Dialysis from the sharp end of the needle

Dialysis & CKD Blog Report 6/18

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 6/15.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle has a blog report.
• Kamal Shah's Blog Kamal is excited that Fresenius plans to get more people onto home hemo in India.
• Kaply, Inc. Tracy finds out that bundling services lowers her internet cable bill. (Did they learn this from Medicare, you think?); has dialysis day off, plans to sleep in.
• Drinking my way through Trader Joe's Wine reviews Estola Reserva La Mancha which she enjoys with Lavash pizza. (Yum!) 
• Toastiest posts a video in which he describes that he feels exhausted and despondent.(Maybe it's time to go on dialysis.)
• Hasten down the wire Michael's fistula failed and he got a tunneled catheter, now he has to start all over getting his fistula used to large needles again; writes about Risen and Lichtblau's report that the NSA is believed to have overstepped its legal bounds in reviewing e-mails.
• Becky Perry had a good lab report at the doctors; book review of Never the Bride; finds that e-mealz helps her plan her weekly menus; she wants suggestions on how to use protein powder in baking (Google it, Becky.  There a gazillion recipes on the web); how she chooses homeschooling topics; gives suggestions on how to encourage people with chronic illness.
•  Life on dialysis ... and now life after my transplant! Holly meets with the Dept. for Children's Schools and Families to promote organ donation education in schools; has eight movie theaters committed to making organ donation pamphlets  available during the run of "My Sister's Keeper."
• On the Road to a Cure announces a Walk for Lupus Now event in Minneapolis, June 21; celebrates its second year, has done 300 posts (Congratulations, Lupus Foundation, for reaching out to so many.)
• Transplant Alliance has transplant statistics from the  London Health Sciences Centre.
• Kevin’s Blog Kevin plays in a golf tournament and notes how much more energy he has since his transplant.
• Disability Prejudice And Civil Rights Watch Subtle Cues You Might Be a Good Mental Health Professional; acknowledges his mother's 86th birthday with Jackson Browne video ""I'll do Anything" and a Muslim song about honoring your mother; has trouble getting his transplant meds in a timely manner while in the hospital, everyone, including doctors, is uncooperative. (I understand, trying to get insulin when you need it is a hassle, too.); "Peace Train" by Cat Stevens video; expresses frustration at the rejection  experienced at church nd elsewhere.
  
• Precious Bodily Fluids wants and then gets his iPhone software.
• Renal Fellow Network shares a study showing serum free light chains were found to be much more sensitive than either serum or urine immunofixation, and were successful in identifying several patients with AL amyloidosis who had undetectable paraproteins by SPEP & UPEP. (Way beyond my science level but hopefully not to the doctors who read this blog.); discusses the problem of fibrin sheaths clogging tunneled catheters.
  
• Uremic Frost A study shows renal stenting not helpful in renal stenosis; Dr Franz Messerli calls thiazides a lousy drug and disputes their effectiveness; Simon was interviewed about CKD and related issues. It will air 7 am this Sunday morning June 21st on 106.7 FM in NY... or it can be heard here.
• Renal tsar's blog discusses a study that identifies systematic failings in the management of Acute Kidney Injury; writes about the importance and implications of an NHS report on developing funding for high quality renal care service.
• Diario de diálisis Crónicas (en Español)  Journal dialysis - Chronicles (Google translated from Spanish  ) His unit gets a new TV, finally!
• Free range fish sticks has closed down his blog for the time being. (God bless. We wish you well and will miss sharing your story.)
• Neophron's Senescence notes the passing of 87 year old, Roger "Bill" Terry, Tuskegee Airman.
• pkdmom2five lets her husband haggle with a vacuum cleaner salesman, daughter is healing from MRSA but still in hospital, hoping she will be out for Father's Day.
• My Wife Has Lupus - Support for individuals whose family or friends have lupus His poll shows the majority of his readers have lupus, contemplates changing the blog name to appeal to all with lupus.
• Chronicals of the PD Warrior links to an article about freeing Iran.
• Living with PKD posts on the trials of potty training a 2-year old, worries whether baby's constipation is related to PKD, it's not.
• Nathan's PKD after being told it would be unlikely he would father a child, Nathan and Jenny are pregnant and expect to give birth in Dec. 2009. (Congratulations!  We wish you both joy, an easy delivery, and a healthy baby.)
• Unfiltered Hope goes tomorrow for first blood test for antibody issues in the pre-transplant workup.
• DailyHemo - Home Dialysis Advocates New Video: Do CKD and ESRD Patients Understand Their Disease --Jeffrey S. Berns, MD, from the University of Pennsylvania School of Medicine, discusses a study that points to alarming gaps in the knowledge of CKD and ESRD patients, particularly comments on mortality contributed by tunneled dialysis-catheter use.
  
• Berns on Nephrology Video blog entry on using dipyridamole plus aspirin in dialysis patients with newly placed AV grafts.
• Biologically Safe Water Filters a Miami hospital has contamination and deaths from pseudomonas, use of Nephros Dual Stage Ultrafilters  would have been a less expensive fix and a proactive approach.
• Kidney Community Emergency Response Detailed emergency preparation info. for hurricane season.
• Renal BizBlog Obama takes aim at patent protections that drive up drug costs and make generic equivalents unavailable.
• The Renal Unit Latest renal tweets, news, and blogs.

Dialysis & CKD Blog Report 6/15

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 6/12.   If you have or know of a blog that should be on the list let Bill know. Comments in parentheses are my reactions or opinions.

• Dialysis from the sharp end of the needle Peter learns he is training for home HD in the same unit and with the same nurse that trained Bill "Epoman" Halcomb.  He pays tribute to the the late, creator of the I Hate Dialysis website and forum.  (Epoman was my hero when I first started to learn about HHD and NxStage.  I loved the IHD site.)
• Kamal Shah's Blog Exhausted by a hard day at work, Kamal is refreshed by a swim in the rain; shares what he just learned about the home HD programs in South East Asia and can have nocturnal dialysis arranged so he can visit Phuket.
• Kaply, Inc. Tracy's blog friends surprise her with a Kindle, she feels loved. (That kind of support and friendship helps make life worth living.)
• Toastiest His doctor tells him anemia is getting worse; and a photo of his dog.
•  The Adventures of Stacy Without An E Stacy mourns the death of a beloved uncle, regrets not having given him more support when he, too, went on dialysis; challenges readers to post sentences with 26 words alphabetically;  is disgusted  by the state of the bathroom in the dialysis unit. (Yuck to the max!  Stacy, it's time to take photos  and report it to the Dept of Health, or the  Medicare Network, or whomever in  CA oversees dialysis units.)
• Jack's Kidney Adventure Jack's post-transplant lab visits are becoming routine while he is actively engaged in living his life to the fullest with work, scenic driving, and friends.
• Life on dialysis ... and now life after my transplant! updates her very happy, busy week, and she got black and blue from multiple attempts at blood draws.
•  On the Road to a Cure has a video of Dr. Bruce Richardson discussing his hypothesis as to why men develop lupus.
• Transplant Alliance has had a difficult month with lots of symptoms, can't wait for tx doctor appointment.
•  Bud's Ramblings enjoyed his Forum reunion.
• Disability Prejudice And Civil Rights Watch
• Precious Bodily Fluids is writing abstracts for ASN, has a great data set on geriatric patients in a structured CKD clinic, needs to define stable renal function.
• Renal Fellow Network Macroglossia (enlarged tongue) is a complication of amyloidosis; a trick for diagnosing ethylene glycol toxicity; a case of murder by ethylene glycol poisoning turns out instead to be a rare genetic disorder.(This sounds like a case out of Law & Order, or House.)
• Uremic Frost Alonzo Mourning helps get an Access to Care Act passed in Florida that will let patients under age 65 with CKD5 obtain Medigap insurance if they already qualify for Medicare. (Yay, Florida and Bravo, Alonzo!); an amusing and educational music video called "Nephron's Paradise."; and 10 ways to protect your kidneys
•  Neophron's Senescence posts a photo and information about the airplane that sunk 3 Japanese carriers in the Battle of Midway; a Happy 45th Birthday post to his son, John.
• My Wife Has Lupus - Support for individuals whose family or friends have lupus updates the look of his blog.
• My Chronic Kidney Disease has eliminated wheat from his diet, his research has led him to think of the body (including the mind) as a single organ and that symptoms in any part affect all.
• Encompass Network Partners What leg ischemia is and how to know if you have it.
• Kidney Diet Tips has an article about kidneys and Vitamin D.
• Bridge of Life shares photos from a DaVita Medical Mission to a children's HD unit in Guatemala City.
• History of Nephrology History continues with an article about William Koff's first hemo machine in 1945 (Take a look at that monster as compared to what we have today!); and the unsung story of early peritoneal dialysis.
• Writings along the cave walls - Ashbat's Lair describes difficult customers at her workplace.
• Renal PatientView Blog announces that it has reached 10, 500 registrants.
• The Renal Unit Latest renal tweets, news, and blogs.

Bill “Epoman” Halcomb and Rita

By Peter Laird, MD

photo by Trina Halcomb

Sitting on my “throne” here at the Kaiser Permanente Sunset Home Dialysis training room, the topic of other people with renal disease who write on a blog came up. Rita my training nurse, stated she had one other patient who wrote on a website as well. She couldn’t recall the title exactly but it was “I hate” something or other. Being a fan of I Hate Dialysis (IHD), I immediately stated, “you mean you trained Bill “Epoman” Halcomb right here in this chair?” Of which Rita immediately stated, "yeah that’s it."

I never met Epoman before his much untimely death, but like so many others, Bill Halcomb has touched my life by the legacy he left all renal disease patients on IHD. I had only seen a couple of the pictures of Epoman on IHD, and only briefly reviewed some of the tributes to Bill Halcomb after his death in 2007 at the age of 35, but sitting in the same chair where he had trained touched me to learn more of this life cut short, yet he still lives in the minds and memories of those that knew him. Interestingly, the most touching tributes to Epoman may have come from those that joined IHD after his death:

monrein
I'm sitting here bawling my eyes out for someone I never met, not even in cyber-space as he left before I found IHD, but someone for whom I am profoundly grateful. Grateful for Bill's vision, his spirit, his courage, his values and above all his "realness". He was a true "mensch". May he Rest in Peace and my condolences go out to his family.

annabanana
When I first found this site a few months ago I read a lot...but missed that Epoman had passed on. I read practically everything he had written and when I found out he had passed on it was such a shock. I cried like a baby. I felt as if I'd lost a family member and I hadn't even joined this forum yet. He has left such an incredible gift! Here's to you, Epoman!

My heart goes out to “Epokid and Epowife” as I read the tributes to Bill “Epoman” Halcomb. Not only has he left a loving legacy to a family that I am sure misses him with all of their hearts, yet Epoman lives on in my own life as I daily read over all of the new posts added since the last time I was on IHD, which is usually at least two or three times a day. Epoman is a daily part of my life and an inspiration to all those who suffer with renal disease. Epoman not only made a difference, he still is making a difference even after his death. What a legacy of love, caring and sharing from a man I will never meet on this side of eternity, yet I seem to know him any way as a close and dear friend.

Let this be just one more loving tribute to a man that will continue to make a difference in my life and many others that never had the pleasure to know Epoman in person . The influences in life that one man can have over those that he has never met is a legacy that we all in one way or another leave for those that are left behind. Rita remembers fondly her time training Epoman and Epowife and regrets the life cut short by such a prevalent disease. As I was bombarded with all the different people doing intakes for my home dialysis training, I was asked a simple question of “How tall are you?” My answer was, “Much shorter than before I started my training, because every time I turn around, Rita is tapping her hands and telling me “chop/chop” to get a move on.” I wonder how many times Rita told Bill “Epoman” Halcomb “chop/chop” as I sit atop my “throne” here in this somewhat cramped training room.

Bill, you have touched my life through IHD in so many countless ways, and now through Rita and the same dialysis chair that you sat in for your NxStage training, I am drawn even closer to you, may your soul rest in peace. Your friend and fellow renal disease sufferer, Peter, aka Hemodoc.