Do healthy people understand?
Moderator: administrator
-
amanda in CA
- Posts: 1806
- Joined: Fri Apr 23, 2004 5:14 pm
- Location: Georgia, USA
Do healthy people understand?
I know that it is hard for healthy people to understand what we go through with all that we have to deal with, but again it what brought into sharp clarity for me over the last week or two while my husband undergoes the blood work etc. as a work-up to getting on the paired donor list. While I appreciate that it he is doing this for me, and on a broader level he understands better than anyone else what I have to go through, it has become clear that on a smaller scale he doesn't. First of all there is all the comments about having blood taken, when I don't even mention when I have blood taken. Then he had to do a 24 hour urine collection. He worked from home to make it easier, wouldn't go out for a meal in case he had to go to the bathroom instead of taking the bottle with him everywhere he went. Then this morning he comments that he was supposed to just take a sample to them but insists he is going to take the whole bottle because they didn't give him anything to make it easier to get it out of the big bottle into the small bottle. (I could have syringed it out for him if he had mentioned that this needed to be done). Obviously this is just a small irritant to him, but it was worthy of comment nonetheless. He probably thinks that I moan about everything, but the reality is, that I comment on a fraction of those little things and so he just doesn't know.
-
Helen Rambaut
- Posts: 745
- Joined: Mon Feb 13, 2006 11:34 pm
- Location: London
do healthy people understand?
hmmm maybe he misunderstood. surely a 24 hr collection gets taken to the hospital and they take a sample?
the thing to remember is that you are in a completely different space/place. And possibly like anything which happens to us medically it's of great interest to the individual - it's just we the kpg are used to a whole lot more that the little stuff goes unremarked and unnoticed by us.
the answer to your question is - no they don't although some realise more than others.
Helen
the thing to remember is that you are in a completely different space/place. And possibly like anything which happens to us medically it's of great interest to the individual - it's just we the kpg are used to a whole lot more that the little stuff goes unremarked and unnoticed by us.
the answer to your question is - no they don't although some realise more than others.
Helen
-
Otherstarfish
- Posts: 217
- Joined: Tue Jun 02, 2009 9:20 pm
- Location: Gloucester
In my experience they have no idea, even my wife doesn't really get it. She watched me in agony draining out 4 times a day and never offered to donate, her sister donated in the end. Most people just think it's OK he/she can go on dialysis, not realising what is involved and that it cannot be sustained forever.
Even post transplant people just think that's it he's had a transplant, they don't consider the drufgs and side evffects, the massively increased risk of cancer, the need to avoid the sun and the inevitibilty that the transplant will eventually fail ( if you don't get cancer first )
Sorry that sounds a bit grim, it's just the reality we live with.
The hardest part is trying not to say anything for fear of being branded a moaner.
Even post transplant people just think that's it he's had a transplant, they don't consider the drufgs and side evffects, the massively increased risk of cancer, the need to avoid the sun and the inevitibilty that the transplant will eventually fail ( if you don't get cancer first )
Sorry that sounds a bit grim, it's just the reality we live with.
The hardest part is trying not to say anything for fear of being branded a moaner.
-
Helen Rambaut
- Posts: 745
- Joined: Mon Feb 13, 2006 11:34 pm
- Location: London
All I have to say is...AMEN!!!! Even people who see our struggles daily don't "get it".
I've posted this before (many times-sorry)...my sister will do anything for the Relay For Life-stay all night in a tent in a parking lot, march in the sweltering heat, etc., etc. but I cannot get her to do a 5K transplant benefit walk with me that takes about an hour or so on a Saturday! I get SO frustrated with the lack of awareness about our disease!
I see very overweight people in a grocery store loading their carts with cookies, donuts, soda and other junk foods and I want to say-"Do you even know what you're doing to your body??"Obesity causes a lot of the health problems that lead to kidney failure!
My younger sis (the one with a transplant also) and I always talk about how in the near future, there are going to be SO many more people on dialysis or waiting on a transplant...why does no one report on this???
It's a shame that the only way many people will learn about kidney disease is to have to experience it firsthand.
Pam
I've posted this before (many times-sorry)...my sister will do anything for the Relay For Life-stay all night in a tent in a parking lot, march in the sweltering heat, etc., etc. but I cannot get her to do a 5K transplant benefit walk with me that takes about an hour or so on a Saturday! I get SO frustrated with the lack of awareness about our disease!
I see very overweight people in a grocery store loading their carts with cookies, donuts, soda and other junk foods and I want to say-"Do you even know what you're doing to your body??"Obesity causes a lot of the health problems that lead to kidney failure!
My younger sis (the one with a transplant also) and I always talk about how in the near future, there are going to be SO many more people on dialysis or waiting on a transplant...why does no one report on this???
It's a shame that the only way many people will learn about kidney disease is to have to experience it firsthand.
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
Romans 8:28
-
amanda in CA
- Posts: 1806
- Joined: Fri Apr 23, 2004 5:14 pm
- Location: Georgia, USA
Helen, Oxford Transplant Unit, expect you to take the specimen out yourself and record the volume so I imagine that some transplant units assessing patients may expect people to do the same. Apparently the nurse taking the blood commented that in 27 years of taking blood that she has never had to take so much!!! Obviously she hasn't worked as a nurse at a transplant center where they are evaluating patients for transplant (and where no-one seems to comment or be phased by the amount of blood that us kidney patients have to give up!!!)
While I agree it's frustrating, why on earth *would* healthy people be able to understand the situation? It is pretty unique. I'm very fortunate that I have a great support network who sympathise with the situation but I'm pretty grateful they have no comprehension really.
I guess what we all seek is a measure of compassion and awareness that life isn't as straightforward as it could be - "understanding" in that sense. It must be difficult to remember sometimes when on the surface apart from a catheter or fistula (which most won't see) it's really not that visible a condition (no hair loss or rash, etc.). Then again I am grateful for that sometimes when I meet new people and it's not the first topic of conversation and I can pretend I'm "normal" for a bit. I do take a big swallow and remember how lucky I am when I see stories like some of the above about siblings and wives, though.
It would be nice if the people who ran kidney charities had as good PR departments as cancer ones sometimes, wouldn't it.
In the absence of that I see it as my own personal mission to educate as many as I can in my daily life - hairdresser, beauty salon, plumber, my partner's work colleagues, my work colleagues, whoever will listen basically. It's not much but at least it might help a bit.
Re: dialysis. I think the nomenclature could be changed. Dialysis = life support. It's as simple as that. I think the reason that it isn't is to avoid scaring people who are in this situation any more than necessary? But that "you'll be fine" attitude even by a doctor I still find shocking. I still get asked once a week or so when I can stop taking the tablets; I explain and the questioner usually looks quite wide-eyed.
Sorry, this has got a bit rambling, hasn't it.
I'm so glad people can come here and rant even when their nearest and dearest aren't being particularly helpful. x
I guess what we all seek is a measure of compassion and awareness that life isn't as straightforward as it could be - "understanding" in that sense. It must be difficult to remember sometimes when on the surface apart from a catheter or fistula (which most won't see) it's really not that visible a condition (no hair loss or rash, etc.). Then again I am grateful for that sometimes when I meet new people and it's not the first topic of conversation and I can pretend I'm "normal" for a bit. I do take a big swallow and remember how lucky I am when I see stories like some of the above about siblings and wives, though.
It would be nice if the people who ran kidney charities had as good PR departments as cancer ones sometimes, wouldn't it.
In the absence of that I see it as my own personal mission to educate as many as I can in my daily life - hairdresser, beauty salon, plumber, my partner's work colleagues, my work colleagues, whoever will listen basically. It's not much but at least it might help a bit.Re: dialysis. I think the nomenclature could be changed. Dialysis = life support. It's as simple as that. I think the reason that it isn't is to avoid scaring people who are in this situation any more than necessary? But that "you'll be fine" attitude even by a doctor I still find shocking. I still get asked once a week or so when I can stop taking the tablets; I explain and the questioner usually looks quite wide-eyed.
Sorry, this has got a bit rambling, hasn't it.
I'm so glad people can come here and rant even when their nearest and dearest aren't being particularly helpful. x
-
amanda in CA
- Posts: 1806
- Joined: Fri Apr 23, 2004 5:14 pm
- Location: Georgia, USA
I fully and respect that even people like my husband can't fully understand, and bless him, he probably does understand more than most people having stuck with me for the 20 years that I've had this illness. I suppose that what I am trying to say is that even he doesn't get the nitty gritty of being ill. He may understand the macro stuff, like the fact that I feel ill a lot of the time, the tiredness, having to do with dialysis. It's the stuff like the endless waits at doctor's clinics (you should see his impatience if he is kept waiting at one doctor's appointment, but we get to do it over and over and over again), the frustration that the appointments for the various tests weren't arranged for him, where again it's something that we have to do time and time again. He was never trained to set up the PD machine with me so although he sees me doing it, he has never experienced the sheer drudgery of having to set it up each night, night after night, year in-year out.
Thumps, I agree with you that dialysis should be referred to as life support. It would have more impact in people's minds. I find it particularly frustrating, when having explained PD to someone, that they then ask when I am going to start 'proper' dialysis. By it actually being called life support as a generally used term, there may be a big re-think not just by people in general but also by regulatory authorities. In California, it was relatively easy to get a disabled parking badge because of ESRD, but here in Georgia, unless you can justify getting one for another reason, eg. an advanced cardiac condition, the wording seems of the requirements means that it is not possible for most (if not all) ESRD pateints to get one.
Thumps, I agree with you that dialysis should be referred to as life support. It would have more impact in people's minds. I find it particularly frustrating, when having explained PD to someone, that they then ask when I am going to start 'proper' dialysis. By it actually being called life support as a generally used term, there may be a big re-think not just by people in general but also by regulatory authorities. In California, it was relatively easy to get a disabled parking badge because of ESRD, but here in Georgia, unless you can justify getting one for another reason, eg. an advanced cardiac condition, the wording seems of the requirements means that it is not possible for most (if not all) ESRD pateints to get one.
I never really know what to think when people say how well I look. I laugh it off and say -well what woman wants to be told she looks like sh*t!!! But inside it really niggles me that people don't understand what we go through because we don't sit in a wheelchair or have massive hair loss etc. The people who annoy me the most are those who try to encourage me to 'have a drink', go on...it won't hurt you...a little of what you fancy does you good. Er...hello..the last time I took no notice of the dietician I ended up in emergency having drugs to lower my potassium levels before I had a heart attack!!
It's even worse when when your renal consultant says it too!! Surely of all people they should know that just because you look well doesn't mean you ARE well!! I make an effort with my clothes and hair- I wear make up and fake tan, I wear high heels, I paint my toenails- why should I let myself go just because my kidneys are packing up just so I can look as washed out as I feel just to placate the feelings of those who don't know and often don't really care!!
I too am disappointed with the lack of help from my immediate family. Only one sibling offered to donate but isn't a match. I have two others plus two adult nephews and two brothers in law (not counting the four adult nieces). Nothing. They don't even ask how I am. But hey- I can manage this by myself and I'm not about to go begging anyone for a kidney. If I don't get a cadaveric one then I'll take my chances with dialysis and hope for the best.
It's even worse when when your renal consultant says it too!! Surely of all people they should know that just because you look well doesn't mean you ARE well!! I make an effort with my clothes and hair- I wear make up and fake tan, I wear high heels, I paint my toenails- why should I let myself go just because my kidneys are packing up just so I can look as washed out as I feel just to placate the feelings of those who don't know and often don't really care!!
I too am disappointed with the lack of help from my immediate family. Only one sibling offered to donate but isn't a match. I have two others plus two adult nephews and two brothers in law (not counting the four adult nieces). Nothing. They don't even ask how I am. But hey- I can manage this by myself and I'm not about to go begging anyone for a kidney. If I don't get a cadaveric one then I'll take my chances with dialysis and hope for the best.
My one life added to my cat's nine make a perfect ten.
Can i just say something to you all................prob not going to like what ive got to say but hey!!
Well this is my take on it all and lets not forget yes we have kidney disease and yes its horrible and yes normal healthy people get on our nerves cause they dont understand and yes they only will when or if they get it too but hold a minute, we all at some point have been given that chance of life and that to me is what is important, no matter how long we have it for, now dont get me wrong i agree with what you are all saying having a rant and getting stress off your chest im all in favour of that, esp when its the wrong time of the month, im no angel can be a right nagging ...... but we have to accept that we have health issues and will have for the rest of our lives, me ive dealt with this since i was 10 got unlucky with having tonsilitis which made my kidneys fail and i could get sooo angry that why did it have to happen when i was that age, then not getting a txp till i was 16, but i had 24yrs out of my 1st one and i only realised i had a txp when i went for check up's and when that one failed, yes i cried and yes i was scared of how long i was going to have to be on dialysis, but hey i bloody picked myself up and got on with it, you have to because we are only here once and life is for living and i made the most of my time on dialysis, went on holidays abroad made sure hubby had time out too, but i was lucky beacuse i didnt get to the point of being so ill i couldnt fend for myself, i worked, only part time those normal people i worked with again didnt understand what i was going through and yes asked me stupid questions but why would i expect them to know, and i dont like people fussing me and asking me how do i feel today, they all treated me normally and that is how i deal with it, and still do, im 43 now and life has not been a picnic for me, as my family will tell you!!
My father tried to dontate and he ended up having a problem on one of his kidneys, is fine now but was relieved, then his brother came forward, something i never expected anyone in my family to do and these people just have an amazing strength and yes they support me esp my uncle who donated the best gift ever last yr and my life and my husbands has changed for the best, as it does.....
But all im trying to say is yes we all have our rough times and sometimes more so on diaylsis and i was very lucky to do a short time, but i havent got off scott free with the rest of my life, unable to have a family, so many operations ive lost count but i am soo over the moon to be given this gift and i will soldier on as i have, so please try if you can understand your family im sure they do what they can for you, in there own way, they arent going to be able to ever fully understand what you are going through, ALSO AGREE WITH MORE HIGH LIGHTING THIS DISEASE !!
Nicky
Well this is my take on it all and lets not forget yes we have kidney disease and yes its horrible and yes normal healthy people get on our nerves cause they dont understand and yes they only will when or if they get it too but hold a minute, we all at some point have been given that chance of life and that to me is what is important, no matter how long we have it for, now dont get me wrong i agree with what you are all saying having a rant and getting stress off your chest im all in favour of that, esp when its the wrong time of the month, im no angel can be a right nagging ...... but we have to accept that we have health issues and will have for the rest of our lives, me ive dealt with this since i was 10 got unlucky with having tonsilitis which made my kidneys fail and i could get sooo angry that why did it have to happen when i was that age, then not getting a txp till i was 16, but i had 24yrs out of my 1st one and i only realised i had a txp when i went for check up's and when that one failed, yes i cried and yes i was scared of how long i was going to have to be on dialysis, but hey i bloody picked myself up and got on with it, you have to because we are only here once and life is for living and i made the most of my time on dialysis, went on holidays abroad made sure hubby had time out too, but i was lucky beacuse i didnt get to the point of being so ill i couldnt fend for myself, i worked, only part time those normal people i worked with again didnt understand what i was going through and yes asked me stupid questions but why would i expect them to know, and i dont like people fussing me and asking me how do i feel today, they all treated me normally and that is how i deal with it, and still do, im 43 now and life has not been a picnic for me, as my family will tell you!!
My father tried to dontate and he ended up having a problem on one of his kidneys, is fine now but was relieved, then his brother came forward, something i never expected anyone in my family to do and these people just have an amazing strength and yes they support me esp my uncle who donated the best gift ever last yr and my life and my husbands has changed for the best, as it does.....
But all im trying to say is yes we all have our rough times and sometimes more so on diaylsis and i was very lucky to do a short time, but i havent got off scott free with the rest of my life, unable to have a family, so many operations ive lost count but i am soo over the moon to be given this gift and i will soldier on as i have, so please try if you can understand your family im sure they do what they can for you, in there own way, they arent going to be able to ever fully understand what you are going through, ALSO AGREE WITH MORE HIGH LIGHTING THIS DISEASE !!
Nicky
-
amanda in CA
- Posts: 1806
- Joined: Fri Apr 23, 2004 5:14 pm
- Location: Georgia, USA
Nicola, I feel that I have somehow touched a nerve with you. When I started replying to this, I did not realise that you had had a transplant last year. All I can think from reading your posts, is that you have forgotten what it is like to be on dialysis and the frustrations that surround it, including the feelings that people don't understand. For that, I am glad, as it means that your kidney is making you feel how you should feel - well and like any other person. The point that I was trying to make is that even when you think someone understands, it is obvious when you get to the finer details of what we go through week in week out, month in month out, year in year out, that they don't. I wasn't even ranting, rather making an observation. I would rather make that observation on here rather than bottling up the feelings of isolation that having this illness creates.
As with many of the other people visiting this Forum, this is the only place that we can come to rant and vent. This IS one of our ways of coping with being ill, so that we don't burden people around us with how we feel. We come here because the people on this Forum are the people that understand. I must admit that I feel sad to discover that someone who has 'been there and done it' doesn't even seem to understand once they have had a transplant. If someone such as yourself can't understand, how on Earth can a non-kidney person understand?
In your posting, you seem to have made some assumptions about how I and others view our lives. For myself, I have accepted my illness as much as it is possible to accept a life-changing illness. I have accepted the fact and am quite philosophical about the fact that my life is likely to be shorter because of it. I do live my life to the full, and I am grateful for the fact that I am still alive and that dialysis has provided this opportunity for me.
No, I was not your age when I got ill, but I have now been ill for nearly half my life. Some people on here have been ill for a lot less time, some a lot more. We are all at different stages in our life with kidney disease and all have had it for varying lengths of time. Each of us has varying levels of family and friends support. We all have our own challenges within our lives, some being kidney disease-related, some not.
I would request that you not discredit other people's challenges since they have not been ill from such a young age as you.
Unlike you I have not been fortunate enough to get another transplant. I have been on dialysis for over 7 years now this time. My prospects of getting a further transplant are slim due to high antibody levels. The very reason that my husband is attempting to go on the paired donor list is because he cannot donate to me, and nor can anyone else in my family. Even if he goes on this list, all it does is widen the potential donor pool for me, but my chances remain remote because of the reasons that I have stated.
As with many of the other people visiting this Forum, this is the only place that we can come to rant and vent. This IS one of our ways of coping with being ill, so that we don't burden people around us with how we feel. We come here because the people on this Forum are the people that understand. I must admit that I feel sad to discover that someone who has 'been there and done it' doesn't even seem to understand once they have had a transplant. If someone such as yourself can't understand, how on Earth can a non-kidney person understand?
In your posting, you seem to have made some assumptions about how I and others view our lives. For myself, I have accepted my illness as much as it is possible to accept a life-changing illness. I have accepted the fact and am quite philosophical about the fact that my life is likely to be shorter because of it. I do live my life to the full, and I am grateful for the fact that I am still alive and that dialysis has provided this opportunity for me.
No, I was not your age when I got ill, but I have now been ill for nearly half my life. Some people on here have been ill for a lot less time, some a lot more. We are all at different stages in our life with kidney disease and all have had it for varying lengths of time. Each of us has varying levels of family and friends support. We all have our own challenges within our lives, some being kidney disease-related, some not.
I would request that you not discredit other people's challenges since they have not been ill from such a young age as you.
Unlike you I have not been fortunate enough to get another transplant. I have been on dialysis for over 7 years now this time. My prospects of getting a further transplant are slim due to high antibody levels. The very reason that my husband is attempting to go on the paired donor list is because he cannot donate to me, and nor can anyone else in my family. Even if he goes on this list, all it does is widen the potential donor pool for me, but my chances remain remote because of the reasons that I have stated.
Oop well it seems i have touched a nerve back there with you
Amanda what i was trying to say is, that is how i dealt with it and have not had things easy and also being ill can make you a negative person, stop pulling yourself down and i dont like you saying i have forgotton what its like to have kidney disease, how rude !!
If you dont mind i will never forget what its like, i still follow a strict diet, i look after myself and i do not take my life for granted in anyway, you know what i wish i had never replied to this, i have used this site for sometime and i agree it is a place where you can sound off at people who are at the same stage and it helps but i would not ever say anything to offend people, i was merely stating my take on it all and AS I SAID it will prob upset as it has you, thats life no one likes to hear other people with diff opinion's and if you must know i visit my diaylsis unit on a regular basis i have made very good friends there and at some point in my life prob be back, they where and are very special people all with not just kidney failure but many many other problems and will be on a machine for the rest of there lives, cant even have a txp I KNOW HOW LUCKY I AM and because of that you never forget, i still have a working fistula and feel safe incase at some point should anything happen i have a back up plan straight away, i have had counselling since my 1st kidney failed to help me with coping, because as you say dont want to discuss with family, maybe you should try this, its not all about blaming your illness on everything else.
I admire your husband doing all that he can to help, i see that we have the same medical condition, ok i have had a txp but as you know they dont last for ever, feeling down all the time as you sound like you are, i know that you have been waiting a long time but talking negative and always worrying about how normal people dont care, shouldnt you be thinking more about yourself and saying to hell with them all, view your feelings yes but think about the bigger picture and what other positive things you have in your life.....................and that is it on my take, dont worry i wont be touching a nerve again.
Amanda what i was trying to say is, that is how i dealt with it and have not had things easy and also being ill can make you a negative person, stop pulling yourself down and i dont like you saying i have forgotton what its like to have kidney disease, how rude !!
If you dont mind i will never forget what its like, i still follow a strict diet, i look after myself and i do not take my life for granted in anyway, you know what i wish i had never replied to this, i have used this site for sometime and i agree it is a place where you can sound off at people who are at the same stage and it helps but i would not ever say anything to offend people, i was merely stating my take on it all and AS I SAID it will prob upset as it has you, thats life no one likes to hear other people with diff opinion's and if you must know i visit my diaylsis unit on a regular basis i have made very good friends there and at some point in my life prob be back, they where and are very special people all with not just kidney failure but many many other problems and will be on a machine for the rest of there lives, cant even have a txp I KNOW HOW LUCKY I AM and because of that you never forget, i still have a working fistula and feel safe incase at some point should anything happen i have a back up plan straight away, i have had counselling since my 1st kidney failed to help me with coping, because as you say dont want to discuss with family, maybe you should try this, its not all about blaming your illness on everything else.
I admire your husband doing all that he can to help, i see that we have the same medical condition, ok i have had a txp but as you know they dont last for ever, feeling down all the time as you sound like you are, i know that you have been waiting a long time but talking negative and always worrying about how normal people dont care, shouldnt you be thinking more about yourself and saying to hell with them all, view your feelings yes but think about the bigger picture and what other positive things you have in your life.....................and that is it on my take, dont worry i wont be touching a nerve again.
-
Helen Rambaut
- Posts: 745
- Joined: Mon Feb 13, 2006 11:34 pm
- Location: London
do healthy people understand
Hi everyone.
When I read Amanda's post starting this topic I just took it that she was asking a rhetorical question and not really looking for advice on how to cope with this.
At times there are more bad days than good days and this is the place where you can come when things seem overwhelming.
The times when you are able to focus on the brighter side of life, the little victories and the little kindnesses shown by others are not the times when you are going to be posting.
I have felt what Amanda is feeling right now but the difference is that I am now through that part and for me the time on dialysis was less than half of the time she has served already.
Look at it this way Amanda, you are still here which is testimony to your coping and survival skills. That takes energy and focus. You must be doing something right!
When I read Amanda's post starting this topic I just took it that she was asking a rhetorical question and not really looking for advice on how to cope with this.
At times there are more bad days than good days and this is the place where you can come when things seem overwhelming.
The times when you are able to focus on the brighter side of life, the little victories and the little kindnesses shown by others are not the times when you are going to be posting.
I have felt what Amanda is feeling right now but the difference is that I am now through that part and for me the time on dialysis was less than half of the time she has served already.
Look at it this way Amanda, you are still here which is testimony to your coping and survival skills. That takes energy and focus. You must be doing something right!