It is almost 3 yrs since I started dialysis. And I know that folks on this page have talked on a sense of being WASHED OUT.
I’ve always have felt good ,both before going on dialysis ( after starting dialysis) or after dialysis. In other words I felt health wise good, and my labs outside of PTh have always been the same.
But in last month or so I have a sense of blah. Is this washed out? I do nocturnal .I get a good night sleep (most nights). I firmly believe in a connection between the physical and mental worlds. Having dealt with a life long health issue, I come to understand that when a person is dealing with an illness for a long time , that from time to time ones mental outlook comes crashing down. And if you don’t have a release in place the crash can last forever. I can’t explain why the sense of blah or even when it set in, just like I can’t explain how I woke on this past monday, and felt like I had been renewed. Nothing that I can think of changed. My labs are still good. My sleep is good.But I woke and felt alive once more. Were as before I woke and went though my daily actives, but “” Oh well here we go blah blah" Now I go to to bed looking forward to the next day
On the other hand, many many years on dialysis can also have an affect on the mind, but 3 years don’t sound that too bad to me.
[quote=bobeleanor;16586]Hi Folks
It is almost 3 yrs since I started dialysis. And I know that folks on this page have talked on a sense of being WASHED OUT.
I’ve always have felt good ,both before going on dialysis ( after starting dialysis) or after dialysis. In other words I felt health wise good, and my labs outside of PTh have always been the same.
But in last month or so I have a sense of blah. Is this washed out? I do nocturnal .I get a good night sleep (most nights). I firmly believe in a connection between the physical and mental worlds. Having dealt with a life long health issue, I come to understand that when a person is dealing with an illness for a long time , that from time to time ones mental outlook comes crashing down. And if you don’t have a release in place the crash can last forever. I can’t explain why the sense of blah or even when it set in, just like I can’t explain how I woke on this past monday, and felt like I had been renewed. Nothing that I can think of changed. My labs are still good. My sleep is good.But I woke and felt alive once more. Were as before I woke and went though my daily actives, but “” Oh well here we go blah blah" Now I go to to bed looking forward to the next day
Patients in the NxStage_Users group have found some keys to maximize the tx. Even a patient on nocturnal as you are doing wasn’t feeling as well lately and has gone to more efficient #'s which seems to be working for her. What is your FF, BFR and liters of dialysate? Maybe it is time for an adjustment.
My tx times do change. I’ve never since I started nocturnal would run the same times as far length (any where from 6hrs, to 11hrs) My rates are BFR is 300, this is only constant, FF anywhere from 18 to 24 it depends on solution rate, 2.7 to 3.5 I use 30 liters a night. I take off at most 2.3 in a tx most tx’s 1.2
After thinking on it more I 'm looking at the concept of the Tx’s turning into a job. You know yo go to to same job ,everything stays the same, the only thing is doing TX you don’t get to meet people. When I first when on SSDI in 2000. All the people I knew said to look at like your going to retired. But I said , and knew that I would miss the interaction between people. Even people that yo may not really like , but work makes you be nice. You miss them. What do we ( those on dialysis) do to interact with others.
I had been working hard on getting back to work. And I thought I had a job,but puff gone in the night air. I have a complaint with EEOC
NxStage has a publication which is a primer that contains info on how to maximize one’s #'s for the most efficient tx. Your neph should of gotten a copy. It basically involves using more dialysate and adjusting the FF # to between around 32-35. This can be done even if one is on nocturnal. Looks like you have enough dialysate, but your FF # is too low causing too long a dwell time in the dialyzer. I don’t know if you can get a copy of the primer from NxStage, but I do know there is a copy you can view and download at NxStage_Users. This is a group for NxStage users and their caregivers only. The subject of how to maximize the tx is currently being discussed there. The group is very welcoming of new members and it is the best place to get technical info and support for NxStage users. Those who have adjusted their tx perimeters according to the primer have found they are getting better energy. Of course, run this by your neph first.
Re the lack of interaction due to doing dialysis at home, that has not been a problem for me at all, personally. In fact, I was so very glad to get out of the clinic. The one thing I miss a little was the humorous times as dialysis happenings can be quite funny at times, but those were not the norm, more dreary days then anything else. Sounds like you are a guy who misses social interaction on the job. Hopefully you will get back to work soon. Of course, there are various other ways to get socially connected. Most ppl either join a place of worship, take up a hobby , join a club, volunteer. Personally, I have a very unique way of filling the need for socialization and if if you would like to know about it you may write me personally.
Sounds like you may also be going through a little burn-out as it is not easy to do txs everyday, but we do them because we feel so much better. There is a person who has the signature “breathe in, breathe out”. That’s about how it is some days, but we stay connected in our group and cheer each other on and gain fresh perspective. Personally, I do that with faith more than anything else- I’m down, but not out and I keep going on to better days.
When I was trained on the nxstage . A nxstage rep and the team and myself talked just about FF. And at the time my team had taught me that FF should be 30 to 35, more 35 than anything. But the nxstage rep. said that the lower the FF # was better. I will email my new nxstage rep, who has told me to email anytime with questions.
On my inter action with people, while on the job I would interact with all sorts of people . And when I would be home, I spend my time on my own. I used to hike into the mts. or mt bike into the mts. I would find off the trail areas and sit and read a book. At one time I had a great dog. And we are looking into getting another ,but we more time to get our house together. Plus we have two very old cats that we don’t want upset, you know it there house. I will if I don’t get a job by a set time then I will try and help out at the local adult day care where my mom spent time.
thanks Jane for being out there, that is one of the reason I like this site. People are more than willing to post on issues.
Do you have a neighbor who works who would like his/her dog walked…maybe more than one. I have a friend who has dogs of her own, but walks a dog for a friend who works for a little extra spending money and exercise. Doing something like this would get you outside, possibly around people that you could talk with on your walk, and you’d be getting exercise which could/should improve your fitness and your mood as well as your sleep. It could be a win-win all around and it could be a start of a new business.
There are companies that recruit people that are disabled to work at home and they’re not all scams. You have a computer and I assume a phone. This is one company that does that: http://www.nticentral.org
I want to thank Jane and Beth for their posts. And if I can’t get a job by next spring than I will look into things. One of things that I’ve come to really want to help with is at the adult day care units. Since I had to deal with my mom alz. and getting her into center and then a nursing home. I think no matter how bad I have it seeing people in these units kind of helps put me in my place ( which then makes me feel worse for complaining). I also have a family member who has MS and has had to be placed into a nursing home. She is only 45 but her mom ,my sister passed away in 98. and her dad can’t handle all her issues anymore.
Beth, I’m in the ""Ticket to Work ""program, that CMS has for people on SSDI to use to help with reentering the work force. But just like all federal programs that deal with helping people in our own country. They are under paided and short staff. And they can’t get you a job if jobs are not there.
I think I may have posted about a maybe job with a area bus company, and how jumping thow hoops. I got a two sentences letter from company saying , thanks ,but no thanks. In the letter it was stated I failed the physical. What hurt the most was not a reply from the company telling just what part of the physical I had failed. On top of this everyone I had try to contact seem to give me no reply. I wasn’t looking for the world to stop but at least something saying my requests were going to be looked into down the road. Well I’m glad to say that I did get a reply, and will meet with someone on monday.