tedesa
Joined: 24 Jun 2003
Posts: 3
Posted: Tue Jun 24, 2003 1:53 pm Post subject: Social Worker to help assist for traveling
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Actually to clarify, the social worker's role in helping patients travel is to provide information about units listed world wide, and make sure all the required paperwork is sent to that unit. As the social worker does not travel with you or know necessarily the area you are travelling to, or know what your schedule is, plans are, where you will be staying, what is convenient for you, what you are willing to do re: treatment time and distance travelled it actually makes the most sense if patients or their families call units to inquire about space availaibility for a travelling patient as most of the time the ideally desired time/place patients want to go to is just not open to a travelling patient. Then many calls to many different units is needed, and cutting out the middle man in this inquiry [all you are doing is finding out if they have space for you when you want to go] which is the social worker makes the most sense. Social workers should indeed do all they can to help give you listings of various units where you would like to go, and make sure that your papers get to the unit; in cases of emergency travel they will be happy to do more. It is ridiculous that some units will not speak to patients about travelling- as the patient you know what works for you so it makes total sense to speak to the patient rather than a third party. Also FYI social workers alas do not have any magical powers in locating dialysis spots- if a unit is full they are full. We are constantly informed there is no room for a travelling patient.
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Tue Jun 24, 2003 3:26 pm Post subject: travel
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I would like to please ask that the poerson who started the subject of travel and the SW's duties to please start a new topic and let people respond to it there. In fact, I'll do it for you as I have something to respond myself.>>>>>>>>>>>>>>> <
><
>Thanks
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Anne
Joined: 21 Jun 2003
Posts: 7
Posted: Tue Jun 24, 2003 5:45 pm Post subject: quality unit vs home hemo
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I don't have any assistance for home hemo so I dont feel its someting I can do at this time. My family is willing to relocate to get me into a quality unit, but they do not have the time to assist me with home hemo. They have faithfully picked me up from every tx for years (I get low bp post tx), sacrificing their lives for me. That is something that has taken them a little extra time, but they have never had a
eak from it. They do not have the xtra time or energy that home hemo takes as their lives are full. <
><
>I know some do home hemo on their own. But I also have spoken with those who say someone should be around as at anytme something can go wrong. So, it's my choice to have someone around and I don't have that at this time. <
><
>I'm fully aware of the advantages of home hemo, but it is not possible for me presently. Also, my move to get better dialysis is for a period of one year. After that, I will have to make other arrangements as my family will have to move again for their occupation. This is just a one year opportunty and then Ill have to cross the next
idge when it arrives. An idea I had is I wish I could take a home hemo traing program just so I could protect myself better in my current unit. My current unit is decent, but is lacking in education. There is not a home hemo program in my city, and even if I could travel, I've never heard of someone being allowed to train purely for education and self-protection. <
><
>I'd like to see a format whereby patients could be trained so they can be in control of their txs even if they can't conduct them fully.
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ptsw
Joined: 22 Jan 2003
Posts: 24
Posted: Wed Jun 25, 2003 12:57 am Post subject: There is a self care unit
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In PA...the nephrologist supports a program in which staff train you to do your own treatments in unit.<
>Renal Care Group East-Mt. Airy-215 843-1600.
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Wed Jun 25, 2003 2:43 am Post subject: Home hemo
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The home hemo venture didn't work out for me because of the way things are set up. It might work for you though. In the NE FMC has several home hemo programs available. You don't need a helper if you will be computer monitored. They will come out and look at your home to see what needs to be done and if suitable. They also interview you. It won't hurt to call them and ask about it!<
>As I said before, I go to a nice unit. If you email me I can give you info. about your concerns. <
>Lre54@hotmail.com
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Nothings Perfect
Joined: 27 Jun 2003
Posts: 1
Posted: Fri Jun 27, 2003 6:48 pm Post subject: Your search
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for a quality unit could take more time than you have. You said you only have a year to make this change and you want to stay in a warm area which only gives you a few choices. People are not going to talk about their units because of the what may happen to them. They don't know you from Adam and you might work for the industry collecting information to use against them. It sounds as though your family has been great, but its time for you to take the next step and start home hemo. Like Lin said, with the computerized home hemo you should need very little help and should be able to manage with minimal help from your family. Does everyone in house work or can one person help you? You could arrange your tx so that someone is home to help, it would be easier than driving you to/from the unit, which takes time/effort. Home hemo would take less of your family's time than what they are doing now to help you. This is a time for you to step forward and make the decision, only you can do that. Good Luck.
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get the inspection
Joined: 28 Jun 2003
Posts: 1
Posted: Sat Jun 28, 2003 3:38 am Post subject: Call up the Health Dept
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Get what they call the 2567'2 which are the inspection on the units. <
>Ask the clinic for them also, as they should be made public. <
>Ask when the last inspection was.<
>Sit in the waiting areas in the clinics and ask patients questions, they are more talkative where they feel safe.
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exceptwhen
Joined: 28 Jun 2003
Posts: 1
Posted: Sat Jun 28, 2003 11:27 pm Post subject: The unit secretary
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Listens to the patients' conversations. When<
>I was in the waiting room with my wife and we<
>were talking to many of the patients, I noticed<
>how the unit secretary was listening to every word.<
>I mentioned this to my wife who said this was typical of<
>the secretary. Everyone is too afraid to voice an<
>opinion when she listens.
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David
Joined: 25 May 2003
Posts: 2
Posted: Mon Jun 30, 2003 11:18 pm Post subject: finding a good unit
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It looks like finding a good unit is nearly impossible unless one get's lucky and hears of a good recomendation. One either has to live in a big city where there is competition and where there is the time to visit each unit and sit around in the waiting room listening to what the patients say about the facility. And
then, even if a person lives in a big city where there are a number of units, that doesn't mean that more then a couple will be close enough, because isn't there a law that there can only be so many units to an area?<
><
>So, other than being fortunate to have a good unit in your area, or getting a recomendation on a good unit so you can move to an area, it is virtually impossible to find a good unit. <
><
>Really, there's no place one can call and ask where they can find a good unit.<
><
>As for home hemo, only people who own their own home and have a spouce, parent, sibling, friend, paid helper or can do their own treatments without the help of someonelse (very few can do this) are viable candidates.
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Lin
Joined: 28 Oct 2002
Posts: 337
Posted: Tue Jul 01, 2003 12:11 am Post subject: Recommendations
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from pts and their families is the best way to go! Think about it, you can call all the units, companies, and even the health dept. and no one is going to tell you ANY unit is bad! Unless you are a pt. you don't even know what being in a bad unit means!<
>If you hear of a good unit fine, if you decide on home hemo that is fine too! Lin.
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cks
Joined: 30 Jun 2003
Posts: 12
Posted: Tue Jul 01, 2003 8:59 am Post subject: Anne's search
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Wow Anne, I've seen your posts on just about every ESRD Internet Board out there. So tell us - What have you learned? Are you close to a decision? <
><
>One thing that I can't help thinking is that no matter how good a unit is today, tomorrow is never promised. Staff can be replaced in a blink of an eye. Do not assume home dialysis is out of reach, there isn't a better option available in the US. The one option I haven't seen mentioned is Peritoneal dialysis. Have you considered PD?
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Anne
Joined: 21 Jun 2003
Posts: 7
Posted: Wed Jul 02, 2003 9:18 am Post subject: getting closer all the time
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cks, <
>Yes, I've put the word out as I'm determined to find the best tx possible. Suggestions are coming in on how to find a quality unit and I'm thinking them over. There have not been many personal recomendations, but I'm hopeful the suggestions for how to find a quality unit will pan out. Still open for further ideas.<
><
>No, I have not considered PD. To be completely honest and a little humorous, my thoughts have always been that hemo is disgusting and PD is even more digusting!!! But I gotta live so must accept it.<
><
>I am not at all closed to home hemo. Would prefer it, but need a consistant location (when we move we will rent first and then buy later), and a helper as I think that's wisest for me, and can't say I have one at this time.<
> <
>And whereas it's true that a unit can have good workers today who are gone tomorrow, I think the better units keep their workers much longer than that, and if one left or retired, managment with good character would replace them with only the best.
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wendy jill
Joined: 27 Jun 2003
Posts: 7
Posted: Mon Jul 28, 2003 7:45 am Post subject: good center
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Hi Anne<
><
>Thank you for your posting a while back. I'm very erratic at best as to how often I can get on.<
><
>Jill's unit is in North Carolina (Raleigh/Cary). If this is somewhere you'd like to consider, just reply. I'll check daily and then if interested give you the name.<
><
>As others have said, it's far from perfect, but compared to others she's been in it's a blessing.<
><
>The staff is actually trained, and caring (quite a concept) - and I think it's universal that the doctors are not around as much as you'd like.<
><
>But she's pleased, feels safe and cared for and that's important.<
><
>Wendy
