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MooseMom
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« Reply #25 on: March 31, 2017, 08:56:11 AM »

Good grief!  You could be a lecturer on "Crisis Management"!  I hope you all have happier days ahead!  :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kickingandscreaming
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« Reply #26 on: March 31, 2017, 10:17:04 AM »

Armpit!!!  How on earth do you self-cannulate your armpit?  What a weird place to have to stick a needle!  I hope it works out for you. 
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
MooseMom
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« Reply #27 on: March 31, 2017, 03:06:55 PM »

Armpit!!!  How on earth do you self-cannulate your armpit?  What a weird place to have to stick a needle!  I hope it works out for you.
Is this the only viable option you've been given?

How is your family getting on?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
cassandra
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« Reply #28 on: March 31, 2017, 03:18:16 PM »

Thanx again girls. KaS I'm sure it will be a multiple procedure thing as in first create fistula (the connection between vein and artery) next stage to move the fistula to a reachable place on the arm. And yes MMum, they found one usable vein, that one. It will all be fine I'm sure  ::)

Tomorrow SIL comes up North, and I hope Hubby and she will have the nerve to bring up some kind of assistance need for their mum and dad, and if that doesn't happen I'll have to sweetly suggest something. The hosp hasn't rung about FIL so I have to believe he's at least stable.

Love y'all, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
PrimeTimer
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« Reply #29 on: March 31, 2017, 03:42:34 PM »

Thanx again girls. KaS I'm sure it will be a multiple procedure thing as in first create fistula (the connection between vein and artery) next stage to move the fistula to a reachable place on the arm. And yes MMum, they found one usable vein, that one. It will all be fine I'm sure  ::)

Tomorrow SIL comes up North, and I hope Hubby and she will have the nerve to bring up some kind of assistance need for their mum and dad, and if that doesn't happen I'll have to sweetly suggest something. The hosp hasn't rung about FIL so I have to believe he's at least stable.

Love y'all, Cas

Wow, you mean while you are going thru all this you have to deal with inlaws too?  I feel for you! Really, I DO!!! I don't even talk to any of my inlaws anymore... 
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
cassandra
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« Reply #30 on: April 06, 2017, 06:51:26 PM »

Well, the acute crisis of FIL is settled, well he's home. SIL is back to London. So tonight I had time to think about the op next Wednesday (can't sleep).
In the letter from the hosp it says I'm under the care of the same surgeon who'd said I had "rubbish veins" while having a first go at creating a fistula in that arm. So why would I go under GA and let him have another go? Also I'm thinking that one of the surgeons had said that I might enjoy a graft for maybe as long as 3 years. And then I was thinking that it's going to be mighty difficult to stick my needles in my lovely button holes using my just operated on arm. Hubby can't even look at the needles, so I'll have to go in-clinic. And I'm really not happy about that.
So tomorrow I'll call my friend the surgeon to ask if it's really going to be the previous guy again, and if so I'll kindly request a possible operation by the 'chief surgeon' (well, his name is on everything (like the request for my heart scan))
I mean my ol' fistula might last another 2, maybe even 3 years too. If I think really, really positive and keep doing those exercises.
And I found some capsules with garlic oil extract, maythorn oil extract, viscum album oil extract and chlorophyll oil extract which are supposed to be good for the veins and arteries...... I can but hope.

The thing is that even when 'they' say it's going to be a fistula, done by the chief, it doesn't mean anything. 'They' said 'they' were removing my own tiny kidneys neatly from the sides with two small cuts, and I ended up with a huge cut from my breast bone to my pubic bone.

I'm pretty sure now I'm going to cancel tomorrow and intensify my exercise regime.

Thanx for 'listening' again
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
PrimeTimer
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« Reply #31 on: April 06, 2017, 07:16:43 PM »

I'm really sorry you are going thru this, cassandra. If it were me, I'd probably do what you're thinking of and ask that the chief surgeon perform the surgery or another surgeon. Anyone but the one who made those terribly negative remarks about your veins. Tell them you want someone who hasn't given up or is burnt out because YOU sure haven't! Show them who the boss is! Hopefully your fistula will afford you the time to schedule with another surgeon. I will send a wave of positive thoughts over the ocean to you tonite, here it comes!   
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
cassandra
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« Reply #32 on: April 06, 2017, 08:48:32 PM »

Thanx PT I'm catching them. Thanx there's so many

   :cheer:
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #33 on: April 07, 2017, 05:21:30 AM »


I have to admit that the thought of Surgery scares the Hell out of me.  Think about it, they knock you smooth out so you cannot tell who is doing what to you.  Laying naked on a table who God knows who all around you.  Just because one Surgeon sayd that 'He' wil be doing the procedure doesn't necessarily guarantee that it will HIS hands doing the work.  He may be merely 'supervising' some other relatively less experienced Surgeons that need the experience.

After Clinic today I have appts at the VA Hosp.  My regular check in with my Primary.  Then, because I had asked her if she could prescribe something to help me with the anxiety of upcoming needles', she is sending me to see a Psych.  As if I need a Pysch.  I've known I am way off my rocker for a very long time already.  Having a Psych confirm that won't be anything new.

I am going to tell the Psych that what I would like to see is me, wired up for stereo.  A complete EEG and EKG. Have these on and running for at least 15 minutes prior to the Nurses attempting to put in the IV for upcoming Surgery.   The graphs should clearly show how the anxiety manifests within sections of my brain and the resulting heart beat changes which cause my veins to harden and roll away from the needles.

This may allow even better drug decisions to be made to pre-medicate prior to future needle sticks.

I bet they won't do it.   Any takers wanna bet?

Cass, I hope your Surgery goes well.  Even if it turns out to be 'That Guy' you can be sure that he will do his absolute best to make sure your graft goes successfully.  Pride in his work will not allow him to do any less.  Bank on that.  We A-Holes are like that.


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cassandra
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« Reply #34 on: April 07, 2017, 11:22:42 AM »

Hi Charlie thanx for that, I'm still awaiting phone calls from two surgeons, the guy/boss who I might allow to do it, and the coordinator.
And I'll probably be prepared to go ahead after a signed form from him is in my inbox. Maybe I'll ask for a video recording from the whole thing. Maybe I can convince him it could be for educating less sophisticated surgeons or something.

I'm sure there's something to be learned from Needlephobic's thread BTW.

Monday will be my decision day. Than again there might not be a bed if I ring Tuesday morning to check if there's a bed.

Love y'all, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
MooseMom
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« Reply #35 on: April 07, 2017, 11:52:16 AM »

I'll be eager to hear what you decide.  There's so much to think about; it must be overwhelming.  I hope that if you have the surgery, you will be able to trust the surgeon.

 :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Simon Dog
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« Reply #36 on: April 07, 2017, 12:03:00 PM »

Quote
Maybe I'll ask for a video recording from the whole thing.
Do you really think the surgeon is going to allow your contingency fee counsel to have a copy of such evidence in the event something goes south?
« Last Edit: April 08, 2017, 07:17:42 PM by Simon Dog » Logged
cassandra
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« Reply #37 on: April 07, 2017, 04:17:18 PM »

Quote
Maybe I'll ask for a video recording from the whole thing.
Do you really think the surgeon is going to allow your contingency fee counsel to have a copy of such evidence in the even something goes south?

I've never asked anything like it before, so I really don't know, but this IS the NHS, and it IS in a teaching hosp, and I am a 'very interesting' case as I'm always told. So I don't see why I wouldn't at least ask. And that will only be if I will have the surgery. And evidence can always disappear can't it?
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
kristina
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« Reply #38 on: April 08, 2017, 05:36:00 AM »

Dear Cassandra,
... just to let you know that I shall continue to keep my fingers crossed for you ... :grouphug;
... and ...  since you are being told that you are an interesting case (medically speaking), there is no doubt that the surgeon will try his very best for you and will make sure that you are alright...
Why do I think like that? Because I also was told that I am an interesting case because of "my" very rare genetically inherited disease (which caused my ESRF) and my health history, which, over the years made the whole of my body a bit more fragile ... and ... as a result of all this, surgeons have always tried their very best, whenever an operation was necessary
 ... I have no doubt that you will do well and I shall continue to keep my fingers crossed for you.
... There is one trick I always use before each and every operation I have to face: I always make absolutely sure that I am as calm as I possibly could be beforehand (with the help of classical music and a little yoga), because a mental calmness gives my body a better level of strengths to "pull through" an operation and it also assists to recover with much more ease after the "event"...
I wish you lots of good luck and ... see you later...
Best wishes from Kristina. :grouphug;
« Last Edit: April 08, 2017, 05:47:35 AM by kristina » Logged

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cassandra
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« Reply #39 on: April 08, 2017, 11:33:35 AM »

Thanx Kristina, I'm always calm before the op. (I chemically enhance myself with some Diazepam  :angel; )

Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Simon Dog
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« Reply #40 on: April 08, 2017, 07:19:44 PM »

Quote
And evidence can always disappear can't it?
It's called spoliation and the courts really frown on it, particularly once a party has been warned of a potential claim and received a standard spoliation letter from plaintiff's counsel.
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PrimeTimer
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« Reply #41 on: April 08, 2017, 10:19:44 PM »

I wonder if taking a good vein/artery from a leg and moving it to an arm to create a fistula is possible. I would think a stent could be used to connect them. My husband has a small stent placed just above his venous buttonhole and it's been working beautifully, never needing angioplasty there, which is why they put the stent there. I also knew someone who had an artery from his leg used along with a stent for his heart and pacemaker. Funny I woke up this morning thinking about this stuff and you, cassandra and what they can do for you. I'm sure they will figure a way to keep things running for your dialysis. Hope your dialysis days will start to improve with the surgery so that once you heal and recover, you can get down to the business of the remodel on your house. That will be way more fun! I don't know why but worrying about interior paint and flooring and colors and decor just seems a whole heck of a lot easier to do than worrying about our health. Go figure!  :waiting; :rofl;
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
cassandra
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« Reply #42 on: April 08, 2017, 11:32:50 PM »

Thanx all honeys. Today I woke up with the sun shining brightly, so I'm fine again. I'm a 100% positive I'll get Mr HeadGuy to do the operation, and it will be just fine.
Yesterday I received 3 of my 6 ordered stress balls for my arm exercises. These ones are with aromatherapy (relaxing, up lifting, positive) I like them. I did loose 2 already. I'm working myself up to a search/organise the front and backroom in a sec just to find them, and will be awaiting the next lot of balls eagerly. These will be black and sparkly.

Love y'all  :grouphug;



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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #43 on: April 09, 2017, 04:18:17 AM »

Thanx Kristina, I'm always calm before the op. (I chemically enhance myself with some Diazepam  :angel; )

Love, Cas

Prior to me 'going clean' in 81, I would usually just twist up a fat one and burn it!  Green of course.  Long ago the Dr's used to order me a shot with Demerol a half hour prior to pre-op beginning to get me ready.  I'll never understand why they quit that.  It worked so well.

Saw the Psych Lady and talked about the childhood conditioning that started all my 'Needle-phobia'.  We pretty much agreed such a deep seated conditioning won't be an easy task to change.  So the most immediate treatment available may be drugging prior to exposure.  She will go ask my PCP to write me up for Zanax.  I've never tried it, know nothing about it.  Wife uses it but I don't think it is near enough.  She is still difficult.  How we've managed 40 + odd years I'll never know.






sp mod Cas
« Last Edit: April 09, 2017, 07:12:21 AM by cassandra » Logged
cassandra
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« Reply #44 on: April 09, 2017, 07:19:00 AM »


Wife uses it but I don't think it is near enough.  She is still difficult.  How we've managed 40 + odd years I'll never know.


Thanx Charlie you (always) crack me up.   :rofl;

NB if the both of you are taking Zanax you might see a huge difference

    :angel;
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
cassandra
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When all else fails run in circles, shout loudly

« Reply #45 on: April 10, 2017, 07:14:30 AM »

Surgery coordinator just called back. I let him politely finish his answer that the 'rubbish veins surgeon' is actually one of the best surgeons with great bedside manners. I asked if there was a possibility of 'the Chief' to do this op, and that someone else could have the appointment with 'rubbish vein surgeon'. In my conversation with The Chief he sounded very positive etc. He sighed and said he was gonna do his best for that.

I'm hoping the answer comes soon and not during our holiday, and that it will go well.

NB at no point did I say 'rubbish veins surgeon' in our conversation  :angel;

I feel strangely relieved and deflated at the same time.

Love y'all and thanx again for all your input .

 :cuddle;
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
iolaire
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« Reply #46 on: April 10, 2017, 07:32:29 AM »

Also I'm thinking that one of the surgeons had said that I might enjoy a graft for maybe as long as 3 years.

On Thursday I met with a nice doctor in HEMATOLOGY/ONCOLOGY who seemed very knowledgeable and helpful.  She made some fairly disparaging remarks regarding the use of grafts and the propensity for them clotting off.  I believe her point was the artificial nature of them meant that they were going to clot off much faster than the fistulas.  From her comments it sounded like she felt the choice of grafts was poor from a blood specialists standpoint. 

(I was there because 25 years ago when my lupus was bad I had a clot, she didn't feel there was much risk of that with the transplant but did order some blood work to see if I had DNA that would lead to more risk of clotting, but again it really would not affect the post surgery treatment just allow them to make more informed choices.)
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
PrimeTimer
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« Reply #47 on: April 10, 2017, 01:16:04 PM »

Surgery coordinator just called back. I let him politely finish his answer that the 'rubbish veins surgeon' is actually one of the best surgeons with great bedside manners. I asked if there was a possibility of 'the Chief' to do this op, and that someone else could have the appointment with 'rubbish vein surgeon'. In my conversation with The Chief he sounded very positive etc. He sighed and said he was gonna do his best for that.

I'm hoping the answer comes soon and not during our holiday, and that it will go well.

NB at no point did I say 'rubbish veins surgeon' in our conversation  :angel;

I feel strangely relieved and deflated at the same time.

Love y'all and thanx again for all your input .

 :cuddle;

Sounds like you just might be making some headway with these people. Keep it up! Maybe they'll learn something. Please let us know how it goes. Meantime, here comes another wave of well wishes!
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
AnnieB
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« Reply #48 on: April 22, 2017, 05:40:29 PM »

Hi Cassandra, I just saw this thread. I hope everything went well for you. I will be keeping you in my prayers and sending lots of healing thoughts in your direction. Anne

 :flower;

 :cuddle;
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LorinnPKD
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« Reply #49 on: April 22, 2017, 11:36:47 PM »

Same here!  Hoping everything is going OK out there!
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