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Author Topic: So what would you do  (Read 19895 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
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