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Author Topic: So what would you do  (Read 19905 times)
cassandra
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When all else fails run in circles, shout loudly

« on: March 25, 2017, 05:31:17 PM »

Hi all. As mentioned in some other posts, my 20 yr old fistula is nearing it's end. The flow fluctuates from 200 to 1800. And it's so calcified that it's impossible to create new button holes in it as I can't get a sharp needle in it anymore. But I'm still using the 'old' button holes okay.
So the procedure has started to create a new fistula, which is a bit problematic after 20+ yrs D.

4 vasc surgeons have seen my arm where I've already had a wrist fistula when I was a kid. I have been told for the last nearly 40 yrs that there's no usable vein in the 'bottom' arm. One surgeon has tried to make an upper arm fistula, mumbled 'rubbish veins' and closed me up again.
Than I had one who said enthusiastically that he could make one near my wrist.
One that said he would try a fistula in my upper arm, but I would have to be under general anesthetic, it would be complicated, done with 2 or 3 separate operations, but he might also try a graft. And the last one said (Thursday) that it was very unlikely going to be a fistula, so a graft which could last a year, maybe three years (he said encouragingly) I'm scheduled for the 12' April.

I come home and discuss with hubby (who came with me to clinic) 1. My old fistula still works. 2. Do I really want to go through 2 or 3 operations for a graft that might work for another 3 years?

So we've decided (for now) to ask my vein mapping of my arm appointment to include veinmapping of my ankle. Maybe a fistula in my ankle lasts longer (and maybe I can have buttonholes there)
I rang the next day to the nurse who had never heard of a fistula in the ankle, but he would come back to me, he said. I'll ring again on Monday.

I'm not complaning, I've lived a lot longer without kidneys than most people I know/knew on D, but I would like another 5 years more or so, especially cos we're about to start to renovate the house, and I would like to enjoy the result (we are slow with those things, could take a few years  ;D. )

Any suggestions?

Thanx already and love to 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
Charlie B53
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« Reply #1 on: March 25, 2017, 05:41:18 PM »


I believe you are on the right track in mapping your legs to find out if access can be developed.  I don't know about going as low as the ankles, the veins that far down may be a lot smaller than higher in the calf or possibly in your thigh.  Mapping will tell the sizes.   The condition of those veins may be another story altogether.  Calcification of veins may not be localize,d to access sites and may be a general condition througtout your body.

I will keep Hope for a good test result and then simply have to wait and see what the Surgeon finds when he gets in there.

Prays always.

Love,

Charlie B53
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Michael Murphy
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« Reply #2 on: March 25, 2017, 08:02:59 PM »

The strange love hate relationship we have to dialysis extends to our fistula, I  have had mine only 6 years 4 on dialysis but it's the first thing I check every morning and the last thing I check every night, I've  named it after a character from Leave it to Beaver, Lumpy of course.  I m sorry for you problematic fistula I can imagine it's quite upsetting.  I hope something works out the girl in the next chair just had one put in her thigh.  Keep up the good fight you are a inspiration to us short timers.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: March 25, 2017, 10:51:28 PM »

Thanx guys

   :cuddle;
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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
kickingandscreaming
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« Reply #4 on: March 26, 2017, 06:21:04 AM »

Being on PD, I don't know much about fistulas, but I wish you the best in your outcome.  Carry on.
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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 #5 on: March 26, 2017, 07:12:56 AM »

I am sorry Cassandra that I am unable to make any suggestions as I have a chest-cath (best decision I could have made about my own "access")
and I just wanted to send you my good-luck-wishes and want you to know that I hope "things" turn out alright for you.
Best wishes and good luck from Kristina. :grouphug;
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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 #6 on: March 26, 2017, 12:00:04 PM »

Thanx girls

   :cuddle;
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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 #7 on: March 26, 2017, 01:48:58 PM »

Please let us know what new information you get and what you decide to do.

I was watching a TV show ("Vice") last night that had a piece on how technological and neurological breakthroughs have given more and more people dealing with spinal injuries and the resulting paralysis a lot of hope for the future.  It was amazing!  However, it did make me wonder why such breakthrough have not been forthcoming for dialysis/ESRD patients.  There should be more imaginative options for people with "rubbish" blood vessels!

 :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 #8 on: March 26, 2017, 02:58:22 PM »

I think the kidneys are the Rodney Dangerfield of organ.  No one really appreciates how important they are until they don't work.  So not that many are paying attention to it.  Also, there's a lot of money being made on ESRD patients, so if it ain't broken don't fix it.  To be fair, the kidneys do a lot of subtle and complex tasks, so it's not "just" a mechanical object like the heart.  So probably difficult to improve.
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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
PrimeTimer
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« Reply #9 on: March 26, 2017, 06:23:15 PM »

Cas: While I can't speak for fistula's, I CAN support you 100% on whatever you decide!  :cheer:
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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.
Michael Murphy
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« Reply #10 on: March 26, 2017, 07:59:22 PM »

There are several locations developing a implantable Artificial Kidney. At one place they have taken the components and placed them as a wearable Artificial Kidney. Those test were very successful. Further more there are several locations working on removing the rejection from a cadaver kidney.  We are nearing the cusp of major changes for ESRD patients.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #11 on: March 27, 2017, 03:06:10 AM »

Thank you all for the support, and Michael I'm hoping to still be around and in good enough condition, and in the right place (geographically, financially etc) to benefit from any of those changes. Those changes have been just around the corner for an awful long time now.
But hay, when there's life, there's hope
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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
iolaire
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« Reply #12 on: March 27, 2017, 05:48:44 AM »

Around my center a few people are using what I call groin fistulas but they are probably thigh accesses.  There are multiple guys and one woman.  It seems a bit awkward to come in and strip down to shorts, but like most things the awkwardness is probably no match for the alternative.  Good luck.
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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.
Simon Dog
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« Reply #13 on: March 27, 2017, 07:35:54 AM »

A short term access can be done by starting an arterial IV in the inner thigh.    These are not considered viable for long term use, and the RNs in my wife's hospital refer to then as "dirty lines".     I have also seen a setup that looked just like a chest cath on the outside of a thigh.
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iolaire
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« Reply #14 on: March 27, 2017, 07:55:49 AM »

A short term access can be done by starting an arterial IV in the inner thigh.    These are not considered viable for long term use, and the RNs in my wife's hospital refer to then as "dirty lines".     I have also seen a setup that looked just like a chest cath on the outside of a thigh.
I thought these were fistulas but honestly I don't look that closely.  I do think that needles were involved not catheters.
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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.
cassandra
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When all else fails run in circles, shout loudly

« Reply #15 on: March 27, 2017, 11:34:01 AM »

Thanx all, I'll be ringing the hosp again tomorrow, I couldn't get further than putting in a request for iron, and beta blockers as my BP has shot up quite a bit. Apparently Proprapronol (Sp?) doesn't dialyse out, but might cause me asthma attacks.

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
Rerun
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Going through life tied to a chair!

« Reply #16 on: March 27, 2017, 03:16:18 PM »

I've seen a few people with a fistula in their upper thigh.  You might ask about that.  They just wear shorts to dialysis.

I will have been dealing with renal replacement therapy for 30 years come June.  I know what you mean about "HOW LONG" do we deal with this.

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Charlie B53
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« Reply #17 on: March 28, 2017, 03:44:43 AM »


Shorts in the Winter could be a bit chilly.

I would be tempted to drag out my sewing machine and try to get it to work again.  'She' has to be a 'female' as it has quite the attitude and doesn't always work as well as I wish it would.

That said,  I would be tempted to figure out how and where to place a 'zipper' in the leg of pants making an 'access' to get to your access. 

Laugh, it could work!  As long as there aren't too many 'leaks' they could be worn in public and no one would notice.

The alternative is the Ladies could go back to wearing skirts!
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smartcookie
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LMSW

« Reply #18 on: March 28, 2017, 06:31:55 AM »

If you are like me and not the creative type, you can buy pants off hemowear, too!  http://www.hemowear.com/sweatpants-1/  I hope you find a solution soon.  Catheters are no fun. 
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
Charlie B53
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« Reply #19 on: March 28, 2017, 07:24:19 AM »


WOW!!!!!

I never had a clue that site existed.

Thanks for the link.
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smartcookie
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« Reply #20 on: March 28, 2017, 08:08:44 AM »

Your welcome!   :flower;
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
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« Reply #21 on: March 30, 2017, 10:56:54 AM »

I have a couple of friends with groin lines.  For both of them, the groin is the last place they have for any kind of access.  They've both been on hemo since they were children.  I do remember one girl, when I was a teenager, who had a fistula in her upper thigh.  I don't know if it was ever used, as it was put in as a backup to PD (I had one in my wrist as a backup as a kid too).  I also had a shunt in my ankle when I was 12.  It was put in, in an emergency situation.  That was in the days before lines were so commonplace.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
cassandra
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When all else fails run in circles, shout loudly

« Reply #22 on: March 30, 2017, 03:07:49 PM »

I've had groin lines before too. Not allowed to 'take home' though. The problem with the central caths is the central stenosis both sides. Anyhoo veinmapping again tomorrow. A surgeon rung back (again) to ask if I remembered who operated on the removal of my cerebral drain going to the bottom bit of my heart when it was infected. Yeah no idea, it was in '03 in Broadgreen hosp, he came from Sweden and happened to be in Manchester for lectures. I had sepsis then, and hydro cephalis so I don't remember more than that he was nice, duh. Anyway I'll know 'the team' by name by the time of the op on the 12'.
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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 #23 on: March 30, 2017, 08:30:49 PM »

My gosh you've been thru a lot and then some! I wish you well for the vein mapping. Take care.
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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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When all else fails run in circles, shout loudly

« Reply #24 on: March 31, 2017, 07:04:48 AM »

Thanx again PT, the vein mapping went as expected, there 'looks to be a useable vein in my armpit  :o.   ' Okay. I come home and it's my friend the surgeon on the phone. The  anesthesist wants a Necho scan (????) from my heart on Monday to see how extended the calcification is. Nb Necho scan looks like a CAT scan from the heart according to dr.Google.

In the mean time is my FIL admitted in another hosp with a TIA, and is hubby trying to take care of his mum who's deaf and nearly blind while his dad is recovering. So I'm trying to stay all bright and optimistic, positive and happy so we're ready for the next crisis.

      :banghead;

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
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