YOU CAN HELP kidney patients, transplant recipients and organ donors!
Simply join our Advocacy Center, and you will receive periodic e-mails when action is needed on specific legislation relating to kidney disease, dialysis, transplant and donation. All you need to do is sign up to receive these e-mails, click on the link, and you will be taken to a page with a pre-written (e-mail) letter that is ready to send to your Members of Congress. It’s that easy! If you wish, you can add a personal note to your e-mail letters to tell Congress your story and how this legislation will personally impact you.
Thank you for advocating for yourself and others like you!
Advocacy in Action 
My son just received a new cadaveric kidney in July of 2013, it’s very important for him to be able to afford his immunosuppressant medications. His meds work with his body to keep from rejecting the new kidney.
My grandson was born with Chronic Renal Failure. We (family) are doing prevented care right now. We foley Cathe him every night. I have spoken with the manufacture of the foley catheter and was told they are ABSOLUTELY NOT to be reused. The insurance company wants to pay for one a month!! We are average individuals and paying out of pocket is not affordable. They range from 32.00 and up. Does anyone know where we might get some help.
Hi,
I am unaware of any specific organization or company that would help with this, but there may be help out there. I would suggest talking to your grandson’s doctor to see if there are financial assistance programs available for Foley catheters.
Best wishes,
Erin Kahle
National Kidney Foundation
Constituent Services Director
family can try medicade in the state they live in if grandson under 18 parent can try it need doctor report cather company denied letter his birthday if the boy missing due to health get a letter from school legal aid in the state may be able to help
I have a buddy that had kidney cancer, and after a few events while in the hospital. they over dosed him on morphine and damaged what would have been a good kidney. over the last few years he was on dialysis, and also went threw prostate cancer. a good kidney became available for transplant. and he had in done. now the sad part he wasn’t aware of was the cost of the medications and how long insurance will help pay for them. something is not right will having to pay for a hospital mistakes. he worked for the city of Minneapolis for 40 + years. is there someone he can contact to help with this.
Hi Bob, He can contact our NKF Cares Patient Hotline to speak with a trained professional who will answer questions and listen to concerns. Call toll-free at 1-855-NKF-Cares (653-2273).
Best wishes,
Erin Kahle
Constituent Services Director
National Kidney Foundation
I am in need of ultrasound or ct scan for my kidneys and ureters-I have very stretched out bladder and some hydronephrosis – I empty bladder every 2 wks at urgent care, and urologist I see I don’t feel comfortable with-help! She says I could have outpt surgery asleep to stretch urethra and look inside with camera? I would be asleep for this-I need ultra sound but she says no? I am senior with medicaid and don’t know what to do-need advocacy. Thanks-Madison,WI.
Hi Rose, Have you reached out to our NKF Cares Patient Hotline? You can speak with a trained professional who will answer questions and listen to concerns. Call toll-free at 1-855-NKF-Cares (653-2273).
Best wishes,
Erin Kahle
Constituent Services Director
National Kidney Foundation
Thanksforresponse.
Please help my cousin live by getting her a kidney…
I am a 38year old w/renal failure since this
Year March.Iknow not much about this illness
I need to learn all that I can.your assistance is
Highly needed.
I’ve suffered with calcium phosphate stones for about ten years. Had seven surgeries to have them removed when they cause complications, now I’m averaging two surgeries a year.
I also have Sjogrens syndrome.
The last time I saw my nephrologist, she walked into the room with my test results and laughed because they are not able to help me. She explained all my counts are normal, but my citrate is an 80 when it should be over 300. She took me of potassium citrate and asked I come back for a cat scan in six months… I’m very frustrated.
The nephrologist also mentioned a condition called Randall’s plaque. Now I have researched this online before she even mentioned it. When I asked if they could do testing to see if that’s what I have, she said she “thinks” that’s what is going on, but its new to the medical field and they are not a research clinic.
I had my left kidney cleaned out in May 28, 2014. They injected dye to make sure they had everything. Now I have a 5mm stone in my left kidney. They don’t know how it got so large so fast. I’m in pain every day. They say there is nothing they can do.
Is there a clinic you would recommend? Is there treatment? Can you help me?
Also, I am from Wisconsin.
Need help paying health insurance premium for supplement plan
Hi Carolyn, thank you for your comment. I have forwarded your concerns to our NKF Cares Patient Information helpline, nkfcares@kidney.org, and someone should be in touch with you shortly.
Medical abandonment
attention: NFK;
I am looking for GMs support applying to the online grad program. I’m also looking for professional Council who can help me with a medical abandonment case @ Tsylor Fersenius Medical Center here in Detroit Michigan…
Marcel Leonard
project designer
Marko Design Group LLC
Marcocito2001@aol.com
313.574.2736
I have a son who is 24 years old,t had been 7 years he has has loin pain heamturia syndrome ang IGA, these are to very rare kidney disease which there is no cure are treatment.It is hard to find a doctor that even knows about lphs.which is pain every day of your life ,like passing a kidney stone every single day.nephrologist and pain management doctors do not know much of anything about this and how to treat it,it requires strong pain mess just to try and make through the day and when you are young and with the DEA coming down on doctors prescribing pain meds it is almost impossible to get the relief you need.myson ends up in the emergency room at least 2 times a month,and that is not much help.with lphs you urinate blood and blood clots and debris,A lot of times he has to self Cathera himself and no one can tell us why. It is a horrible way to live,well you are alive but you have NO LIFE, you are in Constant pain and can barely get outs of bed,my son has lost 30 pounds in the last 3 mounts because he is in so much pain and we can’t find anyone to help.if anyone out there knows about this please contact me,we live in Golden Meadow,Louisiana,my email is donnacollins5@icloud .com
Hi Donna, thank you for your comment. If you’d like to talk with someone, our Patient Information Help Line, NKF Cares is available Monday – Friday from 9:00 am – 5:00 pm Eastern Time. Call toll-free at 1.855.NKF.CARES (1.855.653.2273) or email nkfcares@kidney.org.
Best wishes,
Erin
I would like to be a advocate or help in any way I can I have been in a very long four year fight for help from the state and have been denied my ssd for longer than that even though I have not been able to work or sometimes even function well Due to kidney disease caused by shuger levels being in the 400 range for over ten years I guess ct does not consider kidney disease to be a disability and I believe that needs to change
Thank you
Marta Hayles
Hi Marta, thank you for your comment. Please email nkfadvocacy@kidney.org with some information about yourself and we’ll let you know how you can be involved locally.
My sister In law had a stroke 3 years ago! Due to her having the stroke she has a trach to help her breath! Her health has gotten worse and now is need of dialysis! But the doctors are refusing her dialysis due to her having a trach. We are desperate and don’t know what to do. Please help!
http://www.bendbulletin.com/health/organtransplants/1389220-151/patients-denied-transplants-as-donor-organs-are-discarded
http://www.bendbulletin.com/health/organtransplants/1371249-151/transplant-centers-pull-back-to-avoid-sanctions
http://www.bendbulletin.com/health/organtransplants/1375026-151/transplantable-organs-go-to-waste
Medicare guidelines and enforcement having very real, if unintended negative impact detrimental to the circumstances of many awaiting a life saving transplant and their chances for a better life. Wasting viable organs and blackballing transplant candidates for not being an absolute ideal, perfect candidate is unacceptable and nothing short of criminal in my opinion. Creating an environment where patient well being is cast aside as a consideration of transplant staffs in favor of their concern for their own standing with Medicare is dead wrong. I submit this with complete understanding that some regulation is necessary and must be enforced. Still a serious problem.
I would love to support and be an advocate for living kidney donation. On August 16, 2017 I donated my kidney to my friends husband and it was the most amazing experience I’ve ever had. Most people shutter even at the thought of donating due to fear or lack of knowlwedge. I would love to help by telling my story to help bring more awareness and provide peace of mind to those who are on the fence about being a living donor.