02
Apr
12

Update on Dan and Harvey’s Story


Here is the amazing story about my friend Harvey.

In 2006 Harvey learned he needed a Kidney transplant due to a rare condition called PKD.  In 2007 he was fortunate to find out his wife was a compatible donor.  After a successful transplant Harvey founded a non-profit organization – Living Kidney Donors Network.

LKDN’s primary goal was to educate individuals about living kidney donation and prepare them to effectively communicate their need to family members and friends. The organization reinforces the concept of “telling your story” rather than asking someone to donate, a very subtle but very important distinction.  You see, the waiting list for a cadaver kidney is a very long list.  One can die waiting for a kidney. A live donor offers a different methodology –no waiting list. Yes, there are folks out there that donate live livers and kidneys purely for altruistic reasons. LKDN successfully facilitates this process.

Over the years, Harvey’s organization has been responsible for matching countless donors and recipients by teaching them how to go about finding a donor. He has saved many lives.  I recently met with Harvey.  Since I am in the process of forming the Advisory Council at Northwestern I was anxious to get input from Harvey.  Harvey was great help for which I am grateful, but then he dropped what was to me a bombshell.  He needs ANOTHER Kidney.

So here is the guy that teaches and has developed the “how to” guide on procuring a lifesaving organ for others and now needs one himself.  Harvey’s many friends in the transplant community got together and rallied behind him.  Using the techniques he teaches his friends put together a website for him.  And I’m helping to spread the word not only for Harvey but others as well.

Harvey’s Kidney Campaign can be found at www.harveyskidneykampaign.com

Information’s on LKDN can be found at www.lkdn.org

There are many living kidney programs in the U.S.  One of the best and most active are here in Chicago at Northwestern. Here is the information on their website: http://www.nmh.org/nm/kidney-and-liver-program-rankings

If someone is in need of a lifesaving kidney (or liver) there are alternatives.  But there is a secret to make it happen.  You’ve got to be your own advocate.  YOU have to make it happen and YOU must take control.  Last week I talked to an individual who needs a kidney but won’t take the initiative.  Unfortunately, unless he or family members takes charge there isn’t much that can be done.  The system will not do it for you.

Our prayers go out to Harvey.  He has lots of spunk, high energy and he is going to do well.

As for me, it has now been 13 months since my transplant.  My only medication is Prograf which is an immunosuppressant medication.  My blood work is perfect.  ALT/AST is below 20 and bilirubin runs about .5 so I am better than 95% of the general public.  No high blood pressure or cholesterol medication and the only non-prescription stuff I take is Calcium with Vitamin D and a baby aspirin. To me my transplant is a thing of the past– like it never happened.

Last weekend I did 2 things I enjoy most – I flew my airplane out to Beaver Creek to ski.  The skiing was a bit sloppy at 70 degrees but the flight was great (http://flightaware.com/live/flight/N847DD).  I came back at 17,000’ sucking on 02 and relaxing all the way dodging some weather.

My advice for those contemplating a liver transplant – you can come out of the other side with a full life to live.  It isn’t the end of the world by a longshot.  And only with a small amount of luck you’ll come out a better person both emotionally and physically on the backside.

In March I took all the tests to get me into Dr. Levitsky’s immunosuppressant study.  Officially it’s called Phase II trial to assess the safety of immunosuppression withdrawal in liver transplant recipients. Josh is one of the world’s experts on immunosuppressant as it applies to transplant. Google his name and you’ll see what I mean.  Josh is the lead on a study to eventually wean patients off of the immunosuppressant drugs completely.  It is a known fact that about 30% of the patients do not need immunosuppressant therapy. The problem is they don’t know why this occurs.

I volunteered. In March and went through the screening phase where they performed a liver biopsy and drew blood samples which are kept in cold storage for future evaluation.  Everything looks great and now I am waiting to find out if I am in the control group or the study.  1/5 of us will be in the control group and I hope it’s not me. I want to be in the withdrawal phase where I am eventually off the medication.

The downside is I could have a rejection episode.  The good news is a rejection occurs in slow motion over a period of time and is easily fixable.  It’s not a big deal so I am happy to be in the study.

But there are other ways to beat the immunosuppressant’s as well.  Dr. Joe Leventhal is head of kidney and pancreas transplant at Northwestern.  Joe is using donor stem cell infusion.  It “tricks” the system of the recipient body to believe the organ is parts of the patient’s natural self. Very cool.  Joe’s studies have received a great deal of world wide press recently.  You can Google it or go to http://www.northwestern.edu/newscenter/stories/2012/03/kidney-transplant-leventhal.html . In the not too distant future a kidney may not be needed to be a “match” in order to be eligible for a transplant.

Not a week goes by without me talking with either a pre or post- transplant patient.  This is a special club.  I suppose there must be a secret handshake.  I look at my discussion with these folks as an honor and obligation and hopefully I am helpful.  As a transplant patient you have the obligation to be your own advocate and that means asking lots of questions.

Keep it coming!


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