News on Wife (reason for being away for a day)

Calranthe said:
Paola's Dialysis is so advanced and adaptive no one in the hospital is fully trained for it, the adaptive programs running on the machine were created based on medical journal papers one of the Doctors researched, its ground breaking, its unknown territory.
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I didnt even know there was anything "to adapt" so to speak?! Just assumed blood in one side, spinney things in the middle, blood out the other.
 
kindai said:
I didnt even know there was anything "to adapt" so to speak?! Just assumed blood in one side, spinney things in the middle, blood out the other.
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Peritoneal dialysis is something very different, what you are talking about is what most people see on TV it is called Hemo Dialysis, it has its own risks, you put a persons blood through a machine 3 times a week usually, it can be very rough on the person having it done, you lay or sit there for 4-6 hours while it is being done.

Now PD has the advantage that it happens over night, your day is your own, a liquid is pumped into your peritoneal lining that liquid "flows" in, then stays in place "dwell" then is removed "outflow" while it is in there it absorbs excess fluid and toxins from your body.

The trick is some peoples lining is a fast absorber, some a slow and others behave weird lol.

A normal system is called "tidal" its all based on a database and they calculate how much and how long to give you to optimise your results. lets say you are a fast absorber, you may have 14 cycles a night each cycle a 5 minute fill a 30 minute dwell and a 5 minute outflow into the drainage bags, then repeat, if they left it in longer then the toxins and fluid can reabsorb into your body.

Now Paola has a strange lining, (things went wrong and she ended up in hospital with liquid on her lungs) so they had to program an adaptive program something they never had before the first 3 cycles are fast cycles to remove excess liquid, too fast to absorb the larger molecule toxins, then she has 5 slow cycles which remove toxins but allow a little of the liquid to reabsorb, then 3 more fast cycles to remove the rest of the excess liquid.

It was working well, things were going in the right direction as I said she was for the first time able to get into the car from her wheelchair with almost no help.
 
Okay call me crazy as it is 6am in the morning (just omw to the hospital) is there anyone here who uses whatsapp and would have time to chat and get to know Paola while she is in hospital, while talking last night we were trying to figure out a way to keep her spirits up and it just came down to being lonely, I was going to dip into what is left of our emergency fund grab a basic laptop, stick discord/steam on there so she could play basic PC games and maybe chat to people she knows online, BUT before anyone offers one the wireless signal is not good and she isn't really well enough, laptops are too heavy.

She just wants people to chat with you don't have to tipy toe around the problems she is like me open and blunt.

If any of you want to then let me know and I will send her phone number.

Its fine if you don't:)

I am out now till about 9am off to hospital
 
I'm sure people will be up for it one to one, but if anyone wasn't comfortable doing that there's always the option of a group chat to help keep things moving and ensure there's always someone about :)

Plus that's usually where the funniest conversations occur!
 
Stolly said:
how you keep going i do not know.
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You kinda just do - at no point do you even question it. As an outsider, obviously it's different - we see what the person goes through, but for the person going through it, they just cope. It's only when you come out the other side and reflect on it, you realise how strong you were :-)

@Calranthe - your "story" is a hard, brutal one, but at times, it's also very happy. Remember that. Keep strong and keep going :)
 
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MrRockliffe said:
You kinda just do - at no point do you even question it. As an outsider, obviously it's different - we see what the person goes through, but for the person going through it, they just cope. It's only when you come out the other side and reflect on it, you realise how strong you were :)

@Calranthe - your "story" is a hard, brutal one, but at times, it's also very happy. Remember that. Keep strong and keep going :)
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You are right, you just do and it is why when people say "I could never do that" it is hard to explain, for the person who is ill they never see themselves as brave or courageous they never think they do anything special, I have seen those that can't handle it and just give up, death usually follows, Paola is much stronger than me in my eyes because I see what she goes through but unless I am explaining to to others it is very hard to see that I do anything special but I do believe those that take up the role of a carer for a loved one are a special breed, heroes every one of them but turning that same thought on myself, nope just can't see it.

Okay on to news, I may nap today, I am feeling kind of exhausted.

Situation as is.
Dialysis/Renal team is very happy with how things are going, fluid in fluid out its balancing well.
Hemo team is just waiting to restart medication.
Coronary team, big meeting today between all the heads of department, who will study her Angiogram, as soon as available an echo cardiagram will be done, then if all is good she may be coming home end of week or start of next week.

Medical route is easy just slowly build up the medication to keep her heart stable and send us home with a care package plus coronary nurse visits.

Surgical is basically another Angiogram but this time a small needle is used to open up the arteries.

Then 8-9 weeks she gets some sort of monitoring/pace maker or defribulator whichever one works for her situation.

Now for the important bit,
if you all take one thing from this situation let it be this, do not take what you have for granted, do not put off till next year what you can do now, its all well and good saving a nest egg and planning for the future but do not forget today, don't put off friends, family, let people you care for know you care, hell you do not need an officially sanctioned holiday to buy a gift or take someone out, have a weekend off and spend time with those that matter, even if its just playing your favourite games chilling out and eating take out pizza never feel guilty for doing what you enjoy.

Otherwise what the hell is the point to it all, me and Paola were just a normal 20 something couple with plans until one day one random event on situation took it out of our hands.

If I could have one wish beyond curing my wife it would be that no one else ever has to go through what we have.
 
I'm sorry 2 minutes after I wrote that a phone call from the hospital told me to come in quickly, she had two cardiac arrests and they couldn't bring her back I can't do this now will be back later so sorry
 
:( i'm sorry to hear that. What's crazy is that you're apologising for not posting on here!

Hope you can be surrounded by loved ones to help you through. Losing your partner is horrible at the best of times but i imagine having been Paulas carer for so long you'll feel the loss so much more.
 
Such a sad thing to read and what an incredibly brave pair you have been.

May she rest in peace and my advice is take time and make sure you look after yourself and protect you own health, be that physical or mental in this tough time.

Time is a great healer but right now I can only imagine how hard it must be.
 
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