Dialysis from the sharp end of the needle

Northwest Kidney Centers Breakfast of Hope May 12; NKC reposts videos of Breakfasts past

By Bill Peckham

I stumbled on the Northwest Kidney Centers YouTube page tonight, (people think they tell me these things), you should subscribe and while you're clicking on things follow NKC on twitter too. On YouTube they are posting lots of good stuff including Breakfast of Hope Videos from breakfasts past.

The Breakfast of Hope is a Northwest Kidney Centers annual event to raise money and community awareness for the Northwest Kidney Centers. I expect over 800 people will be at this year's Breakfast of Hope,  on May 12th (it's at the Westin, drop me an email if you want to support a great organization (and help me to fill up my tables)). Each year as part of the 75 minute program there has traditionally been a video telling one of NKC's stories, a story about a person or family served directly by NKC.

In 2005 I was the subject. I posted the 7 minute 51 second video as a page when I first started DSEN, just to try embedding a video. That is the version that was shown at the Breakfast in 2005. However, on NKC's Channel there is a version I had never seen before, this version is 9 min 9 sec! It's the missing 78 seconds!

I am really glad I got to see this version. Dr. Kelly had some even nicer things to say about me and Freddie gets a little more screen time to riff. It's great. There are some other differences, I'll have to watch the old one again to try and catch them all.

This year's breakfast is sure to be great too. I'll be blogging the details soon but save the date - May 12th. The Westin. Plan to be there.

CKD: The Burden on the Caregiver

By Anna Bennett

In my last post, I posted a clip from PBS Second Opinion Stat!: Kidney Disease, and while going through the related website to the episode, I came across some key points, the first being:

In management of a chronic disease, the burden on the caregiver is great, and there are physical and emotional costs to the caregiver.  The patient is not the only one who needs to be watched and taken care of.

Even though the majority of people in CKD5 have a caregiver, the role of caregiver does not get much ink here on SEON, Bill and I are solo dialyzors, (ok, so now I am a former solo dialyzor - I've actually started calling myself a monourinator).  Bill experienced being a caregiver this summer when his mother was ill, and it was an eye opening experience for him.  Peter is married and currently incenter, and Mel was dialysing at home with her husband, (now Husband/Donor) Andy.

When you love someone who is ill, you too are suffering - it is the nature of human attachment.  This excerpt from Key Point 1 is a great reminder that you need to be a caregiver to yourself as well as the person that you love:

The energies of the caregiver can become totally absorbed by their loved one's illness.  Many caregivers try to provide care single-handedly and end up neglecting their own needs. It's not uncommon for them to think that their life has to come second to the needs of their loved one.  Yet, in additional to an overwhelming volume of things to be done, they also have to come to terms with the sacrifices they're making –  the loss of the fullness of their personal relationship with the ill person plus the life choices they are no longer free to make – and their own emotions.  Family members feel the same shock, fear, anger, sadness and loss as the person who is ill.  They are the witnesses to their loved ones' physical and emotional deterioration.  

Chronic stress without relief can lead to both physical and emotional problems.  Research shows that caregivers:

• Are more likely to be have symptoms of depression or anxiety
• Are more likely to have a long-term medical problem, such as heart disease, cancer, diabetes, or arthritis
• Have higher levels of stress hormones
• Spend more days sick with an infectious disease
• Have a weaker immune response to the influenza (flu) vaccine
• Have slower wound healing
• Have higher levels of obesity
• May be at higher risk for mental decline, including problems with memory and ability to concentrate

A study of caregivers published in a 1999 issue of the Journal of the American Medical Association reported that elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than non-caregivers of the same age.

The irony is that the well-being of the patient depends on the well-being of the caregiver.   By neglecting themselves, caregivers put their loved one in danger of losing their most important support person.  To evaluate your level of caregiving stress, take a simple test from the PBS Caregiver's Handbook (part of the web site for the 90-minute program Caring for Your Parents).  Go to Caregiver Self-Assessment Questionnaire (PDF).

So, let's take a moment for the caregivers, even though they do not physically feel the pain of the needle sliding into the access, or the wave of nausea when suddenly your body reminds you that something is not right, We, the dialyzors can't feel their pain of being helpless while someone they love is being kept alive by a machine.

Here is the link to webisode Family Caregivers Issues

PBS Video: Second Opinion Stat! Kidney Disease

By Anna Bennett

Zach on IHD posted a link to this video in response to my post What would be the ideal CKD4 to CKD5 transition?.

The two panelists in this clip are Rebeca D. Monk, MD, Associate Professor of Medicine and Program Director, Nephrology Fellowship, University of Rochester Medical Center and Joseph A. Vassalotti, MD, FASN, Chief Medical Officer, National Kidney Foundation.

At the 3:15 mark the interviewer, Dr. Peter Salgo, asks regarding CKD "Why aren't we getting a handle on this?" It is interesting that Dr. Vassalotti comments "I think that most Americans view kidney disease as dialysis".  That is a valid point.  Even more voices calling out for early detection - too many people are finding out that that they need dialysis at the same time that they find out they have kidney disease.

The website for this episode has quite a lot of information. And here is a link to the full webisode.

Pandemic planning, just in time supply chains and dialsyis ... not good

By Bill Peckham

On PandemicFlu.gov there is an archived 72 minute video of DHHS Secretary Leavitt’s October 29, 2008 speech and discussion of pandemic planning and pandemic preparedness. (I can't seem to get the video to embed properly, it does require flash to watch this).

The critical part of the video from the provision of dialysis point of view is the post speech discussion. The discussion is among Secretary Leavitt, Dr. Bill Raub (Science Adviser to Secretary Leavitt), Dr. Michael Osterholm (Director of the Center for Infectious Disease Research and Policy at University of Minnesota) and Maggie Fox from Reuters.

The whole hour is informative but listening to the post speech discussion through the provision of dialysis lens confirms that the industry is not where it needs to be. The last half of the video, from the 34 minute mark, should be wake up call to the provision of dialysis industry. In the video the discussion kept circling back to the global just in time economy, the just in time supply chain. Listen to the discussion keeping in mind that supply manufacturing and management best practices would get the artificial kidney from factory to dialysis unit in 2 months or less. Dialysis units have between 1 and 4 weeks of supplies on hand, which means at any one time there is 12 weeks worth of artificial kidneys in the world, in existence. A pandemic would last for months and months, if not years.

Watching the whole 72 minutes through the lens of dialysis highlights why the provision of dialysis is at great risk in the event of an event. Not from people on dialysis dying from the flu, the provision of dialysis is at risk because of various business risks.  Risks to the supply chain. Risks of scarcity. If the provision of dialysis is meant to continue under all events then the planning has barely begun.

Allen Nissenson, MD, invites Alan Hull, MD to talk home hemodialysis

I see Gus over at Daily Hemo linked to this video back when it came out. I missed a lot while I disconnected from the online renal community for three months but these videos will continue to influence and inform:

It's interesting to hear Dr. Hull's pitch for the modality, however, I think he buries his lede.

When discussing the advantage his first point is to discuss the logistical advantages. I agree with his larger point one needs to include all the time given over to incenter dialysis - including the recovery time - when weighing your choices. Dialysis is all about time. But the biggest time saver provided by more dialysis is the not dying part, which Dr. Hull comes to later in his list of reasons. You also save a lot of time by not spending it in hospitals another advantage of dialyzing at home more often then three times a week. It's just that would be an odd way to put it.

I think fewer deaths, fewer hospitalizations due to the underlying CKD are the points to drive home first. Higher doses of dialysis - generally only practical at home and/or over night  - are safer than lower doses of dialysis. Higher doses do offer a net time savings, but more importantly higher doses of dialysis offer a net savings in human misery.

Hemodialysis: 45 Years Later

by Anna Bennett

Just a few years before I was born, this newsreel of one of England's first self- service Dialyzors was made.  It is amazing to me to see this archival footage.  To see a man self cannulate in the thigh (he doesn't actually cannulate, a rustic type of split catheter seems to be implanted in his thigh), the huge dialysis machine, the needle gauges and crisply dressed nurse bringing him a cup of tea in a china cup with a saucer.  All hearken back to the dark ages of dialysis. 

The 1960's was the time of "Life and Death Committees",  a time when someone like me would be literally on her deathbed.  But now in 2008, I am fighting deadlines at work, spending time with friends and planning my next vacation. Oh, and I dialyze at home 5 times a week, it fits into my schedule rather well.  I don't know how long Peter Farmer (the man in the newsreel) was able to dialyize, I couldn't find any follow up.  My guess is not long.  But he was a part of something that grew into what keeps me healthy today, and for that I am grateful.

I wonder how we'll see Bill's cannulation video 45 years from now.  When I think of the future of dialysis, I have hopes that the cannulation video will send shivers down the spines of people with CKD, just as watching the man in the British video presenting his access made me breath a sigh of relief that we now have A/V fistulas and buttonholes.  Maybe with nanotechnology, we'll have an implantable kidney.

2008 LA Renal Teen Prom

The Renal Support Network has posted this nearly 10 minute video of this year's Los Angeles Renal Teen Prom:

This was the ninth Renal Teen Prom in LA, last month RSN hosted the first East Coast Renal Teen Prom in the Washington DC area.

Video of my NxStage extended nocturnal dialysis set up

This video shows my nocturnal set up aboard the Grand Waltz.

 

This is aboard a bare boat charter from ABC Yachts in Anacortes, Washington on Memorial Day weekend 2008. The video was shot on Saturday May 24th and shows the System One as it is getting ready for treatment.

HDC Webinars - the future of dialysis learning

Home Dialysis Central tested out this Webinar idea after it was suggested by Rich Berkowitz. The initial presentation that Dr. Agar gave was on needle orientation. Here is my cannulation video where I show how I put my dialysis needles in every night using the buttonhole method (this was filmed in April/May 2006)

I had always placed the arterial needle (the needle that takes blood from the body to the machine) retrograde, meaning the needle pointed into the flow of blood. This is the first needle that I insert in the video. The second needle, the venous needle (which returns blood to the body) I've always placed antegrade, with the flow of blood. Dr. Agar's presentation made a strong case for placing both needles antegrade. I now place both my needles antegrade. It was seeing his Webinar that persuaded me to make the switch.

I had seen the presentation - Dr. Agar sent me the file - and I thought it was a good argument but it wasn't until he presented the data that I was moved to switch. There is real value to have the data presented and being able to interact with the presenter in real time. Try it for yourself a week from tomorrow, Wednesday May 28th. Sign up at WizIQ and then register for Dr. Agar's presentation. To get an email reminder before the session, send an email with "WEBINAR" in the subject heading to: info@homedialysis.org.  Everyone who sends an email to be reminded will be entered to win a pair of headphones.

I think once you sign up at WizIQ you can go back and view the practice sessions where Dr. Agar presents his case for antegrade/antegrade dialysis needle placement. Even as we practiced using the technology the data shone through; and now my video is out of date, for the last two weeks I have been placing both of my needles antegrade.

Peritoneal dialysis video - how to hook up for CCPD

This video is from Shay, www.KidneyFun.com owner and shows how she set up, hooked up, and unhooked from her Continuous Cycling Peritoneal Dialysis machine -  this is an overnight  dialysis modality that does not involve needles. The video is a bit over 6 minutes - some of the captions are hard to read but after watching the video you'll know what's involved in hooking up each night. One thing I wondered is without edits how long does it takes from start to finish?

The making of the RSN bundling video

A lot of work went into making the video that the Renal Support Network produced. All the credit goes to Lori Hartwell who brought everyone together - first in Washington DC for a two day in depth meeting on the proposal to expand the dialysis composite reimbursement bundle (this is the overview from that meeting (PDF link); many of the commenters were in the video) and then in LA to shoot the video. Each person in the video was in talking for 30 or more minutes - it was Lori who made the editing decisions and massaged hours of raw footage into a compelling and fast moving six and a half minutes. Great job Lori! A woman of many talents.

The Renal Support Network page on expanding the bundle is here, it includes links to a couple if the background documents. RSN is a great group to connect with if you're on the sharp end of the needle or in other stages of CKD, and want to get involved in improving the provision of dialysis. RSN has a number of programs; the key advocacy program is weKAN. Check it out.

Video from RSN presenting the concerns about expanding the dialysis bundle

This video from the Renal Support Network is good and not just because I appear three times (is it just me or does my lighting seem off?). I've written plenty on expanding the dialysis bundle aka the ESRD composite rate - thousands of words - I think this video covers the ground better in six and a half minutes than I did in all those posts:

I really like the end with the call to imagine an ideal system rather accepting the current way dialysis is provided along with the 23% mortality rate. Rather than trying to figure out how to provide adequate dialysis for a little less money, let's try to create a system of care that can routinely provide optimal dialysis and CKD care. Nice job RSN.

Northwest Kidney Centers 2007 Breakfast of Hope video

This is the video that was shown at last year's Breakfast of Hope (this year the NKC Breakfast of Hope is May 22nd). This video features a family I've gotten to know (see photo at 2:35 mark; look for me in back row between Muff and Madison) through NKC and through this video:

I'm a Table Captain each year at this great event. If you can be in Seattle on the 22nd of May drop me an email and I'll sign you up to sit at one of my tables. After the 75 minute breakfast there will be a book signing with Graham Kerr (the Galloping Gourmet) and I'll introduce you to Muff as well as this year's video subject who I've just met over at Kidney Space.

NKC is an awesomely cool organization.

Public Service Announcement raising lupus awareness

The Lupus Foundation blog On the road to a cure embedded a second PSA to raise awareness and support for research. This time with the actor who plays Turk on Scrubs - I'm guessing there will be more (Scrubs is an ensemble cast)

It's hard to say much in 20 seconds.

Video from JAMA

This video is from the Journal of the American Medical Association (h/t Kidney in the News) is pro nocturnal dialysis. After my two months of dialyzing while I sleep I have seen the light. Dialyzing over night is the way to go.

I hope we can look for more video from this highly credible source.

Lupus Public Service Announcement

Lupus Foundation of America blog: On the road to the cure, embeds the latest PSA to raise Lupus Awareness. Fans of the TV show Scrubs will recognize Sarah Chalke, who's not a doctor but plays one on TV

Nice job LFA

Are anonymous donors the solution?

From the satire site The Onion

 

Finally someone is doing something about the shortage of kidney donors.

The Amazing Kidnerellis

This maybe my favorite World Kidney Day video an animated educational piece out of Belgium from Roche:

It is available in several languages: German, French, Spanish and Italian.

Affirmations from Patient's Pride

This video is different - it's from Sheila Shaw founder/President of Patient's Pride and is a series of positive thinking personal empowerment thoughts to start your day. I, of course, would use the word dialyzor instead of patient but the sentiment would be the same.

40 years of home dialysis

The Nephron Information Center has made available a great set of videos about the history of home dialysis:

In 2001 Stanley Shaldon delivered a lecture outlining the significant accomplishments that led to the development of home dialysis. Now, as we embrace this technology as "new" it is interesting that it actually began in the 1960s. Here is the 7 part series of quicktime lectures to that capture the history of the first practical dialysis machines, the av fistula, and the concept of home dialysis.

I look forward to commenting on the seven part video series over the next week.

Video wanderdesire

In case reading about the Arcus Polyclinic Dialysis Centre in Medulin, Croatia wasn't enough to make you want to travel to Croatia, there is now a video.

It is about 6 minutes long. It starts with the attractions of the area, followed by the accommodations, food, view and spa. Then in the fifth minute we see their state of the art dialysis unit, with internet! I am so there - you'd think they'd fly me in to review it in person (hint, hint). Watch and dream:

World Kidney Day awareness videos from Kidney Health Australia

Kidney Health Australia has a video online to raise awareness of CKD and World Kidney Day.

The video is a Public Service Announcement about 30 seconds long. Amazing Kidneys:

Watch all five of Kidney Health Australia's online YouTube videos.

KidneyTalk: the movie

I've been on KidneyTalk a couple of times (here, here) but for those yet to be a guest here is a chance for you to see behind the scenes.

The continuing drain line saga

My replacement drain lines never made it on the plane so I am back to my MacGyver-like solution using empty dialysate bags connected via a warmer bag.

Per the request of my blog's number one reader (and proofer) here is a video showing my setup.

Renal Teen Prom video highlights

This three and a half minute video from the Renal Support Network gives you a feel for what you'd see if you went to this annual event for those 13 to 24:

If you missed this year's event, you have another chance. The Renal Teen Prom is Washington DC May 10th.

WKD video - do you know the signs and symptoms of Chronic Kidney Disease?

In honor of World Kidney Day and National Kidney Month here is a video from the Renal Support Network:

In honor of World Kidney Day and National Kidney Month raise awareness in your own circle - pass on this light hearted video. Nice job RSN!

RSN's Message of Health, Happiness & Hope

This video is from a Renal Support Network meeting last year. These meetings are a lot of fun and a great way to meet many inspiring individuals who have been dealing with CKD for 10, 20, 30 years.

The video is about 10 minutes long but as someone who has been fortunate enough to attend several of these meetings I know it could have been much longer. I look forward to more videos in the future. If there is going to be a RSN meeting in your area plan to attend.

Patient's Pride founder tells her story

This four minute YouTube video is from Sheila Shaw. She "was diagnosed with Lupus, ESRD, Osteoporosis, ... experienced chemotherapy [and] 3 Grand Mal seizures" but that didn't keep her down, "she was able to move forward and take back control." Sheila has had to over come a lot in her young life. She now works to spread a message of self empowerment to others facing chronic diseases. That's the message of this video.

You might not go out and race motorcycles or start your own company but if you follow Sheila's example and advise you can achieve whatever goals you set for yourself.

Kidney Research UK makes CKD videos available on YouTube

Kidney Research UK has started their own YouTube channel. They have posted seven videos so far, each is about two minutes long.

Kidney Research UK is the leading UK charity funding research that focuses on the prevention, treatment and management of kidney disease. Kidney Research UK also dedicates its work to improving patient care and raising awareness of kidney disease.

Over three million lives in the UK are threatened by chronic kidney disease -- young, old, male, female, it can strike any one of us at any time. This is why Kidney Research UK is dedicated to improving the understanding of kidney disease, its causes and treatments.

The seven videos are embeded in order after the jump. Nice use of new media KRUK, I'll be looking for additions especially updates about research being undertaken. Where is the home/daily/nocturnal hemodialysis video??

How to use Emla cream

By Bill Peckham

Angie of Kidney Korner fame provides a handy video on Emla cream use prior to hemodialysis. Emla cream numbs the cannulation site so that one does not feel the sting/burn of dialysis needles being inserted. Another option that many dialyzors use is lidocaine, however prolonged use of lidocaine can cause the skin to become less elastic. I believe Emla cream does not have the same impact - it's a topical cream v. an injected agent.

Nice Job Angie. Like your t-shirt.