Hello everyone, new to the site

[ponybill]

My name is Bill and I'm checking in. Karol told me about the site, thanks, Karol! I have had kidney disease from 13 years old. I got my first transplant from a cadaver when I was 15 and that kidney lasted almost 25 years. I just got a second transplant from someone I met online in early March. So far things are going great. I'd like to hear your stories and would like to hear about ways you think the system of organ procurement and dispersement can be improved upon. I feel we can do much better as far as getting the word out about living donation and getting a larger pool of donors in which to draw from (i.e. some type of global database/website). Here is my website:
www.friendsofjoey.com


Thanks,
Bill
  

[willieandwinnie]

ponybill. I'm going to checkout your site. We are a great group of people and learn from each other. Thanks so joining, I'm sure we can learn from you. Take care and keep posting. 

[MyssAnne]

Welcome, Bill!!!!  I'll check out your site when I get home tonight!!!

[Rerun]

Welcome Ponybill.  25 years on a cadaveric kidney is wonderful..     Here's to another 25!!!  I had my kidney 17 years and am now on dialysis again.  I'm not sure I want another one.  It is such a let down when it finally gives up.  Anyway, you will be a wealth of knowledge to this site and I'm looking forward to your posts.

             

[Slywalker]

  aboard Ponybill.  I also would love to hear the suggestions for organ procurement.  I just received a kidney from a live donor six months ago.  My donor is now actively supporting and encouraging people to be live donors.  She has become a great advocate and has found a few online sites where she answers questions, etc. from folks who are considering organ donation.

Welcome again.

Sandyb

   (Sluffbunny left the bunny up!!!  Yipee Skippy)

[paris]

   Glad Karol pointed you in our direction.  You will be a good source of information for us!   I'll check out your site.  Looking forward to hearing more from you.

[rose1999]

Hi and  you've found a great site thanks to Karol.
  (Sandyb I think sluffbunny did this just for you & me!!)

[Bajanne]

Welcome to our community!  So glad you decided to join us.  You have a wonderful story to tell.  I hope you have already done so in our Transplant Stories section (I will be checking).  If not, off you go to start typing!  You will find out that this is not just a forum; it's a bonafide family.  So please add your contribution.  I look forward to hearing much more from you. 


Bajanne, Moderator

[kellyt]

 

25 years from a cadaver?  That's wonderful!  If I could only be so lucky to have my first transplant last that long!  I'd be set!   
Congratulations!  It's good to have you here.  Please, please, please tell us your transplant stories!  Those of us that are waiting can't get enough of the good news!     

[okarol]

  Hi Bill,
I think your story is a good one. Meeting someone that likes Ford Mustangs on a forum and getting an offer for a kidney from them - that's just great!
Hope to hear more from you!
Welcome!


okarol/admin

[rookiegirl]

Bill  to IHD.  I truly admire your story.

[Sluff]

Great story Bill,

Welcome to ihatedialysis.com

I'm sure you have a few stories and plenty of knowledge to share, so please read and post often.

Sluff/Admin

[Romona]

 

[keefer51]

 

[boxman55]

Welcome to IHD. I am also a fan of the Mustang..

Boxman, Moderator

[Ang]

 

[bolta72]

Welcome and thanks for the site.

[Ken Shelmerdine]

 

[ponybill]

Thanks so much, you've made me feel welcome. I had a busy few weeks and didn't get back here, but I will be here from now on. I've been reading your stories as well and it makes me feel better to know that many are and have gone through what I have and share the same feelings about it. As far as a global database, I've been dealing with (expectedly) some resistance to the idea of expanding organ procurement globally from UNOS and The National Kidney Foundation. Their feeling is the transplant centers handle testing/procurement so a global database is not necessary. I don't feel that way.

I read an article online from JAMA http://jama.ama-assn.org/cgi/content/full/293/15/1883 about this very subject. The only exception is that the article talks about a national database. I was thinking bigger than that. On a planet with 5 billion people, you think we could create a large enough pool of willing donors from the U.S. and other countries to effectively end (or greatly reduce) patients on dialysis worldwide. Sure, it sounds like a crazy idea, filled with logistics and legal obstacles, but how do you think Ben Franklin felt trying to describe electricity? LOL

My thoughts on how this would work would involve first to create ONE website for donors and potential recipients to register (Maybe UNOS taking the lead role) with all of their pertinent information. Admittedly, it would first involve a massive advertising campaign worldwide to get the word out that this type of thing even exists. Second, willing donors would be tested and crossmatched with their results entered in for review. Then, systematic crossmatching by compatability, location, willingness to travel would be arranged. I would think the insurance companies would be on board with this because they could save untold amounts by getting patients off dialysis sooner with a large pool of willing donors. Sure, there are many logistical issues to be worked out (i.e. who would pay for and manage it), but I feel the core idea is feasible.

The bottom line is I've been in this system since I was very young and I have seen many gaps and areas that need real improvement, but get bogged down in red tape, medical jargon and legalese. I feel something big and drastic needs to be done to shake things up to the way organs are solicited, procured and distributed.

Thanks everyone!

[Sluff]

Thanks so much everyone, you've made me feel welcome. I had a busy few weeks and didn't get back here, but I will be here from now on. I've been reading your stories as well and it makes me feel better to know that many are and have gone through what I have and share the same feelings about it.

That is why we are here, Bill.  Most of the members here know exactly what you are going through, so it makes it easier to talk with each other.
I am predialysis and even though I read a lot, I know in my heart, it will be a whole different thing if and when I go on dialysis.

[lola]

 

[Mimi]

Hi Bill, I had a '65 Mustang in my younger years.  Loved that little car.
Welcome to IHD.

Mimi

[annabanana]

    

[kitkatz]

Welcome to the boards.
Stop in often and pick up on the news.
We are here day and night.




kitkatz,moderator

[ponybill]

I love Mustangs more now than ever! If it wasn't for that, I wouldn't have a kidney now, lol.