I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Phillip_20 on March 25, 2008, 01:36:00 PM
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My girlfriend used to be on dialysis (I believe 2006 was the last time she was on it), but that was before her and I really started talking. When she talks about her experiences and everything, I don't really know how to respond to her, as I was one of the uneducated ones that didn't know a thing about dialysis before. I want to know how to respond to her when she talks about it to me, but I don't know what I can and can't say, or even what I should say. I almost feel like that since all of it happened before she met me and that I've never been around it, that it's not my place to say anything. Does anyone have any suggestions on how to react/what to say when she talks to me about it? I love talking about medical things, and it all intrigues me, but I just don't know what to say. Any help would be appreciated. Thanks!
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Hmmm. .. the proper response to any woman talking about herself is "That's fascinating; tell me more." ;D
No, seriously, it's okay to admit you don't know a lot of details about how dialysis works. Ask questions - it's better than ignoring it for fear of sounding silly. Has she had a transplant? I'm assuming so, if she's not on dialysis now. Has she told you about the risks with transplants? The odds are good that she's going to need dialysis again someday. She may be telling you about it to see how you would feel about being with someone who is on it.
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Yes, she has had a transplant before... a couple of them actually (her most recent one was in January of 2007). She has told me that it's pretty much a guarantee that she will need to be on dialysis again someday... and I've asked questions about if it's possible to preform dialysis on her own or if she needs someone else to help. Also, she knows I don't know a lot of the details lol. I think I told her this, but if she has to go on it again while her and I are together, that I'd help her out anyway possible.
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You're a good man, Phillip! :thumbup;
Speaking as someone else who is not a kidney/dialysis patient, I can tell you that I have learned a TON by reading posts on this site. Especially if you keep reading and following people's stories, over time you will get a much better picture of what dialysis is like, how difficult it is and why. I have also learned a lot about pre-dialysis kidney disease, what's involved in getting a transplant, etc, etc. So I'd say you should keep hanging around here on IHD and reading as much as you can. Also, post and ask more questions if you want. Most folks here are happy to explain stuff -- no matter how basic -- to the rest of us, if we're willing to listen.
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phillip,
listen,ask questions when you don't understand,use IHD as a reference , use the internet,good luck with it all.
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I learned a lot about kidney disease when my daughter was first diagnosed by going to Kidney School. It is an interactive, web-based learning program in 20-minute modules. It was designed to help people learn what they need to know to understand kidney disease and its treatment, adjust to kidney disease, make good medical choices, and live as fully as possible. You decide which modules to visit and when––so what you learn is entirely up to you. http://www.kidneyschool.org
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Phillip.. like you.. I met Keith after.. kidney failure, kidney transplant and that one failed and now he's on dialysis..
This is the only way I have known him..
But he makes it easy for me..telling me what is going on, what happened at dialysis, what if anything went wrong.. what pills he takes and for what...when he feels bad tired etc and why. I on the other hand am accomodating to him and his needs because I want to be.. cause well...he completes me
So.. I learned to listen.. and before I started asking questions of him... I told him straight off... I know nothing about any of this.. so I am asking you to learn and understand.. never to insult or seem stupid...
After a few weeks he told me to come here to this amazing great wonderufl site with amazing great wonderful people. :big hug:. (I honestly cant tell you how much I have learned and have yet to learn)
But the thing is this.. Keith opened himself up to me and before I ask him I try to find the answer..and..well.. it just works for us..(and trust me I have asked him some really doozy of questions too!)..Thank goodness he is the most wonderful understanding man I know. :cuddle;
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Phillip, Good for you for wanting to learn!! As the others have said: ask questions, research, read the threads here, and don't be afraid to sound silly. If she's talking to you about it, then chances are good that she wants you to ask questions about what you don't understand; she wants you to be informed; she wants you to know what life with her is going to be like. Good luck with everything, and hopefully you two will have many happy years together before you ever have to worry about the reality of dialysis!
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Philip - welcome! Good on you for wanting to know. Clearly by sharing with you stuff about doing dialysis and transplant your SO is sharing intimate details which indicates a lot of trust (ie: she's into you bigtime :) )
I think clearly there's nothing wrong with asking questions of her. If she doesn't feel like talking about some aspect then she won't.. but I think she will be pleased if you DO ask because it shows you are interested in what is clearly a big part of her life - even if right now she is blessed with a transplant - as we all know that is just another treatment option. I doubt she would be offended or upset by any questions you ask since she clearly wants to share with you.
Ask questions here if you feel you can't ask her. I'm sure we'd all be happy to help.
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phillip,
listen,ask questions when you don't understand,use IHD as a reference , use the internet,good luck with it all.
I agree with Ang. Your girlfriend is the dialysis/kidney expert, and you can learn a lot from her. Obviously, she's open to talking about it with you. Be supportive, be informed, be there! You sound like a really good guy.
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Just listen and when she talks about things ask ?'s she will love the fact you care.
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First of all, don't feel badly about not knowing much about dialysis...unless you HAVE to, there's no reason to...and we all know that.
Second, be prepared...the learning curve is STEEP! It's an entirely new language with acronyms and shorthand...but stick with it and ask questions and keep reading on here and you'll be spouting off EPO and BUN and FISTULA like a pro.
Dialysis sucks...knowing you may have to go back to it after getting a transplant must be difficult knowledge for your girlfriend. Be patient and caring and curious and you'll do great.
Good for you for wanting to learn and caring so much!
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Thanks to everyone who responded... I'd like to say that I am starting to finally understand, and I am very happy about that