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Chicago, Illinois, United States
Make Life Happen! Welcome to all of you who visit. If you are looking into becoming a Living Donor and would like a detailed idea of my journey..scroll down and begin with the older posts first. I welcome any questions or topics that you would like to know more about.

Sunday, June 14, 2015

Five Years Later - What comes next for living donors?

I cannot believe how the time has flown since I donated April 26, 2010.  It just  doesn't seem possible that it's been that long (I'm in denial from an age perspective).

What I can say is that health wise everything has been great, my creatine level is the same as when I donated and other than falling off a shelf (it's not easy being graceful) and having surgery on my rotator cuff in May of this year all is well!

A concern of mine is that the number of living donors has been on the decline the last couple of years.  I still have been very active mentoring those who are interested in donating.  There have been discussions on several issues of living donors.  Should they be compensated?  My answer...absolutely not.   This would open what I feel is a dangerous situation.  If you are going to donate you donate to give not to be compensated.  There are many organizations that will help with expenses for living donors under certain circumstances i.e., should they need to travel to donate, should they have to take time off without being paid.  These non-profits set the standards and are reasonable.  Being financially compensated for donating a kidney is completely unethical to me.  This is not the way to entice more people to come forward and donate. It creates a living red market so that the highest bidder wins as opposed to who needs the kidney most.  Although every person is required to go through extensive testing before they are approved as a donor, there are too many factors that can hidden.  When money comes to the table people can be unbelievably creative and deceptive.

What would be far more encouraging is for the living donor to be provided free creatine level testing for their lifetime to insure that their remaining kidney is performing the way it should be.  These blood tests are costs that we must pay for after the free two year follow-up from the transplant center ends.   Another would be to make it a Federal law that an employee will not lose pay while they are recuperating. The government would give tax incentives or split the cost with the employer in order for the person to have the proper amount of time before they go back to work.  Since my donating five years ago, I only know of two people who were able to return to their full time schedule in two weeks.  It is an unrealistic period of time for healing.  Out of 170 that myself and other living donor advocates surveyed 75% felt it took them at least 4 to 6 weeks to really be comfortable enough to drive and return to work.  I think the two week guideline that transplant centers state is positively not enough time to heal.  Once you have gotten over the initial surgery and start to feel better, you still must remember that you are still healing internally and need to be very cautious of lifting or doing anything that could give you a hernia.

I would love to see transplant centers follow their living donors and monitor their well being both physically and mentally after donating.  This does not mean send out a "how did we do" survey.
This means coming up with questions that are relevant and quantifiable for future research and result comparisons. It should be done annually and given to all living donors. It should also include questions regarding their emotional well being as well as physical.  The ability to give solid information and statistics is so important from living donors on encouraging and helping future donors have better information to make their decision.

UNOS (United Network for Organ Sharing) you should be grateful to have living donors be more involved in the organ donation process.  They are a gift to you with their knowledge and experience. Better utilize the knowledge and experiences that they have to give and offer. What better way to encourage more people to donate?

Most importantly to all of you that have been so incredible to donate a kidney, make it your mission to stay involved in the donation process, mentoring others, sharing your experiences so others will benefit.  
So many are looking for your experiences!

Kidney hugs to you all!


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