helenj1999

  • I suppose it’s human nature when diagnosed with a serious chronic illness to compare one’s self to others. Often I see posts in various renal support groups of patients stating that they feel family, friends, and […]

  • Looks and sounds like you had a great time Brian. Thank you for sharing about this charity.

  • Thank you both for your comments. I’m pleased it provided a positive feedback for GMKIN. I hate videoing myself though lol.

  • Cristina, the initiator of #GMKIN, asked me to write a poem about relationships developed on #GMKIN to share at #UKKW2016. When I was first diagnosed with #ESRD eight years ago there were no local kidney […]

    • Hi Helen. Congratulations on your video clip! Thanks for sharing your great poem. It is about who walks in your life and who share your feelings, needs, empathy, support and care. GMKIN continues to be an important support mechanism for those living with this illness and all those who contribute, play a valuable part in this role………as your poem says. Well done. Audrey

    • Helen
      I was in the audience supporting Cristina present at UKKW 2016 and watched your video and the feedback from health professionals after it was played was fantastic. Well done the poem was really creative, summed up some really good feedback for GMKIN from the people using it, which as one of the creators we envisaged and hoped for but it is reassuring that it provides the network and support people need. Well done. Paula

    • Thank you both for your comments. I’m pleased it provided a positive feedback for GMKIN. I hate videoing myself though lol.

  • helenj1999 commented on the post, What if? 1 year, 7 months ago

    It would be very sad indeed if this vital service disappeared. The renal psychology service at MRI I have found to be vital to me at various times over the past few years helping with not just renal concerns, but other issues as well. It is also very useful to have an appointment during dialysis especially for those with transport issues and not…[Read more]

  • The NX stage isn’t used by MRI, so would patients who are not under SRFT be able to get training and use it? It’s not the organising of the holiday I find difficult, although some places I’d like to go abroad are not near any dialysis unit. I have family in Canada and the nearest dialysis unit is approx an hours drive away so have been unable to…[Read more]

  • Recently I’ve noticed in some other renal support groups that home haemodialysis (HHD) patients state they are wearing gloves. The home environment is different from a clinical setting and I began to question why […]

    • Hi Helen, until recently I was wearing gloves to set up etc only because I just carried on as I was taught during training. Now though I only use gloves during the ” tap and snap ” process when setting up my NX Stage machine as I find that doing it without gloves you don’t have a proper grip on the lines therefore not getting the required ” snap “. Of course this is only my opinion and others may find it easier without gloves. As for contamination, I completely agree that gloves are not neccesary if proper hand washing procedures have been followed. Also if a patient is being ” needled ” by a nurse , they are able to feel the vein much easier without gloves.

  • Free (For Lindsay)

    Although our hearts are heavy
    We pray that you are free
    Free from pain and suffering
    Of a life with kidney disease

    So spread your wings and fly
    Soar up above the sky
    To be with birds […]

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    My daughter asked me an interesting question the other day. “Is your glass half full or half empty mum?”. I thought about this and started reflecting on my life. Do I think that I’ve been dealt some unlucky […]

  • helenj1999 commented on the post, 12 Months 2 years, 7 months ago

    Ann I particularly can relate to the embarrassment about being wheeled to your car as I to have experienced that. It was following an occasion where my potassium had gone dangerously high a few years ago which […]

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    The time has come it’s here again
    Where all are joined
    Women, children and men
    To celebrate and spread the word
    To hope we get our voices heard
     

    For you see we all share one common bond
    We don’t have a […]

  • A fab concept for patients on maintenance dialysis. As well as easing physical aches it will have a big impact on the mental well being by aiding relaxation. Would love someone to massage my aching legs. Very […]

  • Hi Ann It is normal to have repeat tests. When I was on the list I had repeat Echos, ECG every year. I remember doing to treadmill. I lasted only a few minutes then breathless & weak legs, oh and laughing. […]

  • helenj1999 commented on the post, Happiness 2 years, 9 months ago

    What a beautiful blog Lindsay.
    Happiness is seeing my four cats charge about the house.
    Happiness is still laughing at my dads funny jokes
    Happiness is remembering the happy times I spent with my ex partner & […]

  • Great blog Rob. I can totally relate to the ‘ticking clock’ scenario. I feel like that at times my life is completely took over by such mundane tasks and hospital appts. and appts for my daughter. Whole chunks of […]

  • helenj1999 commented on the post, Dilemma 2 years, 10 months ago

    Lindsay. Try not to worry to much about the nurses feelings. I know where you’re coming from as I used to be just the same. However, after a while I did used to say if the needle was uncomfortable . After all it […]

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    I recently attended a clinic appointment at my local hospital Manchester Royal. Having not had the need to park in the old Grafton street car park recently I was surprised to find the original entrance closed […]

  • Thanks Rob. Sometimes I’m never sure whether I’m emotional because of the situation or because sometimes I’m just so tired & exhausted.

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    Christmas seems to have the habit of either bringing out the best or worst of emotions at this time. My daughter and I spent Christmas Day with my parents and whilst I enjoyed a lovely dinner and had some lovely […]

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