Dialysis from the sharp end of the needle

Dialysis & CKD Blog Report 7/3

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 6/30.   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 Bill reports on how Singapore dialysis units are preparing for H1N1, hopes the US will follow suit; Peter writes a moving tribute to Kelli, a nurse, who worked with him and later, dialyzed by his side.  She passed away unexpectedly and became an organ donor continuing her legacy of life and giving. (Our hearts go out to you and Kelli's family on this great loss.)
• Kaply, Inc. Tracy''s arm pain increases, surgery isn't yet scheduled, wants to hurt upstairs neighbors; Tracy does some yelling at the personnel at the doctors office; surgery now scheduled for July 10 (Sometimes a little yelling gets things accomplished, I guess.), got a card she liked,
• Hasten down the wire comments on the story about the Washington Post offering health-care lobbyists access to members of the Obama administration, Congress, and Washington Post editorial staff for fees ranging from $25,000 - $250,000. (This is what we call health-care reform?)
• The Life of a 20-Something With Lupus celebrates Canada Day going out with her Mom.
• Becky Perry makes smoothies with frozen strawberries, orange juice and banana; has her lesson planning sheet available for downloading; a book peek into Be Hopeful by Warren Wiersbe; lists five blessings in her life; and a recipe for Skillet Enchiladas that her family loves.
• Jack's Kidney Adventure Jack gets a talking pocket watch to remind him to take his transplant meds on time; meets a former Fresenius social worker and they talk "shop," he enjoyed chatting with someone who understood renal issues.
• Life on dialysis ... and now life after my transplant! is looking into putting on a really large fund raising event for her organ donation campaign; gives a successful talk to school students, and shares some photos and a link to the magazine cover she is featured on.(Great picture, Holly!)
• On the Road to a Cure has important information about how lupus can affect your skin.
• The Daily Dialysis Bonni feels she is not adjusting to dialysis as well as her husband is, his labs are still not right and he feels fatigued.
• I Am. Are you? Morgan D'Organ attends a birthday party.
• Transplant Alliance A medical student looks for a thesis topic on transplantation; a link to a video about a special hi-tech container for transporting kidneys that helps keep them in better shape until transplant.
• Chronic Chick Talk has a photo of flowers.
• Lupus and Humor provides a link to a great resource for finding a healthy sunscreen. (Important for those with lupus and everyone else.)
• Bud's Ramblings He buys gum for a friend, finds a missing knife, and plans to see a doctor about his sinus coughing issue.
• Disability Prejudice And Civil Rights Watch Alison points out fabrications in her medical records made by psychiatric personnel; mocks the name change of a governmental department as it really is meaningless; makes the case that medical professionals shouldn't talk about "recovery" from mental illness until they stop using shame,blame, threats and force with people; links to an article about psychiatrists lamenting the diminished use of psychotherapy because it is a useful therapy.
• Precious Bodily Fluids shares a link to a cool article on aphorisms by Hippocrates;  a study disputes the July phenomenon (rise in mortality in the month medical interns start their rotations); a funny video made by medical students about diagnosing Wenkebach syndromes (problems with the heart's electrical conduction systems.)
• Renal Fellow Network gives examples from the same Hippocrates article mentioned above; a paper in the NEJM presents a major breakthrough in understanding the pathogenesis of membranous nephropathy and nephrotic syndrome. (Way beyond me but good for the medically astute.)
• Uremic Frost reports the FDA approved a new iron drug, Feraheme, that takes much less time than current therapies (such as Venofer or Ferrlecit); a study shows that renal cell carcinoma lesions are more likely to be central in location; a study shows that early blocking of the renin-angiotensin system in Type 1 diabetics does not delay nephropathy; wishes Happy Birthday to a 100-year old dialyzor in Michigan (Amazing and wonderful to hear about!); the same music video as mentioned in Precious Bodily Fluids above; link to a podcast by Kidney International that  focuses on a possible genetic link between African Americans and CKD.
• Neophron's Senescence has a lot of books to read.
• pkdmom2five has a day full of doctor appointments; shares a photo and writes about the dream house she would like to live in.
• Kidney Notes - Exploring the Intersection of Medicine and Technology has a link to a mindmap showing the structure of the kidney; a graphic of a brain with atherosclerosis.
• Nathan's PKD His echocardiogram was okay but his doctor wants to do a stress test, too, since he gets out of breath with exertion.
•  My Damn Kidneys Here's a link to his new blog My New (Transplanted) Kidney
• Writings along the cave walls - Ashbat's Lair has a M-W-F dialysis shift and hates it, but does like Sat. off.
• Biologically Safe Water Filters Nephros received FDA approval for the Dual Stage Ultrafilters to be used to filter biological contaminants from water and bicarbonate concentrate used in hemodialysis procedures.  This filter will help dialysis providers address microbial and endotoxin contamination of water and dialysate concentrate.
• Kidney Community Emergency Response "Win Big With Quality: Raising ESRD Care to a New Level" is the theme for.the Florida ESRD Network's 2009 Forum, Nov. 15-17  It will focus on CMS goals of protecting patient safety, enhancing ongoing quality improvement, and improving patients’ experience of dialysis care.
• Bridge of Life  A dialysis center that will cater especially to indigent patients will soon open at the Pangasinan Provincial Hospital in Barangay Bolingit in San Carlos City, in the Philippines.

A Tribute to Kelli

By Peter Laird, MD

Kelli Cussimonio is a person that few knew, but for those that did know her, she always had a special place in our hearts.  Kelli was not only a fellow dialysis patient who often sat next to me at the unit, she was also the most special nurse I was ever privileged to work with.  I didn’t know she even had renal disease until I went to do my fistula surgery and found out the Kelli had just completed hers.  We spent the next few months comparing our “thrills” as our fistulas matured and compared notes on our declining renal function.

Kelli started her venture in dialysis a couple of months before I did but was able to continue working taking only the amount of time off needed to dialyze three times a week.  I soon joined her in the unit and my most cherished days were when I was able to sit beside her and talk about the “good old days” when Kelli was my nurse.  In this case, the good old days really were when it came to Kelli. My clinic was always busy and hectic and many nurses simply didn’t want to work with me due to my heavy case load.  Yet Kelli was always willing to take up the tasks at hand without any complaint and always with a soft spoken smile.

Over time, the Lord blessed both Kelli and I with what I came to call my “Kelli days.”  For the last two years that we worked together, every time Kelli drew the “short straw” to work with me for that day, I had so many no shows that these days were always peaceful, quiet and a day that we could both catch up on our duties.  I didn’t realize until a few months ago that Kelli never had easy days unless she was working with me as well.  I just figured God was being kind to Kelli and not me since I certainly did not have the calm disposition that we all knew Kelli had.  As our kidney function declined and as our energy likewise declined, having a “Kelli Day” became a quite special gift to both of us.

I have never heard Kelli complain or be cross with anyone in the over 10 years that I worked with her and even more so as she sat near me in her own dialysis chair.  This is even more remarkable in that Kelli should have had the right to complain about many things, not the least of which was her failing health.  Yet in all of this, and all of her duties at work and as a single parent to her beautiful adopted daughter, Kelli’s determination and inner peace was always a source of encouragement to me and others as I went through my own trials at work and with my own renal disease.  

Kelli recently passed away after a brief illness caused by an internal brain hemorrhage on June 30, 2009.  It was a short life by usual standards cut off in the prime of her life.  She was a loving mother, daughter, and sister.  Kelli always gave her all to those that knew her.  Kelli never wrote any books, nor was she known to those outside of her immediate circle of family and friends.  

Nevertheless, Kelli is a person that always went out of her way to give of herself to her family and her friends.  Kelli gave the gift of a loving life to a  young girl who she took into her home and raised in an exceptional manner.  It was always a joy to see them together. It had been my prayer nearly every day for the last two years that Kelli would be able to raise this child through high school and beyond.  I was greatly saddened that Kelli will not be able to see the fruits of her labors with this child, yet then it occurred to me that the legacy that this soft spoken woman left for her child shall forever be with her.  I know of no other person that showed such kindness, meekness and patience thus serving as the best example of a genuine Christian demeanor that I have ever encountered in this life.  The altruism of Jesus shall be the manner in which I think of Kelli, always giving of herself and not asking for anything in return.

Kelli likewise wanted more than anything else to be able to see her daughter grow into adulthood.  In such, Kelli has been on the renal transplant list for over two years.  She diligently endured all of the many tests that are required by Kaiser and the UCLA transplant teams.  Kelli took her medicines and did everything she could to live her life to continue giving to her daughter, her family and her friends.  Yet tragically, a little over two weeks ago while visiting her sister to see the newest life brought into their family, she suffered what turned out to be a terminal brain hemorrhage.  Instead of becoming a kidney transplant recipient, Kelli once again gave of herself another gift of life by becoming an organ donor when she no longer needed this earthly body.

I will miss Kelli while here on this side of eternity.  I cherish all of the time that I spent with her at work and even more so as my fellow kidney dialyzor.  Yet I will never forget the example she gave living and always giving of herself.  It is my hope that her story may compel many to give the gift of life likewise as this quiet woman did to those that she never knew. Knowing Kelli, this would give her a big smile knowing that her sacrifice helped others, not only of her own flesh, but also those that may be motivated by her example.

May you rest in peace always Kelli.  I miss you and will never forget you.

Peter

Singapore dialysis units take H1N1 seriously

By Bill Peckham

In Singapore dialysis units are implementing social distancing measures to limit the spread of H1N1 flu. In the photo accompanying the Channel News Asia story it appears that people - both patients and staff - are wearing surgical masks which is another non pharmaceutical intervention that could be used to limit the spread of the pandemic flu virus.

US dialysis providers should be discussing these and other NPIs to prepare for what looks to be a very challenging flu season just three short months away.

Dialysis & CKD Blog Report 6/30

By Miriam Lippel Blum

Here are the CKD related blogs updated since my update on 6/27.   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 totally addicted to FaceBook despite the irrelevant information he gets on it.(I confess to taking too many of those silly quizzes. )
• Toastiest His 13-year old cat is sick, wonders if this may be the end and if delaying taking the cat to the emergency vet is irresponsible.
• Hasten down the wire critiques the NYT coverage of Michael Jackson's death.
• Becky Perry is feeling low and vulnerable, wonders whether it's okay to reveal that side of her in her blog (Yes, it's okay and we all feel that way sometimes.); posts a  peek into the first chapter of a book by Linda Massey, How To Raise a Modern Day Joseph; reviews Mom Needs Chocolate by Debora M. Coty.(I'm not a Mom but I definitely need chocolate, too.)
• The Adventures of Stacy Without An E Stacy's sister, Amy, comes to visit which cheers him up immensely and he shows her the town. (Sisters are indeed powerful.)
• Life on dialysis ... and now life after my transplant! is excited about taking her first train trip by herself to a donor family event.
• On the Road to a Cure Human Genome Sciences (HGS) reports continuation data from a Phase II study of BENLYSTA™ (belimumab, formerly LymphoStat-B®) showing sustained improvement in patients with active systemic lupus after four years of treatment.
• The Daily Dialysis is a new blog.  Bonni, caregiver to husband, Mark, who has just started in-center HD, is feeling cautiously optimistic as he continues to feel better, hopes he can get an earlier time slot as they don't get home till well after 11pm.
• I Am. Are you? has photos from a Donate Life Illinois event at a Kenny Chesney concert.
• Chronic Chick Talk posts a Madonna video for Music Monday.
• Lupus and Humor finally  signs up to take a long desired class on writing one-(wo)man shows, because "if you don't learn anything else from having a stroke and kidney failure, you learn that you only live once." (Bravo, Carla!)
• Bud's Ramblings did well on dialysis yesterday, is now enjoying watching the birds from his front porch.
• Disability Prejudice And Civil Rights Watch Alison sharply critiques the hospital that violated her civil rights and abused her in multiple ways; Catholic hospitals told her being a lesbian was a mental illness; discusses the excuses professionals and family members make to justify abusive behavior towards people labeled with psychiatric problem; wakes up from a nightmare and reflects on the traumas and injustice in her town and the world; decries the fact that when  people are involuntarily detained in an ER in Virginia no one asks if they have any pets at home that might need care. (That is a very important problem that should be addressed.  Maybe the Humane Society or the ASPCA can help lobby for this to be changed.)
• Precious Bodily Fluids describes a patient who missed three weeks of dialysis during the month; summarizes the history of dietary sugar and fructose as presented in The Sugar Fix, chapter 2; presents his philosophy of consult nephrology; links to a page with excellent tips for doing searches on PubMed.
• Renal Fellow Network describes the importance of Acanthocytes (ring-shaped Red Blood Cells (RBC) with blebs of membrane coming off--sometimes described as RBCs with "Mickey Mouse ears") as the best predictor of glomerular disease compared to all other dysmorphic RBC types;  the problem with using eosinophiluria to diagnose Acute Interstitial Nephritis.
• Uremic Frost reports a horrendous incident wherein a cab driver abandons a frail,  elderly dialysis patient by the side of the road in 97 degree weather; links to a very eye-opening article about DaVita's strong arm tactics to destroy competition and protect its profits;  a scary video about the kidney stones in Chinese children who drank melamine tainted milk.
• Renal tsar's blog  has a link to the business rules for the new CKD domain of the Quality and Outcomes Framework that have now been published.
• Neophron's Senescence loves his old Porsche; links to a presentation that makes a case for single payer insurance,
• Lemonade and Kidneys Her lab results show another drastic drop in kidney function, she's glad she has disability insurance.
• Mid-life ramblings Her daughter is visiting from Utah and family dinners are planned, dialysis access is progressing well, looks forward to getting her NxStage home.
• The inner game of PKD discusses evaluating and confronting fears. (Very relevant and practical advice here.)
• Mushroom's Blog has a lovely photo of Mushroom holding his grandchildren.
• Nephrosphere links to a report that Cinacalcet might be associated with leukocytoclastic vasculitis.
• My Damn Kidneys Transplant is scheduled for July 27 and they are gearing up their support network, will be starting a new blog "My New (Transplanted) Kidney Journey. (We wish you the best and hope for more good news in your new blog.)
• DailyHemo - Home Dialysis Advocates New Videos: Bundling for ESRD Patients; Nephrology Practice in an Economic Downturn.
• Berns on Nephrology Will bundling create disincentives for home hemodialysis?
• Encompass Network Partners has gotten good press and wants contact from their readers.
• Renal BizBlog The renal community could get its first look at the ESRD bundled payment system in July, according to information on a government Web site that lists federal regulatory information.
• The Renal Unit Latest renal tweets, news, and blogs.

MIRIAM'S WEBSURFING FIND: Tiffany Christensen is a two-time lung transplant recipient who has struggled with chronic illness all of her life.  She has a blog called "sick girl speaks" that recently spawned a book.  But what I happened upon was a blog post by her entitled "The Ten Opportunities of Illness."

It provided a perspective shift that I appreciated and thought worthy of sharing.  Here's a quote:

 While we must acknowledge the feelings of loss and frustration that inevitably accompany illness, we may also open up to the opportunities of growth, understanding, and gratitude that illness can provide.

She then goes on to list what she considers the "gifts" that an illness experience can bring and comments on each one.  I found it uplifting and a different way of looking at and coping with my challenges.  I hope you will find it so, as well.