Archive for October, 2009

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!

18
Oct
09

A Transplant Story


I have spent the last 3 days with my St. Norbert College family in the Green Bay area. It is my other home.  I have been fortunate to have been a  Trustee at SNC for about 12  years . I am blessed to work on stuff that is bigger than all of us with like minded people on the board, college staff, and students.  Daughter Annie is a 1999 graduate and my involvement  become a passion. Now our adopted daughter Vanessa is a sophomore at SNC and it will be a transformational experience for her as it is for most students.

St. Norbert College is  a national recognized 4 year college founded over 100 years ago on the banks of the Fox River in De Pere, WI. by the Norbertine order.  It is a beautiful college campus, but the real differentiator is the is the culture, traditions,  and  the Norbertine ideal of communio which is characterized by mutual esteem, trust, sincerity, faith and responsibility.  It is a very special place with special people and our graduates are a unique  product of the environment.  They act with personal integrity; develop meaningful personal goals; and build relationships based on mutual respect.  Our generation is leaving significant problems for the next generations to solve and these graduates are prepared to tackle them.

I found that my blog is followed by my fellow board members, my Norbertine friends, staff, students, and the advancement folks.  Where else can I get 3 Abbots to pray for me at the same time?  As a family, we  are always there for each other which is easy for Nancy and I because we are better “givers” than “takers”.  But now  we are  on the receiving side of the equation which is new to us.  The support, words of encouragement, and prayers from everyone these last few days is overwhelming. Nancy and I are very fortunate to be part of the family.  All of you are and will continue to be  significant in our lives.

One of these family members put me in contact with a liver transplant recipient in Green Bay.  Nancy and I to talked with her today.  Erin is a news anchor for one of the local TV stations. She is outgoing, smart, and an advocate within the transplant community. She received her transplant 20-years ago. Today she feels perfectly normal and takes only one little pill a day for anti-rejection.  Thanks Erin for taking the time out to talk with us. It was a real learning experience.  It is obvious things have advanced significantly since her transplant.  It is also obvious her  entire experience has been a positive  and it has enhanced her ability to help others.  Here is some information on Erin which illustrates the impact she has had on the community.

http://www.uwhealth.org/thegiftoflifeondemanderindavisson/video/1193

http://restoringhope.blogspot.com/2008/04/erin-davisson-visits-transplant-house.html

Thanks Erin for all you have done…..

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?

09
Oct
09

My Y90 Therasphere treatment today …..


Today was the day for the Y90 treatment,  I had been sceduled for Thursday, but they changed it today.  Last week I reported on the mapping  proceedure for the Y90 which was a piece of cake.  This week they did the real deal and so far it is easier than last weeks procedure.

I arrived at Northwestern at 6:30 AM.  After signing papers and getting on the gurney it was 7:30 AM. I was in the procedure room by 8 AM after meeting with Dr. Lewandowski who performed the proceedure and today performed two others exactly like mine .  By 8:10 they gave the Versed and I was off to never never land.  MMMMgood.  An hour later I woke up. They said everything went very well.  They said I was snoring but I don’t believe them.  I was home by 1PM and had a sandwich for lunch, then talked to a few people on the phone.  Later in the afternoon  I checked on my caller ID to see who called.

The support team in the interventional radiation department are very switched on folks.  They know their stuff, intelligent and efficient.  They work well as a team.   Special thanks to Lorrie. You are a real star and a super nurse.  Anthony, you are perfect at putting the patient at ease with your positive attitude. It is obvious all of you love your job.

So, the Y90 treatment I received should be a one shot deal.  In three weeks or so I get another MRI and the small tumor should be dead, although it take some time to disappear if that is what it is going to do.  But by that time I should have a new liver. On Christmas eve I get my three bonus points so I would imagine it is any time after that.

We’ll see if I have any side effect from the Y90.  They say maybe nothing or perhaps some flu like symptoms where I run out of gas in the afternoon.

There is good information on Y90 on their website.  It is interesting that very few facilities that are approved for this procedure which is now considered standard care by the insurance companies.  In Chicago only Northwestern + one other downstate which is why it is so important that you pick the the right medical facility out of the box. Info at:

http://www.mdsnordion.com/therasphere/

More good news.

I received a note from my FAA medical agent in OKC.  For those of you who fly, I can highly recommend Pilot Medical Solutions (www.leftseat.com) David Hale owns the company and it has been around for some years.  Carrie Magerus has been handling my case.  Several of my pilot friends use PMS for their medical issues.  Simple things such as eye surgery and medication issues are easily handled by them. They do heart transplant issues too which are now FAA approved.  Carrie and the associates are all RN’s.  Very professional and the perfect interface between you and the FAA.  (If you enjoy working with the Post Office, VA, or the Passport agency then you don’t need them)  Anyway, I received a note from Carrie today and she said “at this point I see nothing that would not allow you to received your medical after the transplant”.  Thanks Carrie !

The other good news — The ski areas have opened up, so before I get too high on the list Daughter Laurie and I will be on the slopes!

More

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.

01
Oct
09

More on the Y90 TheraSphere Treatment


The Y90 TheraSphere is a treatment available for HCC.  In my case, they will use this treatment to Kill the tumor prior to transplant.  I am lucky, because my tumor is only 2.7 cm.  It would have to double in size in order for me not to qualify for a transplant,  It took 3 years to get to the size it is, so the chances of it getting past 5 cm ( the size at which i would lose eligibility for a transplant) in the next few months are very slim.  While that can change, the historical biology of the tumor makes it unlikely to happen.

As a prevention, I have agreed to the Y90 treatment, which in fact is protocol.

TheraSphere is actually a  medical device containing yttrium-90 (Y-90), a radioactive material that has been used previously in the treatment of liver tumors. When Y-90 is incorporated into very tiny glass beads (TheraSphere), it can be injected to the liver through blood vessels supplying the liver. This allows a large dose of radiation to be delivered directly to the tumor.  This delivery method has less risk of toxic effects from radiation to other parts of the body or to healthy liver tissue.  In otherwords, it cooks the tumor from the inside out instead of the outside in.  The radiation is limited to a few Cm of the tumor.  For me, there should be very little in the way of side effects. The radiation from TheraSphere  becomes minimally active within 7 days after treatment due to physical decay. The glass beads remain in the body, but since they are microscopic,  do not cause any health problems.