I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Des on October 02, 2009, 10:53:21 AM
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I need everyones help on this one.
I am having an interview with a journalist tomorrow morning about creating awareness for kidney disease and organ donation.
Now I was thinking
I don't want to bore her to death with statistics as she can get that off the internet.... I want to tell her something from a "feeling" perspective. Human interest story....
So.... what would you like me to tell her.....
I need things that will touch her heart and the readers hearts to prompt them to ensure that they not only become organ donors but that they realize what kidney disease patients go through.
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I think you are doing such a wonderful thing.
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Des, this is wonderful.
I think one of the things that is hard for many people to realize is that many ESRF patients look healthy. That makes it easy not to "see" the disease and the effects it has on our lives (including family members).
Even those who can still lead active lives (and many can't) have to give up a huge amount of time to maintain their health. In terms of time is is like having a part-time job, but one that allows for no time off no matter what. And for those who must go to a center to have their treatments, the issue goes far beyond the time taken for dialysis. It is the lack of freedom to travel, or to attend normal events that fall during scheduled treatment times. It is the loss of freedom that takes such a toll. These are invisible difficulties that those outside of dialysis never have to consider.
Good luck tomorrow. I know you will be just great!
Aleta
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My suggestion would be to tell YOUR story, from the heart, exactly how it is - what life is like for you, what life may be like if you don't get a transplant and if you do. What your fears are, how dialysis affects lives, not just the patient but the family etc.
I did an interview withour local paper when dad had been on dialysis for a few months telling how it was for him and for the rest of us. He has now passed away but the outcome is that our local hospital is looking at putting in 4 dialysis stations to save others having to suffer the travelling issues he had. It is now quite close to happening and would not have even been thought about if I had not set the ball rolling (I'm not trying to boast but just to show how telling your story with honesty can alter things(,
Good luck, be brave and tell it from the heart :cuddle;
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I would also get her to read this - when I joined this forum, the moderators posted this to my email address:
"From the Chair" The following was written by Lori Tate, BSW. Lori is a social worker withRenal Care Group in Brookhaven, McComb and Mendenhall, Mississippi. It all began Thursday, May 13, 1999. I was relaxing in one of the emptydialysis chairs, talking to patients who were getting off dialysis. I thoughtto myself "this isn't so bad; why do they complain so much?" Immediately mybrain took over; my next thought was "What if I couldn't get up?" What happened next is hard to tell, it all came into being so fast. I made adecision that would change my life. I decided I would come to the unit on myday off and pretend to be a patient. The nurses, of course, were excited about the idea and all joined in making the experience as real as possible. First I would weigh with 4 bags of saline (comparable to a weight gain of 4kilos). Secondly, I would sit in the dialysis chair and the saline bags wouldbe placed on me. The bags would be placed on each leg and two in the chestarea. Finally, one bag would be removed each hour. Yes, I agreed to sit inthe dialysis chair for 4 hours on my day off! It all seemed like such a good idea for a social worker. I would gain so muchempathy for the patients! I was excited! I was feeling great about myself. I'll be honest and admit the words "Super Social Worker" did come to my mind. However, less than an hour later, I began to think of all the things I neededto do during the weekend. How could I get it all done and still have time formy pretend dialysis? This is when I began planning my escape. How can I getout of this? How am I going to be still that long? It's not like it's thereal thinganyway. No! I've made a commitment. I've opened my big, fat mouth and now I have gotto do it! Friday, May 14th, 1999. I spoke with the charge nurse and he explained I would need to arrive at the clinic promptly at 11:30 am. Later in the day,I requested a morning chair. I could get so much more accomplished if onlyI could get an early chair. However, the charge nurse informed me there wereno early seats available. Can you imagine? A fellow employee, we work together! I've helped him out thousands of times. Everyone knows they (nursing staff) simply use the social workers to do all the things they would rather not do. Enough whining, the nurse said 11:30 am. I will be here at 11:30 am. The big day arrived. At 11:30 am, I was awaiting my turn on "the machine".Of course, I was not seated until 12:00 (noon) and not completely"hooked up" until 12:10 pm. With saline bags in place, books to read andother patients to talk to, I was ready to begin. The only problem was, I hadonly been in the chair for fifteen minutes and I was ready to get up.Otherthings that came to my mind while on the chair were: "These fluid/salinebags feel so heavy", "I am so cold sitting in this chair", "It doesn't feelthis cold when I am working", "Is my butt numb?", "I can't move my legs,they've fallen asleep". "What machine is beeping?" "I know how to hit thereset button, however, I cannot help because I cannot move". "I wish Icould change arms, I'm tired of keeping this arm still." My blood pressurewas actually low while" on the machine", I began to wonder, "What does thismean?" "Am I okay?" "Hey nurse, come here!" It was also unusual to be sitting that low in the chair. When you are seatedin the dialysis chair, because of the placement of the unit, you are unableto see anyone who isn't on your side of the room. I knew which nurses werein the unit, however, I couldn't see them from where I was sitting. Also,due to the placement of the machines, I couldn't see anyone on my left. Icould only speak with the patient seated directly in front of me, or thepatient directly on my right. Finally when my four hours were up, I did not want to talk to anyone. I hadbeen sitting so long, I just wanted to go home. I felt differently about theexperience than I thought I would. I honestly had not been concerned. I wasgoing to teach patients something by my good example. However, they taughtme a lot. All of my feelings can be multiplied by a million. I was not stuckby a needle. I did not watch my own blood come out of my body and go througha little tube. I did not have the fear of having to sit in that chair forthe rest of my life because my kidneys were no longer functioning. I did notbecome sick and vomit in front of twenty people. I was able to think aboutwhat I would have for supper when I got home, instead of sitting andthinking about all the things I couldn't have. I did gain a great deal of respect and admiration for the patients. I did not gain any further empathy, as the one thing I fully understand is that I will never fully understand or know what it feels like to be a dialysis patient, unless one day I am one. I can only hope this experience allows me to be more compassionate and more apt to treat patients with the human dignity I know everyone deserves. I also hope that some of the staff members who were working the day I sat in the chair for 4 hours will take the time to stop and think to themselves, "What does it feel like, from the chair?"
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Des, I agree with Rose. I would emphasize how kidney disease can change not only the life of the patient but how it effects the lives of the entire family.
You could also mention how organ donation even effects the lives of the people that are donating. Everyone I spoke to that has donated a kidney has a feeling of purpose in life and is glad to help someone live a normal life. Even the families of the deceased donors; it gives them a "little" sense that the death of their loved one was not in vain. By their act of kindness, they have made life better for someone else.
I know when I had my kidney transplant (it failed within 48 hours...blood clot) I could not express the gratitude I had for the family who gave me a new chance at life.
Good luck and what a great opportunity to speak for everyone who needs a transplant!! Thanks!
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Reading these posts just confirms that YOU people are the best... I think and feel alot of things but really battles to express myself and WOW! I know exactly what to say now.... You all were wonderful and I hope I make an impact so that even just one person can get off that darn transplant list.
:2thumbsup;