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  • dac0214
    replied
    You can just go over to Ihatedialysis.com, and complain like all the others there do....

    Leave a comment:


  • eifortcoop1
    replied
    I just found this thread. My clinic let us, as patients, start a support group, but it is poorly attended. We can only do it on Sunday afternoons. We have to do it at the clinic so it can only be for patients there. They don't let us put up any posters or flyers about the support. They won't hand out a flyer to patients. I'm having issues with my clinic and feel uncomfortable talking to other patients about my issues when we meet at the clinic and the social worker is there and a nurse comes in and out of the meeting. I don't understand why it's such a struggle to find the support we need as patients.

    Leave a comment:


  • JanieCie
    replied
    mcintk2, I know of a number of advocacy groups - you can do a search. The one that comes immediately to mind is the American Kidney Patient nonprofit. I also started a nonprofit for supporting ESRD dialysis patients but it is not an advocacy Foundation since many others do that. I am happy to send you any resource information we have that may be useful. Feel free to visit us at www.esrd-patient-support.org.

    For Junior member and others - there is a virtual support group for dialysis patients. Contact us at support@esrd-patient-support.org and I can send you the information.

    Leave a comment:


  • mcintk2
    replied
    To Junior member. I feel your pain we really NEED support groups. The National Kidney Foundation has them in many locations. Also your husband may be able to get a Kidney from a living donor via a family member or friend. There is also a Kidney Exchange Program. Hopefully your Social Worker or Nephrologist can help with infromation.

    However I am interested in Advocacy for Dialysis Patients or Patient and Family Advocacy Groups and have trouble finding any existing groups. We have repeatedly had problems at different hospitals, when going to the ER with fluid overload. It is commonly misdiagnosed as Pneumonia, so while we are inpatient, we miss our regular dialysis treatment and the inpatient dialysis is delayed by the consulting Nephrologist. It is very scary for a patient who cannot breath and dialysis is the only treatment option, yet it is denied or delayed for anywhere from 12 to 24 hours. This is just one example. As we all know, dialysis patients have their own unique problems, from electrolyte problems, to high potassium, dehydration, fluid overload and other complications. Kidney patients also have to have adjusted doses of common medications. Many ER Dr and Hospitalist don't know this. They treat and diagnose kidney patients like "normal" every day non kidney patients. This can be very dangerous to Kidney patients. I would LOVE to find an agency or group that can help advocate for patients, during hospital stays or for unique situations that arise at our Dialysis Centers. Does anyone know of any PFACs or Dialysis Advocacy groups or Organizations.

    I just heard about Clinical Trials for a Bionic Kidney at University of California, San Francisco and Vanderbelt U. I think through the Kidney Project website.

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  • Mibarra6681
    replied
    I agree . We need to set up support group too . We need positive and I know it’s not easy but put our faith in god

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  • susanb06907
    replied
    Hello:

    My husband started with dialysis about a month ago. I am trying to find a support group in the Connecticut area that meets quarterly, even in different areas of the state to give everyone a chance to attend.

    I am sure this meeting would be well attended. ..

    It seems like divita could start one since they have the records of patients. I do not understand why not, since cancer,, ALzheimers , and other diseases have such groups. It is the job of divita to get these groups going in all fifty states since they have the records of all patients and could send them a note. They also have I would think qualified staff member who could run such a group.

    This should be a SERVICE for not only patients partners but patients as well. I am not on facebook and feel that this should be done in a group setting where people could meet each other and share their experiences.

    This is a service that SHOULD BE OFFERED.

    Thank you

    Susan

    Leave a comment:


  • KelseyAtDaVita
    replied
    Originally posted by Rrogelio View Post
    I am 19 and am very depressed with my home dialysis .
    Hi Rrogelio, I just wanted to reach back out and welcome you to myDaVita!

    Depression can be common among CKD and dialysis patients. Have you had a chance to meet with a local social worker? They can help provide support. Here is more information: https://goo.gl/zAAE4n.

    I hope you have a nice weekend and wishing you the best!

    Leave a comment:


  • Rrogelio
    replied
    I am 19 and am very depressed with my home dialysis .

    Leave a comment:


  • Russmeri
    replied
    Is anyone interested in a group for sharing online - maybe on Facebook - I see some have attempted to be started but none seem to have worked - when I was a caregiver for LBD and later a part of organizing the LBDA we found an online group very conducive to sharing - the nice thing about it was free form posts with responses in a chronological order. - all the posts could easily be searched with one search subject for something relative to one's current problem or experience

    Leave a comment:


  • KelseyAtDaVita
    replied
    Originally posted by SunshineRay View Post
    Hello everyone.

    American Association of Kidney Patients has information on in-person dialysis groups on their website. ( aakp.org)

    I am also looking for a meeting closer to me in my local area. My plan is to call/visit the local dialysis center to hopefully find this info.

    If that doesn't work, then I will use craigslist (events) to invite interested persons to participate in a telephone conference call (set up through freeconferencecall.com ) Once there is enough interest, we'll go from there to set up a local in-person meeting.

    I'll post here from time to time (maybe weekly-ish) in order to let you know how it's going, and what I'm learning through this process.

    Best wishes to you all.
    Hi SunshineRay! Have you attended a no-cost Kidney Smart class, where you can learn more about kidney disease, treatment options, diet and more? Find one in your area here: http://bit.ly/1LjgVbx. It's also a great place to connect with others who are going through the same thing as you. I hope this helps, thank you!

    Leave a comment:


  • SunshineRay
    replied
    Hello everyone.

    American Association of Kidney Patients has information on in-person dialysis groups on their website. ( aakp.org)

    I am also looking for a meeting closer to me in my local area. My plan is to call/visit the local dialysis center to hopefully find this info.

    If that doesn't work, then I will use craigslist (events) to invite interested persons to participate in a telephone conference call (set up through freeconferencecall.com ) Once there is enough interest, we'll go from there to set up a local in-person meeting.

    I'll post here from time to time (maybe weekly-ish) in order to let you know how it's going, and what I'm learning through this process.

    Best wishes to you all.

    Leave a comment:


  • radiolady
    replied
    I live in Lincoln, Illinois and am looking for a support group. I'm not above starting one. My husband is stage V renal failure and has dialysis 3 times a week. He's been on the transplant waiting list for seven years. He's getting discouraged. Can't say more right now without crying. He got upset and made a rash decision and took himself off the list because he has a new nurse who told him he's at the bottom of the list again. I couldn't believe he did that! So he's going in tomorrow to talk to someone. Whew! I hope I'm making sense, this has been hard Support groups are needed that's for sure. If anyone knows of one in my area please feel free to let me know. I'm here if anyone needs to talk.

    Leave a comment:


  • CinPin
    replied
    I'm not yet on PD and would love to find an offline support group in the Atlanta area. The forums often appear bleak, and I badly need to see other people who are facing each day with positive energy and a will to thrive, even in the face of CKD.

    Leave a comment:


  • Loganwon
    replied
    Originally posted by 1scaredycat View Post
    I think it is a good idea for patients but as for the doctors IMO it is just their job and they want to go home and not dwell on their work after hours. I am not on dialysis but would like to see a group in my area for at least an exchange of info. and to meet people in the same situation. I have thought of starting my own group.
    If you ever need motivation to avoid dialysis go to a dialysis center and ask for a tour. They are such a painful place to visit, just imagine the people that have to go there 3 times per week. That was one of the biggest factosr for me to start PD, I could not stand all the misery at the centers any longer. When my PD gives out (if I have not gotten my transplant yet) I will start on Home Hemo dialysis.

    Also, again not trying to be argumentative, but until you, or anyone, has to go on dialysis; non dialysis requiring CKD is easy living. I know, I dealt with CKD for over 11 years and the day I had to start dialysis my world changed completely.

    Don't get me wrong, every time you do a dialysis treatment it is saving your life. But who wants to be forced to save their life 3 - 7 times a week? That is one reason some people stop dialysis and let the disease take their life, I have seen that happen also and it is a painful way to die.
    Last edited by Loganwon; 12-05-2015, 08:27 AM.

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  • 1scaredycat
    replied
    I think it is a good idea for patients but as for the doctors IMO it is just their job and they want to go home and not dwell on their work after hours. I am not on dialysis but would like to see a group in my area for at least an exchange of info. and to meet people in the same situation. I have thought of starting my own group.

    Leave a comment: