1st life

Some of you already know this but for those  of you who dont.. I started on  dialysis on May 4 this year after being diagnosed with with a gentic birth defect that has caused my kidneys to fail.  right now my kidneys are in “acute renal failure”  which means  I can only live with Dailysis 3 times a week or a transplant.  Im on the national list and IM ready for that.  Until now Ive always felt personal health issues should be guarded privately.  Please  don’t take it personally if i haven’t told you as freind already about this..  Ive been learning to deal with it..and havent always wanted to bring it up in sl chats.  I hope you understand.

Some of you already know this but for those  of you who dont.. I started on  dialysis on May 4, 2009 after being diagnosed with a genetic birth defect that has caused my kidneys to fail.  Right now my kidneys are in “acute renal failure”  which means  I can only live with dialysis 3 times a week or a transplant.  Of the few living family members that I have no one can help right now so I’m on the national list in line to receive a transplant.  Until now Ive always felt personal health issues should be guarded privately.

Please  don’t take it personally if you a friend and I haven’t already told about this.  I’ve been learning to deal with it and have found it difficult for me to talk about at times.  I hope you understand. I do want to make it clear that I am not in any way soliciting for someone to sell or donate a kidney to me. I just want to create awareness and find out peoples opinion on the specific subject outlined in this video.. please watch it and let me know what you think.

I decided to break my silence in sl about my health condition because for obvious reasons im passionate about the idea in Reason TV’s video.  I really don’t want to have to live another 8 years like this.  Unless I get a miracle donor,  this is how its looking now for me on the list.  And for people in the US going on that list NOW its even longer.  The rate of kidney failure  is growing exponentially.  And it really has become a crisis for me and thousands of others.  To help create awareness  Machinmatographer  Chantal Harvey has graciously agreed to help me make  a film  from Second Life on the subject and I am open to any and all suggestions.

Thank you for listening,

D.

for more information  on this..

http://www.aei.org/article/27236

http://reason.tv/video/show/organ-transplants

http://www.rsnhope.org/

http://www.organtransplants.org/

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26 responses to “1st life

  • Chestnut Rau

    You are brave and strong Delinda. I am here to support you in any way I can.

    I have a personal interest in transplantation, having two friends who have been given the gift of life by generous organ donors.

    April is Organ Donation Awareness month and I hope to be pulling together an event in SL so that people can learn more.

  • Paisley Beebe

    Del Im glad you put that video up for comment its an interesting video as it gives no conclusions either and both sides have really good points. I’d have to think a lot more about this to know which opinion I’d support, just watching this video gives me some ideas on the issues but because of the issues on both sides, Im undecided. I do think a lot of people choose not to donate after death as they are scared they will be bumped off early to harvest their organs…or they just have a fear of being chopped up, while still physically alive. We know its a really awful thing to think of, I wish there were more attention paid to campaigns to allay peoples fears about this, but the campaigns I usually see are all about helping someone out who is dying, and humans are basically selfish. I guess they decided to focus on the victims because focusing on the donors is what people don’t want to know about. I know those fears are most likely totally unfounded, but I know I do have those fears, not overwhelmingly so, but they are there.

    The problem we also have in Australia and I’m not sure if its the same in the states, is we opt in or out on our Drivers licences, and I have a 5 year licence, if I were to opt in for doner-ship I would have to apply for a new licence pay a fee ect…its really not a great way to do it, it should be a lot simpler…I have no idea if I can change my option on a Registry. Making it simple to opt in, and addressing the fear that a lot of people have as I mentioned I think may help. I also think that there is a lot of people out there who just don’t ever find out about the need at all….its not on their radar. If we could get more people to donate after death it would help a lot, and live donors would not be necessary, any operation where you have to be admitted to hospital and anethisised is not simple, complications happen in hospitals. The insurance companies would have a lot of trouble I think covering someone who volunteered to have a kidney removed and who then suffered a complication after it, or later developed a problem with the remaining kidney.

    For you to have someone donate a kidney to you, what do you need them to be? same blood type? and healthy? do you have a rare blood type? Del you know …I think it would be really really helpful to gain some more understanding to maybe keep a blog of your process, I mean you write really well, and if people like myself knew the day to day of what you have to go thru, without making it a pity piece..I mean you can only live for 8 years with this machine doing the work for your kidneys? what happens? why will it kill you, I don’t like to think of you like that its hard for me to face it….and when I saw that woman on the dialysis it made me realise how horrible the actual experience must be…I didn’t know that, maybe we who know you, and care for you should know that…how do you feel about that. I want to know what your going thru, It upsets me, but I need to feel I understand more, without invading your privacy or being voyeuristic.

    Folks I’ve known Del for a few years now, and she won’t tell you this, but she is a young gorgeous woman in RL, she looks a bit like Fran Drescher…a real honey 🙂 who should be in the prime of her physical health, and she was! she has had a bad run of it this year and last, a really bad run, and none of it is to do with lifestyle choice its genetics. Del is one of the most passionate funny dedicated energetic people I know. for her not to have the energy to even type in chat means that she is literally flat on her back sick, she got the flu this week and still showed up for Live n Kickin…(and flu with non functioning kidneys can be deadly), so to go from her early 30’s where she was fit healthy with a great RL job and a great hobby/job on SL, to where she is now, and to continue this for another 7 or 8 years through this time is devastating. This illness will tie up her life, she cannot make future plans. She can’t just hop on a plane now. At SLCC she was due to meet me there, and a horrible complication occurred and she ended up in hospital. She won’t have kids, She wont have the life she should have had during this time, and none of it is her fault. But I knowI Del doesn’t want anyone to feel sorry for her, she is very clear about that…she is so damn positive at times its incredible. Even though she is often as sick as a dog…Del keeps up her love of Second Life and her love of music. She is the passion behind LnK, she loves every bit of the show, and I think its keeping her motivated to be doing it. Its her baby right now. She doesn’t moan and grumble about this, I have to ask her mostly to tell me how she is doing. Stoic just doesn’t do her justice, but just knowing her and caring for her, has made me think about this issue and its what she wants you all to do.

    She needs a new kidney just one will do. Its not about money, we can’t just buy her one…right now. I wish we could or she could, without thinking of the social repercussions of selling organs. Sigh,

    Because I now know someone close to me who is in this predicament I will go and change my option to opt in, despite my fears, my fears of her dying out weigh my own, and 8 years…sigh..wow

    Hugs Paisley

    • delindad

      Your right Paisley.. I certainly don’t want pity that gets you no where. Honestly im not worried about dying its living in my current condition and knowing that others coming along will have to go thru the same thing when just 1 law could be changed a waiting list.. is gone! I appreciate you honesty in saying your not sure and maybe this inst the answer but im going to do anything I can create more awareness and figure something out! I really do want to find out where people are at on this sort of thing because that will help me know what direction I need to go in. Huggs.. and Dont Worry about me!

  • Chantal Harvey

    That is a mindchanging video.
    I am honoured that I can contribute.

    • delindad

      Thank you Chantal and after seeing the Video that you and Trulie Telling recently made for Car Lane, I knew it you were the right one to work with.

      • Frets Nirvana

        Well …I am personally aware of this problem as a result of my father’s needing a kidney and being on dialysis. He is no longer with us ….but I thought at that time that the ability of people to sell a kidney would have solved his problem …so I am for it.

  • AutumnFoxx Sutherland

    Had to respond “Not Sure”, Deli, cuz well, I’m just not sure. I’m worried about how selling kidneys would effect the poor. If you desperately need a kidney and can’t afford one would you still be able to get one? Or would only the people with money be getting transplants? It all comes down to how it would be done. If it was managed fairly and everyone benefited, I’d be all for it. There are definitely ways it could work. I’d just want to assure that EVERYONE could get a transplant nomatter their financial situation.

    I have absolutely nothing against paying people for a kidney. As they said, if the doctors and surgeons get paid, why shouldn’t the donators?

    Obviously I want you to get better, Deli. So I do hope you receive a transplant very soon. *HUGZ*

    • delindad

      Autumn.. I dont think I would want to support a system like that.. but IM not sure what I think right now.. but I know that the more kidneys avail.. the more people who need them will get them..move faster up the list sort of.. I mean I have no idea how many people who need kidneys are rich.. but what if half of them were? that would move everyone up the list that much faster. But yeah I think everyone rich or poor should have an equal opportunity.. right now there is a point system in place that effect where you are on th e list.. and if they just continued to use that.. regardless of recipients financial situation.. that would probably be ea win/win situation in itself.

  • Lauren

    Delinda…I care so much. I will spend time researching what I can do. And like your other friends you can call on me if you want

    • Frets Nirvana

      Oh…and another comment. Contrary to a lot of popular belief ….the capitalist system does work. The regulatory system is not working obviously. So I vote to open it up and let those who can afford it …. purchase kidneys. I would predict that the current providers who pay for dialysis would also opt to purchase a kidney and have the transplants done. Dialysis is a waste of money if a transplant can be performed. There will still be donors and the purchased kidneys will increase supply. And it could actually improve the lives of those in poverty. Especially if they are also given the option of some counseling on managing the money that they have received. BTW I am a registered donor on my drivers license ….I will not need them where I will be going.

      • AutumnFoxx Sutherland

        I won’t get into a political debate here, but I disagree that the capitalist system *always* works. Sadly, for the disabled unable to keep a job due to illness it isn’t going so well. I speak from personal experience. Those living in poverty are not all there simply because they don’t know how to manage money or because they are too lazy to get a job.

        I am disabled. Without the Federal Government, I would be homeless right now. I rely on a social security check to survive, and it’s not anywhere near enough. I am way below the poverty line. Worse yet my mother and some other family/friends are in the same boat, and that hurts much more than my own personal situation… to see those I love going through these struggles. So I believe strongly that everyone deserves healthcare and the right to a transplant regardless of their finances. People are worth so much more than money. I really believe some of the poorest people in the world have the most to contribute.

        Just something I’m very passionate about so I had to comment.

  • Hiro

    I watched the video and I agree it should be legal to pay donors for their service.

    I thought the Doctor’s arguments didn’t hold water — that there’s no “relationship” between the donors who get paid. Well, there’s no relationship between donors who don’t get paid if they’re from the national list. Sure, maybe it’s nicer if donor and recipient are buddies but increasing the life-saving supply of kidneys seems much more important.

    Trouble is, however, this will be a hard thing to sell to congress and to the public. I don’t see the US becoming the 2nd nation in the world to allow it in my lifetime. So, while I support the idea, it might be more effective simply to push for other things that are more likely to make a difference in the near term.

    One thought is to push states to make organ donor status the default for licensed drivers. Instead of having to opt-in to the donor program, you have to explicitly opt-out. That right there would probably create a lot more donors, and not just for kidneys.

    Another thought is simply raising awareness of the problem generally. More people like Virginia P. might be identified to donate an unused kidney if they knew the statistics and how badly they’re needed.

    There’s probably other ideas along these lines.

    Let me know if there’s anything I can do to help.

  • Pepe

    Del, I voted yes. I daresay that a safe, well run, regulated, system for donating organs for a fee will not appear in my lifetime. That’s a shame, because people *are* buying kidneys on the black market with often horrible consequences to the donors. I’m not sure my old kidneys are suitable for donation, but I have opted to donate them.

  • Patrick.Leavitt

    Oh Del, Thanks for sharing your thoughts and pains with us. My 33 year old nephew is going through the same thing. He is frustrated as you are and it is hard to understand what its like form someone not having to live it.
    Thanks for sharing and my thoughts and prayers are with you as they are my Nephew.

  • Mitch Wagner

    Thanks for pointing me to this video.

    I changed my vote from “not sure” to “yes,” because basically after watching this video I’ve come to the conclusion that organ sales should be legal. It should be heavily regulated and policed, but it should be legal.

    • delindad

      Thank you Mitch, Thats about how I feel right now but I must say I’m learning from and respect the opinions of those who disagree.

  • Patrick Leavitt

    Del, I’ve been reflecting on that yes or no vote. I can see where the selling of body parts could really be a problem. However, I’ve come to the conclusion that yes there would be some problem cases (like in anything else), but all in all everyone would be happy. The poor can help get out of their plight as well as those who need them would too. Its a win win and both would benefit.

    I’m curious what does it take to be a match for a donor to a recipient?

  • delindad

    I know desperate people do desperate things. Im not desperate but determined to continue looking for solutions. And I believe that legalization and strict controls on selling organs in the United States would also lessen the opportunities for the black market that perpetuates horrendous crimes like the one in this story.. http://rashmanly.wordpress.com/2009/10/26/teenage-girls-organs-nearly-sold-on-the-black-market/

  • Fooh Ling

    Best wishes for your fight Delinda!
    I know ppl here in denmark in the same situation, patiently waiting to get a kidney. It’s free here though. Noone sells a kidney!!
    I’ll support the april-arrangement!!
    Big hugs!

  • Zeke Yoshikawa

    You know, I was terribly upset when Del told me about her situation she being one longest friends I have had in SL. Her plight is not an uncommon one in this country. As of today, there were 104,733 people on the waiting list for an organ tranplant, 16,679 transplants performed to date and only 8,541 donors available (both figures as of Oct 23, 2009). Would a “pay for kidney” program work, I honestly do not know, but it’s obvious that our system is not working. I did vote yes with regards to kidney sale.
    More info on organ donation/transplantation, go to http://www.unos.org/

    Del has and always will have my support in any way I can give it. big smooch

  • Juko Tempel

    I believe that one of the greatest barriers to organ donation is families not respecting the wishes of donors after their death – please, please make sure your family knows how strongly you feel about this if you register as a donor!!

  • 1st Life Part 2 I have a Living Donor « afk

    […] that this fortunate event about to happen to me in no way changes my opinion or passions stated in 1st Life Post a few weeks ago.    Not much time so I must keep it short, wanted to tell those of you […]

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