Author Topic: Peritoneal dialysis  (Read 1417 times)

VickyB

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  • Posts: 24
  • Reason for joining: Patient..AL Amy .kidney, spleen, bones
  • Diagnosed: Autumn2013
Peritoneal dialysis
« on: June 30, 2019, 12:25:39 PM »
Hi everybody . My nephrologist told me she has an amyloid patient on Revlimid , who has managed peritoneal dialysis at home, for a decade. I was wondering if anyone had any experiences in this area that they would like to share. Thanks. Vicky B.

patpinchin

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  • Posts: 586
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Peritoneal dialysis
« Reply #1 on: June 30, 2019, 01:40:18 PM »
Hello Vicky,

I haven’t the personal experience you are looking for, but you might be interested in the patient experience of Liz Doy, a late friend of mine, who dialysed at home for many years, tho’ I don’t know exactly how many.

When we were in contact frequently, Liz told me how the home dialysis had hugely changed her life for the better. From memory, she dialysed 3 times weekly in between a rewarding part-time job in a local charity shop & leading quite an active life. Liz used to send me photos of the short breaks & days out, she & her partner enjoyed very much indeed.

You can read Liz’s patient experience in this edition of AL Amyloidosis Matters.

https://www.myeloma.org.uk/wp-content/uploads/2018/04/Myeloma-UK-AL-amyloidosis-Matters-Autumn-2017.pdf

Good Luck.
Pat

VickyB

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  • Posts: 24
  • Reason for joining: Patient..AL Amy .kidney, spleen, bones
  • Diagnosed: Autumn2013
Re: Peritoneal dialysis
« Reply #2 on: July 03, 2019, 09:23:28 PM »
Dear Pat...thank you...it was very supportive and helpful. Life can be very scary sometimes..However, onward and upward.  Vicky.

Bonnie

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  • Posts: 1
  • Reason for joining: I am my husband's (AL Amyloidosis) caregiver.
  • Diagnosed: March 2011
Re: Peritoneal dialysis
« Reply #3 on: August 18, 2019, 05:02:20 PM »
My husband was diagnosed with Amyloidosis AL in March 2011 and 6 weeks later he went on dialysis. For 2 years he was on Hemo (6weeks at first on Revlimid) which affected him poorly - nauseous and general malaise. He was put on Velcade and Dexamethasone for 3 years - that 3rd entire year he was on PD and those prior illnesses disappeared. Continuing to the present on PD, he uses 3 bags per night and is very pleased with his "freedom"daily.

Andylorne

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  • Posts: 11
  • Reason for joining: Newly diagnosed patient
  • Diagnosed: 8 March 2017
Re: Peritoneal dialysis
« Reply #4 on: October 24, 2019, 08:31:48 PM »
Hi Vicky, I've been on revlamid and dex for 15months now ,I too have peritoneal dialysis at home through the night, to allows me the freedom of having the whole day to myself, its very easy to setup and we are able to travel abroad as Baxters organise getting all the supplies to your hotel, all you have to do is take the machine, which the airline are obliged to take free of charge.

VickyB

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  • Posts: 24
  • Reason for joining: Patient..AL Amy .kidney, spleen, bones
  • Diagnosed: Autumn2013
Re: Peritoneal dialysis
« Reply #5 on: December 10, 2019, 02:38:36 PM »
Hi everyone.I lasted 5 days on Revlamid, before the toxicity and cellulitis stopped me in its tracks.After 5 yrs on Velcade , I was told there wasn't another chemo that I could tolerate, so my Amy treatment was stopped and I was passed on to Renal.I was emotionally and psychologically gutted after years with the staff etc in the dept. Onwards to dialysis , and a kind, wonderful dept , who bend over backwards to get me through the various training and issues galore , with a body that is saying no, no, no, every step of the way. Product to eliminate fluid, goes straight into my legs , or up into my lungs , with the relevant fights to get back on track . I am determined to embrace it all, if I can , but so far , it's hard. On the positive, Baxters are nothing short of miraculous with their organization and deliveries..Fingers crossed for future success in this journey. Has anyone else struggled at the start ?  Vicky B.