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Self Employment and CKD

Posted , 4 users are following.

ellen30037
ellen30037

I'm currently self employed and 35 and been told in Jan I have CKD. Gfr of 54 but this has jumped around a lot at each blood test. I'm not supposed to have any symptoms but I am always so exhausted in a very unusual sense for me and I can gain water enough to go one day being able to put my size 8 jeans on to the next not getting them past my thighs. I started eating low phosphorous foods and less potassium and dropped about a stone in a week and got my energy back. Although I am self employed, I ama wedding photographer which is a very physical job, no breaks or guaranteed time to even get to the loo. A lot of pressure to get the work in and work around the clock. I've been told the docs think it's been high blood pressure that's caused the CKD in the first place, probably divorce not the work. I'm just wondering how others cope with physical jobs that are high pressure and maintain their health. Are there any other self employed folk on here who make it work, even when you are at stages 4/5? I know not everybody gets symptoms but I'm just wondering how to plan my a b c D e F options incase any of them happen. Docs aren't very good at committing to possible outcomes so hoping I might get some help here X

0 likes, 6 replies

6 Replies

  • Roundabout66
    Roundabout66 ellen30037

    Posted

    Hi Ellen

    my 53 year old husband is CKD4 with an egfr of 21 and he runs a building company, including physically doing the work himself.  He is tired, almost always falling asleep in the evening, but he keeps going.  We are worried about how he will cope as it progresses, if he'll have to give up the business.  I'm realising that their are no givens with CKD.  He was diagnosed 8 years ago and was told he could be on dialysis within a year.  He has now been told it could be in the next 6-12 months.  In the meantime we just carry on.  You can't plan, so we carry on until something stops us.  Really don't know if we will cope financially, it depends how Iill he is and for how long.  

    Wishing you all the best

    Mandy

    • ellen30037
      ellen30037 Roundabout66

      Posted

      Thank you so much for responding. It's a tough deal. I'm reading it helps to be self employed because you can schedule around treatments much easier but I'm not sure how well you'll feel inbetween treatments. I struggle to keep everything going as it is and I'm probably at the best I'll feel. You're husband sounds like he's being amazing. It's still a lot of pressure to be under while you're feeling so rubbish. I will just see if I can plan to make the job simpler and have people who can stand in if I need to. I've also got a toddler so I'm hoping I get a good long time like your husband but like you guys I'll just work it out when it happens. It's good to hear it's possible, it helps a lot. Thank you so much and I hope you two have a gentle time of it xx
  • trollking
    trollking ellen30037

    Posted

    Hello Ellen, your GFR will jump around depending on many factors even what you have eaten the day before can affect it.  My GFR ranges from 18 - 35 depending on if i have a cold for example or higher if i am infection free.  I too went through a divorce, my mum died and almost lost my job within a 3 months period (this was a few years back) and so i was struggling at times.  The doctors / consultants have been great with me however they are very vague and i once asked if i needed a dietition and the consultant just looked at me and laughed and said i think you are ok to be honest??  Anyway ..... the tiredness thing, i am ok during the day at work but i find that once i come home and settle down i can fall asleep within minutes, so i try to keep myself active until its sort of bed time.  One other thing (this is important) i was really ill just before Christmas and my GFR dropped to 18, i decided to drink more fluid and so i increased to at least 2 litres a day of water (or tea) my GFR has gone upto 33 (on last count), so that seems to be working for me, i carry a water bottle and so know how much i have drank. 
    • ellen30037
      ellen30037 trollking

      Posted

      Hi Trolking smile Wow stress has so much to answer for, sorry to hear you went through it in the first place. It's crazy how much stress can affect your body. You think oh it's fine, just riding this wave that can't last forever, keep going until it's all sorted and everything will be fine, then you find out your body wasn't quite up for the same ride. Really scary. My docs are being very vague with me about it all and I find that so unhelpful, I understand why, but it's still unhelpful. Your suggestion about drinking 2 litres a day will help a lot, so simple but I think that was the problem. I'm still new to understanding it all and probably seems obvious when you understand more but it must be why I've struggled with work this weekend so badly (which prompted my thread). I wanted a break all day for a drink but was too embarrassed to say. Will test it next weekend I'm sure that's what happened. Thank you very much I really appreciate your help.
    • trollking
      trollking ellen30037

      Posted

      In my experience the doctors / consultants are "happy" for you to struggle along until they are really needed (a gfr count of less than 15).  Good luck and i hope that you dont reach that, let me know how extra fluid goes and fingers crossed :-)
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