So what would you do

[MooseMom]

Dearest cass, I have no answers for you; Charlie seems to have a good idea or two that may help you.

What I DO have is lots of good wishes and crossed fingers for you!  I'm glad you got a date now that everyone knows your cardiac health is OK!

Why do you think the surgeon kept banging on about how painful it was going to be?  I mean, yeah, we get it, but is there something about this particular procedure that causes particular pain?  I don't understand.

I DO understand why you'd be hesitant to go to a clinic, concerned your bhs might be messed with.  That's a conundrum. 

I look forward to reading posts from IHDers who are much more informed about this that I am.  Those are all really interesting questions.

[cassandra]

Thanx Charlie and MM for the tips and the good wishes.


And MM I really don't know why she did that.


And for the incredibly good news: Hubby offered to try needling me this week (he's free for 4 days) so he's 'ready to go' when I need him!!! Sweet or what.



Love y'all 

[Whamo]

   Don't give up.  There is hope.  Have you thought about getting a cycler instead?  I did hemo for two years, and my two fistulas failed.  My veins are too thin so I went on PD.  I think leg fistulas appear like painful setups, at least, that's my experience from doing hemo for two years in a busy center.   PD takes up more time, but it's easier on the body.  Talk it over with your doctors and nurses, and other patients in your center, and you might learn something to help you make that tough decision.  God bless you, and I pray you learn to adapt and thrive. 

[cassandra]

Thanx Whamo for your encouragement. I did 5 years PD before hemo. I 'loved' it, but my peritoneum burst, so that was over. I doubt if PD would ever be possible again. It's okay though. I'll try to stay possitive. It must go alright. I'm incredibly grateful for all the strength and love and warmth I get from all of you.


Thank you, love y'all, Cas


   

[PrimeTimer]

I recently read that the USA is experiencing a shortage of injectable morphine sulphate. Some hospitals are wanting to cancel elective surgeries until the shortage is remedied. Have you heard anything like this happening in the UK? Is that why she was maybe trying to prepare you for it to be painful? Maybe she was trying to hint about a shortage of paid meds?

[kristina]

Dear Cassandra,
I do hope everything goes alright for you on the 5th of April and I shall be thinking of you and I certainly hope, that it is not so painful ... In any case, I shall be thinking of you and wish you good luck!
All my best wishes to you from Kristina.

[PrimeTimer]

I recently read that the USA is experiencing a shortage of injectable morphine sulphate. Some hospitals are wanting to cancel elective surgeries until the shortage is remedied. Have you heard anything like this happening in the UK? Is that why she was maybe trying to prepare you for it to be painful? Maybe she was trying to hint about a shortage of paid meds?

Oops...meant "pain" meds.

[cassandra]

I recently read that the USA is experiencing a shortage of injectable morphine sulphate. Some hospitals are wanting to cancel elective surgeries until the shortage is remedied. Have you heard anything like this happening in the UK? Is that why she was maybe trying to prepare you for it to be painful? Maybe she was trying to hint about a shortage of paid meds?

Bugger, according to dr.Google Morphine is here on the shortage list too!!
I'l give the coordinator a call. If so I might reconsider .......


And thanx Kristina for your well wishes and thoughts


   

[Charlie B53]

While inject-able morphine does work better for me than the morphine pills that merely make me physically sick and feel drunk but still in pain, I much prefer when the Anesthetist uses Fentenyal.  NO drunkenness and the pain just disappears, depending on how much he uses.

[PrimeTimer]

Like Charlie, I would bring up Fentanyl or ask what would they use if they are short on injectable morphine. If they have a good injectable alternative and it was me, I wouldn't put off surgery. If they said they'd give me Tylenol 3 or Codeine, I'd say forget it. I'd want something good (strong) for during the actual surgery. Please let us know what you find out. Hope it goes well for you, really really hope it does.   

[cassandra]

Thank you friends, so far no one has rung back. I will try again tomorrow, and use your advice of Fentanyl.
I don't remember ever getting that. I'll definitely keep you informed.


 Love y'all, Cas

[Charlie B53]

Enough Fentenyal you would laugh in their face while they cut out your liver.  It works that well.

[cassandra]

Enough Fentenyal you would laugh in their face while they cut out your liver.  It works that well.

.


         Thanx again Charlie   


A nurse rung saying: they had not been informed of a shortage....


Okay than, I'm bach to pretending it's not happening to me, and maybe I'll ask for Fentanyl anyway.


 

[cassandra]

Today I woke up with bowel cramps and diarrhoea so operation canceled.


   

[kickingandscreaming]

Bummer!  Get well quickly.

[cassandra]

Thank you KaS


 

[kristina]

Dear Cassandra,
I am so sorry about the cancellation, but you know, sometimes such cancellations could be a "good thing" for better things to come along. I was once scheduled for an operation and then it was cancelled and in the end it was good luck, because my "case" was a bit complicated to operate on and so I had to wait for the most experienced surgeon to "do the job" and in the end I was extremely luck with the result, so ... all of my waiting was really worth it in the end, even though it did not look like that at first, when I almost felt as if the "whole world" was unitedly conspiring against me whilst I was waiting...
I wish you good luck and keep my fingers crossed for you.  from Kristina and 

[Xplantdad]

Hope you feel better soon, CAS!

[MooseMom]

Today I woke up with bowel cramps and diarrhoea so operation canceled.


   

Are you feeling any better today?

Do you know how long it will take to get a new surgery date?

I am so sorry that you've been unwell and have been forced to cancel.  How incredibly frustrating.    indeed!

[cassandra]

Thank you all, my sweet friends. Yes I'm feeling a bit better. I might even be able to dialyse today. 


I have no idea when their next date will be. I'm only a bit worried about the difficulty I have getting the needles in.
At last I found an article about how long it takes (if all goes well) before the transpositioned AVF to be used: 2 to 3 months.


 https://www.sciencedirect.com/science/article/pii/S0741521409014852

 


Love y'all, Cas

[cassandra]

By coincidence my yearly appointment with the Transplant surgeon was with my super Vasculas surgeon. He was worried again about my heart, so I received a date for the op.
8' May admitted, 9' May operation.


Love, Cas

[MooseMom]

 

We will all be thinking of you on that day!   

[cassandra]

Update: I'm back, no operation happened. I was Nil By Mouth from 23.00 Tuesday. Scheduled for 08.30 operation. 'Enjoyed' decontemination shower, had talk with anaesthesist, and than: Mr 'rubbish veins' shows up.
TBH I didn't recognize him straight a way. Only when he grabbed my 'still useable fistula arm' which I had completely covered with permanent black marker : NOT THIS ARM. Only when he said with a smile: "so we are making a graft then" did I recognize him. I janked away my precious arm, told him what the plan is. And that I was waiting for 'super' surgeon.
He looked at the arm in waiting of fistula transposition, and said:" did they do a venogram?" No they hadn't. TBH I had asked 'super' surgeon about this, but after all the u.s. Scans I forgot about it, AND I think there won't be a narrowing in that vein as my arm is not swollen at all. The previous (still used) fistula-arm was swollen after day 2 of its creation (with severe narrowing) and still works 20 yrs later.


Anyway, I was sent home, awaiting appointment venogram. It's just 09.00 now, so I'm calling the coordinator.


   

[kristina]

Dear Cassandra, I can't tell you often enough, how sorry I am about what you are going through!  There you have all this "loaded" on top of it all, as if dialysis-treatments are not already stressful enough for body and soul ... Could you ask for some assistance from one of the hospital-social workers who perhaps could help you and also speak on your behalf as well, so you don't feel too much left on your own with all this?
I can well imagine that the stress must be immense and I do keep my fingers crossed for you and do hope this is going to be sorted as soon as possible.
Take great care and I send you my best wishes from Kristina.

[cassandra]

Thanx Kristina, apparently there's no social worker, but I spoke a HHD nurse who told me to put it in writing and he would find ......., all very sweet, but the whole thing is, is that it's just not a good idea to put a complaint in writing about a surgeon. My mum complained about a surgeon who was going to 'do' me, and all sorts of things went wrong, from stitching to the use of meds I was (in med file) allergic to. It doesn't matter really, you are lucky, or you're not. And maybe I was lucky anyway, maybe the venogram will show them such a good way to transposition this fistula that..... 


And maybe my heart will only get stronger by having so much pressure from two strong fistulas simultaneously.


I'm just going to enjoy my double espresso's now 😆