downtrodden
Joined: 24 Sep 2003
Posts: 5
Posted: Wed Sep 24, 2003 7:22 pm Post subject: As a patient,how do you feel about losing your kidneys and
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..being on dialysis?<
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>My feelings are rather depressed and even strange to some when I explain them.<
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>When i lost my kidney function i knew then and there that my natural life was over and that i would never be the same. I realized also that i had fallen into a catagory in which society feigns and would rather forget about.<
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>My body lost it's ability to maintain it's own life and i have to rely on chemicals and machinery to keep me somewhere between life and death or at the least in the same status as a android/robot.<
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>Helpless and hopeless are my emotional mainstays.These feelings tend to grow everytime i encounter an "evil" staffer at my unit. They seem to drain the will to go on and sometimes i say [like many other patients i know] that i don't want to die but sometimes i think it would be the best for me and the family. Is this really the will of god or a black art of man that i should suffer so-along with my family?<
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>Having suffered just about every vile abuse by my unit staff i continue to go even against what appears to be "all odds"!<
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>I feel that if the proper authorities do not act in our favor more innocent patients will be maimed or killed and covered up.<
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>JMHO!
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ridgerunner
Joined: 11 Jan 2003
Posts: 101
Posted: Thu Sep 25, 2003 10:18 am Post subject: downtrodden
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have you though about home dialysis on home you can by pass most of your problems. i know it is hard to get but if you can it is worth it if you would leke to discuss it i will be glad to talk to you. wish you the best. call or contact arlene.
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Curious 2
Joined: 04 Feb 2003
Posts: 5
Posted: Thu Sep 25, 2003 3:44 pm Post subject: You can do alot to help yourself
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Educate yourself. Get adequate dialysis and dont do reuse. Find yourself some support. You have lots of friends here. Just ask for a buddy and we will find you someone that can let you know that there is a life.<
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>When you first find out it must be rough. Just remember that many people have ESRD and still are functioning well. So it is amazing when your whole life is altered, but you can have a quality of life if you chose to. When your kidneys go, doesnt mean that you have nothing to offer. YOu do!
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patient
Joined: 29 Oct 2002
Posts: 137
Posted: Fri Sep 26, 2003 6:51 am Post subject: Life on dialysis
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You are correct that abuses go on dialysis and the proper authroiteis must act. Thats why we are here at this board - to make them act. <
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>Why are you the so called unlucky one that must be on dialysis? Maybe its because you are the one God could use to blow the whistle on the abuses. Most other patients will not fight for themselves. Also, believe it or not, you can learn so much about life from having this condition. You will find that wisdom is better than freedom in many ways as it will make you a more sensitive person to the needs of others. In caring more about others you will be blessed. Everyone has a cross of some kind to bear in life. The ones who seem to get away without any problems are the ones who will pay the most in the next life. Everyone has to die eventually. Its not how long you live but how well you live. When eternity comes you have to have your ticket to Heaven or you don't get in. A disease can cause one to relfect more on being sure he has the ticket while the person who never has problems eats, drinks and makes merry and forgets to get the ticket. Hang in there and make lemonade out of the lemon life has thrown you and you will see that it is possible to overcome in life and have an even better life then you would of had.
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Bill Peckham
Joined: 06 Jan 2003
Posts: 65
Posted: Fri Sep 26, 2003 7:54 am Post subject: Well said
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ridgerunner, Curious and patient - your comments are excellent. The one piece I would add is the importance of exercise. I spent my first two years on dialysis in a ?hoping it would rain? mood. Exercise and just being outside helped to turn the downward spiral I was in into an upward spiral.<
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>As with anyone, before starting an exercise program speak with your doc and remember that exercise is a
oad term that for a CKD patient can mean movement, stretching and walking in addition to aerobic and strength training.<
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downtrodden
Joined: 24 Sep 2003
Posts: 5
Posted: Sat Sep 27, 2003 8:14 pm Post subject: living with dialysis
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Thank you all for the support!<
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>The biggest down for me is the dialysis unit. The staff there are rotten to the core. Their hypocricy is vulgar to say the least. Patients rights are all but a joke! If you want to get treated fairly you must be young and one of the popular patients or you are neglected and suffer discrimination of all sorts.<
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>One of my biggest fears are the rookies who come in and have only six weeks training. Any computer skills they have are learned on the patients machines. In other words they are skilless and most are afraid anyway. We had one who was so freaked out that she would run into the bathroom and cry. I did feel sorry for her but at the same time I feared her-there is nothing like having an unconfident trainee coming at you with a needle and bloodline shaking like she was about to have a nervous
eakdown. I have a heart condition that is somewhat serious and I can not afford an attack!!!<
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>I have another one that when my TX is over and the machine is done she will shut off my alarm and go about sripping down other machines. One tech i had two years ago kept trying to over ride the machine when the heater went out. It felt like someone was pumping ice water into my heart.<
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>The only good thing is that they rotate them and every now and again i get a good tech once in a while.<
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>They need more medical training because most of them have no clue to patients other health problems and how to deal with them! One item that I find abhorable is the fact that they start these people out on high risk patients when in essence they should first start with the low risk patients and work from there. I think this is a dangerous practice!<
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>I sure would hate to know that my demise came from a newbies mistake and i am sure that the coronor would not look for these mistakes but just take an absent doctors word for it on the certificate-am i wrong?<
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>Well monday i get one of the techs who has been there awhile and she is lazy as they come and maybe even deadly too! She will refuse to
ing a patient ice or even cut down the BFR so that anxiety attacks can be avoided even with the doctors orders. This has happened to me many times and i asked my doctor [pcp] to prescribe a drug that would help me thru this but it doesn't work all the time.<
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>There are many many other problems here at "the Nashville Nasties" unit but i think i have vented enough for this time.<
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>Again thanks for you offer!<
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