Lived Experience Forum

[Shaz51]

Thank @PizzaMondo ❤️

And also have to travel 60kms to have daily  dialysis or I can get a home dialysis,  a lot to consider 🤔 

No centre in our small town 

[PeppyPatti]

Sweetheart 

@Shaz51 

My friend. 

[PizzaMondo]

I think you're doing a good job at expressing yourself @PeppyPatti 🙂

It sounds like you are doing a lot to connect with yourself and your surroundings, and that you have a love for learning!

I am curious.. what have you learned about yourself or your experiences so far from this book?

I am looking forward to hearing from you also as you start to get back onto the guitar and drawing 🙂

[PizzaMondo]

My pleasure @Shaz51 - sounds like it isn't a straightforward decision either, especially having to consider the travel to and from, costs, etc. And it is imperative to go daily? (Sorry I don't have the best knowledge of how dialysis completely works)

[Former-Member]

Hey there @PeppyPatti 🙂 xx

Thank you for those insights! I take that inspiration 'going the extra mile' as a happy complement, and I really humbly appreciate it 🙂 💜🌺

I am also really pleased to read in your post that you are feeling more comfortable in handling things that aren't so easy, and beginning to live the life you want to! that is so lovely, and Im genuinely pleased for you! 😊🤗

[Former-Member]

oh goodness me @Shaz51  that looks so delicious ! 🙂

I would love to eat a bit of all of that, but I dont think I would last long afterwards in terms of taking up my rightful place upon the white porcelain throne! haha 

Colitis loves me, and treats me with its best and most significant symptoms whenever it can 😉😁🌺

[Shaz51]

@PizzaMondo , @Former-Member 

If I go to a centre,  go on the machine for 6 hours 3 days a week 

Home dialysis is I can put the machine on overnight but you need to know how to do it 

And Mr shaz said he will give me one of his kidneys when the time comes 

I was born with only one kidney due to been born with CRS ( mum had German measles when she was pregnant with me )

[Former-Member]

Those gluten free items sound like they taste just as great as regular ingredients items @Shaz51 ..? 🙂🌺

mmm chokkie bics!

How are you doing lately Shaz? I hope things are staying steady for you 💜

And I hope Mr Shaz is doing ok too 🙂 

Have you had any luck finding a specialist for ASD?

I havent yet heard back from my friend regarding what they experienced (sometimes it can be a little while, however if /when I do hear, I will let you know) xx

[Former-Member]

Thats a lot of dialysis @Shaz51 💜

Would be great if they got a haemodialysis machine to a clinic near you, with a roving dialysis nurse to come on the days you are due to attend... 🌺

The peritoneal dialysis overnight at home sounds like a viable alternative if they cant do haemodialysis closer to home...I hope they do what suits you the best dearest xx 💜

Im guessing you'll also be considering the impact of treatment on Mr Shaz and seeing your mum, also? I hope your treating team listen to you well and support you in the best way possible xx 🤗💜

[Glisten]

@PeppyPatti  thank you. I got a little choked up with your truth.

Hugs

G