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

[Calranthe]

Hi all,
We were really looking forward to visiting OCuk, that is on hold for the moment, As people know Paola had 2 appointments last week, everything was going well, just tweaking stuff, Dialysis and cancer meds.

Paola has a weakened immune system so we are nervous every time we visit the hospital, after all the waiting rooms are full of sick people. (we try to do as much as possible via phone consults)

Day after the Wednesday appointment she started with sickness, nausea and the other end as well.

It got worse over the weekend, it is especially dangerous (a stomach bug) because of dehydration and strain on her body.

Did all we could over the weekend and then Monday night it started to scare me, at 1am we called 111 and they ordered an Ambulance (category 2) 4am Tuesday (today)we are in A&E in her own room due to the immunity problems.

Then they check her heart and now the is in the Coronary Care ward they are very concerned her heart tests and blood work is showing not good things.

No one has a diagnosis yet, the problem is with the Cancer+Medication, Diabetes, Renal failure+ Medication the damage to her kidney's throw off a lot of the blood work readings anyway.

No one knows what is wrong all we know is it isn't the best news.

I took a picture last Wednesday at the Hospital while having some baseline tests, she was so happy and looking forward to the visit to OCuk.



And now she is completely worn out and unable to eat.

Sorry for the downer post. I haven't slept in over 30 hours I think.

Small update they thin the time with huge amounts of excess fluid may have damaged her heart or it is the diabetes doing damage. or it may be nothing.

 

[Calranthe]

Thank you all, she is in the best place, it looks like a really nice unit, I just got back from taking her favourite teddy bear (it is soft and can be used to cushion her neck.
I started her Dialysis.

She is on all the monitors going boop boop beep, they are taking her bloods every 6 hours, she has eaten a banana and a yogurt.

Seems the main problem is the same blood markers that show heart problems are the same ones that show kidney disease.

 

[Calranthe]

I read out all your messages to Paola, she says thank you it made her smile.

Okay we have a diagnosis so the universe doesn't think we have enough to deal with .

What do you get if you have Cancer then Diabetes then Renal Failure ?

Heart attack.

It really does sound like a plot line to some medical TV series, where is House when you need him, although even he would have problems with Paola due to the amalgamation of medication, illness symptoms and side effects (a bit like when you add to many mods to Skyrim)

It seems Paola has been having a heart attack since last Thursday probably in her sleep, see if you have diabetes and are a female you can have a silent heart attack, no pain no chest problems and the only symptoms are nausea and heart burn (acid reflux) it seems to actually be quite a big killer, people think they just have heart burn take some antacids or gaviscon go to bed and never wake up.

It is ongoing, she is on lots of heart medication and they need her to stabilise and then they can do an Angiogram, they need to find out the damage to decide on treatment.

She is still classed as category 2 which is one step up from intensive care unit.

She has a nice room all to herself.

 

[Calranthe]

It is just something from left field nothing we expected, but if you know of anyone who has diabetes let them know because its not advertised very well and people do die from it because it looks just like a stomach flu or bug.

 

[Calranthe]

Hope everyone is doing well, Paola sends her best wishes.

She had an Echo and the results are not good, most peoples hearts are running at 50-65% at normal use, Paola's is functioning at 14%, tomorrow they do an Angiogram and other tests because now they need to find out why, is it a blockage, is it viral, is it something else.

Some of the tests have risks but we really have no choice because this is only going in one direction if it isn't solved.

 

[Calranthe]

Hey, I wish Paola all the best! She is very brave and it's great to see her still smiling.

I'm afraid I only skim your threads, as I'm due to start dialysis in a few weeks (kidney functions around 10% now) and I find it difficult to read intimate details of the procedure. I'm trying to stay in blissful ignorance.

If once you are on dialysis you want to talk to some one let me know. Good luck.

 

[Calranthe]

She had her appendix removed so nothing as bad as posted but it's still a worry. She's on the road to recovery which is the main thing. I've asked for oramorph for myself due to me having to look after 2 young kids and they said no the heathens!

I had my appendix out a long time ago, felt like someone let a Janitor clean my insides with a mop and bucket, Hope the recovery goes well.

 

[Calranthe]

Monitor arrived today and it is really nice, Paola had the Angiogram and its not too good, two arteries blocked, quick fix not possible, talking to the Doctor in the morning.

 

[Calranthe]

Hello all,
I am doing this as an update and pasting to everyone interested in Paola's wellbeing simply because I have a lot to do today.
Two of the three primary arteries for the heart are blocked, it could be worse, the plan is to find out how much of the heart muscle is dead (scare tissue) and how much is still functioning, the problem is Paola can not have an MRI or certain kinds of scan because in a healthy person the dye used to map the heart get passed as urine via the kidneys, hers are dead so an MRI could kill her the chances are so high that it is actually against hospital policy for someone in Paola's situation to have an MRI.
They need to answer that question so a special kind of echo will be used along with a medication to stress the heart, make it work harder and thus they will be able to see what is left.
"IF" her heart muscles beyond those two primary arteries are still viable and not dead then they will look into reopening the arteries, if the muscle is just dead tissue then no point.
(big risks also with reopening arteries)
If its all scare tissue then we go the medication way to optimise what she has left, yes it will mean another set of home care nurses and it will mean a monitor of some kind incase of issues and just like her Cancer, diabetes and Renal failure it reduces length of life again.
But we still have options, it is very serious but we still have chances.

 

[Calranthe]

I go to the hospital at 6:45am, I am the only one qualified to setup and disconnect the dialysis machine she uses (it is kind of cool, i'm classed as a member of staff, have permission to order equipment and they always ask me if I agree with what the plan for the day is, I just don't get paid lol) then home at 9am after the first consult with the Doctor (the head of Coronary care team in Royal hospital stoke on trent is awesome, first thing he asked us was do you want me to lie to you or straight up).

I am just about to go for the afternoon visit (another cool thing is even though officially it says 2pm - 8pm) I can go any time and even stay over night if I want to, then I will go again at 7:30pm and stay till the nights Dialysis is setup.

(they even gave me access to the internal cisco phone system so I can keep the Haematological team and the Renal team informed (I also have home numbers for most). An Example of how useful this was when earlier in the week the Renal team was waiting on a chest Xray before they decided on that nights Dialysis regime, the request was caught and cancelled by the automated system because of the infection Paola carries, I had to mediate between 3 departments and managed to get a new on the job X-ray technician to bring up the portable unit do it in her room and then go show the Doctor before leaving the ward (it can take hours for the digital copies to get to different departments).


In the 90's I had to fight tooth and nail to get anywhere with Doctors but now it is quite different, especially with 20 years of medical experience and study I speak the language.

A tip for anyone who wants to get involved with a loved ones care, get to know the nurses, not just when you want something, they are on the ground floor 24/7 and if you can get them on your side they will go the extra mile, I have had nurses who when I asked to speak to a Doctor they actually went half way across the hospital on food break and told that Doctor in person.

Same goes for all of the support staff and Doctors, most of these people are not in it for the money, they really do want to help, often overworked, often staying beyond shifts to finish paperwork, make friends with them, and always try to see it from there point of view.

The main reason I do not stay 24/7 at the hospital is to be honest you need a break, cooking something nice at home, also with Dogs I do not like to leave them alone for too long, they are both missing Paola

Plus I have my "omg there is so much mess why did I start this!" rooms upstairs to sort out.

 

[Calranthe]

Hello everyone,

It is a real balancing act at the moment, I am now officially classed as a qualified nurse in Paola's treatment (i'm on the documents and everything as the nurse/staff to coordinate with) I have access to the internal Cisco hospital phone system and can send orders in to the porters or renal ward for items to do with dialysis, I have access to home phone numbers and on call numbers for most of the people dealing with Paola's case.

I think we forget that Paola is a unique case, nearly every treatment she goes through is something new, even back 20 years ALL (Acute Lymphoblastic Leukaemia) is one of the most aggressive and nasty blood cancers, its a true killer except in children, then you add the Philadelphia chromosome and all bets are off, do you know while Paola was at the Queen Elizabeth hospital for her trial treatment the consultants at North staffs actually ran a pool oh her odds of coming home, the first Doctor we saw when we got home was actually surprised to see her alive, what they didn't tell us at the time was of the 6 people who went into that trial treatment 5 died.

Put on medication to keep the cancer away that within 2 months of our getting home removed her ability to walk without a stick and caused arthritis and muscle wastage but it was the only option, Paola fought the side effects every day, she had dreams, she wanted to be a Writer, she wanted to be an Archaologist and work in the British Library, it took weeks after the treatment for the medication to take nearly everything away, even walking the dogs became too much.

I digress but every step of this journey has been rolling of the dice, every treatment a best guess, Cancer-Diabetes-Renal Failure-Heart attack.

I am now classed as an expert on Paola's condition, I hate it, how do you think I feel knowing that I know as much as the best and brightest when it comes to Paola and I can't pick up a phone and call an expert.

I have no regrets in my path of looking after her, its not about that, I just wish someone knew better and we had a path of known treatment.

(last week I had to organise an X-ray between three different departments, in the end getting a portable unit with an amazing technician who helped)

The Coronary team, the Haematological Team and the Renal team are amazing

Here are the balancing acts we are facing at the moment.

Renal team want to get her BP up so she can go on green bags (highest level of dialysis) and remove liquid which is because she is not allowed out of bed pooling in her lungs

Coronary team want to lower her BP because her heart only has 14-20% ability and high BP is like red lining the rev counter on a car.

Haematological team has stopped her Imatinib (that nice medication keeping the cancer away are now on a count down to the ALL coming back of weeks or months) because it interferes with the heart treatment.

Paola's fluid intake limit is now down to 500ml (until she can go on greens) but she has to take over 20 different tablets a day (try drinking only 500ml of liquid a day and with a parched throat taking medicine)

Coronary team has one hand tied behind his back and is hopping about on one leg because most of the diagnostic tools used for the heart will kill a person on dialysis, she can't have a MRI or CT the dyes are toxic.

Certain treatments could destroy her ability to have Peritoneal dialysis, other options have a high risk of death multiplied by 20 years of ongoing illness.

Its all serious, its all dangerous and when today Paola said to me straight faced "I feel sicker than I have ever been" I had to say "Paola dear wonderful girl you never had a heart attack before" it made me laugh.

I think its called Gallows humour for a reason.

Every bit of treatment has to be okayed by 3 different departments and even then its mostly best guess and gut instincts.

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.

 

[Calranthe]

You are all wonderful people except for that guy sitting over there yes him , a great community, I know this is hard and I think the point that my brain is trying to make is you can let any problem in your life rule and ruin your life, Paola and me we have been through hell but at the same time we already got to spend more time together than most couples, we don't have to worry about how strong our bonds are we do not have anything unsaid.

The only irrational regret that I have and I know it is irrational is that I can't cure her.

We all have problems no ones life is perfect, I am planning for Paola to come home, to visit OCuk and to start having Tabletop/VR/BBQ parties/meetings at our house but I am also a realist and know just how much we are rolling the dice, I have had half my life to prepare for this if it goes badly, although I know it will probably kill me.

Paola has taught me a very important lesson and that is to fight for every last sunrise, to grab on tooth and nail to everything that really matters to you and have as much fun as possible along the way.

 

[Calranthe]

Sorry for the lack of update, not much happened over the weekend, no tests done and Paola is stable, we are still waiting today to see how things are going, I am off to the hospital in about 15 minute, Dialysis is going well, no excess fluid, blood tests show some anomalies and with so many issues the Doctors are not sure if she has an infection or if her body is just acting wierd lol.

Tomorrow we should know more I will do a bigger update when I get back around 9pm today.

 

[Calranthe]

We just had that talk.

Only a few of you will know about "that talk", the one where a loved one is close to giving up, is running out of fight and can only see more pain in the future, where the option to just stop all treatment and go home, to have palliative care until the end.

It isn't a fun talk but we had to have it, its not the first time.

Paola has been ill for two thirds of her adult life, for 20 years she has been in almost constant pain, every day she had to fight against the illness or the medication, now I really hope all you reading this do not know what that is like and no if you haven't faced it or seen it happen to someone close to you it is almost impossible, the idea that the moment you wake up in the morning "if" you can sleep your body is fatigued and you have no energy, that every move of every part of your body brings one kind of pain or another, that you know it will never get better and more than likely over time it will get a lot worse.

No one should even try to imagine what that is like and that is without the major hits from Cancer, Diabetes, Renal Failure and now Heart attack.

Paola will never be as well as she was last year, all she can hope for is a lessening of the pain to the point she gets use to it and maybe just maybe having the energy for a wheelchair visit to Overclockers, that is our best case scenario.

If Paola ever has had enough I will stand by her, hold her hand and support her to the end.

We are not giving up yet but we are realists the coming days are going going to hit us with so many dice rolls that it had to be discussed.

Within the next couple of days the Echo cardiogram stress test will hopefully show us which of the two courses of action we can take, Medication or Surgery.

Both those courses come with massive risk due to her other complications.

 

[Calranthe]

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.

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.

 

[Calranthe]

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

 

[Calranthe]

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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

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.

 

[Calranthe]

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

 

[Calranthe]

Thank you everyone, I am still in shock,

Lets pretend that didn't happen until my brain is working

I am alternating between crying, loss and oh %^£ i'm $%^^'ed

Sorry ranting.

You people have been wonderful.

 

[Calranthe]

I think the first step will be to contact the credit card companies and speak to them about a reduced payment plan. I'm sure they'll help given the circumstances.

Only other option would be to declare bankruptcy? How much could you recoup from the electronics/tablets etc that you have as seems to be quite a bit which is no longer need (i know that sounds much more harsh than it should!)

I am going to call them all but not today I thought bankruptcy was a business thing.