Discussion in 'General Discussion' started by Calranthe, Nov 13, 2018.
@Calranthe Again mate, my thoughts are with you both
Just gone back through your threads, wow what a journey you've both been on together your wife surely has been dealt a terrible hand But your story is one of true strength. I hope you get your visit to OCUK soon
If there is a fund going of some sorts iv missed (i.e like we did for afew members over the years) if anyone can tag me into it or link it id be happy to chip in
All the best guys
Sorry for not reading or indeed knowing about previous threads, and sorry for the tough time you're both going through.
At very least you now have a diagnosis, even though the diagnosis is bad news on the other side it is good news to know what and why, at least that way things can be put in place to reduce the risk of future occurrences.
Try to keep strong over all this even though that does all sound very cliche, but you personally keeping strong will help her immensely.
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.
Really sorry to hear what's happening, I recently ended up in hospital after an operation with an infection and i know how tough that was for me so i cant even imagine how hard everything you guys are going through is. Thoughts and best wishes are with you both, she sounds like a total fighter!
Sorry for whats going on. Hope you guys will be ok. Best wishes
been following this thread and the others too, terrible things to be going through, will mirror your both fighters and very strong.
hope everything works out for you both.
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.
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.
Hope they're able to get a good enough look via the echo + stress test, sounds like a bit of a nightmare with those conflicting needs too... Best of luck hope you get some good results re: the heart and she's able to get back home soon.
Calranthe, I'm really sorry to hear of the difficulties you and Paola have encountered I hope they get the info and output they need from the echo tests.
From what you've put above its a real balancing act on what can and cant be used/taken/done, I hope shes feeling better and back home soon
Tough times. Not sure what to say. But fingers crossed for the best.
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.
It's been a couple of days since an update. Hope the weekend ended on a positive note for you both.
If it even helps a tiny bit, there are loads of people on these forums thinking and rooting for you both.
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.
Good grief just read through this thread how you keep going i do not know. Hope she is on the mend a bit now !
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.
I really don't know what to say, you both seem so strong seeing this through. I know all this may sound cliche, but my thoughts really are with you.
She is very blessed to have you looking after her OP.
Good luck with the echocardiogram Paula! I had one around this time last year. The staff were fantastic and it wasn't as bad as I thought it was going to be.
Separate names with a comma.