I’m a dialysis patient. I have been on dialysis since 2008. I advocate for my fellow dialysis patients through the ESRD (End stage Renal Disease) Network of Texas and DPC (Dialysis Patient Citizens). I visited DC in 2011 to lobby Congress about the issues facing dialysis and kidney transplant patients.
I am extremely interested in advancing patient education and patient-centered care. Many of my posts are about various aspects of dialysis in an attempt to share what I’ve learned over the years. If you have something to share, feel free to add to what I’ve posted.
I post regularly on Twitter using this same name, DevonTexas.
DevonTexas 
I just read about your blog on the e-newsletter for the American Association of Kidney Patients. I am curious; since you’ve been on dialysis since 2008, have you considered a transplant? If not, I would suggest exploring that possibility. I have had an ECD transplant since 2008 and am doing very well. Meanwhile, keep up the great work! Linda (age 72), umbach.linda@gmail.com
Thank you Linda for your comment. Yes, I considered a transplant but there are many medical issues in the way that make it impossible. So, I’m quite content to do dialysis. I considered home-hemo but I can’t maintain a sterile environment with two dogs and a cat that think I’m the center of the Universe! LOL
Hi Devon Texas:
Thanks for following my blog and listing it on your sidebar too. I met a friend through a meditation group who was introduced to meditation from a meditation practitioner who led meditation instruction to dialysis patients. While sitting connected to their dialysis machines, the patients were able to meditate and be still. This helped them be more accepting of their reality and be another “treatment” in their healing process.
You may find this post an interesting read:
http://thestillspot.wordpress.com/2012/02/01/is-stillness-a-remedy-for-what-ails-you/
Blessings of peace, love and abundant joy!
Hi there. Great to find such a comprehensive blog about dialysis. My 8 year old son has been on dialysis since May 2012, first on PD at home now hemo via a permcath at hospital. We’ve had our fair share of challenges along the way! Will follow you with interest. All the very best to you. (ps you can view our blog at oknak.wordpress.com if interested)
Howdy, thank you for visiting American Male hope you come and visit again soon!
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Wow a very professional and informational blog that i am finding very interesting.I have mentioned your blog to a group of my renal center nurses and doctors as well as my home dialysis nurse (instructor).Of course in Canada here our laws and health care system are very different from yours but it is very interesting to see different points of view.Thank you for listing my simple little blog in your following sidebar.I will put a link to yours on my blog as well.Thanks,keep up the good work and take care.Mike.
Hi, Your website is very informative and has reduced my fears a little bit as my mom is preparing to start dialysis. Yesterday, we just learned about the cost of dialysis. She has a medicare advantage plan that will cover a lot of it, but the out of pocket maximum is still a lot for her to pay. My understanding is that she cannot get any other insurance plan due to a pre-existing condition…do you know if this is true? have you had the same experience? Thanks!
Hey Angela! If she has medicare, she should have a Medicare program to (like Advantage) to pay the co-pays. Medicare covers 80% and the Advantage should cover the 20% co-pay. Now, here’s the really good part. If she can’t afford the extended coverage or the out-of-pocket, have the social worker contact the National Kidney Foundation and they have a program that will help with the payments. If the social worker won’t or can’t, contact them yourself. Call toll-free at 1-855-NKF-Cares (653-2273). Also, about the pre-existing… under the Affordable Care Act (Obamacare) health insurance providers CAN NOT deny coverage for a pre-existing condition. Please feel free to post more questions as you move along.
Thank you for your response! I’ve done a lot more research since I wrote my comment to you. I’m not sure if you have Medicare or not, but I figured I would let you know what I learned in case it might be beneficial to anyone else. You are right about the Medicare and Advantage part. As far as changing health insurance providers, I have spoke with several insurance companies and the social worker at the dialysis center and they said that ESRD is the one pre-existing condition that they can deny people for. So once you start dialysis, you can never change Advantage plans because no one else will pick you up. This has become a big issue as my mom lives in Houston and I want to move her to Austin with me due to her declining health. But she won’t be able to move because her Advantage plan doesn’t cover Austin and she won’t be able to get picked up on another plan with ESRD. Of course, she could drop Advantage and just have original Medicare, but then she would be paying 20% of the dialysis costs with no out of pocket maximum. I don’t know what original medicare drug coverage and doctor/hospital copayments are, but I’m assuming they are not as good as Advantage plans. So…I’m kind of stuck in this situation but am at least glad that she is currently on an Advantage plan and they can’t drop her because or ESRD.
I am contacting some experts to see what is going on. More next week.
As I said, I’m contacting some experts about this so I can better understand your mother’s predicament. I’ll get back to you on what I discover.
Hello Devon and Angela,
My husband has been on dialysis since 2008 also in may and like you he chose not to have a transplant! he would not have to wait long for one as he gave his mom a kidney in 1987 so they consider him special and he could be placed at the top of the list but he opted not to have one! He has medicare as his primary and blue cross blue shield as his supplemental and was not denied for either. he was however denied for disability because he did not earn enough credits prior to becoming ill and the government claims that 36K a year is too much for me to make for him to qualify for it through my record so we had to pay the premiums out of pocket which bankrupted us! We did find the AKF, through my own research, and they do pay his premiums now and it is such a blessing! Now the only out of pocket are his medicines which thanks to Obamacare, are very minimal!! When we tried to bless other patients the center told us we could not do that as it was against the rules so we tell them on the side! what are the social workers there for if not to find this kind of help for patients? It infuriated me to no end to know that so many don’t know about these programs! Thanks you for this blog!!
And thank you for reading it. It’s shameful how some social workers are either uninformed or lazy when it some to getting the best of their patients. I’m so pleased and thankful to have a Social Worker who goes above and beyond. And she is responsible for TWO centers! Maybe three!
Hi, I have a question on private insurance for dialysis. I just got my permanent residency and would like to apply for private insurance which covers dialysis and diabetics. I am from NJ and do not qualify for medicare.
Is there any information you can share to guide me in the process. Thanks
You should go to HealthCare.gov and apply for coverage there if you don’t have health insurance through your employer. Also, keep in mind, you must migrate to Medicare after 33 months on private pay insurance. At that point, you can also get Medicare Supplemental insurance to cover the 20 percent not covered by Medicare. (Medicare only covers 80 percent of your medical costs.) If you are currently on dialysis, talk with your center’s Social Worker and hopefully you’ll get good answers to your insurance coverage questions.
I wrote about “Dialysis and Medicare” in a blog and also see “Dialysis and the Money” for information about paying for dialysis.
Hi Devon, I am a DPC – Dialysis Patient Citizens/Ambassador. We had our last conference call for this year a few days before Christmas. I was told about your site! I am not a dialysis patient, but my husband is. I am at every dialysis session with him, and I have taught myself so much about dialysis, diabetes, neuropathy, the eyes for a diabetic patient, and of course a good foot doctor. I can talk intelligently to all doctors and staff. The Social Worker where Mike has dialysis encouraged me to do this as she sees how much I love all the patient’s that I have come to know over the past two years. Also, being tested and compatible to give my husband a kidney, then to be told I cannot due to high blood pressure, cysts on my own kidney’s and sleep problems. I knew I couldn’t just sit there for 4 1/2 hours three times a week and do nothing. I started a facebook page for Mike called “KEEP THE MUSIC PLAYING – HOPE FOR END STAGE RENAL FAILURE.” I found facebook to be more of a detriment rather than help. People read what you write, have no input, and start to add jokes and areas that have nothing to do with “END STAGE RENAL FAILURE.” I would like to start my own BLOG, too! I am in the process of contacting legislators here in Nassau County, New York and trying to get certail bills passed into LAW. I pick up all material at dialysis and read it and try to get the message out there. Some stories regarding Medicare, Health Benefits are horrendous, scary, and makes me so angry that people have to worry about health insurance when all their lives they worked and put their own money into the future. I understand that CONGRESS by passed a lot of the BILLS that I am trying to get passed as LAWS. Also, I want dialysis patient’s to know that dialysis is not a “DEATH SENTENCE,” but actually a “GOD SEND,” until something miraculous comes along such as a kidney. I have my husband Mike on a site called matchingdonors.com. I have contacted the American Kidney Foundation and the National Kidney Foundation. I am also writing to the Commissioner of Health here on Long Island, as well as our NYS Nassau County Executive, Edward P. Mangano. The Saturday before Christmas there was a patient who waited two hours for her ambulate to pick her up. The driver showed up, apologized, but told us he had to drop off two siblings, they were age 4 and 6. This just broke my HEART AND BLEW ME AWAY. CONGRESS MUST LISTEN TO US AND LISTEN GOOD! I hope I can continue to keep in touch with you. If you can offer any help in my starting a BLOG I would greatly appreciate it. Let me wish you a Happy, Healthy and Peaceful ‘2015! May it be a wonderful year for everyone!!! Sincerely, Lillian Nugnes – Massapequa, New York P.S. I wrote to Jane Hanson who was originally an anchor on Channel 4 News here in New York. She is now host for the Catholic Telecare here in Rockville Centre, New York. I wrote to her and told her my story………..they had an episode on diabetes…..and I told her I surpass diabetes, and began my story. I hope I get positive feedback? Also, I did write Peter King as well.
Howdee! It’s nice to see another informative website on dialysis. When I was doing nocturnal dialysis five years ago, I had a blog (nightynitedialysis.blogspot.com) and I was surprised at the reach it had. Keep up the good work!
I couldn’t find a blog with that name specifically but I did find this one, http://niteynitedialysis.blogspot.com/ and it could be very helpful for a patient seeking information about nocturnal dialysis.
That’s the one. Sorry about the typo. 😀 I need to update the site with my last foray into nocturnal, which lasted all of one night.
I would certainly appreciate that. Let me know when you do.
I applaud you, Devon, for passing on your hard-won knowledge to everybody else on dialysis. I don’t know how you’ll take this, but if your kidney failure was due to diabetes or high blood pressure, and not something else like polycystic kidney disease, IgA, FSGS, etc., I could have helped you stay off dialysis. In 2002, I published how to reverse early-stage diabetic and hypertensive kidney disease (1), which cause 90% of dialysis. If your doctors had known about my paper early enough in the course of your kidney disease, they might have been able to keep you off the machine. The big problem is that NOBODY knows about my paper yet (2). Dialysis enriches so many people that nobody in healthcare wants to get rid of it. If your compassion extends to the millions of people not yet on dialysis, I hope you’ll join me in telling them that their kidney failure can be delayed, and maybe even prevented altogether, provided that they act in time. All they have to do is contact GenoMed.com for a creatinine above 1.5.
Best regards, Dave Moskowitz MD
1. http://www.genomed.com/pdf/diabetes.technology.therapeutics.pdf
2. http://www.genomed.com/images/guyot_dec09nl.pdf
I understand you could have helped but that’s why I started this blog. Too little information is disseminated while something can be done proactively to reduce kidney disease progression while it’s in the early stages. I was never told what I could do. I was only told my diagnosis. We must begin educating the patient during early onset rather than after they are on dialysis with ESRD.
I’ll take a look at your work.