Archive for the 'Living Kidney transplant' Category

31
Dec
14

A YEAR IN REVIEW AND THANKS


Over the past year my blog has received thousands of hits and I have received many E-Mails from folks contemplating an organ transplant.  As any transplant patient transits the process it’s all about patient and their survival.  Fear, hope, and a myridrid of other emotions affect the patient and their families in additional to their health problems.  The fear of the unknown can be paralyzing. I am grateful if my blog has helped some of you in the process.

My transplant journey began 18 months prior to my transplant in March 1, 2011. It’s been almost 4 years since my transplant.   I was lucky because I was very healthy prior to transplant.  In June of 2011 the FAA gave me my pilot’s license back and that winter I was back on skis.  During the summer of 2011, only 120 days after transplant Nancy and I were spending a month in Canada.

During my journey I had no fear and envisioned a month out of my life once I received “the call”.  My vision was to visit the Gift of Hope facility (the local organ procurement center) on day 30. This vision became my reality; mostly because of my knowledge and faith. On April 1, 2011 I had a delightful lunch with the president of the Gift of Hope after a tour of their facility and meeting the people that made my transplant possible.  Today I have no side effects from my transplant except a big scar that has healed nicely as a badge of honor.

After 4 years of reflections I have two observations to share with you:

SEEK THE BEST MEDICAL.  GO TO THE BEST — Generally for most of us we have decent insurance.  Your insurance will pay for you to go to the very best providers in the world.  It also pays for you to go to the worst. It’s your choice.  If someone offers you a free meal of your choice for a co-pay are you going to choose a Big Mac or a 5-star restaurant?   This means you need to take PERSONAL RESPONSIBILTY. (Something that is lacking in our society but I digress)  You or a family member must research for the best care, you need to learn the system, the process and everything about your condition. NEVER wait for your local doc to make a recommendation for the best care.  You need to take the initiative. You and your family must take control of the events. You are going to control the events or the events are going to control you. Time is not your friend.  This is YOUR responsibility and if you don’t take this seriously you may not survive.

It seems that one of my missions in life is to steer my friends away from our local hospital where I am waiting for my first “good news” story.  The docs do their best at these local hospital but best isn’t good enough.  They tend to hang on to their patients too long. Often they are doing their patients a disservice.  When the patient finally make the switch to a Center of Excellence teaching hospital they usually say to the patient – “that’s where I would go”. (Which begs the question- why the hell didn’t you say that before?!!)  I think one of the dirty secrets out there is what the transplant centers refer to the Friday afternoon dump.  That’s when the local docs decide it’s time to pass on their sickest patients to a transplant center.

Of course, if every patient decided to go to the same “best doc” there would be long lines at Mayo and Cleveland Clinic with empty beds at Podunk Hospital. The good news for you is only 5% of the patients will be competing for the best!  95% never seem to take the initiative.

Are you part of the 5% or the 95%? Align yourself with the major league players!

“GIVING BACK” IS A UNIVERSAL DESIRE OF A POST-TRANSPLANT PATIENT.  I noticed this dynamic early.  A post-transplant patient has become a member of this “special club”.  It’s not a club we ever thought we would join but by virtue of our transplant we become a member.  We are all very grateful and we seek ways to give back to the next person in line.  In my opinion, we are much like a college alumni club where there is an overwhelming gratefulness and a zest for a new life.

This dynamic was the basis for us forming the Transplant Advisory Council at Northwestern and our on-line presence of (Transplant Village).  A group of us have made a huge difference.

Our Transplant Village board have given their time and talents selfishly. We formed a buddy program where incoming patients can team up with one of our board members that are post-transplant.  We have a Patient Assistance Fund – some money set aside to help those patients with special needs. In April we held a sold out event of 500 transplant patients and family members  where we celebrated 50 years of transplant at Northwestern We have initiated and seeded a $5.0 Mil endowment and last summer held the 1st Annual Chicago Sharkfest Swim. And we’ve raised significant funds for transplant research at Northwestern.  We have $1.5 Mil remaining to a $5.0 Mil goal! All the money we have raised goes to further transplant medical research at Northwestern. As a group, we are fulfilling our desire to give back by helping those patients waiting for an organ.

It has been a wonderful year and I wish you the very best for 2015….

Dan Dickinson

Visit our Transplant Village website at http://www.transplantvillage.org !!

04
Jan
14

Transplant Village Grows !!


In the beginning this blog was all about me and my impending liver transplant.  On March 1st it will be THREE YEARS since my transplant.  For me it is like it never happened.  I am  flying my airplane, I ski and travel.  But life is a journey and its no longer about me…

Now the blog is all about others, the journey about Transplant Advisory Board and Transplant Village which I am honored to Chair. It has been great fun being part of building something from scratch that has never been done before. Now it’s all about the future of transplant medicine and helping the next guy coming down the line.

We held a soft kick off in November with an “open” meeting of the Transplant Advisory Council. All Northwestern transplanted patients (around 4500) were invited and we had no idea how people would respond. We received RSVPs for around 160 and nearly 250 attended! In all, nearly 400 people responded positively to the invitation to both attend the meeting as well as receive information about future activities. We are thrilled at the response!

Below are some videos from the meeting.  Immediately below is my introduction of Dr. Abecassis and an update on our activity.  In the same video is Dr. Abecassis’s update on the activities and future of Transplant Center and a high level over view.

Next are a couple of videos from transplant patients — those that have received the life saving gift and are leading a normal life.

The big news is we have another “All Village” event in March and our April Gala where we are expecting over 500 folks.  Stay tuned to our website at www.transplantvillage.org !!

 


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!