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.