I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: haemogoblin on June 03, 2010, 09:39:18 AM

Title: Sharing my home haemo story
Post by: haemogoblin on June 03, 2010, 09:39:18 AM
Someone suggested that as i haven't been around for a while and things have changed, I should maybe tell everyone what's been going down in the land of the haemogoblins.

Sep 08- Had a transplant from my mum.  They cut her vena cava, she lost 11 units of blood, but thankfully not her life.  The kidney was useless- it never worked, but they said it did for 36 hours because I was passing urine (which my polycystic kidneys still do by the way...

Oct 08 Back on dialysis through permacath

Nov 08 Get a gambro machine from the NHS put in our tiny 2 bedroom house. 

May 09 Married Katie in her parents home village of Sherston, Wiltshire.  Nice and warm sunny, beautiful day!

June 09 5-day 'minimoon' in Dublin.  didn't dialyse at all there, still passing urine.

July 09 Honeymoon to Rome and Abruzzi.  Dialysed a few times in Italian centres.  They were pretty cool- remember to put the emphasis on di AL isi. diALisi.  Coppice?

Aug 09 Clearly I have been underdialising... Couple of my cysts burst whilst in West Wales, and it hits me like a ton of bricks

Sep 09 In hospital with a staphylococcus infection

Oct 09 Off work (i am a supply teacher) for the whole of this month.  We are poor as church mice.  The home haemo girls from Cardiff
                    (diane, sarah and shirley) are up the house 3 times a week.  Wife and I not enoying much newlywed privacy...

Nov 09 Up my dialysis to 12 hours a week- starting to pick up.  Also get a new job doing music projects with disadvantaged kids in Cardiff.
                    Lots of fun, flexible hours and more money!!

Dec 09 Felt well enough to go out on my bike for a ride- the first in nearly 2 years.  Did a 30-mile charity ride at the end of the month!

Jan 10 Finally, reluctantly, get my fistula done.  It starts buzzing straight away, and even woke me up in the night when I was sleeping on 
                    it.  It's a beaut. Starting climbing hills again- will post some pictures!!

March 10 Start needling it- a couple of blows to start, but all is well.

May 10 feel well enough to start sprint training at my local athletics stadium again.


So that's me up to date.  I am currently on the machine with 3.24 hours to go. (zzzz) Will watch 'Ashes to Ashes' now on BBC iplayer.  Maybe Terminator later. 

Home haemo on the fistula really gets in the way of our lives.  We have a tiny house, so we have no room thanks to the bloody machine.  But I'm also alive thanks to the bloody machine so...

BAD THINGS:tly
1. That *******ing BEEP BEEP from the machine.  Please shut up.  Why do you only beep, when I'm trying to sleep?
2. When my King Charles Spaniel wants to come in for some attention and inadvertently pulls the needle out of my arm...
3. I need a poo.  It takes SO long to put the machine into circulation, and when I get to the toilet...nothing.
4. That 'furry-headed' feeling I get after about 3 hours into it. I can't explain it, I feel like my face needs peeling off.
5. The time out of my life it takes to keep me alive.  The wasted, wasted time...

GOOD THINGS- dw i yma o hyd... I'm still here...

Haemogoblin




Title: Re: Sharing my home haemo story
Post by: monrein on June 03, 2010, 10:51:12 AM
Great update and brilliant attitude.   :flower;
Title: Re: Sharing my home haemo story
Post by: Bajanne on June 03, 2010, 04:02:09 PM
Thanks for sharing with us.  That is one of the strengths of this IHD family.  When we share our experiences we help others.