Posts Tagged ‘Y-90

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 !!

12
Nov
09

Another Amazing Y90 Story (this time its me)


It has been 6 weeks since I got my Y90 treatment.  Remember, those are the little glass beads that had radiation in them.  I never did have any symptoms from it.

Last weekend I had the MRI to check the progress of the tumor.  essentially, it is dead.  The scan was done with and without the radioactive contrast.  Prior to the Y90, the tumor showed up on the MRI lit up like  Christmas tree.  Today on the scan, it was a black hole.  Gone —  as in dead tissue.  The Y90 is amazing stuff (better than Clorox!) and this is just another miracle story on the success of the treatment.

SO — what’s next?

Wait and more wait.  No more tests as far as I know.  They don’t even want to do another scan for 90 days.  As far as I am aware I have NOT had any symptoms of the disease or the cure.  But the scary stuff is if I hadn’t caught it when we did I wouldn’t have any symptoms for a few years.   It’s a lot like a jet engine — lots can be wrong with the engine and it can be a mess inside with no symptoms of failure.  Our bodies are much the same way. So get checked out early and often! Do your compressor washes, your boroscopes, and your trend monitoring on both YOU and your jet engine!  Find out about something early and it is fixable. remember, catastrophic failures are rare….

Now with all the tests I have had I have a VERY long list of all the things that are right with me (its amazing what a 6 week physical can find or not find — and only one little thing wrong with me (the now dead lesion).  But they still want to perform the transplant ….

The deal is — even with it essentially gone, the protocol is still to replace the liver.  SO — I am on the MELD list now at 22.  On December 24th I get my three bonus points and I am a MELD-25.  I can expect a liver between 25 and 28.  I get another 3 bonus points on March 24th which takes me to a MELD 28.  Bottom line is there is a 50/50 chance of a liver between December 24 and March 24.  If it doesn’t happen by March 24 it will happen very soon thereafter.

I am truly blessed.  Speed bumps in life.  All curable and fixable.

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.

25
Sep
09

Liver Transplant Orientation


This past Thursday we attended Northwestern Hospital’s orientation to Liver transplants.  Nancy, Annie, Laurie and I walked over to  the hospital early in the morning, vise grips on large cups of coffee.  Sons-in-law Rob and Will sold passports and watched Cecilia, respectively.

We learned a  lot at the meeting. We first met as a group with other transplant candidates. It was shocking because we saw same very sick people. Doing my research, I found out that many transplant patients feel better immediately after surgery then they did before they went in.   One has to be awfully sick in order to come out feeling better. Some of these folks may die before getting a liver.  The demand for livers is greater than the supply.  Northwestern draws from Illinois and NW Indiana. When a liver becomes available, they fly a team of docs to see it.  A very detailed questionnaire is given to the family and tests are done on the donor liver.  Detailed tests are done on the liver to assure it is a healthy liver.  Unlike other organs, the only things that need to match are blood type and size.  Tissue , DNA, etc does not need to be matched as it is for a kidney or lung. (I have asked for a Republican liver and my request was denied.)  In Illinois, it is a law that the family of a potential donor is asked to donate their loved one’s organs.  But the majority say NO.  This is difficult for me to comprehend as I have always been a donor by marking my drivers license.  (This opens up an entire new subject.) It is not unusual for someone to donate their organs and save many lives in the process and also giving sight to a blind person. Why someone would not want to extend their legacy in that manner is beyond me.

We learned the details of how the “MELD” score works.  MELD is an acronym for “Model for End-Stage Liver Disease.”  Typically MELD scores are determined by actual liver function,  something that is not troublesome for me.  But because I have liver cancer and not liver failure my score rises differently. After 90 days I get added bonus points.  Basically, when I go in for my transplant I will be a very healthy guy (healthier than now since I will step up my workouts) The cancer, at transplant,  will likely still be asymptomatic.  My MELD Score is 22 out of a possible 40, the higher numbers being closer to transplant.  Considering my score and blood type, the assumption is that I will be having a transplant in 4 months at the earliest, 12 months at the latest.

During the meeting we met with all of the available docs, the social worker, financial folks, the nurse staff, etc.  These folks are unbelievable.  Being in the business world, I have the opportunity to walk into all kinds of businesses.  One quickly learns the ones that are run right and those that are not.  The NW transplant team is a unbeleivable team.  The chief, who I met, is a no BS type guy.  He started the division several years ago and not the type to tolerate a non team or a “B” player.  This is his baby.  He personally approves all transplanted livers, and has approved every single liver since the inception of the transplant program. Interestingly, he also has his MBA which I think is worth and extra gold star.

Until then the tumor growth will be controlled by one main drug –Y90.  Y90 is put into the tumor via artery–the microscopic glass beads are coated with the treatment drug which has some radioactivity.  It will be injected directly into the tumor. Most likely it will “kill” the tumor by cutting off the blood supply and cooking the tumor.  They do not expect side effects and this is all out-patient.

To be eligible for a liver transplant I had to undergo lots of other tests–the only one with a problem was the bone scan.  It showed that my knee was degenerating.  Well…I’m 59.  I’d be more surprised if it WASN’T.  the odd thing is that the knee hurts now that I’ve seen the films. They also did PET scans on the skull MRI on the chest, EGD, and a ton of blood work.  fortunately, this all came out fine.  I am on zero medication and everything from cholesterol and liver functions are normal.  I call this my CARFAX report.  The ONLY issue is the small lesion on the liver (oil filter).