Thank you to all those past and present that work at Overclockers.

As gamer's for a long time we were looked down on, not a real hobby like football or even going out to the pub, these days it is much more mainstream but when Paola stopped being able to walk the dogs with me or even visit the shop we instead explored Everquest together and VR has taken it to the next level, she has an Oculus Rift setup simply because it is a little lighter and the touch controllers are lighter than the Vive wands (I have a Vive upstairs), on a good day We can pilot a star ship together in Bridge commander me as the Captain her as Engineer (her choice not mine) how cool is that or she can actually exist in SkyrimVR this is someone who has to put in so much energy just to get into the wheelchair when we go to the hospital but in our own home worlds are available to us now I never imagined.

So when I save up, when I budget for the next component or game I really cannot make a mistake and the parts have to last (they can be used for 16-18 hours a day sometimes) it is why having this community and Overclockers as a place I can trust when building the next project really does matter, if Paola lost her computer or our network went down or if the Nas failed (yes I have backups :) ) it would be like a person loosing a family car.

After all the Nas with its films and series (I spent a year transferring all our DVD's to the drives) mean no matter what she has something to watch if she can't sleep.
 
Hi there

Ok we could try and aim for mid Nov at some point if you wanted? It is peak season for us at the moment and sparing time can be quite difficult to say the least.

Bailey
 
Bailey said:
Hi there

Ok we could try and aim for mid Nov at some point if you wanted? It is peak season for us at the moment and sparing time can be quite difficult to say the least.

Bailey
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Mid November sounds great, should let the new tweaks be worked out and I was going to pop over around that time anyway to pick up some components :)
 
Calranthe said:
Mid November sounds great, should let the new tweaks be worked out and I was going to pop over around that time anyway to pick up some components :)
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Ok sure no problem, keep me updated and we can get something sorted for you, we will make a good day out for you both :)

Thanks again

Bailey
 
As a full time carer for my partner this really hit me reading this. Your very inspirational and that's a lovely offer from Bailey :)
 
Dave85 said:
As a full time carer for my partner this really hit me reading this. Your very inspirational and that's a lovely offer from Bailey :)
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It is sad that as a full time carer for a partner we never really get the recognition for what it entails, as a nurse once told me "I get to go home at the end of a shift, you do not" i know more about my wife's illness than most Doctors in fact now when we go to see a consultant they ask me what I think we should do and when Paola was in hospital they let me come in at 7am to deal with her Dialysis and at 10pm at night to set it up because no one was trained as well as I was kind of humbling.
 
Bailey said:
Ok sure no problem, keep me updated and we can get something sorted for you, we will make a good day out for you both :)

Thanks again

Bailey
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Will keep in touch and let you know, if I disappear for a day it is just because things get hectic sometimes. Thank you so much for this :)
 
Calranthe said:
It is sad that as a full time carer for a partner we never really get the recognition for what it entails, as a nurse once told me "I get to go home at the end of a shift, you do not" i know more about my wife's illness than most Doctors in fact now when we go to see a consultant they ask me what I think we should do and when Paola was in hospital they let me come in at 7am to deal with her Dialysis and at 10pm at night to set it up because no one was trained as well as I was kind of humbling.
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It's very true we do often just get ignored. My partner is fortunate enough to be able to still do a few things herself on the good days. I'm studying nursing at the moment simply to get the experience for when she cannot as I know the local services would struggle to meet her needs and that is quite the downer sometimes. Feel free to drop me a trust email if you ever need someone to vent to as I know how easy it is to get frustrated and angry.
 
You are a hero. I can't imagine how hard it is to deal with all you are doing.

I wish you both well and hope your wife's conditions improve as much as possible.
 
A truly lovely story, this forum is extremely supportive. It's a great community when you put the bickering to one side :p

Great gesture from OcUK as well :)
 
And this is why I am still with the company over 10 years on. Thank you @Calranthe for your kind words and I look forward to you both visiting Overclockers UK soon. :)
 
I've only just seen this thread and it's both sad and incredibly heart warming.

I've always thought Ocuk was a great company but there's no doubting it now, its such a great gesture from the team. You guys rock!

@Calranthe I can't imagine how difficult it's been for you and your wife but its clear you love her very much. You both have my best wishes and upmost respect.

If you send me your pay pal info via trust I'd like to contribute a little bit to helping you get that ssd or whatever else you guys could put the cash to.

Maybe we could a collection going guys?
 
I promised to keep people in the loop, Dialysis nurse visited last night and took bloods (so that the Prof has the newest readings on Monday for the appointment) we have access to something called Patient View, it allows us to access our test results online, basically means I can access the results of any tests earlier than a Doctor or consultant because they have other patients to deal with, when dealing with dialysis the numbers really matter and you can even input the Data into a graph.

Can be a little overwhelming so its purely voluntary.

Dialysis comes in two types Hemo and Peritoneal, Hemo takes the blood out of your body and cleans it in a machine it is the one you see in most medical dramas, you go to hospital three times a week and it can really wear you out some people cope with it better than others, you can even have it at home now, the home therapies team will train you up and sign off on it but its a big machine and you have to carry 30 days of supplies.

Peritoneal is absolutely amazing, the idea that they can use the lining in your abdomen as a jury rigged kidney is cool as hell, I mean using another part of your body as a Kidney, it has limitations if you have had stomach surgery or anything that has put holes in that lining it will not work, each night a fluid is pumped into the lining and it slowly or fast draws out excess fluid and excess toxins, benefits are that you are at home and if you can sleep through it then you day is your own.

PD (Peritoneal Dialysis) is what Paola is on and blood results matter a lot.

Dialysis can never take the place of your Kidneys, a massive note to you all, look after them they do an amazing job, not only balancing fluid in the body, they regulate red blood cell production (the really nice one that transports oxygen around your body) blood pressure and remove all types of bad stuff in your blood. What you are looking for on permanent dialysis is "Enough"
Take out enough fluid that it allows you a quality of life liquid allowance,
Take out enough toxins to allow you enough energy to do more than lay on your back.
Limit the protein and vitamin removal (dialysis isn't as smart as your own organs it takes out the bad stuff but also the good stuff, malnutrition is an issue)

So on to the results (you know telling you about all this makes me realise just how much I have learnt its daunting)

Fluid balance is going in the right direction, her weight is good and sticking around the 60-61kg which means all the excess liquid going in is going back out.
All basic blood work is stabilising, that is Red cells, White Cells and Platelets it all takes a bit of a knock when dialysis starts but she takes a booster that ramps up her Red cell production.
Toxins in the blood are rising, we still need to tweak it, downwards numbers would be amazing but even just stabilising would be fine (this is the main discussion and plans for Monday) without taking away from the cycles that remove liquid we need to introduce more cycles that remove toxins.
All other readings are in the okay for a person who is on Dialysis.

We are not looking for her to be able to go on long walks to the park or anything like that we have a realistic goal that she is well enough to go out in the wheelchair and for her to have enough energy to play her games and have hobbies (we bought a really cool wheelchair with off-road tires, not motorised but it can go anywhere).

Sorry for the long post.

Oh one more thing supplies, no one can prepare you for the amount of medical supplies you need to carry at home to do dialysis, think of it this way, you need to keep 30 days of all the supplies at home, each day we use two boxes (3ft by 2ft and 1ft high) cassettes and drainage bags which take up another 3ft by 2ft, you have to store that * 30 inside your house.
 
OcUK.....you come for the tech, and stay for the community.

Calranthe, thank you for the educational and open posts about Paola's and your circumstances. ALL is horrible enough for adults as it is without adding Philadelphia chromosome to it. I'm sure that the docs will have covered everything with you both about PD, but if the PD fluid ever starts looking a bit cloudy when it's drained, please flag it up with the docs as soon as possible.
 
Vidar said:
I've only just seen this thread and it's both sad and incredibly heart warming.

I've always thought Ocuk was a great company but there's no doubting it now, its such a great gesture from the team. You guys rock!

@Calranthe I can't imagine how difficult it's been for you and your wife but its clear you love her very much. You both have my best wishes and upmost respect.

If you send me your pay pal info via trust I'd like to contribute a little bit to helping you get that ssd or whatever else you guys could put the cash to.

Maybe we could a collection going guys?
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Thank you for the offer, before doing anything like that I would like you or someone else make sure its okay with Ocuk, we all know what the internet is like and I do not want to cause any problems or do anything that could affect us being part of this community, it is very kind of you and yes I have to budget carefully for everything we have but I would not want anyone thinking that was the reason for my post.
 
NMBlack said:
OcUK.....you come for the tech, and stay for the community.

Calranthe, thank you for the educational and open posts about Paola's and your circumstances. ALL is horrible enough for adults as it is without adding Philadelphia chromosome to it. I'm sure that the docs will have covered everything with you both about PD, but if the PD fluid ever starts looking a bit cloudy when it's drained, please flag it up with the docs as soon as possible.
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Yes we check every morning, for those that do not know, if the liquid starts going cloudy then its a sign of infection which can become life threatening very fast. Mind if I ask where your knowledge comes from?, its okay if you don't want to.

One of the biggest risks with PD is infection, you have open access to the bodies internals, we have four types of cleaning product in the house because you can't use alcohol based on or near the dialysis tube but you use it other places, it damages it over time, we have an evil cleaner called Hybiscrub (wrong spelling probably) very good hospital grade cleaner but it dries your hands out severely and a basic anti-bactical soap plus even basic washing up liquid and you are trained to use all of them.

Basically any suspicion of infection means straight up to the Renal unit or if really concerned straight to the local AE. no messing around no second guessing.
 
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This community has helped me out more than once financially when I've really been stuck and in a dark place, I don't think there's been any rule changes but can ask. I also don't think you're motivations are financial gain for a second. I wouldn't be able to send to much but if it helps its something.

@Bailey would this be okay mate?
 
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