Dialysis from the sharp end of the needle

Aussie blog No 2

by Melissa Darnley

Well, all the Catholic youth have split Sydney town to go home for a wash and a good feed after the World Youth Day celebrations. Not being of any great religious bent I was actually quite amazed at the exuberance and good will that overtook Sydney last week. It was fantastic to see all these kids having a great time without (I guess for the majority) needing to imbibe in copious quantities of sex, drugs and alcohol. One enterprising young Christian with a passion for public speaking took his message into the pub (hotel?) where he preached from a stage whilst the young pilgrims could partake of a few Aussie ales!

Australian Dialysis Buddies has had an extremely active week. Just when you think there is nobody out there anymore they all come flocking back to aid a young member Erin, who brought up a very important concern for many.

She was concerned about starting a new relationship with a young man and dealing with the issues she already deals with on dialysis. She has a young child and left the child's father soon after starting dialysis (due to a number of issues including dialysis) and now was wondering whether she should start this new relationship as she had not told the gentleman anything about her health and treatments yet.

Of courses, the Buddies all gave her lots of encouragement and the depths of peoples thoughts and concerns for Erin was truly heart warming.

The Thursday listserv roundup

NxStage_Users writes that this week the topics have been:

NxStage Medical poor financial results are being discussed this week on NxStage_Users Yahoo Discussion Group. Additional discussions are taking place, including one about how  one of our members was recognized as a DaVita Patient Citizen Hero.  Another thread is focused on Heparin allergic reactions and the potential shortage of this blood thinning medicine.  Members are also discussing how many are finding that they are needing less Aranesp since using the NxStage System One.  Come join the conversation where you will find that your input is always valued and respected.

Dialysis-Support discussions included reports of two members meeting in the real world, good information for members who are just starting dialysis, more information on the heparin recall, nocturnal incenter dialysis/sleeping on nocturnal dialysis, Facebook/World Kidney Day and  what are optimal UFR/Qd rates. This is such a caring and engaged group with so much knowledge and experience to share. A great resource for anyone on dialysis.

Unfortunately the Dialysis-Support predecessor Dialysis_Support remains in a state of limbo, not quite dead but not at all thriving either. Pleas continue to go out to the current owner to shut down the list:

You may have noticed that messages sent to the old dialysis_support listserv that you belong to have been taking as long as 2 weeks to come through.  Unfortunately, that list is now moderated by someone who can't spend much time on it.  I'm writing you this email (OFF-list) because you are either:

-- A frequent poster to the old dialysis_support list and we MISS you!

-- Someone new who joined dialysis_support and hasn't yet gotten info you've asked for

Please consider this a personal invitation to join the NEW dialysis-support listserv.  It has dozens of kidney disease experts no-one holds up the posts--so you get ACCURATE answers FAST! Click:  http://health.groups.yahoo.com/group/dialysis-support/ to sign up and join.

Please share your wisdom and find answers and support.

The problem is the old "underscore" list is fully moderated by someone with only  a second hand connection to CKD and who only occasionally approves messages. This creates a dangerous situation, potentially deadly. This person sent this email 2 weeks ago, describing the symptoms of a heart attack or stroke!  If he didn't get help, he may be dead by now.

Hi
I am 28 year old guy undergoing HD regularly for past 5 months. So far I never had any particular issue but this morning after dialysis i woke up with difficulty in breathing and a feeling of somebody putting a huge weight on my chest and was feeling gidy for quite sometime and couldn't walk straight.

Has anyone felt these symptoms? What should i do if it happens again?

Appreciate your help

This message sat for two weeks waiting for approval. I hope he received some help because those are extremely concerning symptoms. This has really turned into a worse case scenario. At this point it would be best to shut the list down before someone (else) dies.

The Thursday listserv roundup

Australian_Dialysis_Buddies writes in to say:

Australian_Dialysis_Buddies is a jolly group of folk downunder that  have been chatting about:

• female hormones
• blokes in dresses
• needle phobias
• phosphate binders
• growing webbed feet from the continual rain we are having up and down the East Coast for weeks now
• Lance has been working on a seeing if there is any correlation between the female
• hormones he is having to take and brain shrinkage and Anne suggested that Lance should embrace his feminine side and try not to smudge his toenail polish
• Meanwhile, Paul is loving the "thrill" of his sexy new fistula

Makes me wish I was from Oz (not for the first time). This is a great resource for Australian dialysors to connect peer to peer, from the sharp end of the needle. If you are an Australian on dialysis connect with this great group with heaps of experience.

NxStage_Users writes in to say they've been talking about "Baxter's heparin recall, leaks with the NxStage System One and concern for a fellow nocturnal patient having a fistula crisis are all prominent discussions [starting] this week." I would add they've been pretty active lately, good banter. If you're using the System One join the discussion - if you're not, get with it because you're missing out.

Dialysis-Support is open to all and writes "this is what I got from the list this week:

• Wall Street Journal article about craving ice and er, "gourmet ice" being sold
• Transplant games questions and why dialysis patients are not included
• Several postings on peritonitis
• An article about an Alaskan state legislator who needs a kidney: they are having to pass a bill since this is more than the $250 limit on donations to legislators
• An interview with Cojo of Entertainment Tonight who received his mom's kidney, he wrote a book called, "Glamour Interrupted."
• An article about dialysis patients being sickened by heparin
• A new member from India has questions concerning his newly-diagnosed wife"

From the website:

Dialysis-Support welcome[s] patients, health professionals, family members and friends of patients. We offer hope, education and hopefully, the means to win over your fears. Through the support of our members, you will meet people on every type of dialysis. Learn the pros and cons of each and become better educated about your care. This is a great group of people form all over the world with a wealth of knowledge, join the group and meet them today.

If you're a member of a dialysis/ckd listserv send me an email on Wednesdays: tell people what's going on behind the members only sign; invite them to join the discussion! Promote your group and let people on dialysis or faced with a chronic kidney disease diagnosis or investigating a kidney transplant know where they can get support. Let people know where they can go to benefit from the knowledge of veteran dialyzors.

The Thursday listserv roundup

NxStage_Users writes in to say what's being discussed lately:

NxStage_Users Group on Yahoo is having a very active discussion on returning to work while on SDD, appropriate tape for various skin types, and training tips to share with trainers.  New Polls query members about fluid restrictions, diet, erythropoeiten stimulating agents and iron stores, and music preferences while dialyzing.

they've been busy keeping their weekly message totals above 100. NxStage_Users "is a patient only group of people who use the NxStage System One Dialysis System." If you're using the System One join the discussion - if you're not, get with it because you're missing out.

Dialysis-Support reports "We've had a pretty lively discussion this week--112 messages! Some things we talked about were:

-- Options when your center isn't treating you well

-- What to do when you find out you've got Hepatitis C

-- Bariatric surgery as a treatment for diabetes

-- Deciding on a kidney failure treatment as an overwhelmed caregiver

-- How to get back to kayaking as someone on dialysis

-- Kidney thefts in India

Dialysis-Support welcome[s] patients, health professionals, family members and friends of patients. We offer hope, education and hopefully, the means to win over your fears. Through the support of our members, you will meet people on every type of dialysis. Learn the pros and cons of each and become better educated about your care. This is a great group of people form all over the world with a wealth of knowledge, join the group and meet them today.

If you're a member of a listserv on Wednesdays email in a roundup of activity on your site. Tell people what's going on behind the members only sign; invite them to join the discussion!