Dialysis​? Choose your topic!

The one downside of a blog is that each time you write a new post, the previous one is shuffled down the page. So as time goes by, all the older posts get lost in one long river of posts. If you want to read about a certain topic, you have to either scan the posts one at a time or use the search function. Either way, it’s not easy to get an overview of everything that’s available.

So, after six years and 213 posts on a large range of dialysis topics, it’s time to raise the bar and make it easier to find subjects and posts that cover various themes. For the last few weeks, I’ve been re-reading and classifying them into a map or framework of topics (or in blog-speak: Categories).

Here is the resulting Map of Topics:Dialysis Topics2It is quite a list, but hopefully, it is also a useful way to find a topic you are looking for.

Getting there

Is simplicity itself!  The Categories list is on the right-hand side of this screen, second item from the top.  Just click on the down arrow where is says Select Category and the list will be displayed.  The number after the name is the number of posts about the topic.

Also, I am gradually changing the way the posts display, by inserting a break after the first few lines, with a (…more…) link.  This is designed to make it easier to see all posts and get the gist of the topic.

Regarding the Travel topics, there are at least 12 countries listed so far,  but most travel posts actually deal with specific cities rather than countries, so you will need to scan the posts to find the one you need. (There are several better options for managing posts and reviews about travelling on dialysis. I will cover them and my proposed solution soon.)

I hope this is useful!

Flash: Dialysis staff go home and leave patient locked in

This would funny if it wasn’t so serious. Was this just a bad day or is there something fundamentally wrong with the culture of the organisation that runs the unit?

I hope that, like me, most dialysis patients just can’t imagine being locked in their unit after everyone else has followed Elvis from the building.  Hello?  Hello?  Is anybody there?  Anybody?? (more…)

Just starting PD and looking for support

Anna emailed me last week:

Hi Greg,

I stumbled across your blog while looking up info on PD catheter surgery info.

I am a 47-year-old  mom of a beautiful 2-year-old child in California. I inherited high blood pressure and kidney disease. All my siblings in our family have kidney failure.  It kicked in around late 30’s and early 40’s. I was diagnosed the latest at 45 and think it advanced due to my pregnancy.  We were hoping my numbers would go back to normal after the baby but no such luck. (more…)

Skin too thin for a fistula?

John emailed me today:
Hello Greg,

800px-Schema_fistule_arterio-veineuse_-_AV_fistulaI found your Big D and Me blog when Googling “fistula thin skin”. Thank you for the thoughtful blogging about dialysis and your compassionate spirit reflected in your posts. If you don’t mind, I’m writing to ask your advice or for some of your knowledge. If you wish, I can re-post this on your blog site and you can reply there if you want this thread available to all.

My 81-year-old mom has been on dialysis for 5 years in Memphis, Tennessee, USA. She began dialysis soon after heart surgery. To begin dialysis, she went through the usual process of a Permacath while building/growing a fistula in her left arm. The fistula performed well until last Spring when her fistula burst and haemorrhaged twice, each of which nearly killed her. The vascular surgeon opened the fistula site to rebuild but said the fistula was heavily ulcerated and unusable. (I suspect poor care of the fistula over time by medical staff, but that is in the past.)

We had an appointment with the vascular surgeon for her to have a vein mapping done in her other arm for a possible new fistula, but the port, which she had put in after the fistula burst, became infected and she became septic. She was taken to the hospital to have the infection treated with IV antibiotics, so she missed the vein mapping appointment. While in the hospital, the cardiologist and nephrologist said she was not a candidate for a new fistula because her skin is too thin and fragile.

While I believe it is certainly possible that her skin could be too fragile, it’s odd to me that the vascular surgeon, who examined the arm just a couple of weeks earlier, seemed encouraging about the possibility of a new fistula. (It’s hard to know who’s opinion to trust more. I value the cardiologist’s opinion least because he doesn’t deal with the mechanical aspects of a fistula and dialysis scenarios as much.)

Without a fistula, of course, a Permacath is the only other option, which I believe will likely become infected with time.

Question: Have you heard, in your experience, of age and/or skin condition being a factor in evaluating a fistula site, and then completely ruling out the possibility of a fistula?

If a port is going to be her only option, can you offer advice about avoiding infection and catching it early if it happens? (My understanding is that a port is always removed when there is an infection because a foreign body can harbor bacteria. Of course, infection and port removal mean yet more hospital stays and procedures.)

Part of the picture here is my mom’s quality of life. She is very sharp mentally and was walking on her walker a few weeks ago. I believe she could continue with a significant quality of life if she could remain infection free and dialysing regularly without incident. But, with event after event (haemorrhages and infections), she has expressed an unwillingness to tolerate that for long, and I would not blame her.

Thanks for any advice or knowledge you may offer.

My initial response:

Hi John.  Thanks for your email.

I’m sorry to hear about your mother. It is an awful time for both of you.  Give me a couple of days to think and to ask around.  I’ll come back to you soon.

In the meantime, I’ll put up your question as a new post, so that others may help too.

Update:  We’ve had some great responses:

  • Henning, as usual, told it as it is:

….Hello Greg and John,

Unfortunately, the cardiologist and nephrologist are probably right. You do need a certain level of tissue above the fistula for it not to create trouble. On the other hand, I can’t be too deep either. The more shallow the fistula, the greater the risk of haemorrhage. (see the rest in his comment below)

  • Julie Tondello gave us the clinician’s viewpoint:

Hi Greg,

In our experience, the viability of creating a new fistula would generally be established through vein mapping and reviewed by a vascular surgeon and care by a vascular access nurse.

Many dialysis patients are in their 80’s and even 90’s have very fragile skin.

Avoiding infection of a perm cath needs to be the responsibility of nursing/ medical staff and the patient themselves. The incidence of infection will vary from clinic to clinic but a good clinic should have zero infections. Be scrupulous with hygiene is paramount. Many clinics use the principles of Aseptic Non-Touch Technique (ANTT) through the procedure of connection, disconnection and dressing changes.

Small measures but important, patient and nurse wear a mask when connecting/ disconnecting/dressing. Look for early signs of infection, inflammation, temperature, rigors. Change dressing weekly unless dressing compromised. Advise patient not to get permcath wet in shower or pool.

I hope this is of some help.

Regards, Julie

  • In another comment dynamicdialysis (below) suggested seeing a vascular surgeon vascular surgeon, and that fistulas  can be made in the leg.

Many thanks to all so far!

Quick read: How to slow/stop your fistula bleeding

1-Snapshot_0-001The key to slowing or stopping your fistula from bleeding (whether it’s after a needle has been removed or (God forbid) a rupture) is to understand why it spurts in the first place.

Our fistulas are created by connecting a high-pressure artery, full of oxygenated blood coming at a great rate from our heart, to a vein, which is usually returning de-oxygenated blood at a leisurely rate (about 80 mL/min) from our body back to our heart (more…)

Preventing Fistula Ruptures: training course for patients

DV Poster 99DesI have just returned from the Renal Society of Australia’s annual conference, held on June 20 t0 22 this year at the Gold Coast, Queensland.  The conference is for renal professionals, nurses, clinicians, doctors and consultants. I went along because I was a co-author on one of the presentations.

The other author and presenter was Julie Tondello, a renal Associate Nurse Unit Manager at my Diaverum dialysis clinic in Diamond Valley, Victoria. The paper was called “Can your fistula rupture?” and was triggered by the ongoing posts, comments and queries about fistula rupture deaths on this blog. (more…)

Who stops Dad’s dialysis?

Dont stop me nowIsabel wrote to me last week:

I have an 86-year-old father who has only been on dialysis for 2 years, but he’s also battling lung problems-COPD, early stages of Parkinson’s and hypertension. He’s bed ridden and lays on his bed all day long day after day. Sometimes a friend comes over and helps us move him to his chair but my dad gets frustrated that he can no longer walk. (more…)

Speaking of dialysis…

1-IMG_1532As I hoped, here is the video of my speech to the Diaverum Annual Conference at Cascais, Portugal, last month.  It was called: The View from the Chair, a Patient’s Perspective.

It covers a bit of ground, but the highlights (apart from the joke at the start!) are: (more…)

A call from home

1-home_is_where_the_heartI’m back home.  Well and truly.  And what a wonderful trip it was.  We spent nine days in Portugal (Lisbon and Cascais), two in Madrid and four in London, a total of 15 days.

My original plan for this post was to write a little about the trip and a lot about the dialysis experience: how it went, how I managed, what I liked, what I didn’t, what I would do differently, what may be useful when you plan your trip.  But life, in the form of a call from home, interrupted this plan.  It’s my internal top story, and it’s pushed dialysis aside. (more…)

Lisbon adventure #1

1-pickp-001Lisbon: we were having a ball.  Different, amazing buildings; windy, cobbled lanes; tiny yellow trams squeezing through cramped mediaeval streets, shops with never-seen-before stuff that’s hard to resist.  History at every turn.  And here comes one of those delightful No 28 trams.  Will we catch it?  Absolutely.  Where’s it going?  Who cares! (more…)