Kidney Patients waiting for transplant but still working

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Kidney  Patients waiting for transplant but still working

This  is a group  intended  for  those  experiencing severe  chronic  renal  function  but  still  working  and  trying to maintain  an  active  and  healthy  lifestyle. 

Members: 26
Latest Activity: Nov 9

Discussion Forum

Balancing life/work

Started by lorlee99. Last reply by Ron Grant Sep 19. 3 Replies

Hi everyone, I am trying to decide how to handle work: do I stop, decrease hours, go on disability?? I struggle between the fatigue, the enjoyment of my job, the need to keep "busy" or engaged,…Continue

Tags: working, life, of, Quality

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Comment by lorlee99 on May 19, 2017 at 15:31

Hello to all, I just discovered all the different groups! That's exciting. Anyway, I have had a transplant 17 years ago, and now in the process of being worked up for another: sounds like I will end up on dialysis first for 2-5 years by the sounds of things here in Edmonton, AB.  I am still working 3 days/week, but many of my days are very busy!! I love my work, but I find by the time my "Friday" roles around: all I want to do is sleep. I have terrible insomnia which doesn't help!

Loretta

Comment by GizmoGram on April 3, 2016 at 23:04

Hey everyone

Just thought I'd post since my current situation fits the label well enough.

I'm, 24, live in Toronto, and am waiting to hear back on when I will be getting a kidney transplant. My gfr is at 16% right now and has been decreasing fairly rapidly since I was diagnosed two years ago.

I'm trying my best to maintain an active lifestyle, though some days it is a challenge to do so.

I look forward to being able to learn more from others in this group.


Moderator
Comment by jdobbs on August 22, 2015 at 8:27

Hi  Dolly.  It sounds  like the PD was  at  least  a  better option  in  terms  of  dialysis  in  the  past for  you  because you  weren't  having to  travel  three  times  times a  week  for  dialysis  treatment.  I  have  heard  that  travel  several  times a week (especially if  having to drive  home after a long  day  on  dialysis)  can  be  an additional  reason for fatigue.

You  make a good point as  well  that travel  abroad  is challenging  as  there  is so  much  pre-planning and  thinking  ahead  anticipating  where  there  might  be  issues. Perhaps talking to  others  who have done  it might also be  very  helpful.  This might  be a  very  helpful  area    that  could  be  added  to  this  website-  in  terms of  "tips  and  suggestions  for  travel"  (with helpful  links  to  other  travel  related  websites  for  kidney patients).  It  is  exciting  that   there are so  many  more  options  for  travel,  from  the  large  ocean line  cruises,  the  very  popular  river  cruises  and  for  travelers  wanting  to  experience the  many  cultural  opportunities  now  available  with  improved  access  to  air  travel  in  many  regions of  the  world. For kidney those patients  who are vibrant  and  feel healthy  enough  -why not  travel  and  see other  parts  of the  world?   I often  think  we  have  a perspective  that  others may  not have.  If  people  aren't  chronic kidney  patients  or  experiencing  some chronic or  life  endangering  condition  that  may  not have  the  same  appreciation for  even  the  small things  in  life  we  can do,   and what  we  can  enjoy.  Not taking  health for  granted.

With  your  successful transplant  Dolly now  three  years behind  you,  this  seems like  an  important  moment  to  mark that passage  of  time  and to  celebrate!   Thanks to the  wonderful  life enhancing  gift  of your sister  there is   an  even  greater  freedom  for  travel,  time  for  family  and  friends,   and  so much  more.  This  is  good  news indeed. All the  best, Jack

Comment by Dolly on August 22, 2015 at 0:04

Hi,

I was on PD for more than 3 years and travelled approximately 45mins - 1hour each way to work as a full time admin. It was convenient specially during winter as you don't need to drive to the clinic 3x a week, I travelled abroad (you need to plan ahead, 2- 3months  for delivery of your supplies), you have a better option in food as you need more protein this time. Catheter was not an issue for me but when I first went to the airport to travel, I was worried and thought it will set of metal detector.

My sister donated her kidney last 2012 and praise God, my blood work is still good.

 


Moderator
Comment by jdobbs on August 17, 2015 at 9:33

I  have read  the  posts  of this forum today  and  several other  forums  and  I  feel  fortunate. My  GFR has  been  as  low  as  11  twice  in  the  past few  years.  But  it tends  to bounce  back  later  dropping  if I  get a nasty  bacterial  bug  infection. I had  been  hospitial  on  two occasions  for this in the past  12 months.    I  have had  verified  cases  of  "Compo"  virus  which comes from  meat  or chicken  not  processed   properly and with fecal  material-  when  eating  out.  Go  sick  again  this  weekend  with  vomiting and  non-stop   diarhrea. Dehydrates  me  and  GFR plummets. Takes  me  out of  the game  for a  couple of  days.  But  I   get  back on  my  feet and I  realize  I  am  so lucky , so very fortuante  still able to work  and  do many  things  that  others  with  chrnic  kidnesy disease  or kidney  failure  can't  do.  Although  the  lack of  energy and fatigue  is  sometimes very challenging.  I  remember  I not  on  dialysis.  I do  have  kidney  stones that  just  keep  on  coming  back-  some the  size of  peas  or even  small  marbles. The  Doc  took  out  more  than 30  stones  last May  when  he  went  in  and cut both  my kidneys open  (a  bilateral  PCNL).  "Youtube"  has a  lovely  little    video  of  this  surgery with a medical  vacuum  suctioning  out    handfuls of stones -  similar to mine.  My GFR has  improved  several  points a  few  months  later.  From 15  to 20 -  actually  a  big jump. Also  don't  have  the symptons  of  metal  taste,  itchyness,  extreme  fatigue,  constant  mental  fog,   etc.  i  am  now  able  to  keep  working  several  more  years  but as  Dr. Scott-Douglas,  chief  nephrologist  here says  when  I  asked.  "Sir,  without  question  your  kidneys  will  undoubtably  fail".  This  is a  straight  unambiguos  answer.  I  am  somewhat better  but  it  is clear  I  will  be  on  dialysis  if  unable  to  find a  kidney. I  also  feel  fortunate  and  have  much  compassion and empathy  for  my  brothers and  sisters  here  who  are stuggling  with  so  much  more  than  I.

What  I,  and what  we, can  all  do is to lobby  our  govenments  for  more  resources and action and  legislation  to  support    increased  kidney  donations.

All  the  best  to  those on  this  journey  (and  also  the people  who  love and  support  us in so  many ways).

Jack Dobbs

Comment by WilliamW on August 15, 2015 at 21:24
Thank you N for the insightful advice. Everyone who I have spoken to who lives an active lifestyle has indicated what you have described. I guess my concern is the way the catheter may feel and will it be easily concealed.

I have having a difficult time with the needling and as you indicated freedom and the commitment to the hospital is a imperative.

I will take your advise and begin inquiring about the possibility of converting from Hd to PD.

Thank you for listening, it is greatly appreciated.

William
Comment by Ron Grant on August 10, 2015 at 16:02

William..just read your post. I would strongly suggest you look into PD dialysis if it's an option for you. It is the least intrusive form of dialysis. I've been on it for over three years and work full time, travel, hike, etc. with no problems. It's a half hour up to four times a day, but the timing is generally good for those working.

(when you get up in the morning at home, at lunch break at work, at dinner time at home and at bedtime at home). And can use that time to watch news, read, surf internet..whatever. (once you're used to the routine) This assumes there is somewhere at work you can use. I just use my office..everyone knows when the door is closed at lunch, I'm busy with dialysis.

I'm pretty confident you'll find it MUCH more 'likeable'.

Comment by WilliamW on August 8, 2015 at 13:00
Thank you for listening. I am an IT manager in provincial government and have been on HD since mid January. I still continue to work full time and travel to my dialysis treatments an hour away after work 3 times a week. I arrive back home after the treatments at earliest at midnight.

I am totally exhausted and I am rethinking my decision to dialyse with hemodialysis and thinking PD may be a better option. I am still very active and psycologically finding this so difficult.

To make this worse, the love of my life has decided she cannot deal with my situation and has left.

I apologize for complaining but just need someone to guide me through this.

William
Comment by cpereyra on May 3, 2014 at 18:42

Hi everyone

Thanks for giving me the opportunity to share with the group

Carlos

Comment by Travp on April 25, 2014 at 0:10
Hello unshaven.
I could not agree with you more about the corporate selfishness/ignorance of downtown calgary. I am dentist functioning at 15%. Some days are worse than others. I had 2 "friends" who work downtown. I have told them my kidneys are failing me. I have not heard from them since. P***** me off. Sorry for the rant but it hurt my feelings. Good luck to your husband. My brother is being tested for me.
 

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