I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Deanne on June 24, 2014, 01:48:51 PM
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On the flip side of the thread about ignorant things people have said to you, what kind things or surprisingly insightful things have people said to you?
My Mom surprised me on Sunday. I'd never describe her as insightful. On Sunday, she surprised me by acknowledging I've had a rough year and she said something that hadn't occurred to me myself. I told her I think I'll have the nephrostomy tube removed on Friday and she pointed out that it's been nearly a full year since I've been free of surgically implanted devices.
I've appreciated the kindless of other friends have asked me what my dietary restrictions are before they've invited me over or before we've gone out to eat.
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What a brilliant idea for a new thread! I wish I had something to add, but I can't think of anything offhand.
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Excellent idea Deanne!
Last week my NP said she didn't know how us patients handled all the worry and what great strength we all have.
My trial nurse told me that medicine wouldn't be where it is if it wasn't for patients like me who are willing to try new things. She then went on to say that kids should be looking up to us and not athletes who are criminals.
My surgeon said I was like Mary Poppins, perfect in every way (I would have to disagree on that one lol)
And this is more of an insight...a guy I was once dating told me that if you can't ever pay back the people that helped you out, then pass it on. With this disease I've had a lot of help along the way, most of which I will be unable to impact their lives like they did mine, so I am always looking for ways to pay it forward. Right now I am making up "goody bags" for the future people in my trial to have during their transplant...hopefully it brings a smile and helps them out!
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One of the nicest things someone has said to me in the last year was by my nephrologist. My GFR was hovering around 12% and we were reviewing my meds. As I started to recite them I couldn't remember and muttered "I don't know why I do this, I have them all on my phone since I can't remember anything." And he said "perfectly understandable." Such a small thing but I was so grateful. Back then I felt like every other sentence I said started with "I forget". I thought it was so kind.
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One of my transplant nephrologists told me to "leave and don't come back for three weeks. You are too healthy to be here". I know it isn't really a compliment, but it made me so happy. It's the little things, I guess! My husband, who is not really a mushy kind of guy, surprised me this past weekend. I was helping him put trusses on a pole barn he is building, which is something I could not have done on D. It hit me how much I owed him for being my donor, so I thanked him for giving me my life back. He just laughed and said I didn't need to thank him again. He had as much to gain as I did by having me back to my old self. I think I teared up a little. Words cannot describe how you feel when someone "gets it".
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Not something someone said to me, but i remember being in agony after tx my tummy was very swollen i was struggling to breath in the middle of the night and they had taken bloods that evening. A nurse came and held my hand as i was crying getting anxious (only just had tx day before i think), and she wrote on a bit of paper my creatinine 84, saying to me, you're normal now. I cried some more.
I always remember my mum telling me what someone said to her after she had me. 32 yrs ago medical problems werent so well known about or accepted and as i was born with one imperfect kidney and no bladder she had some ignorant comments (one person told her she hadnt made a very good job of that, (meaning me, thanks!) someone else called me disabled (im pretty sure im not classed as that, i dont get benefits for it put it that way!)) Her own mum was afraid to hold me. But one person said to her, special babies go to special mothers. And it's very true!
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I have far too many to list, but I'm sure I've written about most of the interactions here. My boys have been the most surprisingly brilliant people through my times of illness. They put most adults to shame when it comes to kindness and insight. I guess one of my favourite moments didn't involve saying anything. My often clueless mother sent me a book she used to read me in hospital, I think she thought I would find it hilarious because she hated this book so much. We were going through belongings for our move to the UK and Aidan held up the book and asked me what it was. I started to cry and without needing to hear what was going on he dropped the book straight into the bin. (Yes, I asked him to recycle it instead, but I love that he didn't worry about whether it was something I should keep - the damn thing was making me cry and he acted without hesitation.)
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Today at clinic I had another patient's care giver tell me that everytime she sees me I am always smiling and happy and that I inspire her.
It made me feel really good because I am definately not always happy and smiling and in fact last week I had a melt down.
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While I was living and working in London, I collaborated with various underwriters in the Scandinavian market, and one woman in Oslo became a good friend of mine.
Once I moved back to the US, however, we lost touch. After about 10 years, I came across her old email address, took a chance and used it to contact her. Much to my surprise, she replied. She asked if we could perhaps meet up in London, and I explained all about my kidney situation and that I was in the process of getting on the waitlist at a second transplant center. I said that I didn't feel comfortable leaving the country, so she booked a flight to Chicago via Copenhagen just to come and see me. I thought that was beyond thoughtful.
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Most of the kindest things that have been said to me have come right from this IHD forum ! You guys are all so nice .
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Nothing to do with dialysis whatsoever but this stuck with me.
I was in a rustic bathroom trying to wash my hands in the pitiful sink. I made a comment about my displeasure with the facilities and that you would have thought that someone would have come up with a better sink. Calmly and with out skipping a beat the gentleman at the next sink over said, "I'm just happy someone came up with the idea of indoor plumbing." Then he smiled and wished me a good day.
I had nothing...