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.

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/  

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….

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

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…

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.

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…

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.

Everything is going as expected. Over the last week I have had only two real issues, both which are not issues but expected. One is the draining from the wound. (The hydraulic fluid problem) some people leak for 30 days. I think I’ll have the problem solved before then, but it is been very annoying. The last couple of days drainage has slowed considerably. The other is dehydration. I have always dehydrated quickly. But because of the leakage I have to drink tons of water. In addition they keep pumping in about 1 L of fluids every day. The more you leak the more fluids they give you which increases the leakage which really sounds like a perpetual roundaboute. But, eventually it stops and it seems to have stabilized over the last couple of days. It gives "happy trails to you" a whole new meaning and I feel like a leaky boat that the bilge pumps running continuously. A week ago I had constipation issues which becomes uncomfortable. Interestingly, the wound and my gut do not hurt at all. I maybe take a Tylenol at night but I can go from laying flat and sit up and nothing hurts. They said the muscles that they cut through would hurt for some time so maybe I didn’t have any muscles to hurt. I am now about 8 pounds below my preop weight, but I’m still a long way from being the Boy from Biafra.

Everyday they keep adjusting. They take very small measurements of all the good stuff in the blood and then make adjustments on the medication as they cut it back. Being two blocks away is a godsend because it’s close and they can do everything very quickly. Folks in a rural area have to travel to get to a hospital for the blood work, and then it takes a few days to reach Northwestern which I assume is more problematic and places patients more on a roller coaster trying to get everything cut down. The number of pills has generally gone down. I am on a study to eliminate antirejection medication permanently which seems to be a wave of the future. If something gets out of whack, that’s easily fixed as it shows up in the blood work immediately. If there is any rejection you see in the blood work long before you feel it in your body. I would assume in six months the worst case I would be on one or two medications.

I am the impatient patient because I really thought I would be walking around the block after for five days after surgery. I think I was slightly too optimistic. Now it’s even more frustrating because I feel fine and everything is great until I walk 100 yards and at that point I am winded. They keep telling me how well I’m doing –very well, and I know it’s true. There are some folks that I have met having a really rough time but were in not so good shape going into the surgery.

We checked in with some of our other friends today at the clinic. The guy that got the kidney donated by his son look fantastic. They took out all the to see had for dialysis because of never have to do it again. Their daughter wants to be a nurse and is Nancy’s new texting Buddy. I think she would make the perfect St. Norbert student in the nursing program. These amazing stories happen on a daily basis and there is no question the various members of the team go home at night knowing they have done wonderful things for people. They really make a difference to everyone around them and virtually everyone in the liver clinic are frightening smart people that really know their stuff. I would assume that attempts are made to poach them. They are really that good.

I keep on picking up bits and pieces of the surgery. Today I found out that when Nancy, Laurie, and Annie wanted to see the old liver (which I really thought they would do) they didn’t know quite how to handle it. Apparently of the thousands of transplants they have performed, we were the first ever to ask. So, they did what they do with any crazy person–they sent in the psychologist. I wish I could’ve been a fly on the wall. My family probably just kept digging the hole deeper by talking. I am sure the records now states "patient’s family has separation anxiety with patients old liver". One thing is for sure, I know we have been around too long. Today, Nancy’s twin sister Jane came for a visit. Everyone greeted her thinking she was Nancy on the elevator. Having a twin wife has its advantages.

I think I have now given away 50 boxes of Girl Scout cookies to the staff. Thanks Melissa for selling me all of those. Thin mints seem to be the prevailing favorite and I’ll probably be dead meat when I run out.

As I have said many times before I am highly impressed with the NMH staff. Now, being involved in the whole experience gives me yet another unique perspective from which to judge. I am well familiar with the culture within a mission driven academic institution and the commitment that comes from those involved. NMH is A Center of Excellence and all of the staff is focused on the mission like a laser. The result is an institution that attracts only the very best. If you’re not the best in what you do you would be frozen out by the others. The best attracts the best and soon you have a group of high performers probably in the upper 3% of the world. I am certain those involved in the transplant unit consider it a privilege to work and learn among their peers who are considered the best and brightest at one of the world’s leading research institutes. Nancy and I are very grateful for everything they do, especially being on the receiving end.

I also have a new appreciation for my skin. Skin is very useful because it keeps the body held together and all the wet stuff inside. And when it leaks, we usually have a good idea of the source through quick process of elimination. However in my case, and all of my noncompliant holes, I don’t know from where all the leaks emanate. Part of the healing processes getting rid of the liquids. After leaving the hospital they still have drains hooked up, but after being home for two days they remove the drains which means the Staples leak a lot. Frankly, it looks like 5606 hydraulic fluid. So, if I wanted to escape it would be difficult because one would only have to follow a trail to find me. I have also found a new use for them feminine products–they are great for soaking up the hydraulic fluid. (Maxi pads nighttime SKU #462 180 6381 thanks David for your advice) Anyway, this is all normal, but continually leak checks are always the order of the day. In the meantime, with all the bandages on my front I’m scared to go outside as I could be mistaken as a bomber.

So, I am very pleased with the results so far. My docs say in six months will be able to ski all day without a problem. I could not have asked for a better outcome.