Archive for the 'y90' 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 !!

26
Oct
13

Update from Dan


I am now 6 months shy of my 3rd anniversary of my liver transplant. They say one day I might die, but it isn’t going to be because of my liver! I have no restrictions to my daily activities. I ski, fly my aircraft and do everything I love to do. Life is good.

My medication consists of 4mg of Prograf daily and my 88mg baby aspirin. That’s it. Nada. Nothing for cholesterol, blood pressure or other ailments. Nothing in my blood work is the least bit out of balance. My labs are drawn monthly and on occasion the liver test is sent back for retesting. The liver numbers are so low (low is good) they suspect a lab error! ALT/AST are both around 10-12.

Dan and Nancy this summer in Canada

Dan and Nancy this summer in Canada

The 4mg Prograf dosage is the anti-rejection component and maintains a TAC blood level of around five. This is very low dosage/TAC level compared to most transplant recipients. My low dosage is the result of a study to wean patients from the Prograf to the lowest possible level. I was hoping to reduce my dosage to zero but at around 1mg/daily my liver numbers began to escalate which is the indication of rejection. The good news is I now know my personal minimum dosage which is the 4mg –half of what I was taking before I started the study.

In the beginning this blog was all about me. Now the blog is about the next person receiving a transplant at Northwestern. As most of you know we have put together a group to bring the Northwestern transplant community together. Officially we are known as the Transplant Advisory Council. Our online presence is known as Transplant Village. Our website is at: www.transplantvillage.org and our Facebook page is at www.facebook.com/NMTAC. Please take a peak and “like” us on Facebook.

Our mission is clear and our message is targeted. We are alumni of a very special club. And the gratefulness of our alumni has no boundaries. Our job is to support the future of organ transplant at Northwestern and to create a sustainable philanthropic platform. Institutional research is the key to unlocking advances to organ transplantation and Northwestern Medicine is on the leading edge of this effort. But it is only through philanthropic efforts that much of these efforts can be launched.

A great example of the ground-breaking research was illustrated this week with this clip that you may have seen on the news.

http://america.aljazeera.com/watch/shows/live-news/2013/10/kidney-transplantbreakthroughmayrevolutionizelifefororganrecipie.html

This is just one example but it involves stem cell transplant and resetting the immune system in order to eliminate organ rejection. This is amazing stuff!

Our Transplant Advisory Board is 18 months in existence, but we’ve made some great progress. On my previous post I have attached a copy of my “friends” letter which I recently sent out to many in the community which outlines our successes.

06
Nov
10

News We Did Not Expect….


This is been one of the most amazing weeks of my life. We knew this would be a journey, that there would be twisting turns, but we did not expect the events of this past week.

In our last chapter of As the Liver Turns the saga continued….

We were frustrated with the short supply of livers in the Midwest. It was our desire to get the transplant completed and behind us. About three months ago I was number one on the Chicago liver list.  On Labor Day they thought they found a liver. I was prepped for surgery but it was a false alarm. Simply stated, the donor liver did not pass quality control. (flow check issue).  Since then I had been called in for yet another false alarm. Then,over a 60 day timeframe I dropped from number one on the transplant list down to seven. So, about three weeks ago in frustration I contacted some other liver centers in the Midwest so I could be  “dual listed”. That is, I would continue on the list in Chicago but retain positioning on another list at a transplant at another Center of Excellence. I was determined to get the transplant behind us!

I talked to several centers, and found most were experiencing a shortage for the year. It is supply and demand in its purest form. Cleveland Clinic was the exception. I have used the CCF for a executive physical in the past. Obviously, it is a worldwide renowned institution as is Northwestern.  Cleveland had a very short list so we made arrangements to be at the clinic early Monday morning. We had planned a 3:30 PM departure on Sunday with Nancy and Laurie.

BUT WAIT !

That very same day–Sunday, November 1–we received a call from Northwestern that they had a liver for me. It was a surprising call for us because we thought I was number seven on the list. But over the week for whatever reasons I had moved up on the list. In this business nothing is predictable. So, by 7 AM Sunday we were at Northwestern and prepped for surgery for the third time. By noon we found out that the donor liver again did not pass the quality check so at noon they sent us home. By 4 PM we were in the air for our scheduled appointment in Cleveland Monday morning….

While waiting for a liver I have been on a 90 day scan schedule. That is, every 90 days I would receive a CT or MRI scan to see if any tumors reappeared. My 90 day scan was due, so it was completed at Cleveland Monday morning. The results were as expected, and everything was clear. Our meeting that followed with the liver team blew us away. The chief at the liver Center said “I am going to tell you something you are not expecting to hear”. Our jaws dropped in unison….

The liver team at CCF did not recommend a transplant.

CCF went on to explain that had I come to Cleveland Clinic for the initial diagnosis, they would have perfomed the same protocol as Northwestern. The only difference being that I would’ve already had a brand-new (actually slightly used) liver installed and I would have been on my way months ago. As in Chicago I would have received the intra-arterial administration of Yttrium-90 TheraSphere treatment. (They said my  results of this treatment where in the upper 5% of effectiveness) For whatever reasons I was on the waitlist for an abnormally long amount of time. But after 12 months they looked at the situation from anew giving their interpretation of the painted picture. On Friday the liver gods convened their board meeting, discussed my case, and came out recommending that I should not consider a transplant anytime soon. My blood work is very good, my liver profiles are only slightly elevated, I have a normally functioning liver and I do not have any other health problems. So, in their opinion there is no reason to transplant. One Doc went as far to say that I should just pretend that I never had a tumor, although I think that is a rather liberal opinion.

Bottom line is that it could come back in two years, five years, or not at all. But I am on a 90 day scan schedule we can catch it quickly and deal with it. It’s not like I’m going to wake up one morning and suddenly have a liver tumor. They cannot conceive a situation where if I needed a liver that I could not obtain one.  My concern is criteria for transplant could change leaving me out in the cold. But, who knows what the protocol will be with medical advancements over the years to come. Conceivably it is a bullet I could dodge indefinitely, but only the big guy upstairs knows for sure.

Like any industry or discipline, the renowned liver docs have a close relationship with each other around the country. I told the chief in Cleveland I wanted to lock their team in a room with the Chicago guys and for them to send white smoke out under the door when they picked the new Pope and came to a consensus on my case. It would be nice if and Cleveland and Chicago were in total agreement . I will push for consensus and see what disagreements present themselves in the debate. Then we can discuss and debate the disagreements, if any. While I expect consensus it is not certain . Whether they agree or not, Cleveland makes more sense to me and as the course I will follow.

It is human nature whether you are talking business strategy, a commitment to a political direction, or a country’s position at a time of war. Leaders commit to a strategy and direction and it is sometimes difficult to stop to and reassess or re-examine the decision tree based on new information and the value of time. There are infinite views of any picture. Personally, I am guilty of that, sometimes we don’t watch, look and listen before we cross the railroad tracks. And I am the one that usually ask the most questions! (He who has the most questions is always in control of the dialogue) Professional discussion and discourse is a very good thing and a most healthy environment. Discussion of the discourse will drive consensus.  And if there isn’t a complete consensus the differences are fully understood in a professional setting. No single person holds the patent on ideas. And when you get a lot of smart people in a room the group can usually arrive at the best solution to any problem unless groupthink prevails. Rarely is there a right and wrong, black or white, and you’ve got to look at the shades of differences.

I am a firm believer that things happen for a reason.  Our life has a plan. Sometimes I am disappointed at the outcome of the events but rarely do I find myself upset. There is a reason, but sometimes it just doesn’t jump out at us. Now is the time for us to examine the “why” and do something about it. My friends, our church, My business partners and associates and our community at St. Norbert College have been at our families side every step of the way. So if there is a reason for all of this it is time for self-examination and our interpretation as to why this is in God’s plan. There is a reason why I went from being on a gurney with an IV ready for surgery to — “Stop the process! The red phone is ringing and it’s the Governor!”

So, I am removing the ankle bracelet and no longer find myself tethered. I have been asked how much pressure I have been under. My answer is that I really do not know but give me a couple of weeks to decompress and we can discuss that differential. Over Thanksgiving we as a family will all go someplace together and celebrate. Life is a gift and we should all treat it that way.

But for me it doesn’t stop there. There isn’t a whole lot of data out there in cases such as mine. I seem to be “special”. I believe there has been some research in the EU and I intend to find it. I’ve got someone who is a medical researcher to search. And then next week I will drive for consensus between Cleveland and Chicago.

Yes, the saga will continue as it does in the life of every individual. None of us know where it takes us but we all realize it is part of a bigger plan. And there is always another chapter in…

As the Liver Turns

09
Sep
10

The night that wasn’t


Well, it was the night that wasn’t ….

We learned a lot one our dry run.  First, there is no pizza place open in Chicago at 4:30 AM but the Cinnabon guys are taking their freshly baked goods out of the oven, which at 4:30 AM is better for you.

I understand there is always a 10-20% chance that the liver isn’t “good enough”, and in my case apparently the blood vessels on the donor organ were not as pliable as they like — so it went back into the organ bank for distribution.  Once NMH had a patient that had eight dry runs!  I bet he was very good at preparation.

The process is very impressive.  They’ve got their protocols and these guys know what they are doing.  From the time I walked into the door it was a finely tuned process – like an orchestra.  Nothing is left for error.  The nurses are very sharp and know their stuff.  It reminds of a checklist for a Citation X.

SO- we walked home and un-did the family process.  We got Dean and Vickie to ORD in time to greet the tropical storm that hit San Antonio, Ann and Will got back to their gig, Vanessa drove back  to St. Norbert for classes, and Rob and Laurie got to the passport agency by the time it opened. (Plug for Swift Passport Services – www.swiftpassportservices.com)

To memorialize our evening we shot a picture of the participants.  From the left to right – Rob, Vanessa, Laurie, Dan, Nancy, Vickie, Dean, and my nurse.  Annie and Will had not arrived when the photo was shot.

As I said before, we were blessed and very grateful to have our friends Dean and Vickie with us.  Dean has his own version of events in his blog at http://deanrush.com/ .  I haven’t read his book yet as the release date is next week, but I ordered a bunch of copies to give away.  He has been an inspiration to many.

I have received notes and E-Mails from a lot of folks.  in the first  hour I think we heard from  all  continents.  I thank you all.  I have been asked  several times – “what can I do to help?” — and my answer is —  please make sure you are an organ donor.  In a earlier blog I told you about a woman with three kids that had only a couple of weeks to live.  That was a month ago and she got a liver and now is back home with her family.  Every day counts…

As for me, I have been busy at the office and plan on being normal. I’ll  just wait for the next call — the fork in the road — and I’ll take it.

31
May
10

Liver Transplant Receipient Receives Olympic Medal


Wow —

http://www.chrisklug.com/news.php?news_id=121

25
May
10

Closer but no banana (yet)


Today was my 90 day visit to NMH and all is well. Every 90 days the transplant team updates the MRI’s and CT Scans as their normal course of business. I have moved up the list. Last week the team transplanted someone in my blood group. So, now I am #6 for the city and #2 at NMH. On June 24th I get ONE extra point (not 3 as I thought) on my MELD score taking me to a 26. That jumps me in line to #2 in the city assuming no one jumps the queue

The office pool has also been updated. Dr. Kulich put her money on July 15th and Katie the coordinator moved to June 3rd. I side more with Katie because she is closer to the list. Nancy and I think June 7th which is my 60th birthday and Laurie placed her bet on the 4th of July weekend. We shall see but it looks like a summer where we are floaters and not boaters for the year. Either way we will enjoy the summer and I continue to compartmentalize all of this as a minor inconvenience with a 3 week break I must take with an unknown start date. I do not worry or dwell on it – but I am getting a little impatient. Then I think of those out there that are waiting against the clock….

As for NMH every time I visit I am tremendously impressed with the facility and the team. I’ve often said that you know how a company is run by the vibes from the people that are employed. From the bottom up one can quickly learn the culture of the organization just by observing and talking to the folks sweeping the floor. NMH is a group of incredible folks that are mission driven towards excellence. This is area where many companies strive for but very few succeed. The transplant team are the best of the best and frightening smart and dedicated. And the best part of all of that is we are two blocks away. I can see the clinic from our Condo with my high power super stabilized binocular scope!

Interestingly, I found out they are contemplating a change in how the master MELD list is kept. Remember when I said the list seemed skewed unfairly towards my situation? I believe the medical profession is figuring that in my situation things are treatable. With one Y90 treatment my small lesion was eliminated. I am in great health while there are other folks waiting for livers that are very sick. Any change in the system will not affect my situation but I recognize the wisdom in their future decision making process.

So slowly we approach to the desired result

08
May
10

Still Waiting, and waiting, and waiting….


The news has not changed !

My liver coordinator at NMH placed he office pool bet on April 30th. So, I called her the next day to see if she wanted to change her bet. She put replaced her money on May 10th. My coordinator is a very dear person, but I’ve found someone who is definitely is worse at gambling than me. We shall see. I remain, as of last Monday, #9 for the City of Chicago. The list hasn’t moved, but that is how the system works. So, I am ready for my two week “vacation” I just don’t know when it will start…

So, in the meantime, I’ve been very busy. Last week we had our strategic planning meetings at the office and next week our board meetings and graduation at the college. My plans have not changed as I wait for “the call”. Bring it on!!

But the best news is about my friend Janell in St. Louis. Janell and I were placed on the list within days of each other. Our situations, age, health are almost identical. Janell got he transplant about a week ago and is doing great. She was out of surgery and walking around that evening. I have talked to her three times this week. She was out of the hospital in about three days and after a week has already been to a restaurant for lunch. Monday she gets her staples removed and hopefully they will send her home to KY. Amazing stuff !!

Stay tuned !