Posts Tagged ‘Liver

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 !!

21
Jan
12

Two Liver Stories


 I don’t think a week passes without being in contact with a “liver friend”.  I am in contact with some through friends and family.  At times the liver clinic will ask that I speak to someone while some come to me through this blog.  It’s a great alumni group – and we all fall in two groups.  Before and after.

Here are two stories…. 

A BEFORE STORY 

My “before” story goes to Paul.  Paul is in the Chicago area and about my age.  He is a fellow pilot, and fly’s the same machine I fly.  He is a retired school superintendent, not retired by choice but because of liver disease.  Paul has a rare liver disease called PSC.  Paul needs a new liver.  

Cadaver livers are distributed through UNOS from donors according to very strict guidelines.  Each potential recipient receives a score.  It is called a MELD score.  The higher the score, the better chance you have to get transplanted.  It’s all supply and demand.  The demand is greater than the supply. Through what I feel is a fluke in the system, my score started out very high and I wasn’t sick.  Not so with PSC.  Paul can be sick with no chance of a liver. 

This leaves Paul with the only probable option of live donor liver transplantation (LDLT) This is a procedure in which a living person donates a portion of his or her liver to another. The liver is the only organ in your body that regenerates.  A donor can donate part of their liver and it grows back in a matter of a few short weeks. When it comes to liver transplants the only “must haves” are size and blood type.  Of course, there are other considerations too, but not near as many as say a kidney transplant.

Paul’s story is compelling. Four people have stepped forward as potential donors, some of them strangers, to donate part of their liver.  So far all of been rejected for technical reasons.  Paul’s daughter has started a Facebook page where his story resides.  It is at http://www.facebook.com/FindPaulsLiver?v=info His daughter’s E-Mail is findpaulaliver@gmail.com.  Pass the word….

 

AN AFTER STORY

This belongs to Kortni.  Kortni is doing fine today after her transplant but she had a hell of a ride to get there.  Kortni had 2 transplants in 4 days.

Kortni is a young and vivacious young woman.  She had liver disease and her sister decided to donate part of her liver.  99% of the time this is successful.  Less than 1% of the time it doesn’t work.  While the surgery went well, the new liver did not start.  Like a computer that stalls with the boot up, Kortni’s new liver stalled out.  In aviation parlay she was out of altitude, airspeed and ideas all at the same time.

In these events, all stops are pulled out.  It’s a real emergency and you are automatically elevated to Status 1 – that means you get the next liver that comes along and jump to # 1 in the line. She got another liver and now is doing well.  Her transplant ooccurred after mine, so I was able to follow her progess through her blog and could relate to her daily progress.

Kortni’s story is compelling.  And you can read it at:  http://kkchoppedliver.wordpress.com/surgery-pictures/  

31
Oct
09

Update and some more early detection stories……


Things are going very well on the health front.  Over the past week I have had two more of what I believe are the “final” tests.

First, last Monday was a colonoscopy.  While this is another opportunity for the Lala drugs, the preparation for this procedure does not justify the opportunity.  I will not go into detail, but look it up on the internet. YUK.  Nancy seems to have a special relationship with this Doc so he let her into the procedure room to watch.  I was told during the procedure I was reciting the Bill of Rights.  I must have memorized this sometime in my lifetime or maybe  I watch too much of Fox News Channel.  Now that I am awake, I couldn’t repeat the Bill of Rights to save my life.  Anyway, the upshot of the whole procedure was I am good to go and my next one is scheduled in 5 years and the Bill of Rights are still a part of our history.

Secondly, on Friday I had the Angiogram (Heart).  I had a virtual angiogram last summer and it showed some minor blockage.  But the real angiogram is the gold standard. The test revealed  no blockages anywhere.  Must be my genes because my cholesterol has always been low and with the right ratios.  They said it was fairly unusual to be as good as it is at my age.  Again, I had the Lala drugs but apparently not enough because the nurse came out to see Nancy in the middle of the procedure laughing and  said ” I really enjoy my job on days like this with guys like your husband”.  I am not sure what I said, but Nancy gave the nurse a sock to stick in my mouth.

So, the upshot is after all of these tests — and there has been a lot of them — is that there is nothing wrong with me except for that little lesion on the liver.  I keep thinking how blessed I am and that it has been certified there is nothing else lurking around in my body.

As for the Y90 Therasphere — I am not sure if there were ever any side effects or not.  There were a couple of days where I felt a little washed out, but it is unclear if this was the Therasphere or not.  If yes, it was still a very easy procedure.  Next Saturday I have another scan to see if the lesion has grown and the effects the Y90.  It is unclear to me if a MRI scan can indicate if the lesion has been killed or not.  But the MRI will tell us if there has been any growth.  My last scan prior to the Y90  had not grown. The biology of the tumor has always been a very slow growth.  So, I would suspect with the next scan it will either be the same or better.  No matter what, The tumor would have to have a lot of growth in order for me to be kicked off the transplant list.  It is not on my list of worries.

This last week I have talked to several folks regarding transplants —

One Lady I met through my college Alumni Association.  She contracted Hep C many years ago in a hospital visit before they knew about Hep C.  She was having  liver failure and found out when her husband made her visit` the Doc.  She had acute cirrhosis from the Hep C and almost doubled her weight because of water retention.  She received a liver within 3 months.  That was 3 years ago and today she is fine.  She went through the same process at Northwestern with the very same liver doc as me.

Another lady is a nurse.  In fact, Audrey is very smart and articulate nurse.  She told me the story about her father who has the same problem as I do — except he found out 3 years later in the process than me. Apparently, he had a scan at a hospital and they “missed” the HCC on his liver. My prayers are with you, Audrey.  This is yet another example of sticking with the experts.  An MRI is only as good as the guy that reads it.  At Northwestern and other Centers of Excellence they have those kinds of experts.  These are very smart docs in an extremely narrow field of medicine. That’s all they do every day and they are the best.  If I was one of those docs I would be very board with my job — being “the” expert in a very small field doesn’t float my boat, but luckily there are guys out there that enjoy it.  Anyway, Audrey’s  dad ended up on a Y90 program since he didn’t qualify for a transplant.  Initially, his life expectancy was measured in months.  But after the Y90 he is still going strong 4 years and counting.  The more I hear about this Y90 the more amazing it seems to be.

And then there is my close friend from South Africa.  Brian and I have been great mates for 30+ years and we watched our kids gown up together.  South Africa has very good medical care, in fact several years ago we baby sat another close American friend that needed a quadruple bypass while visiting in South Africa.  I believe the total bill was $20,000 and the procedure took place in a hospital that Christian Barnard frequented. Anyway, Brian’s daughter decided she wanted to be a Lawyer.  She was a year or two in school and decided it was not for her and changed to medicine.  Good thing she did, because it saved her dad’s life.

The daughter, Dr. Jenny, now runs the trauma center in Sandton in the  suburbs of J-burg.  I’ve been there myself. The Life Fourways Hospital  marvels anything here in the states. It  is state of the art, with a bunch of young, dedicated, and very smart docs.  Last summer Brian had some muscle pains and Jenny convinced him to come down to the clinic for a cup of coffee. She checked him out and he fine, but for some unknown reason she decided to give Brian an MRI.  She found a kidney with cancer! Purely this discovery was by accident.  The kidney was removed and he is cancer free.  It was limited to his one kidney.  SO — we are all very happy Jenny decided on medicine instead of law.  Early detection, for whatever reason is a good thing.  This is just another example.

This week we also had a little medical insurance scare.  Our company insurance was up for renewal on November 1st.  Our current insurance carrier increased our rates by about 350%!  I suppose from a business perspective I wouldn’t want me as a risk for my 2010 transplant.

We are in a PEO — That’s the acronym for Professional Employment Organization. Instead of employing people directly, The company and the PEO jointly become legal employers. The company retains all the functions an employer in terms of hiring employees, setting wages, etc. However the PEO handles everything else including payroll, benefits administration, workers’ compensation, health insurance, and retirement accounts. So the theory goes, all we have to do is write lump sum check  to the PEO covering all of our  payroll expenses and an additional fee for the PEO itself, including the health insurance where we are treated with the benefit of being recognized as one “super group”  along with the other small businesses like ours.

Originally, this was a pretty good deal.  As a small company it worked well and we enjoyed a high trust relationship with these folks.  But the PEO got sold and I believe is being  sold again.  We are loyal with our relationships, but sometimes situations can change.  And while we are loyal, we can sometimes can be  loyal to a fault. The benefits to the “super group” seem to have disappeared.  Each of our companies must now stand on their own.  Lucky for us, we scrambled to break out the companies and employees and got everything in the right box leaving a core of four as the “problem”

The upshot is we got covered at the very last minute.  But the PEO really let us down. I found out purely by accident that had we renewed with our original carrier with the 350% increase, that the transplant was capped at $50,000!  The PEO failed to tell us that and as a result we may be looking at other options in the future.  Notwithstanding these issues, it is still better than dealing with a government bureaucracy!

17
Oct
09

My Y90 experience (con’t)


It has now been 9 days since the Y90 treatment.  I was told that after a few days I could have some of the side effects which is fatigue and flu like symptoms.  I have moved at my normal speed (fast)  and I have experienced none of the possible side effects. My understanding is most folks have some side effects so I am pleased I have none.

Next week it seems my only medical appointments are with the infectious disease doc.  With all the testing they have done they said sometime in my life I has exposure to TB. Having spent a lot of time in Sub-sahara Africa over the last 30 years it does not surprise me, but I am certain I must have had a live TB vaccination when I was in grade school.  I have had a ton of travel shots over the years plus whatever I received in the military.

This weekend I heard from Suzanne in Texas.  She formed a support site for Y90 users.  It is at:

http://www.beatlivertumors.org

Suzanne has an amazing story.  She had colon cancer and was at ‘deaths door” when she found out about Y90.  Suzanne took the intuitive and found out about the Y90 by luck as she says but I am sure it was because she took the initiative. And it because of it she got her liver tumors under control which allowed her to continue the rest of her treatment.  Now Suzanne works with others and matches them up in a support group.  Another Amazing Y90 story from an amazing person.

09
Oct
09

A Y90 TheraSpere Story ……


The quest for knowledge never ends.   Knowledge is power and the well informed consumer is a smart consumer.  Part of research is knowing about the  latest and greatest if you want to stay on the “leading edge”.  I placed  “Y90 Therapheres” into a Google Alert so I get updated  daily. Yesterday I received an interesting article.  it is at:

http://www.thevillagesdailysun.com/articles/2009/10/06/villages/villages02.txt

And I researched her at the Y90  website at:

http://www.y90support.org/blt/Nancysstory.html

 

I made E-Mail contact with Nancy Hamm, the woman mentioned in the article. (Nancy, can’t wait to chat)  Nancy appeared on the CBS show “The Doctors” in an episode that aired Sept. 30. She was there to tell her story as a liver cancer survivor, and how a special tumor-directed treatment helped her fight the disease.

According to the article, while on a vacation in 2006 she experienced bloating and went to a doctor. Tests didn’t find the cause then, but after she and her husband returned home,  Nancy began experiencing severe abdominal pain. Her husband took her to the hospital and the doctors had found a tumor(s) and primary liver cancer.  Nancy had a liver resection  but the cancer came back.  Her quest for knowledge took her to the Internet where she learned about a new procedure — Y90 TheraSpheres  At the time it apprently  was not standard treatment. interestingly, her Doc didn’t find the Y90  — she found it. And it shrank the tumors to the point where she quailed for a liver transplant.  In less than 3 weeks she had a new liver, and of course, is now cancer free.

Today Nancy has become an advocate helping other people.  So what are the lessons learned and what are the take-aways?

First, Nancy wouldn’t be alive today if she didn’t take a proactive position  about her own health. Her Doc didn’t find what eventually led to her cure.  She did.

Secondly, medicine, business and life is filled with experts with  specific knowledge in a very narrow field.  Miss Kitty, owner of the Longbranch Saloon on Gunsmoke, needed only Doc Adams to take care of  her.  Doc Adams knew everything in those days because there wasn’t that much to know. The challenge today is to find the  person that is the expert  you need. Today it is easier than ever though the Internet.  As you do your research, be aggressive, collect the information and make phone calls.  God gave us two ears and one mouth, and ten fingers. So start dialing, ask questions, and listen twice as much as you talk.  This is something YOU must do. You can’t expect your internist or GP to do this for you.  The system simply doesn’t work that way.  If you are persistent you will find the best.

So what do you do when you find the best?

There is an interesting dynamic in the field of medicine as it relates to insurance companies.  Assuming you have insurance, the system actually pays for the best.  Your insurance company  doesn’t pay “extra”  because you go to the best Doctor or facility.  The not-so-good docs and facilities get paid the  same rate  by the insurance companies. My guess is that if you receive  a gift certificate to a resturrant of your choice you will not choose Burger King.  In fact, I bet you would drive a good distance  to dine at really fine French resturant. So, my question to you — Why wouldn’t you so the same with your health?

01
Oct
09

Today’s prep for the Y90 TheraSphere Treatment


The Y90 treatment is delivered though the vein exactly like an angiogram.  Today they did a “test run” on me.  The docs need to “map” the road thought the veins in order to get to the tumor so they can inject the beads.  The process is almost exactly like an angiogram for a heart patient.  They go through the same vein in the groin, but instead of going to the heart they go to the liver.  The “test run” is done for several reason.  They have to make sure the path to the tumor is clear with no road blocks, and the beads don’t find other roads letting the beads go to the lungs or Stomach. They blocked off a couple of roads to the tummy with little springs while they were in there. Besides, once they bring in the Y90 from Canada, the isotope needs to be degraded  before they can use it.  It appears there is a specific time window for the Y90 to be used so I had better not be late.

I arrived at Northwestern at 8:30 this morning.  Their typical efficiency prevailed.  The sedative is the same they use for colonoscopies and EGD’s – administered through an IV. I especially like the part where they actually  give you the drugs.  Good stuff, but they don’t allow doggy bags.  I tried to count backwards but didn’t get too far. The procedure is done in the interventional radiation department and the docs there are some of the best in the country.  Dr. Lewandowsky did my procedure.  Younger guy and very good at what he does.  The whole procedure was over by 1:00 PM.  He said it went very well, a 10 on a 10 scale.  In the next week or so they will do the actual procedure with the Y90, and now that everything is mapped it should go very quickly.  Speaking seriously, this was easier than going to the dentist.  At least for this proceedure it was a cake walk.  I was back home by 3PM busy doing office work.

13
Sep
09

So Why a Blog on Dan’s liver ???


This is my story of my impending liver transplant. I have never written a blog or chronicled. But I have decided to do this for several reasons.

I am one of the blessed individuals. God has his plan.  My situation is both fixable and curable.  Curable isn’t my word, it is the Docs word.  There is no reason for me to live anything  other than a complete and normal life. The only caveat to that is that I need a replacement liver.

We are also lucky because of the medical facilities nearby.  We are a 3 block walk from Northwestern Medical Facility. NW is a world class  transplant organization and they’ve transplanted over 1,000 livers.  They also transplant hearts, kidneys, and lungs.

So why the blog?

First, when I was told I would be on a transplant list my first reaction was that something good had to come out of it to help other people. There is a huge responsibility here and  we all must  rise to those responsibilities. There are reasons for everything and this is no different.  Some guy (or girl) is coming up behind me and he needs some help too. The web is a great resource to learn, research, and disseminate information to others. Even so, there isn’t  a lot available with first person personal stories.

As a family, we’ve been down this road before.  My wife is probably one of the most physically active people I know.  Her only flaw (yes she had  only one) was her back.  She was almost immobile because of a L5/S1 disk.  We researched for a year and decided to go with a surgeon at the Texas Back Institute and replace the disk with a Charite’ replacement disk made from titanium and plastic.  At the time it wasn’t FDA approved.  The “installation” is through the belly and it is major surgery.  Together we felt the responsibility  to share the story.  We did and we allowed the NBC Today Show to film the entire surgery.  20 hours (yes I said hours) after we walked in to the hospital in Plano, she walked out pain free.  And that included the sit-down camera interview an hour before the surgery began. Over the years we’ve counseled many folks with the same problem. It helps us probably more than it helps them.

Secondly, this is a way for my friends and family to find out the latest information about me personally. it is important people understand what this IS and what it IS NOT.  Without doubt things will get fast and furious at some point in the next few months, so it is a way for everyone to be posted with the latest and greatest. I am sure there are other benefits as well that will manifest during the process.   So, welcome to the journey.  Fasten your seatbelt because here we go….