So what would you do

[MooseMom]

Oh my, Cas, that's an incredible story.  I am relieved that you didn't think my questions were too intrusive.  I always worry about that. 

I hate it when I hear healthy people refer to chronically ill people as "brave".  It has this weird implication that "Oh, you're brave, so you can handle all of that, whereas I'm not THAT brave, so that won't happen to me."  It's a meaningless, pithy remark.  And it is based on no knowledge whatsoever.  My son, when he was just a wee lad, was diagnosed with autism, and many of the other parents at school would look at me with that drippy glance and tell me how "brave" I was.  They didn't know about the 3 AM crying jags or the lonely depression I obviously hid so well.

But in saying that, you, Cas, have had to be brave to be able to function with any normality at all.  And for you to be able to write this after 34 years....well...that says a lot about you.  You're my hero.

If there is EVER anything I can do for you, please let me know.  Now, go have that once-a-day espresso.

       

[MooseMom]

Yup Moosemum today really is spring. It's lovely. Was great seeing MIL sitting in the garden.
Thanx for asking. I hope you had a spring day too?



   


Love, Cas

We've had too much rain.  The river jumped its banks, and our basement got water in it.  Happens every year now.  Big pain in the derriere.  Other than that, my garden's English bluebells are blooming!!!

[cassandra]

See? My darling MM "the English Bluebells are blooming". Just look at the positive things.

I do hope they find a solution for your basement though. In England those banks usually break their banks cos the council has allowed building in the flood zones. Or stopped paying for pump services at some location. Whenever you find out, write, start a petition, get environmental organisations involved, as it's unlikely your flooded basement is the only one.

Lots of love, luck and strength, Cas

[smartcookie]

Wow, Cas!!  You have really been through it!  I am so glad you are here to share your wisdom!  And good for you for taking your health into your own hands.  People really don't do that enough!

[MooseMom]

See? My darling MM "the English Bluebells are blooming". Just look at the positive things.

I do hope they find a solution for your basement though. In England those banks usually break their banks cos the council has allowed building in the flood zones. Or stopped paying for pump services at some location. Whenever you find out, write, start a petition, get environmental organisations involved, as it's unlikely your flooded basement is the only one.

Lots of love, luck and strength, Cas

EEK.  I gave the wrong impression in my post; I was sort of in a hurry.  The river breaking its banks had nothing to do with water in my basement; we don't live that close to the river.  It's just that everyone who has a home in my area also has a basement, and basements are notorious for getting some water in them when it rains really hard for a long period of time.  The ground becomes saturated, so the excess water has no where to go.  It's just a function of where we live.  But I have to say that it seems that now not a year goes by without getting water in our basement.  It's always in certain areas in certain rooms.  One corner of my laundry room and another corner of my home office area are notorious.

Still, I have blooming bluebells!  I planted many in my wooded back garden years ago, and they put out foliage but no blooms.  Over the past few years, I've cut down some trees and limbs, so there is now more sunlight back there, and I am hoping that over the next few years, I'll have more blooms.

Bit of topic, I know.  Did you have your espresso yet?  Are you feeling a bit better?

[cassandra]

Bit of topic, I know.  Did you have your espresso yet?  Are you feeling a bit better?

Yes thanx MM I'm feeling pretty good. Still managed to put a new PAK (filter system thing you have to put in the Pureflow dialysate system from Nxstage (awkward and heavy) not much else, but I drank and really, really enjoyed my 1 espresso (Italian).

   

[cassandra]

And good for you for taking your health into your own hands.  People really don't do that enough!

Thanx Smartcookie, I agree that when people are able to do it they really should. But even I could only do that when I had recovered enough, and only than could I find enough energy to go to places, and only than was I lucky enough to find people to find the right doors to kick in to ask questions and find answers.

Like when I was needling myself to do D in the hosp yesterday (yesterday? Wow time flies by) a newish (4 weeks) PD kid came in the (small) ward. He looked exhausted. Nurse asked how he's doing. Boy answers that he's not feeling too good. Nurse says that his bloods are fine. Boy says he's not sleeping too good either. Nurse suggests to increase fill volume. Boy says he's unsure.
At that particular moment I have to bud in. So I ask the nurse if it might not be an idea to try him on tidal? Nurse starts calculating.
And I ask the boy if has restless legs too? Like from your neck down to your calves? He says yes.
I advice him to ask his GP (PC in US?) to prescribe Diazepam as it settles the RLS, reduces the anxiety so you can get some sleep.

He wrote it down, including the IHD site I informed him about, so I hope he does.

I just mean, he was lucky to bump into me.  . He might one day get to do both things. Might be lucky to find a GP to prescribe Diazepam,

It's really not always as easy as it sounds. Patients in general are vulnerable. And the whole system of health care in (I still think) most places are nearly 'geared' up to that. Like: our job is important and it's easier to do my job properly if you shut up, listen and do as I say. So patients become programmed to be dependend.

I'm sorry smartcookie, I didn't really want to go on about the whole healthcare system here, I know there's an actually some good ones too. I know you try only your best too. I am proud of you and think you are fantastic for being on this site in the first place. Your thread ' ideas for better outcomes' is ingenious.

It's not only patients's health that would benefit, it's the whole system's.


Phew, sorry, it was not supposed to become a whole speech, but there you go 

Love, luck and strength, Cas
Love, Cas

[MooseMom]

Had your daily espresso yet?  Was it yumtastic?  How are you feeling today?

[cassandra]

                                


Yes oh yes MM I of course have had my Italian (again) espresso (with a tat if cream to make it last longer)

How's your rain problem?

Love, Cas

[MooseMom]

It is a stunningly clear and beautiful day today without a single cloud in the sky.  It's cool and windy, so I've opened the French doors leading out of the basement in the hopes that lots of fresh air will help dry things out.

[cassandra]

Good news!!!! Must be lovely seeing the sun !!!

   


Today I've learned that I can only drink my espresso AFTER my lunch (2 crackers
With pâté.) This pain is not worth it.

[MooseMom]

Yeah, Cas, I can see where it might take some experimentation to see what (and when) you can tolerate something you've ingested.

[smartcookie]

You are absolutely right, Cassandra!! You have to be at a certain place to take control of your health.  I just get so frustrated with some of my patients who are content to sit back and let everyone do it for them.  I have started doing transplant referrals at the clinic since we are short a nurse, and my patients have a hard time telling me where they even want to be listed!!  Ugh!!   

Enjoy your espresso!!  You have definitely earned it!

[cassandra]

Well I've got an operation date in The Royal Liverpool for next Friday. I'm a bit apprehensive (scared doesn't fit here) but the pain in my poor old fistula arm is getting too much, and it's so deformed that I can't look at it without feeling sick. Still exercising with the balls (there's still 4 balls left from the 6 I bought and the 2 the nurse gave me) and added some physio exercises I found for lymphedema.
But the operation has to happen sooner rather than later.
And of course it will all go fantastically well.

And I've slowly increased my espresso intake from 1 to 3 which has made me a lot happier.
I am allowed to use a little Tinzaparin again, but I'm not prepared to take that risk just yet.
And I spoke to the surgeon (last Friday while I was in bed at home, but that's for a later story) and he said they don't usually use blood thinners with this kind of operation...O, okay.

Love y'all, Cas

[kickingandscreaming]

I hope it goes well for you, Cas..

[cassandra]

Thanx KaS

 

[Michelle2016]

Hi, Cas:

Now, I believe that the technologies, information and medications are amazing. Hope everything will be ok with your Procedure.

Best wishes.

[AshtonsMuse]

Hoping all goes well with your procedure.  I'll keep you in my thoughts.

[cassandra]

Thank you Andrea and Michelle

   

[Charlie B53]

Espresso makes me think of a lot of things. I 'used' to have my own machine thing built alongside my coffeemaker.  I lost it when the heater pad on the coffee side decided to melt down and start on fire.  Wife freaked.  I simply unplugged the unit, turned on the sink water, and used the sprayer to soak it down putting it out.

I haven't found a replacement machine yet.  Wife bought me another coffee maker, but this one instead of an espresso maker on the side has a single cup coffee maker, which I use daily.

But I miss having an espresso once in a while.

I 'used' to have far more, some days taking the machine to work and happily 'buzzing' along all day.  Seems like in no time it's time to go home.

The problem with doing that was my heart would start skipping beats, like missing one in three.  That's a strange sensation.

I found water quality to make a big difference in taste.  Our very hard limestone water isn't that bad, but could be far better.  I installed a reverse osmosis unit under the kitchen sink and a third water tap for the purer water to use for coffee.  I no longer have to 'clean' the lime accumulation out of the maker water heater.

My point is,  I am wondering if any of you are using water from your 'Pure Flow' for making coffee?

Or have you even thought of it?

Until I get another machine I cheat.  I add a heaping teaspoon of the powdered espresso mix to my cup of coffee every morning as I sit and write this.  It's better than nothing but NOTHING near the same.

[cassandra]

   

I'm going to call tech support to check that. Good idea Charles

[cassandra]

So now waiting on the ward for my bp to start behaving. First time 230/110 after Doxazosin (sp?) 210/110, so another Doxa. Anesthetist been round with the same irritating questions like since when are you on renal replacement? Me: Isn't in my file? Anyway if BP hasn't dropped in an hour, I can have a Diazepam. Mmmm, nice breakfast. Just wish this op was over and done with.


   

[Charlie B53]

I hope all goes well and according to plan.

The VA made me an appt for a fistula-gram Wed the 16th.  Dr say mine isn't near ready yet.  He expects he will have to tie off some collaterals (?) and possibly balloon other areas.

I'm not in any hurry.  That needle thing.  I love this cath.

Dr says I can't keep it.  Bad things could happen.  Infection, blah blah. 

I told him that something has got to kill me, otherwise I might live forever!

[cassandra]

Thanx Charlie, but (super) surgeon just came round to tell me that he won't operate on people with BP's like that. I agree 
Should have had BP meds ages ago. So he's arranging nephrologist from this hospital to sort me out.
Than wait for new appointment with (super)surgeon.

[kickingandscreaming]

So sorry you are delayed.  If you're anything like me, you have to whip yourself into readiness and then they say "no."  I've have high BP for years (not quite as high as what you're reporting. A fairly small dose of Metoprolal brought is way down, fast.  Best of luck, Cas..