I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Cordelia on July 29, 2011, 07:58:32 AM
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I'm super happy, my dietician gave me a glowing report card this month for my montly labs, I'm so thrilled and over the moon! :bandance; :bandance; My phosphorus is under 2, my iron is good, my calcium and my hemoglobin are good too.
I also got a huge compliment from her...she told me she felt as though I've 'come out' of something bad and made it a good, positive thing! She felt I should do motivational speaking to others who are having difficulties trying to follow the low-phosporus diet and losing weight. (I've lost 60 pounds since starting dialysis almost a year ago) ;)
Anyways, I don't know how I feel about getting up in front of a large group of people, I think I'd be better off one on one with people.
I was thinking perhaps talking with pre-dialysis people, what do you all think-do any of you have any ideas? I'm not sure how I would have felt someone telling me how to follow the renal diet when I was on dialysis for the first few months while on D.
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You sound pretty inspirational. I'm impressed. Start with one on one talks if you want but I bet that eventually your confidence will build so that you can talk to others in a group. Keep us updated.
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That's really great news! You should be proud and not afraid to share your successes with large groups who need to hear it!! Dialysis gets people down in the dumps, but by seeing someone who is making it work is truly inspirational. They say public speaking is scarier than death....we face death head on every day, so why not take on the public speaking and do it!! Best luck to you!
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Awww, that's brilliant Cordelia, you must be so proud of yourself!
:bandance;
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Sounds great. Good for you and I hope that you will start talking to others and share your experiences. :clap;
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:2thumbsup; Congrats!
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Cordelia, that is a brilliant achievement and you must have worked really hard to get to this .Be proud of your self, as for speaking to other people, just remember they are in the same boat as you are and you could really motivate them. My husband volunteered a year ago to let people see his catheter and to explain how things work and what it was like to have one inserted. As you know people are scared when they first have to contemplate dialysis. I think there was about 9 people there and they were so interested that every one forgot about their inhibitions because it interested them. I would say "go for it" you could be pleasantly surprised at how much you enjoy it and people would gain knowledge from it...
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Your Phosphorus is under 2? Isn't that too low? Did she tell you to back off your binders? I don't know what yours was before, but 2 is low. Our range is 3.5 - 5.5 or something? I'd be happy to stay at 4. Just checking......
I think it would be great to have you talk to people. Point them to this website also. It really helps people who don't want to talk at first.
:yahoo;
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What an upper! For you and for us, too! :2thumbsup;
You must be feeling great about this accomplishment! :clap;
Aleta
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Thank you, everyone, for your really sweet compliments :grouphug; :grouphug;
You all have really inspired ME! :)
I'm thinking perhaps a small group, or one one first for awhile, til I could get used to the idea of speaking in front of a larger group (if that opportunity ever presents itself)
I'm nervous, and a little excited, a real mixed bag of emotions. I'm going to talk to my social worker and see if she can come up with any suggestions. :) May not happen right away in the next month or anything but hey, who knows, maybe I can even do this after my transplant, then I'll have that experience to talk about too. :beer1;
Thank you all for your advice/suggestions and compliments, they mean so much to me! :flower;
Rerun, I'm from Canada. I think the lab numbers are differently measured in the U.S. :)
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Good way to start motivating/helping others is to start in your own dialysis unit. I know there were many times I go in early to catch up with folks and encourage them about the D journey. Shoot I went to my unit tonight (post transplant) to encourage folks. It was great catching up with my D friends.... Just helping people who are around you is awesome!
xo,
R
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hi,
What exactly are you eating?
Lisa
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You go girl!!!!!!!!!
lmunchkin :kickstart;
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Rerun, I'm from Canada. I think the lab numbers are differently measured in the U.S. :)
Yeah.. I was told that they wanted mine between 1.5 and 2.. my last labs showed it as 1.8.. I'm positive someone in the lab screwed up and mixed up my blood with someone elses.. I've never gone below 2..
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more the merrier when it comes to crowd size
jump in at the deep end, no time to panic that way
maybe theres a new vocation opening up
congrats on the diet and good luck
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Good way to start motivating/helping others is to start in your own dialysis unit. I know there were many times I go in early to catch up with folks and encourage them about the D journey. Shoot I went to my unit tonight (post transplant) to encourage folks. It was great catching up with my D friends.... Just helping people who are around you is awesome!
xo,
R
But I remember so well how much you despised dialysis! Forgive me if I seem impertinent, but how in the world do you "encourage" folks about the "D journey" when you were so unhappy? What do you say to them to "encourage" them? And do you think you could have been as encouraging if you had not received your transplant? I'm really, really curious to know what you say to these people.
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Well before transplant I would talk to my friend Mitzi about the different modalities of dialysis. She was having a really rough time with in center treatment and she was feeling bummed about not feeling well many days of the week. So I sat with her at the end of my treatment and explained different options with her. She wasn't even aware about nocturnal or Nxstage. Then her and I would talk about how a major part of this disease is mental. Plus sometimes she would just cry a little to me about what a drag D was for her. So just being there and listening to her I think really helped her....after transplant she asked me questions about the surgery and I showed her my scar and she said, "Well I was really unsure about going forward with the process but I think if you can do, so can I." Plus she was asking me questions about Medicaid/Medicare tonight too.
Then another lady I met named Norma she was very sick this Christmas and had open heart surgery, and I would call her and her husband, David on the phone and just say I was thinking about them and asked them if there was anything I could do. Also Norma was very nervous about getting a fistula so I just told her how the fistula is a better option and let her feel my arm and told her about buttonholes...plus she was a gifted and talented teacher so we would talk about school stuff a lot too. And actually she was talking about hiring someone to clean her house and I told her I would be more then happy to help her and David if she liked :) She liked the idea of not having to hire some stranger.
I guess what I meant from my post is just being a friend to people and offer information about different aspects of dialysis. I am not like some cheerleader "YEAH dialysis rocks!" but I do listen to people, hug, and talk to them. I think many patients on in center D are just happy to have a friend that really does understand and someone to commiserate with...does that make more sense? That is one way I deal with disease is reaching out to others and trying to offer comfort and information.
xo,
R
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Of course I despised dialysis in the beginning. Heck, for the first 6 months I despised it. But I have been on dialysis two weeks shy of a whole year and I have made leaps and bounds since the first 6 months. I went through the anger, the bitterment, etc, in those first 6 months......that is only natural and normal. I can see the positive to it now in the last few months. :)
What am I eating? I drink lots of water......elimnated all sodas and a lot of sugars too. Exercise helps a lot too. I do alot of walking even though I suffer with chronic pain. :)
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That is great!!! Phos levels in Canada are different from the states. Anything over 1.5 is on the higher level here. Hubby is on nocturnal and his phos is ideal. Going on the machine is is around 1.10 and coming off the machine about 0.70.
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Thank you del :grouphug;
You are right. Levels are measured differently in both countries. When I would come on here and read, it was confusing to me to understand the American measurements.
I was told by my unit that as long as I stay under "2" they won't be on my case about it LOL!
I'm so happy to hear your husband is doing well! :cheer: That is awesome!
I think in Ontario where I'm from, they just started 'nocturnal' dialysis through our renal program. I may have considered doing it last year when I started but unfortunately at the time, they didn't offer 'nocturnal' dialysis at the time.
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you sound just like me :rofl;
I have been on dialysis for 10 months and never, not one time have I ever takin a binder... my phosphorus is 2.5, and never been over 3.5!! my unit gives out stars with your labs and I always get 2 which is the highest you can get....
I am 31 years old and I am the girl sitting in the treatment room "preaching" to the 85 year olds that have been on D for a hundred years what they need to eat and not eat to feel good & have great labs!!!
Good for you!!! :bandance; :thumbup; :cheer:
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Thank you, Tbarrett, for your really sweet compliments :grouphug;
I am on phosphorus binders though. My phosphorus was quite high when I went into renal failure, I was itching so bad. I behave myself now though :thumbup; I'm in the safe range which is pretty good, so they say :thumbup; No more drinking coke, iced tea or sitting down with a bag of potato chips anymore! ;)
That's really great your labs are awesome, way to go! :clap; :yahoo;
That is so cool about your unit giving out stars! Our unit gets a smiley face on our report cards ;D
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I guess what I meant from my post is just being a friend to people and offer information about different aspects of dialysis. I am not like some cheerleader "YEAH dialysis rocks!" but I do listen to people, hug, and talk to them. I think many patients on in center D are just happy to have a friend that really does understand and someone to commiserate with...does that make more sense? That is one way I deal with disease is reaching out to others and trying to offer comfort and information.
xo,
R
You are such a kind-hearted person, always eager to help others even when you are experiencing such trauma yourself. Personally, I have found that "reaching out to others" and trying to "offer comfort and information" is the only coping mechanism that consistently works for me. It would be easier to just retreat into a corner and try hard to forget about all things renal, but that's not very satisfying. So, I understand your point very well and am sure that you are a godsend to many; yes, you make a lot of sense. :cuddle;
It's so nice to know that there are kind, thoughtful people in the world. Your existence makes me very happy.
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sweeeet!
I'm in the US and they want our phos 3.5 to 5.5 as well
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I don't know what I would do with people like you here, thank you so much!!! :grouphug; You all are wondeful people here! :thumbup;