many patients do not take charge of their own lives by putting their care completely in the hands of the medical profession & when you do take charge & question them good things happen like it did for you. You are really an inspiration to me & probably everyone else.
Just remember even if you are doing short daily dialysis or whatever, you still need to restrict your fluids. Doing dialysis daily will make it easier to manage your intake, as you arent having a day or two in between treatments. You cant go and drink litres and litres, as it still affects you in the same way.
I am on nocturnal dialysis which for me is generally 40 hours a week, and even though Im getting so much dialysis, Im still not aloud to drink all I want. I try to aim not to go over 3 litres between treatments, but as most renal patients know, its very hard to stick to. I know I could easily drink 3 or more litres in a day.
My clinical assessment is that if Rob is staying in bed most of the day, not going out to dinner, not taking vacations, not doing anything fun, he is depressed…and with any luck, you’ll get depressed being around him. Depression is energy draining and staying in bed all day contributes to further loss of muscle mass that occurs with kidney failure in people that don’t exercise. What happens then is that people don’t have the strength to do what they used to do and they get even more depressed.
I’d suggest you take him for a walk every day to get him out of bed and out of the house. Get him to go with you to run errands. Take a walk in the mall (there are often benches to rest in malls). Walk in your neigborhood or on a local school track. Take a lawn chair if you walk on the track so he can walk part-way and rest. Keep track of distances and times. Start out slowly with shorter distance than you think he could actually walk. Make sure he has a good experience by not pushing him too hard. Not only will he be getting exercise, but you and he will have time to talk about something other than kidney disease when you’re out.
I’d also suggest if I haven’t already that you talk with his social worker and/or doctor to let them know how he behaves at home. This way the social worker can talk with him about things he enjoys and try to help him resume doing some of them. The doctor can prescribe an anti-depressant to help him get past the dark hole that he must feel he’s in.
You’re on nocturnal, but not daily. On daily, you really don’t have to think about a fluid limit at all. It’s almost impossible to be thirsty enough to drink too much just between morning and evening. And even if you do, it’s still only on you for a few hours, not a whole day.
It shouldnt matter how long the fluid is on you for, you are still stretching your heart back and forth. I can easily drink alot from morning to night. I think its still important to at least be aware of how much you are having.
For most men their identity is in what they do for a living and how they take care of their families. Hate to say it but lots of men have that macho thingy going on. When they must go on dialysis, and conform to the schedule and rules of the dialysis center it strips them in a way. It was hard enough for me! I hope Rob and you get the opportunity of home dialysis, and that it helps turn things around. I have a grown son living at home who has been ill for years and a complete dx. is a long time coming. Meanwhile he can not care for himself; it affects our whole family, and is heartbreaking so I know how you feel having someone lying around, not feeling well, not able to do the things they once did, wanting to but unable to. I’ve been at this for five years now and trully believe that home hemo will make things better, because with all those I’ve been in touch with that are on home hemo. not one has discouraged me away from it, just the opposite in fact. It hasn’t been available to me until now because like some I’m not able to travel long distances, or stay away from home for training.
Staff has even told me that if I had the chance it would be better for me to do home hemo; I believe it will be better for both Rob and I. Lin.