Me, too positive?

[cassandra]

Never thought I would be caught out being too positive about my own body, but I was. Vasc surgeon tried to make a new fistula in ex-fistula arm. The one I've been using since '98 is packing up. Completely calcified. Apparently my whole body is like that.
Scans had been made, operation planned, I had 'decided' to continue this nonsense (D) for another 5 years so my life insurance would pay out, and I could enjoy it for a year or so.....

I was laying there and the 'guy' was cutting and slicing a bit more, sighs and says 'rubbish veins'.
Real dumb I feel to fool myself so badly. I mean since I'm 18 I 'discovered' not to make any plans for longer ahead than a week or so. But life went on. I'm still 'after-glowing' my dad's kidney I suppose. And surviving all the 'complications' from being on D and it's 'merits'. And the most amazing, positive husband.
And a pretty amazing adventurous life I've lead.

So after the next Multi Disciplinary Meeting I'll here what, or if there are possibilities. Like a cath or something for when the one that's dying on me is really dead. But I've had so many already, and I'm sure 'they' were moaning about that last time (during the switch from PD to HD)

In the mean time I'm going to slap myself to be supportive to dear Hubby as he just heard that his mum can not be operated again for diverticulitis at 80.
Why do people think they're going to live forever?
 
I suppose I shouldn't have said that to Hubby.

Thanx for reading, just had to get it off my chest   

Love y'all, Cas

[Xplantdad]

Cas, I hope you get it worked out.

Having a CVC isn't all that bad (says the caregiver...who really doesn't know what it's like)...but with my daughter...we are much happier with it than a fistula! Don't know how well she'd do with needles, though I would be fine with it...having given our cat with kidney disease saline on a daily basis with 18 gauge needles...he lasted almost another year before he went downhill.

PD didn't work at all for my daughter-so we went with the only available solution....a tunneled cath.
 
We are here for you!

[MooseMom]

Hi, Cas.

I get what you're saying.  When you make the effort to be positive, to be hopeful, it can sometimes be an even bigger shock when something happens that doesn't fit into that narrative. 

I often feel that I have to keep my guard up because the instant I let it down or allow myself to forget my body, BAM!  Here comes the sandbag that knocks me back into reality.  And then I do just like you've done, chastise myself for being so stupid for planning a future.

Neither of us are fools for wanting, or at least daring to hope for, some sort of life that looks "normal".

Let us know what the next plan of action is to be.

[cassandra]

Thank you Xplantdad I just hope a CVC is still poss too, and MM thank you for the understanding and the sweet words. As soon as I know something, I let you know.

Thanks again, and lots of love, luck and strength to all of us,,Cas

[Charlie B53]

Cas, I am stunned. On many levels. 

That you could sit still while the Surgeon repeatedly cut into your arm to develop a better access.

That the Surgeon actually made the comment "Rubbish Veins'.  Knowing you could very clearly hear every word.

The realization that your access was limited, soon to fail and not repairable again.

A triple whammy.   I'm out of words, only Prayers left.

[kristina]

Cas, I am stunned. On many levels. 

That you could sit still while the Surgeon repeatedly cut into your arm to develop a better access.

That the Surgeon actually made the comment "Rubbish Veins'.  Knowing you could very clearly hear every word.

The realization that your access was limited, soon to fail and not repairable again.

A triple whammy.   I'm out of words, only Prayers left.

Hello cassandra, just to say that I completely agree with what Charlie has already said!
... I am not sure what I would think, do or say if I would have to listen to a comment i.e. "rubbish veins" etc. by a Surgeon ...
Could I trust him to understand and could I just hope ? (That is the leading question ...)
I keep my fingers crossed for you and send you lots of positive thoughts from Kristina.

[kickingandscreaming]

I'm wishing you well, Cas.  It's true what they say: It all comes down to access.  That surgeon is very much in the wrong for speaking as he did--when he did. I'm sorry you had to hear that.  It only adds to your stress about the situation.  I know nothing (personally, yet) about fistulas, but do know that lots of people on hemo use AV Catheters.  It's not ideal, but it does work. 

I'm a glass empty type of gal. When it comes to me, I believe that Murphy's Law is what prevails. l think it takes great courage to be positive and not to gird yourself against expected failure--just not to be caught off guard.  Being negative is more mentally protective, but being positive sets up a healthier flow in the body.  Here's hoping there's a good resolution.  Take good care.

[MooseMom]

Being negative is more mentally protective, but being positive sets up a healthier flow in the body. 

^^^^^
This.  You've nailed it.

[Simon Dog]

That surgeon is very much in the wrong for speaking as he did--when he did.

Another one regarding professional sensitivity -

My wife and are are meeting with an estate/trust/wills lawyer.  He knows I am on D.    He looks at us and says "Normally, I would worry about protecting your assets from nursing homes, but you (looking at my wife) will have enough for that".  (Looking at me) - "You don't have to be concerned about nursing home expenses because you will be dead before that is an issue".

I liked the guy.   Probably because I think like Bob P.

[MooseMom]

Are you feeling any better today, Cas?

[Charlie B53]

I have to agree again with Simon.  There is a time and a place for such comments.   Dealing with insurance and investment planning is one of those times for facts.

Making such a comment during surgery while the patient is conscious and very vulnerable, one needs far more tact than blurting out such a painful truth.   Do the job quietly and afterwards during the follow-up appointment have a cautious discussion about the possible hazards of any future surgery.

It must be traumatic enough just to hold still and let a Surgeon cut on you, digging around in your arm.  But to hear such a comment had to have caused far deeper trauma then the surgery.

The Dr at least deserves a Nasty-gram for his lack of professionalism.  It was downright rude.  No matter what country you are from.

[Fabkiwi06]

The lack of tact is shocking. Shame on that surgeon. I hope he finds a hair in his lunch for that.

Hope you're hanging in there. I had a vascath initially and it wasn't the most horrible thing in the world. Hopefully there is another option like that for you. It's hard to walk that line between hoping for the best and expecting the worst. Reality never seems to care what your outlook is... it just likes to whap you over the head.

[cassandra]

O thank you all for your understanding and supportive comments. Today the sun is shining. Cold and bright.
I'm just being a hell of a lot more carefull sticking and removing the needles, as I know I can't make a new Button hole.
I've checked and rechecked my life-insurance.
I'm busy creating my lovely funeral, so Hubby just has to 'open an envelope' concerning that.
Have increased my effort getting rid of unnecessary things in the house.

And I agree the surgeon was rude. I think because they don't/can't and shouldn't see the patients as humans anymore, but than, don't talk to tables please.

Thank you all again, I'll keep y'all posted.

Love, Cas

[PrimeTimer]

Hate that you are being put thru this Cas. But you're a fighter, a lover of life and all things happy, certainly not one to take things lying down. Reminds me of my story about "The Lion and The Weasel".

The Lion, being so large in the world requires more in life, bigger territory, more food, bigger home, his burdens are larger and heavier. But he accepts his lion life as if it were an honor, a sort of blessing bestowed upon him. He is proud. The weasel on the other hand, is small and mute. Lives in small holes, getting by on leftovers and others junk. He is lazy and worries less. He is content with his life as a weasel because it means less work for him. We can all be content with who we are, we each have our own cross to bare. But in the end (and I'm not sure about this part yet) but I think I want to be known for having been like "the lion". Still so much to do in life and to finish and laugh and worry about...my life is big. Like the lion's. I think perhaps you are a bit like the lion, too. You always seem to display such grace under fire and your positive words and wishes afford the rest of us oodles of energy, inspiration, cheer and love for one another. Thank you!  Oooh...I hope you are like the lion!

[cassandra]

Jeez PT, your story made me laugh and cry and proud? at the same time 

Just to pat myself on the bag, I will take this beautiful story into my funeral package.

   

Love, Cas

[Michael Murphy]

Cass I have just started recovering from a heart attack, two angioplasties, 4 vtac episodes, and a 7.5 hour cardio abalation and the installation of a defibrillator.
My ejection fraction is at 20 percent.  During this I was bummed I could not even walk the 8 feet from my bed to the toilet.i was not looking at a bright future but the knowledge that I could stop dialysis and drop out.  The boast that provided started me on a recovery course.  As of today while having recovered some of my functionality and knowing that any improvement this early is a good sign.  Every one from my wife to the medical team freaked when I told them if this was it I was stopping dialysis. However I don't think I could have pushed through 'this with out the knowledge I could end it. 

[cassandra]

..I hope you are like the lion!

Like a lion? I feel like a lion ant (must be the girlscout in me) Apart from the 'doing as much as poss in the house' to make it a lovely Xmas home, and completely organised and 'lighter in 'weight'', I'm making my world famous green pea soup. I feel a bit hyper, so took a Diazepam, and will do D somewhere later today. Probably when Hubby decides to visit MIL after work.

Again it's a nice bright, sunny day and very cold.

Michael Murphy I really wish you a speedy recovery, I've been through a lot of episodes like that, and we all know that one day we won't recover from that, but I doubt I'm going to speed it up by deliberately stopping D. I honestly think that I can leave, and will leave that decision completely in the hands of my body.

Love, luck and strength to all, Cas

[kickingandscreaming]

I'm making my world famous green pea soup.

I've really been craving pea soup lately and trying to find a way to make it renal friendly.  Is yours? If so, I'd love your recipe. I hope you will be around for a long time, Cas.

[Blake nighsonger]

me too cas ...love ya

[Charlie B53]

Mmmmm  Pea soup!  I haven't made any for a long number of years.   I can't cook small, the minimum is a whole crock pot for just the two of us.   She doesn't care for left-overs for too many days.   We don't freeze.    And my soups are usually very thick.  I tell her if she doesn't like it that thick to just add a small spot of water and stir.  Make it exactly as she likes it.    NOPE.

If the Wife ain't happy............NOBODY can be happy.

Is it like that around the world?




I don't get to make beans but maybe once a year.   And I like them a lot also! And I do take my binders then.

[Simon Dog]

Reminds me of the Exorcist.

[PrimeTimer]

Cas, I didn't say being like the lion is easy. Lions are respected and I certainly doubt that you are like the ant lion. Hope you enjoyed your pea soup. Hubby is lucky to have you. Is it time to decorate for Xmas already? My hubby asked me about it so I guess I had better start.


https://en.wikipedia.org/wiki/Antlion 

[cassandra]

     

Oh PT you are priceless!! I seriously had never heard of an Antlion, they sound rather unpleasant. So, fair enough, I've been trying to live my life as a Lion. And it wasn't and isn't easy. It's not finished yet either, but this lion is rather tired, and I want you all to know how much I appreciate your messages of love, and support.
However I have to be realistic. I've outlived most of my friends on D, and some siblings too. And I also know that 'going downhill ' after 20+ yrs D and 13 yrs TX, it can go really fast. Of course I will fight it all the way, I'm not one for laying down, and waiting for stuff to happen, but I am a serious procrastinator, and the life-insurance thing, and the funeral plan, and the house 'organising' a bit more, before I really can't do them anymore, are just necessary.
I've seen with friends and family who didn't, or didn't get the chance to arrange those things, what chaos and upset it can cause.

Ah and the pea soup was delicious! I always make a huge pan of it too, but I don't mind freezing it. And it's definitely not renal friendly, but it's only bad on the Phosphorus. It's not that high on K+. And if you stick enough Celeriac in, the flatulent side remains bareable 

And I'll start to pop up our 'pop-up' Xmas tree tomorrow (fantastic invention, I'll learn how to re size pictures during my planned morning D-Session, and'll try to include pictures) It's the easiest way to put up an artificial Xmas tree, and takes up virtually no storage space.

Thank you all again for all your love,

   

[MooseMom]

Good for you for arranging things.  It's a very good way to grab control over one part of your life.  So many other parts of life with CKD are beyond our control.

I just wish you peace.

[PrimeTimer]

Ha ha, Cas! I'm ahead of you in the Xmas tree department. I've graduated from the pop-up kind to the table-top kind! Complete with it's own mini lights!  :christmastree;Takes me two minutes. Only problem, is that it is in a bin under my bed and I don't like getting underneath there because I might (will) discover dust bunnies    and then that leads to a full blown cleaning session.  In that case, I will have to tell myself "be the lion, be the lion".