Hello, My name is Lin., yes the one that posts here all the time. I received this email this a.m from someone asking for my help to perhaps do home hemo… I don’t know who she is, and thought if I posted this info. here she could get some help because it sounds like her life and wellbeing depend upon it! If you can please email her, and at very least offer some help I would appreciate it. I’m going to send her the link for this site too so she can talk with people who are on home hemo. Thanks a bunch for any and all help. Lin.
Hi my name is Canesha and for the past six years. The quality of care is constantly decreasing. I cant even get my the machine or chair cleaned. They tell me that the problem is my anger. I had to talk to three doctors for one year and six months to get the catheters removed that were placed too far down. Even the Radiologist (viewed while lying on my back) said that they were down to far and did nothing. Even when I explain that it only causes a problem when I am trying to sleep they took a xray with me sitting up or standing to show me that it was okay. Since then they have caused me to loose a fistula and two graphs. One from bad sticks, one for not reporting my transonic dropping 50% in one month, and the other from wrapping the tape around my arm which clotted the fistula off. Being that my veins are small I not quite sure if home hemo will be an option ever again. I had to learn so much over the years and still I am being lead astray by officials that are suppose to be tending to my health. They even let my grafts clot of even when they know that my blood clots fast an all they have to do is give me more heparin. When I remind them they quote procedures to me. And talking with the administration is not helping. I was released from a unit once for leaving the unit with my needles in my arm. However, I asked the nurse three time before a tech (Sharon) repeated my request and it was still no respond. Then I asked once more before I went outside to wait 45 minutes on my driver. The next day my doctor wanted to talk with me and gave me dismissal letter for not wanting to sign a misconduct letter. I spoke with the Area Administrator …As I explained to her I do have a problem with abiding by the rules but I cant make someone do something that they don’t want to do and I also told her that I would sign their conduct letter if I could put a statement with it. Things were suppose to be settled. But when the thirty day were up I received a call From Rena the unit manager and She told me that I was no longer allow to come to that unit. That nearly killed me. It would have if they would have been able to resistant me. Now, I am stuck in a unit that I cant trust. And I am unsure what I can do. The more I compromise the more they take. I would love to do home hemo, but when I requested the information they told me that I wouldn’t be able to do it because It requires special plumbing. And I have no House. I graduated Cum Laude with a BS in Chemistry and I worked two jobs while in school to support my education. I had a grant t Akron University that I was suppose to start in 2000. But I started dialysis and been trapped in a system I thought was set up to help me instead it is holding me back. If you know something or could send this to someone who can help or at least guide me to some one or something that can help I would appreciated it. I am trying everything I know how but the results are discouraging. Can you help
I believe what she’s looking to do is find a unit that offers home hemo so she can take it home and do it; she won’t have to worry anymore then. Yes, DE is a good idea and I’m sure Arlene can help with her unit problems. Gee, problems at two units, and problems with her access. Dialysis on a good day is stressfull; I have to wonder why we should have to put up with things like she has experienced. I’ve said it before and I’ll say it again, not every unit is good and the one’s that are bad are horrendously bad, but if you’re in a good unit, many turn a blind eye. I would contact the network, but only to say I did so; she might have a problem at the unit after doing so because I’m sure staff will figure out who called network reps… In the first unit I was at they were on a first name basis with them, and it was a pretty decent unit. Hope Claresa can get on home hemo soon. Lin.
But she must have internet access? Did she email that to you? If so, tell her to visit this site to find out wheteher there’s a home training center close…
Thanks Gus, I’ve done that. It sounded like she wanted to find out more about home hemo, machines ect… so I emailed her, sent her the link and told her it was best to ask questions of people who knew about doing home hemo, and the machines ect… I hope she decides to come here for information. Sounded like she was desperate to get out of the incenter situation. Probably isn’t fortunate enough to get into a nice unit. Lin.
So many dialysis patients suffer these type indignities. Groups that truly advocate for patients are so badly needed. think the Illinois group has the right idea.
True, and the best we can do right now is inspire people to be on home hemo. . That is why the other posters here who are already on home hemo. are doing such a great job; their advice and experience is sorely needed. Can’t wait to add to it! Our home addition is taking way toooo long. The only thing I want to go shopping for right now is my dialysis chair! I have great people taking care of me while in the unit, but none the less don’t feel completely safe. Dialysis incenter is dysfunctional at best! The worst part is those in “the family” can’t see it, deny it’s exhistance. I’m glad for those who haven’t experienced any problems; I used to be one, but I now doubt no more. Lin.
Hi, I am new to this board and i was reading about Canesha. Has anyone heard how she is doing? Seems like she was going through some major things in her life. Well, we are all, that is what so great about these message boards, we can all learn from each other. I hope she is doing well and was able to find assistance.