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Author Topic: So what would you do  (Read 27829 times)
GA_DAWG
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« Reply #200 on: July 08, 2018, 09:57:36 AM »

Too often, patients have no say in who their doctor will be, thanks to insurance companies and their "networks." The one thing I have found that helps is if you can find a good doctor, neph or primary care, ask them for suggestions. It seems routinely that the better doctors stick together and can give good recommendations.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #201 on: July 08, 2018, 12:50:14 PM »

Thank you MooseMom and Kristina, and thanks for your suggestion Ga_Dawg but I'm in the UK, it's not down to insurance companies here.
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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 #202 on: July 08, 2018, 04:58:52 PM »

I'm in the UK, it's not down to insurance companies here.

Count your blessings.
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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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When all else fails run in circles, shout loudly

« Reply #203 on: October 01, 2018, 01:52:40 AM »

Hi sweet people, so today was the first day my 'new fistula arm' was thin enough to see that I have developped a pseudo-aneurysm where the intervention radiologist had messed up a fistula-gram (where a learned one sticks a catheter thing in the fistula in order to stretch a narrowing to improve flow) but went strait through.....


So now I'm trying to sort an other learned one to have a look, in order to get an appointment for yet an other operation to sort this out.



After waking up quite 'perky' (must have had the pefect REM sleep cycle) I now feel pretty deflated.
But am so incredibly grateful for the existence of this site, and all of you.


Love y'all, Cas
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
kickingandscreaming
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« Reply #204 on: October 01, 2018, 02:06:49 PM »

Sounds nasty, Cas.  I hope things go more smoothly for you soon.
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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
kristina
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« Reply #205 on: October 02, 2018, 05:45:58 AM »

Dear Cassandra,
I wish you all the best of good luck and I do hope, "things" get better soon and hopefully you get a quick appointment to get it sorted.
Thinking of you and I send you my best wishes from Kristina. :grouphug;
Take care !
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly

« Reply #206 on: October 02, 2018, 07:13:14 AM »

Thank you Kristina and KaS  :cuddle;


Tomorrow for Ultra Sound scan and see (yet an other) surgeon.


Love y'all, Cas
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
kristina
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« Reply #207 on: October 03, 2018, 10:38:05 AM »

Hello Cassandra,
I do hope your Ultrasound-scan appointment and your meeting with the new surgeon today went well ?
I keep my fingers crossed and send you my best wishes from Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
cassandra
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When all else fails run in circles, shout loudly

« Reply #208 on: October 04, 2018, 06:13:08 AM »

Hi Kristina, the scan went okay: the radiologist thinks it is an aneurysm (no problem, just don't stick needles in) or a pseudo aneurysm (problem) Duh. The surgeon was ill..... So now we're waiting still for a surgeon to have a look, and we'll know where to create two nice button holes.


Thanx for asking  :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
cassandra
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When all else fails run in circles, shout loudly

« Reply #209 on: October 24, 2018, 12:11:33 PM »

Just back from transplant clinic visit. Lucky again, got to see super surgeon. We had a good and honest talk. The aneurysm 'very most likely is a true aneurysm' so next week he'll look at the scans (as 'my' hosp is in another cgc (health trust) so he can't get into their system) the chance for me to get a transplant is less than 0.01%, and no it is really not poss to remove some para thyroids as I have way too many drains going through my neck (from head to heart after brain haemorrhage and hydro cephalus when I was a kid). Yes the Cinacalcet will keep causing the ulcers and might cause problems with perforations so we have to keep an eye on that....


Just live your life as well as you can.... I had to laugh then, duh


« Last Edit: October 24, 2018, 12:22:03 PM by cassandra » 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
MooseMom
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« Reply #210 on: October 25, 2018, 12:22:44 PM »

I've just now seen the most recent posts on this thread.  I didn't realize you were experiencing this kind of trouble.

I'm glad to see that you've been able to have a good discussion with the super surgeon.  What happens next?
Logged

"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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When all else fails run in circles, shout loudly

« Reply #211 on: October 25, 2018, 01:59:42 PM »

Hi MM basicallyo nothing will change. I just hope I keep living. If someting changes as in a less aggressive Cinacalcet or something, he'll let me know. If a match comes up and I'm operable he'll find me. I don't have to come for yearly 'viewings' anymore I can stay away, but if I ever need to talk, or have a question, I'm welcome to come.


It was very hard on Hubby who untill yesterday believed the surgeons who kept saying to "stay positive". He had nightmares yesterday. That's what makes me sad. But I'll get him through it. (Apparently he does not want to be 'set free'  ;D  So we'll hobble on, the kitchen drawings have been approved by the council (nearly 1,5 years) and the building work will start in March next year!!! I can't wait for that to be over. Fancy a garden where I can get into all by myself!!!
Nearly Xmas.


Thanx for asking MM  :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
enginist
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« Reply #212 on: November 23, 2018, 10:49:07 PM »

I don't think that asking for five more years is greedy.  I 'd gladly settle for five, but three might be sufficient if I had the luxury of knowing.  As you pointed out, you've gotten 20 good years out of this, which is more than most.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #213 on: November 24, 2018, 04:41:22 AM »

Thanx enginist


   :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
cassandra
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When all else fails run in circles, shout loudly

« Reply #214 on: April 26, 2019, 10:17:38 AM »

The last 3 times a nurse came out to connect me with my new fistula. Twice went fine, third time (this morning) not so much. Thatís okay I said, Iíll manage to use my old fistula, just need to soak the BHs a few hours. But it was not to be. Arterial Ďsort ofí fine. Venous was clotted. CLOTTED!!! So, tomorrow to hosp. Either trying the new one, or de-clotting old one. BTW Iím pretty sure it is because the Learned one decided to tripple my EPO.


   :embarassed:
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 #215 on: April 26, 2019, 10:20:13 AM »

Nb now enjoying a small lemon brandy in the hope to thin my blood a bit.


   :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
MooseMom
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« Reply #216 on: April 26, 2019, 12:06:39 PM »

Lemon brandy?  Oh, that sounds rather lovely!

I'm really sorry to hear you've had problems with your new fistula this morning.  I am a bit unclear as to what actually happened.  What was the problem exactly with your new fistula?  Was that the one that clotted, or was it your old fistula that clotted?  I don't think I've ever heard of anyone having two working fistulas (well, sort of working, any way).  Is that common?

I'm really interested to hear what happens next, whether tomorrow at the hospital they'll try the new one or will de-clot your old one.  Let us know, OK?

Other than all that, how are things with you?  Have you been able to enjoy the spring at all?  I hear the weather has been spectacular!
Logged

"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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When all else fails run in circles, shout loudly

« Reply #217 on: April 27, 2019, 12:50:03 PM »

Well I'm back. They first tried the new fistula, but it clotted. I tried the old fistula's venous button hole, but that was still clotted. The old arterial buttonhole still worked, so I dialysed with one needle for 4 hours. I'm happy I could D (with the big machines in hosp it's poss to D with one needle, I think it has 3 pumps or something)


Dear MM I have 2 sort of working fistulas because the old one is hanging on by a thread after 20 + years doing a good job keeping me alive, but it's so calcified etc that it's very, very dodgy. So Super surgeon managed to make a new one in my other arm, but it still isn't working reliably yet. I only know of Vt Big Rig who had 2 working fistulas (also transition from old to new) The Learned ones are not happy about it as the pressure on the heart is huge (well mine is anyway).


I expect to spend a long time in hosp on Monday, I expect a lot of scans to be made, and maybe a plasti on the new one (so it doesn't clot anymore, and maybe easier, and more reliable to use)


So now I'll continue to celebrate life with the last bit of lemon brandy (nb it's Dutch, I would think they have it in countries like Portugal too  :laugh: )


Love you lovelies


   :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
PrimeTimer
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« Reply #218 on: April 27, 2019, 02:15:49 PM »

cas, that is some major stuff! I hope they get the new fistula working and that you only need an angioplasty (what I call a balloon job). My husband gets those every few months or so and it keeps his fistula working nicely. Hope they address your splitting skin....that sounds dangerous, like a pseudoaneurysm. Please keep us posted. I send you well wishes and  prayers. You are certainly one tuff lady!
 
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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.
MooseMom
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« Reply #219 on: April 27, 2019, 03:05:40 PM »

Cas, thanks for explaining all of that.  That's what I thought was going on but wanted to be sure.

I'm sorry you have to dialyze in the hospital and spend so much time there, but at least that's a viable option!

I think you might need to sneak some lemon brandy into the hospital with you while you're being scanned and plastied...and plastered.  LOL!

Only if you feel like it, please let us know how Monday goes.  I'm very curious to know what they've found out and how they're going to fix things for you.

Take care of yourself!  Good luck on Monday!

Logged

"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 #220 on: April 28, 2019, 01:39:12 PM »

Keeping you in my thoughts and prayers.  You go girrrrl.
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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
cassandra
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When all else fails run in circles, shout loudly

« Reply #221 on: April 29, 2019, 09:05:01 AM »

Hello my Sweet People I'm back from hosp, and they've got my new fistula working again!!!! I'm so happy


   :cheer:     :cheer:    :cheer:


Thank you friends for your good wishes, thoughts, prayers and vibes.


    :cuddle;     :cuddle;




Love y'all, Cas
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
MooseMom
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« Reply #222 on: April 29, 2019, 09:36:08 AM »

Truly, this news has made my day!   :yahoo;  I'm so pleased for you!!!
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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."
PrimeTimer
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« Reply #223 on: April 29, 2019, 11:14:55 PM »

So relieved to hear this cas! Hope you're able to plan out a nice week now with lots to do (fun stuff) and no delays.  :wine;    :thumbup;      Enjoy!












Fixed smiley mod Cas
« Last Edit: April 30, 2019, 01:00:58 AM by cassandra » Logged

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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When all else fails run in circles, shout loudly

« Reply #224 on: April 30, 2019, 01:01:58 AM »

Thank you MM and PT


   :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
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