Nephrotic syndrome

Thread: Nephrotic syndrome

  1. maltloaf's Avatar

    maltloaf said:

    Default Re: Nephrotic syndrome

    They couldn't be more supportive and I want to be fit and well to see my little girl grow up. Emotive but true
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  2. ibobsy's Avatar

    ibobsy said:

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    Just read that Jonah Lomu,the great All black also suffered from the same.Maybe Malty in your spare time read up on how he recovered to play rugby again.
    Last edited by ibobsy; 31st August 2015 at 03:33 PM.
     
  3. maltloaf's Avatar

    maltloaf said:

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    Didn't know about him before your post so thank you for that. I remember him decimated the England team. Ran straight through Mike Catt who was supposed to be dealing with him and scored 4 tries in all if I remember rightly. Pure Awesome.

    Anyway his story doesn't play out too well, he had to have a transplant because his kidney failed completely and the transplanted kidney also failed a few years down the line.

    I'm hoping mine doesn't come to any of that....
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  4. maltloaf's Avatar

    maltloaf said:

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    Small progress update.

    Weight is coming off nicely. I'll most likely have a bit left to 'work on' left over but I don't mind that. I haven't exercised properly for 3 weeks now and I can feel it, although I'm feeling tons more comfortable every day. I had my first proper day back at work yesterday and was comfortable all day apart from the very regular toilet breaks. Last time I worked, which was 21st, I couldn't even sit comfortable in a chair and standing straight was uncomfortable because of a band of fluid around my lower back.

    Peed 6 times in the first 3 hours of yesterday, I'd estimate getting on for 3 litres and probably about 2 litres in the afternoon, drinking about 1.5 litres in, so 3.5 litres out in total. Really happy with that, although it took upping my dose 3 times to get a decent "flow"...

    I still have a fair bit of edema on my legs and my ankles and feet are still very swollen so theres a bit to go yet but those were the places I first noticed it so I'm wondering if they will be last to drain. My clothes are starting to fit again now though and I feel much less "wobbly" when I walk. Wobbly like a jelly I mean, not unsteady. Strange feeling having all that water sloshing about your body, even going over speed bumps in the car would be uncomfortable because of the reverberation that would happen in my belly.

    I still have a good 2 stone to shift but it seems to be coming off at about 1-2kg a day which means within a week I'm hoping to be back to around 17 stone, so I can get back to proper exercising. I didn't like seeing 20st11lb on the scales just over a week ago !! Very depressing after all my hard work !

    Blood test tomorrow and another a week later, and waiting for my specialist to write to me for my next appointment, which should be in 2-3 weeks time. Hoping for news of increase in my albumin (protein in the blood) levels, which are apparently extremely low and be an indication that the treatment is wiorking....

    all the best everyone

    malty
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  5. ss30's Avatar

    ss30 said:

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    Glad your feeling better m8
     
  6. Zoots's Avatar

    Zoots said:

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    Awesome to hear, mate.
     
  7. muttleymacclad's Avatar

    muttleymacclad said:

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    Excellent to hear malty.

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  8. rmj2663's Avatar

    rmj2663 said:

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    Glad its all working.
    Hopefully be sorted in the near future.
     
  9. maltloaf's Avatar

    maltloaf said:

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    Another little update.

    Had 2 blood tests in the last week but I won't know any results at all until my consultant appointment which is now 24th Sept.

    The diuretics have worked amazingly well. I lost 15.1kg last week. Roughly 2kg a day but there was one day of 4kg loss ! I'm down roughly now to the weight I was when I first noticed the swellings.

    I'm feeling pretty good and I have more energy than I have had for ages but I do get cramps a fair bit in my hands and calves which I think is down to one of my pills.

    The steroids still make me really chilled. A bit loopy for about an hour then just mellow. They do seem to be messing with my sleep though, I keep waking at 4am and can't get back off again.

    Seems pretty positive but I am nervous of what they are going to tell me on the 24th, as we may have some preliminary biopsy results back by then...

    cheers,

    malty
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  10. moonrat's Avatar

    moonrat said:

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    Wow. What a crazy ride in such a small amount of time (15Kg in a week!!).

    Glad to hear you are nearly back to normal. Fingers crossed for the results.
     
  11. Basset's Avatar

    Basset said:

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    The sleep problems could also be just the mental pressure of everything that's going on..you tried just sticking the radio or podcast quietly ? Genuinely it helps stops the mind thinking and can usually help people drift again.
     
  12. ilscuro's Avatar

    ilscuro said:

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    Only just seen this, my best wishes to you to make a speedy recovery.
     
  13. greens117's Avatar

    greens117 said:

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    Only just seen this aswell, what a c**t of a month you've had m8!
    Hope you get some good news a get back to normal soon!
    I STINK GET OVER IT !
     
  14. BIG-TED's Avatar

    BIG-TED said:

    Default Re: Nephrotic syndrome

    Bloody 'ell mate, hope you get it under control and hopefully get your body back to your own.

    this was sent from tapatalk if it makes no sense...
    Run your wife a nice hot bath, light some candles & pour some wine. Then you've at least 40 mins on the xbox plus a clean wife.

    Experts... x is an unknown quantity and spurt is a fast drip.
     
  15. Brydo666's Avatar

    Brydo666 said:

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    Good to hear you are getting better mate, your cycling encouraged me to get started this year. I'll need to follow you on Strava.
     
  16. maltloaf's Avatar

    maltloaf said:

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    I've just been out on my first cycling club ride in maybe 2 months. I was very nervous but we took it steady. Really glad I went.
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  17. elephantsoup's Avatar

    elephantsoup said:

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    Good to hear. Get well mate.
     
  18. DJ Overdose's Avatar

    DJ Overdose said:

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    Fucking fair play to you mate. Quicker to being normal the better but don't over do things at this early stage.

    well done


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  19. maltloaf's Avatar

    maltloaf said:

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    An update on my health - met up with my consultant on Thursday and was told that my Kidneys are functioning perfectly. They are no longer leaking protein and I finally got the results from my kidney biopsy - kidney cells perfectly normal. All this means that they really don't know what caused my condition but they do know that my high dose steroid therapy has been successful in treating it. My weight is under control again and I'm enjoying exercise and life again.

    They are going to reduce my steroid dose over the next few weeks until it is zero and then see if I have a relapse. All in all it's looking amazingly positive though.

    Weight wise I am just about the lightest I have been for years. Before all this started I was around 107kg. When I turned up for the first clinic I was 132kg. I'm now tipping at about 105-106kg and have resumed my battle to try and get under 100kg one day.

    Exercise wise it's been going great. I am now commuting to work on my bike most days, 22 mile round trip and I can really feel the difference. The one day I didn't ride to work this week, I ran 5km instead and hit my 3rd best ever time. All really good and I feel like I'm back in the game.

    Cheers,

    Malty
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  20. muttleymacclad's Avatar

    muttleymacclad said:

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    Great news malty. It's the steroids giving you that fast time - you got Mo Farrah's trainer!?

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