Happy re-birthday to me (la la la)

It was one year ago today that I had my transplant. So it’s happy re-birthday to a part of me.

I remember vividly when Katie, my transplant coordinator called me. I was at my office having decided that morning I was tired of waiting for a liver. Being constructive (and impatient) I was filling out my paperwork for my pilot’s medical certificate. Katie called and I put the paperwork in my “hold” file and sent some texts out to Nancy, Laurie, and Annie at 12:49 PM. “I think they found a liver, meet you downtown” I had been prepped for surgery on three other occasions only to find the liver wasn’t a match. This time I knew was different. I collected my stuff and stopped by Ric’s, my favorite hamburger joint. Katie forgot to tell me not to eat and I didn’t want to pass up the opportunity. (Yum) The liver didn’t arrive at Midway Airport until 10:30 that evening (I tracked it on the Internet) and they finally put me under around 1 AM or so. I was glad I had the burger.

March of 2011 was recovery time. It wasn’t a lot of fun. On April 1st I visited the Gift of Hope folks thanking them for all they did, and a few days after that I was in the office. On June 28th we left Port Kenosha on the Nancy D for the Georgian Bay area in Canada and I was back to normal – just like it never happened. By July 10th the FAA gave me back my Pilot Medical Certificate. In January I was skiing Vail. The transplant seems like a long time ago.

Over the past couple of days I’ve sent some E-Mails out to my docs thanking them again and to all those that helped me through the process. The list is long. No matter how healthy and strong one might be it takes family, great docs, and support – especially for the first couple of weeks after surgery.

So today we almost have our philanthropy advisory council put together at Northwestern working together with the Foundation. We have our first meeting in April. We have a wonderful group of very grateful alumni on our council. Our charge is to promote and attract funding for some of the research initiatives at the center. We intend to take these efforts to the next level and establish a process that is built to last. It has amazed me the number of very talented alumni who want to make a difference – making it easier for the next guy coming down the transplant line. And only my imagination limits me to what a group of extremely dedicated and accomplished individuals can accomplish when let loose supporting this worthy cause. This will be great fun to Chair this effort.

This week I had a very interesting meeting with the founder of Living Kidney Donors Network. Harvey Mysel has put together a very unique organization. LKDN’s primary Mission is to educate people who need a kidney transplant about the LIVING donation process and to prepare them to effectively communicate their need to family members and friends. Their website is at www.LKDN.org.

There are striking similarities between kidney and liver transplantation. A donor can be either a LIVE donor OR a deceased donor. A live donor can give up a kidney, leaving one remaining for a normal life. It’s the same with liver. In many cases a LIVE donor can donate up 60% of their liver and it grows back in a matter of a few weeks.

Harvey pointed something out to me and here is where it really becomes interesting….

Harvey did a quick search of the number of Liver Transplants, living and deceased: ++

TOTAL LIVER TRANSPLANTS++
Year	2011	2010	2009	2008	2007
Deceased Donors                                 614		5,614	6,009	6,101	6,070	6,228
Living Donors                                      226		226	282	219	249	266

NOTE: In 2001 there were 526 living liver transplants!!!( I’m sure there’s an explanation for that)

** For 2011 the #’s are complete only thru November.

++ Figures are from UNOS (www.unos.org)

To Wit – Roughly speaking there are average 16,000 people in the USA waiting for a liver transplant. The math is very simple –many die waiting for a liver. It is the law of supply and demand and the demand trumps supply. The number of living donors is a small fraction of the deceased donors. Why is that? And why were there 526 living donor transplants in 2001 and only half of that today?

This raises more questions than it answers. Could the waiting list for livers be reduced or eliminated with more live donors? LKDN has saved countless lives by promoting live donations with kidneys. For every live donation it moves someone else up the list to receive a deceased donation. Could the same metric be applied to the liver? Could this be a game changer? What if the paradigm shifted? Can it be changed?

You might say – “so who will give up a liver or kidney for a stranger?” Well, from what I’ve seen there are plenty of people. A couple of entries down on this blog is the story of my friend Paul. He is two week post-op and doing great. His donor was a Good Samaritan.

Katrina Bramstedt wrote a book about Good Samaritans and the meaning of altruism. Katrina is a transplant ethicist and wrote – The Organ Donor Experience. It is a fascinating read and involves several case studies of good Samaritans making an organ donation. Her web page is at http://www.transplantethics.com/ . The stories are inspirational. But more important they are life changing. The book explains the process for live donation and the factors relating to it.

All of this makes good discussion….

Paul Found a Liver !!

PAUL FOUND A LIVER – Here is a story about selflessness. I posted a few weeks ago about Paul.  Paul lives in the Chicago area, a retired superintendent of schools.  Paul has PSC, a rare liver disease.  For various reasons, those with PSC generally are not eligible for a cadaver liver transplant.  Usually, those with PSC die within a few years.  The only cure for PSC is a liver transplant, and since he doesn’t qualify for a cadaver liver that means someone must volunteer to be a living transplant.  With the liver, you can donate 60% of your liver and it grows back over a matter of a few short weeks.  It is the only organ in the body that regenerates.  Imagine, a good Samaritan giving up part of their liver for someone else!  Well, it’s happening for Paul.  A high school friend of Paul’s daughter decided that this is something she just had to do.  And it’s happening tomorrow at Northwestern.  They both go under the knife and 60% of the donor liver goes into to Paul.  You can following the progress at their Caring Bridge  http://www.caringbridge.org/visit/paulandkathy   or at daughter Heather Face Book page http://www.facebook.com/FindPaulsLiver

Update (late) from Dan

It’s difficult to keep my blog current when there is little to report…

 

My 9 month check-up was earlier this month.  The official diagnosis is “boring”.  Other than some vitamins and calcium the only significant medication I am taking is Prograf, which is the anti-rejection medication.  My blood work is completely normal.  Prograf, like most medications come complete with a host of side effects.  Fortunately I have experienced none of these.  The only evidence of my transplant is the scar, and that seems to be quickly disappearing. As I reported previously I don’t “feel” as though anything ever happened to me. Nothing. Nada.

 

This week was my first day on the ski slopes with my new liver. As surgery was approaching I always focused forward on the future.  One of those focal points was getting to the top of the mountain, taking the photo, and sending it to my liver team.  So I succeeded. And just for good measure I posted the picture in the break room at the liver clinic this week. I really have no restrictions so there is nothing I can’t do – except I can’t eat raw fish and I can’t clean the cat box. Sad, huh?

FINALLY - Snow - First Ski with New Liver

 

My year anniversary is on March 1^, 2012 – and that is the date I enter the study to reduce the Prograf levels hopefully to zero. One patient on the study has a Prograf dose of 1 mg each week.   It is a fact that some transplant patients – about 20-25% —   don’t need anti-rejection medication.  And there is some evidence that patients can be weaned completely from this medication.  Being in the study carries little risk since if there is a rejection it is easily fixable.  If there is a rejection it occurs very slowly, it is easily identified and can be corrected.  We shall see the results from the study but for me it is very exciting.

 

PAYBACK TIME

 

In the meantime I have been asked to Chair a Philanthropic Council for the Northwestern Medical Foundation and also, as a businessman be on the advisory board for the CTC.  The philanthropic council is brand new and strictly to benefit the Comprehensive Transplant Center (CTC).  To me this is an honor.  It’s payback time.

 

The first order of business is forming the council.  It will be a group of passionate doers with varying talents. We are about half way there and we’ve attracted some very dynamic and passionate folks, mostly donor recipients, who have raised their hands to help.  I am interviewing each one.  Like any organization it is a matter of finding those with the passion and desire to serve — and are smarter than me.  Believe me, those of us who have new organs from NW are very passionate and grateful . We have been given the Gift of Life and now we want to perpetuate the process for the next guy. This will be fun.

 

The fund raising efforts for the CTC is in its infancy but the elements are in place.  First is the product.  The CTC produces great result.  The CTC is a center of excellence and is the “best of the best”.  There is something really special here. It is a secret sauce that consists of culture and competence.  The culture is unique and compelling. The mission is defined within the culture and there is extraordinary commitment with the team beginning with the receptionist.  The teams are scary smart and dedicated.  Those of us that have gone through the process know it.  We feel it. I’ve talk to other centers around the country and their peers all consider NW one of the elite.  It is up to the council to help tell the story.  We have the power to help create a culture of philanthropy.

 

SOME OF THE INITUTIVES AT THE CTC

 

Part of my part time job is learning and being briefed about the various CTC initiatives.  Here are two of them:

 

This week I met with Dr. Josh Levitsky (who happens to be my hepatologists ).  Josh is working on Immunosuppression issues and liver transplant tolerance.  If I can figure it out me will post the abstract.  When Josh gave me his paper he said – “now this is a little complicated for most Docs”.  It goes without saying that when I left his office the average IQ increased.  His research and proposal involves novel research with a potential for major impact on health –improving outcomes for a growing, vulnerable patient population. His paper will be published soon in the Hepatology Journal (commonly known as the Green Book)  He has received some funding but needs more and the delta to take it to the next level is not that expensive.

Also met with Drs. Ladner and Baker. They were MY surgeons.

 

Then there is Dr. Jason Werthheim.  He is growing livers involving stem cells and re-engineering livers.  His stuff is at:  http://www.biology.northwestern.edu/igp/faculty/wertheim/index.html .  I met with Jason this week as well.  I absorbed 2.3% of what he said. Bottom line – they believe in 15 years organs will be “built to order”.  Patient DNA can be injected into a stripped down pig’s liver and a new one grown for a human. For now his micro-surgeons are transplanting man made livers into mice.

 

 And of course, it all takes money. Some of the efforts at the CTC will knock your socks off.  Star wars stuff.  And our little Philanthropy Council is honored to play our part.

 

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/  

…. And a good time was had by all

Things are going well. “Well” as defined as I think nothing ever happened….

We had five weeks on the Nancy D cruising areas of the Georgian Bay and Northern Lake Huron. We plied waters where we have never been including some uncharted stuff where Nancy was the bow watch. We left Port Kenosha on June 25th and arrived back the first week of August with one week in between where we flew back for business. Twice during our Canadian cruise I got my normal lab work. None of the folks we met in Canada care for the health system but for me it worked out well for me. In the USA the Lab work is about $365. I pay $20 and the insurance company picks up the rest at a discounted rate of about $180. In Canada I had to pay full retail cost myself. But it only cost $56. Something is screwy somewhere….

Today has been about 6- ½ months since my transplant. Two weeks ago was my six month check up. Everything is going well, no issues, and they have lowered all of my medication. My pills are about half of what they were. On March 1st, my one year mark, I enter the study to get off the anti-rejection drugs completely. There are some folks on the study that are on one Prograf a week. While I have no side effects from the drugs it will be nice to get off them completely.

Last night our family had one of the most spectacular nights ever. The American Liver Foundation (ALF) had their annual meeting in Chicago along with their magical dinner. The dinner was in honor of my friend Dr. Michael Abecassis who is Chief of the comprehensive transplant center at Northwestern. Mike is the guy that guided me and my family through our journey, so we were pleased for our family to honor him. This was HIS well-deserved night. At the dinner was Dr. Daniela Ladner, my lead surgeon. We also met the very first transplant patient from 1993 ( serial # 0001 – I am about Serial # 1200) who is doing just fine. As a family we consider these folks heroes doing what they do every day. It is a very tight net family with a holistic culture with the benefit going to the patient. Rarely do I see this kind of dedication in any profession. Any patient under their care is very lucky, indeed. Working with the “best of the best” is a privilege. Here are some photos of my family along with Dr. Ladner and Abecassis.

At the dinner was a silent auction. There was only one thing we bid on that we wanted – And we won!! Scrubbing in and watching a surgery. Now the only problem with that is it’s a back surgery. I would imagine the prize was given by some doc who needs his back operated on who figures anyone can watch. Regrettably I gave up my prize to Nancy. Five years ago Nancy had an artificial disk installed in her lower back, going through the abdomen . She negotiated with the doc that she wanted to stay awake and watch but they said no. So now Nancy gets to finally watch – on someone else. As for me I doubled the bid but said “For liver transplant only”. I thought – fat chance of that. But they took my money and I now feel I am in a strong negotiating position. Yes, I want to watch a liver transplant. So, I approached a few of my surgeon friends introducing myself as their new assistant. No one was impressed with my para-liver transplant surgeon skills and I could only picture myself tied to a chair with a gag in my mouth. I think the closest I’ll get is watching it on TV. And for those of you that want to do that, just tune in at:

http://www.orlive.com/montefiore/videos/patients-benefit-from-multidisciplinary-montefiore-liver-transplant-program/patients-benefit-from-multidisci/UPDATEAPP/false

This is a modified “made for TV” version, but I think you will get the drift.

Stay healthy and be proactive….

Dan with Dr. Ladner MY Surgeon…

Annie, Will, Rob, and Laurie

Dan and Nancy with the Abecassis’s

I feel like Peter Pan

On second thought perhaps that isn’t such a good analogy. Superman would be more appropriate. The point is I can FLY.

I was informed through my Medical agent in Oklahoma City that The FAA Medical Branch cleared me for takeoff. For the last year the only flying in N847DD has been by my pals, not with me. It’s frustrating taking a back seat and not Pilot in Command. July 1st will be the 120th day since the transplant so a lot has happened very quickly

Incidentally, if you are a pilot and have a medical issue that keep you from flying I can highly recommend Pilot Medical Solutions at www.leftseat.com. They have done a marvelous and very professional job of interfacing with the FAA which on an individual basis could be a process that last months.

In the meantime, we are on the Canadian trip on the Nancy D!

http://share.findmespot.com/shared/faces/viewspots.jsp?glId=0E6nYKDo1J8lG1MKrlXO7qad8BnOX32FB

Update from Dan

June 1st marked my 90 day anniversary. I dutifully reported for my 90 day checkup/inspection and all is well. My medication is cut as is my blood work. They don’t want to see me again until September 1. It appears, thankfully, that I am now in the “has-been” category.

I have only two restrictions. I am not allowed to eat raw fish. This means when I go to Japan I can be rude to my guest by not eating sushi. Wonderful news! Also, I am not allowed to clean out the cat box. Of course, we don’t have a cat. But most of all I can never never never eat raw fish out of the cat box. That is strictly off-limits. I feel like all of this – the entire episode– is something that happened way back when and in another life. Physically my notables are that I eat like a horse and I don’t gain weight. I lost 20 pounds during surgery, have kept it off, and now at my perfect weight. I also eat a ton of beef. If I see a cow driving down a country road I feel like stopping and having a bite out of its ass. Ice Cream is good too. I really don’t know what this is all about but you will not hear me complaining.

So all of this means that we will have a normal summer, weather cooperating. Nancy D is now floating in the Kenosha Harbor (I am referring to the boat here, not my wife) and it is fueled up ready for our Canadian trip beginning July 1. I also have my transplant records into the FAA and I expect sometime in June I will have the clearance so I can fly again. Once that happens then I will officially be “normal”.

So now it is time for me to help those that helped me…

In May I had the opportunity to visit the folks at the Gift of Hope Illinois ( http://www.giftofhope.org/ ). Jerry Anderson as their president, and we had a delightful visit and lunch together. Jerry’s organization is the organ procurement organization (OPO) for all of the North half of Illinois and northwest Indiana. All of the organs and tissues transplanted in these hospitals are procured through Gift of Hope. They have the relationships with virtually every hospital and developed a community programs for organ donation. They have a close working relationship with the Secretary of State and other organizations through the area. It is truly a mission driven organization that coordinates the various organs from a potential donor working with the transplant centers for speedy distribution. It is a well oiled machine. As of March they have expanded the facility to include an operating room for harvesting organs. There are many OPO’s around the country, and the Gift of Hope is only the second OPO to have approved harvest facility within their building location. The Gift of Hope folks don’t see many of their clients so it was an honor for me to thank those that work on this stuff every day. I have agreed to work with their marketing folks on an outreach to Chicago corporations. The goal is to expand the donor list to the next level. Seems to me like an easy sell and an opportunity for me to help the cause.  Gee, they even took my photo ! ( http://donatelifeillinoisblog.com/ )

Then there are the initiatives at Northwestern. In May I had a meeting with the development folks and the Chief of the Comprehensive Transplant Center. They are doing some amazing stuff. I am reading feverishly trying to get my arms around it. One example is growing livers in the laboratory. In not too many years they will be able to take a liver from a pig, strip it down to its chassis (their words not mine) and inject human DNA in to it growing it back to someone’s very own liver. Now that’s really cool. So a guy comes in with a bad liver, the surgeons take a few DNA samples, and then tell him to come back in two weeks while they grow him a new liver. WOW. (Oink Oink). Anyway, they ask that I Chair a group of folks, work to arrive at a CASE statement and disseminate the awareness within the community. There are a number of influential folks and business leaders in the city where they or their family have been touched one way or another through organ transplant. I believe the opportunity exists to leverage those in the community that are passionate for the cause. NIH funding for these various initiatives can kick in, but only after the initial research and development have been completed through the use of internal funds. Obtaining initial funding is the key prior to NIH funding This is leading edge stuff, high-tech, and conducted all within the realm of the University with some very very smart and dedicated folks. I think this could be fun.

So that is the latest on.. As the liver turns…

A “No News” Update

A couple of my friends pinged me just to make sure I was "pingable". I then realized I was late on an update.

It is been less than two months since the surgery and it now seems like a thing of the past. That was in a different life. If I wipe the month of March off the books, I didn’t seem to miss a beat. I have been back in the office for over three weeks and doing about 95% of what I usually do. I have my 60 day checkup in early May and I would guess I gain the other 5%. The only side effect from the medication seems to be difficulty in sleeping. Sometimes I am wide awake until 2 AM but then wake up feeling rested. Maybe I am just requiring less sleep. Then there are the abdomen muscles. Everything feels normal except when I move around it feels like I just finished about 200 sit-ups. Otherwise the scar is completely healed and I take great pride showing it off just like LBJ. For a small fee I can share them with you too.

So, I’m certainly not letting the grass grow under my feet. My Vistage chair told me I must be back to myself because I’m starting to irritate people again. Nobody has asked me to leave the office, so it can’t be all that bad. Lots of things on the plate and I am probably back to 90% schedule.

On Monday I have lunch with the folks from Gift of Hope. That is the local organ procurement organization that has a direct liaison at the national level and supplies all of the donor organs for the Chicago area. This is more of a fact-finding mission to see where my talents might be able to assist them. The bottom line is there is a shortage of organs all over the country. People die every day waiting as their options are reduced to zero. Hopefully they can use some of my talents whatever they may be.

Tomorrow we launch the Nancy D splashing it in cold Lake Michigan. (The boat, not the wife). Last year we had two trips–one early in the season from the travel lift to the slip and the other completing the round trip in the fall. In two years we have put eight hours on the engines. This year we plan to dilute the rotten fuel, blow out the pipes, and float it up to Canada. If I’m lucky tomorrow I will get a picture of the Nancy D (the wife, not the boat) holding the anchor or something else of substance relating to the marine industry. We’ve got to be crazy launching in the snow but we are anxious to get it in.

I am making progress on the flying end too. I have not flown since January and I am collecting all of my records for the FAA. On June 1, the 90 day mark, I can submit everything to the FAA so I can fly again. It appears that there are only a few hoops to jump through. No one seems to expect any problems.

I suppose the later chapters of As the Liver Turns will become increasingly boring because "no-news" is the best news.

Released from House Arrest

That was the headline as of last week. Now I am in exile back in the suburbs.

The clinic watches over the patient like a hawk over the first 30 days. One thing is for sure, they don’t want you to stray far from the clinic. But as of last week blood tests are now down to twice-weekly while they look for trends. All of mine are good, and I have one very happy liver. My wound is almost healed and with the absence of holes in the skin there are no leaks. The staples are all removed and they did a magnificent job sewing me up. On Wednesday I have my official thirty-day checkup and I understand they will be cutting back on the medication again. I am not aware if I had any side effects from the medication. They say in six months I will be down to a couple of medications. I am also on a study to wean myself off of the rejection drugs completely. While that may sound scary, they are finding they need less and less rejection drugs. They believe someday soon the protocol will be to get off rejection drugs permanently.

Bottom line is that I feel very good — I just can’t go 120 miles an hour. But every day gets better and the new liver and rearrangement of the old organs seem to feel more like mine. As a freebie they took out my gallbladder so I would assume that has some (positive) effect on me. I should have had him take out my appendix but I wasn’t quick enough to ask.

So overall, the experience was good. From a clinical perspective, it could not have gone better. Knowing what I know today I would be scared silly if I was any facility that was not a center of excellence. It doesn’t take much for something important to fall through the cracks. I have talked to others who have had plenty of bad experiences at other types of facilities. Some of their mistakes could have been fatal. This stuff is so highly specialized that as the patient you will learn more about the process and procedures exceeding the knowledge base of most MDs at your local country club.

From a personal perspective I was determined to walk home after the surgery but that was not the case. Perhaps I was thinking I was getting a root canal, not a liver transplant. Earlier this year my daughter and had a baby. The family was with her with her during labor at which time we learned all kinds of new words for our vocabulary. The next day she said "oh that was nothing". So I guess it all depends on one’s perspective. Prior to the transplant I would be asked "have you ever had major surgery?". My answer was "yes–I had a vasectomy and it hurt a lot". With that statement I would always be smacked around the room by the women around me. Perhaps now I can say the transplant was just like having a baby or hysterectomy and I can garner some sympathy rather than a black eye. I’ll try it out let you know what happens.

So, no news is good news and that’s all the news that is fit to print…

Flying High

We seem to have most of the issues sorted out. Most importantly, I have a very happy liver and all the numbers seem great. I have not had any pain medication for five days or so in the hydraulic leaks have stopped. I am still on a bag of saline every day for hydration but I assume that will stop fairly soon. So, I am one happy camper.

Yesterday we drove to the suburbs visited the office and house. Picked up the mail and check that the Apple Store for the new iPad. I feel very normal, start out at 100% every day like always, but just start to fade after a while. That is the next thing to fix but that only comes with time and exercise. I have no complaints. At this point, all of the issues seem long ago. It will be good to get back into the saddle again.