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I have CKD and Gastroparesis AMA

Hi.
As the title says, I have Chronic Kidney Disease. Diagnosed as of September 2019 as Nephronophthisis. And in February 2020 I was given genetic results as being NPHP1 gene deletion.
Gastroparesis is a disorder where the exit pipe, known as Duodendum, is thinner than it should be, meaning my stomach doesn't empty as quickly as it should be

So AMA
What's your favourite designer brand?
Reply 2
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Foxehh
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How does it affect your everyday life?
Reply 3
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Euci
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Original post by 5hyl33n
What's your favourite designer brand?

don't have one. With regards to clothes. If it fits and if its black, grey or blue I will wear
Reply 4
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Euci
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Original post by LovelyMrFox
How does it affect your everyday life?

I have an almost 8 hour session of Peritoneal Dialysis every night, so I have to get that set up every evening. With regards to my stomach, it means I can't eat a lot of things, and my meals have to be small or I risk being sick. And I have to eat as little fat and fibre as I possibly can, so thats stuff like nuts, cereal, fruit and veg mainly to avoid
Are you often open about your health conditions with people in real life?
Reply 6
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Original post by glassalice
Are you often open about your health conditions with people in real life?


Often when I go out, if it is for an extended period of time, I have a wheelchair cause kidney failure also comes with anemia and I get tired very quickly so if I am sat in the chair I often don't need to explain. But if people ask, which I do get, cause I can stand and people give me looks when I stand up. Looks that say "You can walk you don't need the chair." I then explain my health condition. Luckily they all understand after and so far I haven't met anyone entitled to try and take the chair from me.
But recently due to COVID, I have been sheilding and have barely been outside since March
Original post by Euci
Often when I go out, if it is for an extended period of time, I have a wheelchair cause kidney failure also comes with anemia and I get tired very quickly so if I am sat in the chair I often don't need to explain. But if people ask, which I do get, cause I can stand and people give me looks when I stand up. Looks that say "You can walk you don't need the chair." I then explain my health condition. Luckily they all understand after and so far I haven't met anyone entitled to try and take the chair from me.
But recently due to COVID, I have been sheilding and have barely been outside since March

Have you being going out at all now the lockdown restrictions have reduced?
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Original post by glassalice
Have you being going out at all now the lockdown restrictions have reduced?

I went for a short walk the other day but in a quiet and secluded area with not many other people around.
Despite lockdown being restricted, my doctors have advised me to keep sheilding until they say, even though the government says its ok to stop sheilding
Original post by Euci
I went for a short walk the other day but in a quiet and secluded area with not many other people around.
Despite lockdown being restricted, my doctors have advised me to keep sheilding until they say, even though the government says its ok to stop sheilding

What do you spend your time doing? Pre Covid, where you able to go to school or college or work?
Reply 10
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Original post by glassalice
What do you spend your time doing? Pre Covid, where you able to go to school or college or work?

I finished my A Levels last year and my plan was to go to UCLAN in Preston but I was admitted to hospital before I started so I cancelled my application.
Pre-COVID I was just studying cause I can't get a job I tire so quickly.
The plan was for me to do an Open University course starting in October, but due to COVID and also transplant is on the menu, the near future is all a bit unknown so I decided it was best to wait another year
Original post by Euci
I finished my A Levels last year and my plan was to go to UCLAN in Preston but I was admitted to hospital before I started so I cancelled my application.
Pre-COVID I was just studying cause I can't get a job I tire so quickly.
The plan was for me to do an Open University course starting in October, but due to COVID and also transplant is on the menu, the near future is all a bit unknown so I decided it was best to wait another year

When you get the transplant, what do you plan on doing that you can't do at the moment?
What are you planning on studying when you're well enough?
What about romantic relationships? Do you think it's become a barrier to that?

[also I hate when people judge wheelchair users that can walk, big pet peeve]
Reply 13
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Original post by glassalice
When you get the transplant, what do you plan on doing that you can't do at the moment?
What are you planning on studying when you're well enough?

After Transplant I would like to go to university but I gotta see what happens with my life first.
I'm planning on studying the Open Universities Maths and Physics course cause thats the stuff I like
Reply 14
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Original post by physicsamor
What about romantic relationships? Do you think it's become a barrier to that?

[also I hate when people judge wheelchair users that can walk, big pet peeve]

Relationship wise, I consider myself to be asexual aromantic, so to be honest I have no interest in relationships
Honestly wouldnt wish dialysis on anyone, had to watch my nan have it 3 times a week and she was always so exhausted afterwards :redface:
Really hope you get your kidney soon :hugs: this thread has made me reconsider my organ donation choices
Reply 16
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Original post by CoolCavy
Honestly wouldnt wish dialysis on anyone, had to watch my nan have it 3 times a week and she was always so exhausted afterwards :redface:
Really hope you get your kidney soon :hugs: this thread has made me reconsider my organ donation choices


thanks

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