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petey
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« on: December 02, 2008, 05:17:19 PM »

Last week, my Marvin decided he wanted to "volunteer" at his old clinic (was there for over 12 years -- now he's on home hemo).  He feels so good and has so much energy that he decided it was time to stop being a "house husband" and have a "job" again (even if it doesn't pay anything).  Since I'm at school all day teaching, Marvin gets bored here at the house by himself.  Marvin decided he'd like to volunteer at the clinic where he went for so long.  He said he could help the patients out of their cars, carry their blankets/pillows, help them get back when they're called, weigh them in, get them back to their chairs, visit while they're running, help them wrap up with their blankets, help them back to their cars, roll up the "on" supplies for the nurses/techs, etc.  He also wanted to organize some special events (meals, parties, snacks, etc.) because he has some great connections in the "outside" community where he could get stuff donated.   He said he figured it would help the staff (by his doing the "little," mundane things that need to be done) and also help the patients (he still knows many of them, and they all loved him).  He thought it would help the others because he's so sensitive to their needs, their problems, etc. because he's been there -- and is STILL there (just at home now).

The nurses weren't interested at all in Marvin's volunteering, and his feelings were hurt.  He said they acted like he was trying to "get in" to see what was going on (like, what is going on there?); they didn't see his truly altruistic offer.  Anybody else been treated like this?  I'm afraid it's left him feeling a bit "useless."  Any suggestions?
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lola
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« Reply #1 on: December 02, 2008, 05:24:14 PM »

OMG :Kit n Stik; I can't get over that, poor Marvin, you would think they would LOVE have someone for free help. Give him a big HUG from me :grouphug; :grouphug;
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G-Ma
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« Reply #2 on: December 02, 2008, 05:38:35 PM »

He might want to talk to the Director first and there may be problems as far as insurance if he or another person is injured.  I have heard people talking about things like volunteering in center and what they were told.  There also is the confidentiality problem that they could be concerned about.  He may have to volunteer at a medical center or another medical office if that is what he is interested in.  I hope the nurses did not just "blow him off" without giving him a reason of some kind for their disinterest.  I've always wished someone would start a support group in this area to meet once a month or something, just to be able to get out and talk to people who have the same issues.  That might be something he could think about there.  Don't let him get discouraged.  Hugs to both of you for all you do.
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« Reply #3 on: December 02, 2008, 05:49:08 PM »

I'm going to be volunteering at my centre, and I have to go through an application process and lots of paperwork, mainly for insurance/liability and privacy. Maybe they would take Marvin if it was a "formal" application. I hope Marvin can do it. Give him a hug for me  :grouphug;

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


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monrein
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« Reply #4 on: December 02, 2008, 05:51:25 PM »

Petey, I'm so sorry that Marvin's offer wasn't accepted and that his feelings were hurt in the process.  Some professionals can be very territorial even though they could really use the help.  I think Ann may have hit on some important points too.

Do they encourage home hemo in your area ?   Could Marvin be a visiting volunteer to others on home hemo and bypass the clinic?  Do they have a peer support program for people training for home hemo?  Are there any opportunities to do volunteer work with the local Kidney Foundation?  I used to volunteer on the Patient Services Committee at our KF.  I also used to do blood pressure clinics and talk to High Schools about kidney disease and organ donation, the need to let family know your wishes etc.  These are just some suggestions to consider so don't feel you need to answer the questions.  I know every area is so different.

Hugs to you both.   :grouphug; :grouphug;


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Pyelonephritis (began at 8 mos old)
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Cadaveric transplant 1985
New upper-arm fistula April 2008
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Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
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« Reply #5 on: December 02, 2008, 05:54:33 PM »

Petey,

I can't believe they didn't even want to consider what Marvin is asking of them.  When I was pre-dialysis, I had a friend that suggested for me to volunteer at a dialysis clinic so that I can better understand what people goes through day after day.  I never did pursue it.

I remember I had to go to Duke to have IV Steroid treatment for 3 consecutive days.  One of the volunteer came and sat down with me and we chatted a bit.  I really enjoyed that time with her. It beats having to sit there for 2-3 hours.

I understand there health risks, HIPAA regulations, etc... But hospitals, pet adoption.... have volunteers all the time.  So what's the difference.  I know if I was in Marvin's shoes, I would want to do this too.

I would definitely speak with someone in charge of the clinic to see about volunteering.  Tell Marvin, don't give up and I admire him for wanting to give back.
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2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
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« Reply #6 on: December 02, 2008, 06:14:26 PM »

Maybe he can volunteer at a hospital? I just got my paperwork in to work at the information desk at my local hospital. It required an interview, paperwork, a background check and a TB test. It took weeks to get in and I should start next week. When I volunteered 20 years ago, there was none of this. In any case... good luck and I hope Marvin finds something nice to volunteer at.
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10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

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petey
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« Reply #7 on: December 02, 2008, 06:23:18 PM »

You may be right about the HIPPA regulations.  I hadn't thought of that.

This clinic is operated by the same company (DaVita), same region, same group of nephs that Marvin goes to (he just is in a different division -- home hemo -- as opposed to in-center).  They know him and have known him for 14 years.  I would think the insurance issues would be nil because he's technically a patient, too (just not in-center).

No, home-hemo is not pushed in our area.  As far as I know, Marvin is the ONLY home hemo patient in our entire county (it wasn't offered through his clinic, this clinic where he wants to volunteer), so we had to "switch" to the Wilmington, NC clinic (about an hour away) when we pushed for home hemo and got in that.

Some things have changed since Marvin's been on home hemo -- like a new facility administrator.  The previous one (Marvin still calls her his "girlfriend" -- she was his first floor nurse and moved all the way up -- she still comes by to see us often even though she's moved to Fresenius) always called Marvin when she had a patient who didn't want to start dialysis, who was having problems adjusting, etc.  She'd tell Marvin, "So-and-so has questions and wants to talk to a patient.  Are you willing to go?"  Over the years, Marvin talked to probably 20-25 "newbies" and honestly answered their questions (sometimes you just have to talk to somebody's who's been there).  Most of the patients who were having adjustment concerns were younger men (like Marvin) and had questions that only a man who's been there can answer.  So, he already has "experience" as a "patient rep."  I told him that maybe the FA was just having a hectic day and didn't have time to let it sink in what Marvin was offering; I told him to go back next week.

However, Marvin's not one to let himself get hurt repeatedly.  He stays somewhat "busy" with his other volunteer "jobs" (youth baseball organization -- but it's the "off" season;   county's recreation board -- but it's a night-time commitment;  etc.).  He says he'll just "lay low" and maybe he'll go back later.

I hurt for him.  He feels so good and wants to do something with his time and his life.  He is limited (he wouldn't like to hear me say that) in what he can do, so he thought this was "perfect."  I told him he might want to consider some other place (nursing home, etc.) to volunteer, but he has a special affection for dialysis people.
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monrein
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« Reply #8 on: December 02, 2008, 06:28:20 PM »

Just a very cynical thought Petey, but do you think they worry at all about losing patients to home hemo?  Less money for Davita?  Seeing Marvin doing so well would make me switch and fast too.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
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« Reply #9 on: December 02, 2008, 08:21:36 PM »


petey - maybe you should have him show the nurse and center manager this: http://www.davita.com/dialysis/emotional-issues/a/1963
scroll down to: Become a Village Greeter at a DaVita dialysis center

Perhaps they missed the memo.  :sarcasm;
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« Reply #10 on: December 03, 2008, 12:40:31 AM »

Wow Marvin's offer is awesome! What a guy! I think they should totally take him up on his offer, but I agree he needs to approach this the right way, and that would be with the director/administrator rather than the nurses doing the day to day stuff.

I know I have already thought that I KNOW I want to offer to still do stuff for my unit if/when I get "that" call. I have already thought to contact the dialysis co-ordinator and/or the unit manager and offer myself to be there "on call" as it were maybe to come on a regular basis or even that they could call on if they have a patient that is a bit scared, a first timer or something.. maybe even if all they want is for me to come in to a seminar as a "patient who has been on dialysis" to give my view of things and all that. I know I would totally be happy to do anything like that. I guess it all comes down to what everyone is comfortable with, and what could work within the particular rules.

I am sorry Marvin feels hurt because I would be too and I can understand absolutely since he's a KNOWN person to them not some strange guy off the street or anything. Still, I hope maybe going through the administrator (or even social worker??? might be a contact) might be the best way to approach it and get things going.

Good luck Marvin!!! :)
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« Reply #11 on: December 03, 2008, 03:51:44 AM »

I would LOVE to have Marvin.  Davita does have a "Village Greeter".  Almost always it is a former patient, or family member.  You have to go through some paperwork, like she said, no big deal.  They duties are exactly like you described.  Not sure if FMC, or other companies have it, but there shouldn't be any issue.  Talk to the Director\Administrator.  Again, I would love to have him, or anyone else willing to come to the clinic.  Any takers????
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« Reply #12 on: December 03, 2008, 04:07:56 AM »

I know this is not the same thing but here we have been given a list of volunteer positions available in my area, none of which have anything to do medically except there are two places that need someone to install hand railings and do minor repairs on patients and elderly residents trying to stay in their homes. Another position is errand running for the home bound from grocery shopping to post office and medication runs. My wife brought this list home from work so I'm not sure where you can obtain a list, but homeless shelters sometimes just need someone to be there a few hours at a time. Just my  :twocents;  No one is useless in this world, it is just a matter of finding something you enjoy doing. Bless Marvin's heart for his willingness to help others.  :thumbup;
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« Reply #13 on: December 03, 2008, 08:26:34 AM »

The Red Cross is a good organization.
Always calling/needing volunteers in my
part of the country. 

Marvin, thank you for trying to pay it foward.
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rose1999
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« Reply #14 on: December 03, 2008, 12:56:55 PM »

Well if they don't want Marvin you just send him over here to me  :2thumbsup; 

Aw but I hope he isn't still hurting, I agree with others that there are probably insurance and confidentiality issues but surely they could have explained that.  I hope he will try again but perhaps approach someone else this time, a director, or manager say. 

Big hugs to him for trying  :grouphug;
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« Reply #15 on: December 03, 2008, 01:12:27 PM »

Hi, petey!

May I first say your M arvin is quite a guy.   :clap;

Anyone who is on dialysis and is willing to spend their
free time giving a little help to others that are on it sure
is very very special.

When my hubby first went on and I was completely out of
my mind, and used to drive him back and forth, how I would have
appreciated just having someone like him just to talk to!  I can only
imagine what a comfort it would be, not only to the patients, but also
caregivers and families, also who are in those waiting rooms.

You mentined Davita in Wilmington, NC  That is where my hubby goes
when we visit our daughter in Wilmington

I have to say again, you have quite a fella there

Anne
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kitkatz
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« Reply #16 on: December 03, 2008, 02:54:06 PM »

Marvin can come dust my house for me!  :rofl;
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #17 on: December 04, 2008, 06:18:25 AM »

Marvin can come dust my house for me!  :rofl;
Excuse me but there is a queue and I was first (and you know how we Brits love a queue  :rofl;)
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« Reply #18 on: December 06, 2008, 01:13:16 PM »

Tell Marvin that he is more than welcome at our unit. We currently have 2 volunteers that do that exact thing, one of them is a suriving spouse of a former patient and this was his life for so long that he used to come and hang out. It was our clinic manager that suggested he volunteer. He did has loved every minute of it and would probably GREATLY love the extra help. Bring him on over.  :flower;
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kitkatz
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« Reply #19 on: December 08, 2008, 02:33:18 PM »

Marvin can come dust my house for me!  :rofl;
Excuse me but there is a queue and I was first (and you know how we Brits love a queue  :rofl;)

Fight ya for him!
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #20 on: December 08, 2008, 05:44:53 PM »

Marvin can come dust my house for me!  :rofl;
Excuse me but there is a queue and I was first (and you know how we Brits love a queue  :rofl;)

Fight ya for him!

Rose, if I were you, i would take this under advisement.  Kit has a BIG STICK!!!  She would knock the guts out of any British queue!!
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« Reply #21 on: December 08, 2008, 06:21:34 PM »

What a guy!!  I thought Davita encouraged that sort of intaction.  Strange, but I thought I had read that in one of their journals.  Too, a big loss for the patients.  He is a keeper!! :guitar:
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« Reply #22 on: December 08, 2008, 10:25:04 PM »

Marvin can come dust my house for me!  :rofl;
Excuse me but there is a queue and I was first (and you know how we Brits love a queue  :rofl;)

Fight ya for him!


Rose, if I were you, i would take this under advisement.  Kit has a BIG STICK!!!  She would knock the guts out of any British queue!!
:rofl; I'd hate to get on the wrong side of that stick, how about I borrow him if ever I get over to the USA and Kit looks after him for me meantime?????? What do ya say Kit, do we have a deal??
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« Reply #23 on: December 22, 2008, 04:59:08 PM »

Only if he takes care of me first!  :rofl;
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #24 on: December 22, 2008, 10:50:31 PM »

You naughty girl  :rofl;  :rofl;  :rofl;
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