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Author Topic: My time has come?  (Read 14072 times)
SooMK
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« Reply #50 on: June 04, 2021, 11:35:08 AM »

Good to hear from you on here Mr B. Although I wish the news was better. Still, it sounds like you've survived and on the mend. I always think with medical things that boring is better. Onward to better days!
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
iolaire
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« Reply #51 on: June 04, 2021, 08:05:36 PM »

Good luck Mr B I hope things settle down.
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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.
Mr. B 123
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« Reply #52 on: June 08, 2021, 04:23:02 PM »

Good to hear Simon, I don't need any more surgery for a while.
Thanks for the support here on IHD
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Honor God, work hard, and keep show'in up.
Philippians 4:4-7
Mr. B 123
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« Reply #53 on: January 11, 2022, 07:27:33 PM »

Well friends, my journey with dialysis continues.  Had the new left arm fistula now for 8 months but still having trouble with it, only been able to use it for 6 times last month and I am now back using catheter. Access center said it was too small, but we tried anyway.  First time was OK, didn't even know the needles were in thanks to a great Tech. But 3 treatments later I was black & blue from my elbow to wrist.  I went to surgeon last week and they want to put a 4th fistula in my upper left arm.  I was hoping for a cow vein, but they don't think it will work.  So, we are still trying to use the lower left fistula.  They get one needle in but have trouble with the second, I have done a 1 & 1 twice using the fistula and the catheter.  More issues last week so they are using the catheter for a couple of treatments.  I don't want another surgery, had 5 in the last year.  Hope everyone had a Merry Christmas and I hope you have good New Year!   God keeps looking after me.
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Honor God, work hard, and keep show'in up.
Philippians 4:4-7
kristina
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« Reply #54 on: January 12, 2022, 03:17:51 AM »

Hello Mr. B and many thanks for your update ... I had a chest-catheter dialysis-access for a few years and fortunately I was lucky and it went well ... I could not have a fistula on my arm because I love playing compositions of favourite composers on my pianoforte and my fear was from the start that a fistula could become too impeding...
I do hope you are continuing to do as well as is possible and I send you my best wishes for 2022 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 ...
SooMK
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« Reply #55 on: January 12, 2022, 01:41:57 PM »

So sorry you have this ongoing challenge. Dialysis is hard enough without this. I hope something good happens for you.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Mr. B 123
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« Reply #56 on: January 12, 2022, 06:44:52 PM »

Thanks, kristina & SooMK,  I need all the support I can get.  You all take care.
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Honor God, work hard, and keep show'in up.
Philippians 4:4-7
MooseMom
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« Reply #57 on: January 13, 2022, 07:45:16 AM »

Gosh, you seem to have had an extraordinarily difficult time with establishing a working access.  Is there a particular issue that is causing this?  Is it just down to "too small veins"?  To have to go through so many surgeries is just awful.

I'm glad God keeps looking after you, but He needs to up His game!

As Kristina mentioned, she had a catheter for quite a while.  My mother had a catheter for 18 months and never had a problem with it.  I know an AV fistula is supposed to be the gold standard, but seeing the problems that you are having, is that truly a workable option for you?  I know that catheters require extra care and carry more potential risks, but gosh, I hate seeing you having to go through so much. 

Do let us know what happens next week.  I hope you're able to make some progress.
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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."
Mr. B 123
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« Reply #58 on: January 16, 2022, 03:24:21 PM »

MooseMom, I have had the catheter for 10 months and no problem.  Maybe my veins are just too small, but the surgeon said the vein in my upper left is already at 9 cm. which is over the minimum, so maybe that will work?????  Thanks for the support from all here.
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Honor God, work hard, and keep show'in up.
Philippians 4:4-7
MooseMom
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« Reply #59 on: January 16, 2022, 10:28:10 PM »

Well, it seems some progress has been made since that vein is now measuring over the minimum.  I'm really eager to know what will happen next, so do keep us posted.  I'm glad to hear you've had no problems with your catheter so far.  At least you are being able to dialyze as they keep working on your fistula.
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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."
kristina
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« Reply #60 on: January 18, 2022, 01:14:50 AM »

Hello again, Mr. B.,

Please tell me, why are you not continuing with your chest-catheter? After all, you had no problems with it? Sorry to ask, but I am just curious because for me it was just as perfect as is possible under the circumstances.

Take great care and best wishes 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 ...
Simon Dog
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« Reply #61 on: January 18, 2022, 07:10:36 AM »

Hello again, Mr. B.,

Please tell me, why are you not continuing with your chest-catheter? After all, you had no problems with it? Sorry to ask, but I am just curious because for me it was just as perfect as is possible under the circumstances.

Take great care and best wishes from Kristina. :grouphug;
There is tremendous pressure from "the system" to go fistula instead of cath whenever possible due to infection risk.   The key is finding an MD who can balance the specifics of your situation with the cookie cutter guidance provided by the medical system. 
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Mr. B 123
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« Reply #62 on: February 14, 2023, 04:42:34 PM »

Well, IHD friends it has been a while since I have been on here.  Life has been busy with family and other stuff.  Sold our old house last year and finally got moved into bigger place only to find the tub & shower leaked (long story) so we had to completely remodel bathroom, we now have 1 big shower.  Easier for me to get around in anyway.  Contractor said 2-3 weeks... we are now on week 6.  What a mess!

Finally seem to have my fistula working OK, and to have 3 angioplasties to get to this point but hopefully all will work out.  Even went back to the surgeon to discuss a 4th fistula, but I said let's keep trying for a few more weeks and I guess it payed off.  Right now, I have 2 techs and 1 nurse at dialysis that can stick me with no issues.  Got the catheter out last summer, I was using catheter and fistula until the fistula got going well.  They all agree I am very difficult to stick. 

PD nurse  stop by to say hello and asked which I preferred, PD, fistula or catheter.  I couldn't give her an answer, I said all 3 are a pain in the A$$!  But life goes on and my Jesus keeps me going so I can spend time with family & friends which I am very grateful for.  I hope this note finds you all in good health.  God bless!
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Honor God, work hard, and keep show'in up.
Philippians 4:4-7
kristina
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« Reply #63 on: February 15, 2023, 02:26:28 AM »

Hello Simon and many thanks for explaining the differences ... and ... it seems I was very lucky under the circumstances during my dialysis-time  :grouphug;

and ... hello again Mr. B and thanks for your update and hopefully you are doing as well as is possible and I send you my kind regards 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 ...
SooMK
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« Reply #64 on: February 16, 2023, 06:39:18 AM »

Hi Mr B! Sounds like good news--given the venue you are operating in. Hope it continues.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
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