At haemodialysis - very tied up!

Tied up.

This is me tied up at haemodialysis. Needles in one arm, other arm in a cast and with blood pressure cuff on. For four and a half hours. Stopping my bleeding at the end of my session takes extra time (today around 1 hour!).

I'm still able to use a couple of fingers to drive my laptop and to keep me from being bored out of my mind. It is slow going though.

Many dialysis patients go for the 'Michael Jackson' one glove look, our hands/arms get irritatingly cold. When you are tethered to the machine with your blood circulating through the system, it gets very very cold.

Haemodialysis units need to be cool for infection control reasons.

Purple cast!

I had my wrist re-plastered yesterday. I was able to choose the colour. I went for purple. Looking very bright indeed!

Good news from the fracture clinic, I won't need surgery. I go back for a reassessment and cast change next week. I'd love to go multi colour, but that would be wasting materials.

I broke two bones in my wrist, the radius and ulna.

More info about modern day casts over at https://en.wikipedia.org/wiki/Orthopedic_cast

Broken wrist! Ouch!

Broken right wrist.
Ouch!

Last night I tripped outside in the dark and broke my wrist in two places. Lucky my fistula arm was okay, it was my right wrist.

So now I can't drive among other things (no dialysis machine set up or needling myself. This slows down my home haemodialysis training somewhat. Being a broken bone on a dialysis/renal patient, my arm will probably take longer to heal. I may even need an operation depending on how things heal. I'll find out more next week.

Big shout out to the Western General Footscray emergency department doctors, nurses and radiologists, they were great! Many thanks for making a very painful visit more comfortable. Big thanks to Greg and Danny who played a big part in keeping me calm.

Pedal power at Dialysis

I was reading on the Big D and me blog that exercising at dialysis by using a portable foot pedal exercise bike can improve dialysis treatment outcomes. See https://bigdandme.blog/2009/08/07/riding-an-exercise-bike-on-dialysis/ and https://bigdandme.blog/2009/10/02/riding-an-exercise-bike-dialysis-part-2/.

I'm very interested in how it can increase the removal of phosphate. I just seem to have too many dairy drinks and foods.

I wanted to find some other references that were more of a scientific nature. I found: 

- Time and exercise improve phosphate removal in hemodialysis patients.

Presented in part at the Australian and New Zealand Society of Nephrology Annual Scientific Meeting, Perth, Australia, September 1–3, 2003.

You can see the summary, but need a login to view the full article. See http://www.ajkd.org/article/S0272-6386(03)01221-6/pdf -

- A structured exercise programme during haemodialysis for patients with chronic kidney disease: clinical benefit and long-term adherence. 27th August 2015. See: http://bmjopen.bmj.com/content/5/8/e008709

- Aerobic exercise increases phosphate removal during hemodialysis: A controlled trial. January 2014. See
https://www.researchgate.net/publication/259805418_Aerobic_exercise_increases_phosphate_removal_during_hemodialysis_A_controlled_trial
 

- Intradialytic exercise improves physical function and reduces intradialytic hypotension and depression in hemodialysis patients. August 2017. See https://www.researchgate.net/publication/319299252_Intradialytic_exercise_improves_physical_function_and_reduces_intradialytic_hypotension_and_depression_in_hemodialysis_patients 

It would seem that this is good for you and can improve health outcomes. Turns out my unit has one cycling unit that can be attached to a dialysis chair. It is used for restless legs. I was going to look into purchasing one but will give this a go first. The one in our unit does not record anything (eg time, kms, etc), I'd probably prefer one that keeps track of things. If it works out well, I'll look at purchasing one (or trying for a donation).

Having measurements might be good encouragement for some. I've been reading on the Big D and me blog how another centre (in the US) use a bike pedal machine to run a race around Idaho. See news article here: http://tdn.com/news/local/dialysis-patients-improve-energy-treatment-through-cycling/article_90a03ce2-1aa0-11df-ac61-001cc4c03286.html (from Feb 15 2010)

I'll post some updates on this topic in a little while.

So this is haemodialysis, I'm doing it three days a week (warning: needles and blood)

This post is mainly for my family, but also for others who are interested in what my haemodialysis treatments involve. If you don't like the site of needles or blood, best not to watch the videos.

I'm kind of training for home haemodialysis at the moment. I can set up the machine and I have needled (1) myself. I couldn't do much more than that as my fistula needed some repairs. You've seen a picture of my recently operated on fistula. It usually looks better than that, I'll post another picture soon.

Here is a video of the set up of a fresenius 5008 dialysis machine. We use these at my centre. I will use a variation of this unit when I do the home training. This video is very long (15 or so mins): https://www.youtube.com/watch?v=6DM-3v0jYd4

The next video is of a nurse cannulating and connecting a patient to the dialysis machine. It's a life support machine, without it, I'd eventually stop working altogether.

When I go home, we will use needles that have quite long lines for connecting and disconnecting from the machine. The long lines also makes it easier to pull the needles out at the end.  Pulling the needles out is usually performed with the hand that has the fistula in it. The other hand needs to apply pressure over the needle site to stop the bleeding (for me that can sometimes take a very long time!).  This video goes for 8 or so minutes and involves needles and blood. Don't watch if you get queasy. https://www.youtube.com/watch?v=Z_ZcDE-PTgI

I currently do this three days a week. I'm on the machine for 4.5 hours, most people in Australia do 5 hours three days a week. People that do less are people who don't weigh much. When on home haemodialysis I can spend more time on the machine. This will result in better dialysis and clearances of toxins. It also means that to some extent you have fewer dietary restrictions. The longer you can stay hooked up the better your overall health will be.

I spend around 20-60 mins driving into dialysis and home after. There is the time to set the machine up. There is also the time it takes to connect and disconnect me and the machine. I've mentioned my bleeding time records.

I still have bad bleeding days even when my fistula is working great. Usually the reason is because my INR is too high (blood thinning indicator). Info about INR at wikipedia here: https://en.wikipedia.org/wiki/Prothrombin_time#International_normalized_ratio

Powerful Owl Social Media Campaign - The Guardian Australia's Bird of the Year 2017

The Guardian's bird of the year competition 2017 is an opportunity to highlight the plight of the Powerful owl. 

With the recent news about automated voting for the Powerful owl, I'm guessing there was a bit of hactivism going on by people who really care about this bird. 

Ref: https://www.theguardian.com/environment/ng-interactive/2017/nov/20/australian-bird-of-the-year-2017-vote-for-your-favourite (see info right at the end).
   

Powerful owl picture sourced from http://www.eastgippsland.net.au/gallery/birds-of-east-gippsland

What can we do with a 6 day social media campaign?    

The ibis, aka the bin chook, will get another opportunity to star in this Australian bird competition (should it be annual). It eats rubbish out of bins and drinks bin juice. The Powerful owl is losing it's home through land clearing.

The Powerful owl is on the IUCN Red List of Threatened Species, although it is marked as of 'least concern." Ref: https://en.wikipedia.org/wiki/IUCN_Red_List#2012_release and http://www.iucnredlist.org/ 

Such a powerful bird with super instincts it is able to relocate to other areas.  While they will probably survive, do we really want to force them to move and adapt their ways? This is already being seen now by me* and others, that is why it is important to do something now to save their habitat from greater loss.
 

Save the Powerful owl by voting for it and spreading the word. Raise public awareness around native animal habitat loss due to the clearing of our bio diverse forests.

Please no more automated voting, turn this into a social media campaign.

Spread the wise word.  

Voting is open until the 9th of December. One vote per real person.

Link to 'The Guardian' 2017 bird of the year vote:  https://www.theguardian.com/environment/ng-interactive/2017/nov/20/australian-bird-of-the-year-2017-vote-for-your-favourite

Wikipedia info about the Powerful owl at https://en.wikipedia.org/wiki/Powerful_owl 

 

* My partner found an interesting large feather, my 3 year old nephew asked if it was a 'zebra feather?' We looked for pictures of the feather online and found that it might be a Powerful owl feather. What do you think?

 

Another haemodialysis bleeding record! 2 hours and still going!

Today was another bad one. Just as I was scheduled for the fistulogram and plasty due to a major blockage and narrowing in my fistula. For those not worried about viewing surgical procedures, here is a short video of a fistulogram.

I had dialysis before the procedure but at the end the bleeding from the arterial port just wouldn't stop. It was spurting at times, a lot of pressure.

It doesn't help that I'm also on blood thinners. Today we ran my dialysis session heparin/clexane free to minimise bleeding.

The team in day procedures was calling the dialysis unit constantly wondering where I was. In the end I had to be wheeled over to the surgery while my arm was still at risk of bleeding if we let go (we also had a clamp at this stage, I had to hold it on secure). My nurse and our SSA were fantastic. Big thanks to them and all back at the dialysis unit.

The surgeon advised he would stitch my fistula to stop the bleed. 

Here is a picture of my arm after the surgery. Looking quite nasty.

Apparently this is quite a short fistula, we need to be cautious when needling it. The bit I have circled in pink is a bruise that has developed after the surgery. I'm keeping an eye on it.

I'm now home which is a relief as I wasn't sure if I'd get  home. I'm  back at dialysis on Thursday.

Thanks also to all the team involved in the procedure. Hopefully I won't be breaking any bleeding records for a while.

Personal best today - longest dialysis bleed ever!

Today was a crazy day at our dialysis centre. The staff were kept on their toes. We had two emergencies. I won't elaborate except to say everything turned out okay in the end.

For me, I set a new personal best record. I usually have trouble with bleeding at the end when the needles come out. I have had to be moved into a 'special' area so the unit could still run a dialysis session/seat for the next person requiring treatment. This happens to me a bit. Today I took 1 hour and 45 mins to stop. I think that is my longest time.

I need a fistula intervention as I have a blockage/narrowing in it. It is getting worse by the week. Finally something is happening next Monday. This is a new reason as to why I'm bleeding a lot more. The other one is that I am on warfarin blood thinners as I have antiphospholipid syndrome (APS or Hughes syndrome) and have had several thrombotic events. Such a fun combination for a dialysis patient. Not.

Here is a picture of the front entrance of the dialysis clinic I attend 3 days a week, sometimes for as long as 7 hours! It's kind of like going to work. As explained in earlier post I tend to do online work while I do dialysis. One handed typing is slower but I'm fairly quick and pretty handy with keyboard shortcuts.

St Vincent's Community Dialysis Centre, Gertrude St, Fitzroy

A victory for forests in Victoria

Great news! Finally! Victorian forest activists and their supporters have a small victory.

From The Age 24/11/17 - "The Federal Court on Friday issued orders stating that VicForests will not harvest timber from 34 sites, known as coupes, in the Victorian central highlands. VicForests agreed to suspend logging operations until a hearing in mid-December that will consider whether its logging activity is compliant with the regional forest agreement and exempt from federal laws."

Ref: http://www.theage.com.au/federal-politics/political-news/logging-halted-in-34-areas-as-environmentalists-challenge-contentious-forest-deal-20171123-gzrch4.html

We need more people up in arms and writing to ministers, we need the wider community to know. This is our water catchment. This is the home of rare protected and wonderful animals. See http://www.tcha.org.au for more info and to find out about donating or getting involved. I will try and post links to ways to write to letters to ministers or support the Victorian central highlands campaign.

At the start of November we also saw a victory for old growth forests. See this Guardian article: https://www.theguardian.com/australia-news/2017/nov/01/conservationists-win-court-battle-to-stop-clearing-of-old-growth-victorian-forest

Also see http://www.eastgippsland.net.au/ and http://www.geco.org.au/

And who wouldn't want to protect this:

Photo taken from http://www.geco.org.au/kuark_forest

The campaign is not over, funds are needed to help keep legal actions going, donate here https://chuffed.org/project/save-the-kuark-forest 

You can also email the premier Daniel Andrews by visiting http://www.geco.org.au/no_more_lawless_logging or sign a petition over here: http://www.geco.org.au/sign_a_petition_to_the_premier

There are so many reasons to support protecting our forests, please go and do something now.

Daisy Cow itch relief - works great!

Being on haemodialysis for me often means I have itchy skin due to high phosphate levels. If only I could cut out dairy, particularly the lattes that I love to drink.

Over the years, the itching has caused my skin to become very dry and flaky. Lucky/unlucky for me, my itches seem to be in very specific spots and not all over my body.

I've tried so many different things and nothing gave much relief.

I read a post on one of the dialysis forums I've signed up to via facebook - Dialysis and Transplant Association (thanks!)  Someone mentioned Daisy Cow itch relief cream as the only thing that helped them.

Being a local product (country Victoria), I ordered some to try. If only I knew about this cream ages ago. It is great! It works! My skin is much happier.

I'm happy to recommend this product to anyone, I have mentioned it to the other dialysis patients that attend my centre. I highly recommend it.

 

Website at https://www.daisycowsoap.com.au/ - they sell a range of other products too. My next order includes some daisy cow soap too. On facebook you can find them at https://www.facebook.com/daisycowsoap/

I'll try and post some before and after pictures soon. 

Crappy pill splitters and the better Apex Ultra splitter.

Being a haemodialysis patient with antiphospholipid syndrome, I'm on a lot of medication, morning and night. It is more economical to buy higher dose pills and split them.

I have systemic lupus erythematosus (SLE), the main thing being that, over time, it destroyed my kidneys. In particular I have lupus nephritis. I also have antiphospholipid syndrome. This means my blood has a tendency to clot. I'm on blood thinning medication for that.

I've done peritoneal dialysis in the past (maybe 6 years of it). I got a very bad infection and went onto haemodialysis. First via a chest catheter and then via a fistula that was surgically created for the purpose of sticking in two large needles (one for outgoing blood and one for returning blood). More on this later...

Here is the list of medications I currently take:

• Metoprolol for blood pressure on non dialysis days (only 1/4 of a 25mg tab twice a day).
• Warfarin for thinning my blood, currently on 2 and 2.5 alternating dose, I use the Marevan brand.
• Citalopram - 1 a day, been on this ever since my transplant failed (straight away!) back in 2015.
• Calcitriol - 1 a day.
• Folate - 1 a day.
• Vitamin B - 1 a day.
• Renagel phosphate binder x 1-2 with meals, snacks and dairy.
• Clexane for when I'm on dialysis to stop clots forming (I have an allergy to heparin).

The warfarin is easy to split in half because it has good split lines. I can do this by hand.

There are a couple of tablets I need to split, the metroprolol and citalopram. The metroprolol gets split into quarters and the citalopram is halved. I can't break either pill with my hand and don't feel confident using a sharp knife on the pills.

I use a pill splitter. My first splitter was the extend care (solid blue one) and it has given me hours of frustration. I've used that the most, but lately I'm just over it.

I decided to purchase 4 more splitters. Not one of them works fantastic. Three of them are useless. Only one was actually useful, the apex pill splitter. I find I am now using this one instead of the extend care.

The apex splitter has rubber wings that hold the pill to prevent it moving around. This works really well most of the time and works better for round pills. As with all splitters, as soon as you close the lid to cut the pill, there is movement and the pill can slip. The clear plastic is useful as you can see when this happens. Still, this has resulted in some disaster cuts.

Here is a picture of my current collection of pill splitters. Sorry about the picture quality, originally I forgot to snap the pink one (why it is by itself). One is also a pill crusher and performs well in that aspect so still has its use.

• The pink one (first photo) is off ebay and is junk. No redeeming features whatsoever.
• The all blue extend car (second pill splitter in the next picture) is the first pill splitter I got, it was from a local chemist used it for years and years so I guess I coped with it.
• The one labeled 'nutritive' (white and dark green) is also off ebay and contains a pill crusher. It works well for pill crushing. 
• The all green one is also off ebay, I've tried it once or twice and have now given up on it. 
• The Apex ultra pill splitter is both clear and blue plastic. It has rubber wings inside it. I only got this late in 2017. 

The pink pill splitter.

Pill splitters closed.

Pill splitters open.

I'm open to tips for better pill splitters. I'd really like to hear from someone who has real life experience using them. I'd be interested in testing pill splitters too.

Post a comment here or drop me an email.



Update January 2018

Having now been using the Apex ultra pill splitter for more than three months, I'm a fan! It is the best pill splitter I've used. The rubber wings hold pills in place for easier and accurate splitting. So far the cutting blade is still sharp. From other internet reports, I've read the blade can become dull.  I purchased mine from Chemist Warehouse. Quite an expensive pill splitter compared to the others I have tried...but worth it.

Shaking the cobwebs off this blog!

Shake, dust, blow and renew. Lets see what happens next.