Coming up on 3 years

Well, then I am finally at the point where it is (almost) 3 years since the transplant.  Very much has happened in my life since the transplant, and I will attest to the fact that I did indeed get a new life.  Since the transplant I have been very active: working full-time, hitting the gym 4-5 times per week, taking long hikes with my two (big) dogs, and (I should probably not say this) but I have traveled around the world a bunch of times, in addition to flying around a lot locally in my ultralight airplane (no, I am not trying to kill myself!).  I am taking some pre-cautions in general, like anti-bac for the hands (keep one in your bag always!), staying cautious if there are sick people around, and most important of all: staying away from any and all yard work :)   So there you have it, the formula for success, no yard work, just gym work, and all fun.

No news is good news

Well, it's been a while since I commented further on the state of affairs. As you know, we had a very exciting election here in the US, and that distracted my blog efforts somewhat. But mostly, I had nothing new to say. At 3 months and some days all is still well. The liver is functioning exactly as it should, and other things are returning to normal. The time between my regular checkups is now 6 weeks, so the doctors are not particularly worried about me :) The biggest change over the past 3 weeks has been that the nerve-endings in my stomach region seem to have reconnected. This means that I have regained feeling in the stomach region. Even with this renewed sensation, I still wake up in the mornings with no feeling of having had surgery. However, after long days on my feet, or long drives in the car, I can still feel the new liver. I assume that this will disappear over the next few months.

5 weeks, but who's counting?

Smooth sailing. Not a cloud - but beware. I get to travel home in September. Not bad. Fall is dreary over here, and California sunshine sounds good about now. I have a renewed sense of almost everything - from smells and tastes to body odor. Still, occasional wound pain comes back in short bouts -- but really, it is nothing, and I expect it gone in a week (so says the surgeon too). All pain killers are gone -- hint here: they are absolutely necessary for recovery, but get off this carousel when you can. Life is actually very good! Having a goodbye and thank you party this weekend. I surely will come back with more updates upon returning home.

Rounding the 4 week mark

After 4 weeks with a new liver, I have to day that this had progressed differently from what I had expected. First, I had figured that recovery would be slow and drawn out. After just 2 weeks in the hospital, I was really ready for normal life again. Now, after having survived another 2 weeks outside the hospital, the confidence is back, and I have to say that few things are marked by the transplant surgery. With two exceptions: I still can feel the wound healing; and it will take some time to get used to the drugs. The healing part should be OK within 6 weeks. It improves on a daily basis, and typically gets sore with overexertion (too much exercise). The drug part is the more difficult issue. The drugs consist of anti-rejection drugs (ProGraf and CellCept), as well as prednisone and various things to fight off infection. The goal is to get rid off as much as possible of the drugs without rejecting the new organ. This is a slow balancing act, that requires expert follow-up 3 days per week. In my case, the follow-up consists of taking blood tests early in the morning, and then having a chat with the physician in the late afternoon as to what we need to change if anything. And that's the process that I am going through now. With these things going on, it is hard to concentrate or be producive with work or other things. The process of healing, adjusting medication, and getting stronger is all-consuming and expected to continue for another 5 months. The good news: I am returning home to California in two weeks (if all goes well), and continuing the follow-up care at UCLA. I don't expect things to change much aftr retruning, other than of course etablishing normal life again at home. So much to do, so much to prepare.

Leave of Absence- Day 12 and on

OK, so I am on leave of absence from something. What does this mean? It means that I am freely roaming about town, and sleeping in my own bed every night. It also means I am learning to adjust to normal life again. Here is a sample daily schedule:

6:00 Shower, change bandages etc.
7:15 Get to the hospital via bus/tram/walk
7:30 Blood work, weight, temperature, pressure
8-9:00: Breakfast and medication
9-11: Meet with surgeons and physicians
10:00 Power nap
11-12: The gym with physical therapist
13-14: Lunch
15-17: Watch the olympics, adjust medications, talk to physicians, leave for home, grocery shopping
16:00: Check in with nurse via telephone
17-18: Dinner, Nap
18-21: Nap, Blog and work
21:00: Supper and Medication, Nap
23:00: Log out

So, you see it is quite busy, and I have no problem following this schedule.

Welcome World- My first outing - Day 12 post transplant

Well, luck would have it that the hospital released me on a 48 hour leave today. So I am OUT. I have to go back Sunday, but still. I was out taking a city tram, and sleeping over at our borrowed apartment in the city (Thanks to John and Kari). I have to admit that the trip on a public tram from the hospital to "home" was a little scary. Left the hospital during Friday rush hours, so it was crowded out there in the real world. I felt like I should have had a big sign that says "Bump into me and I'll kill you". Yes, I know -- I am overprotective of my new liver and the big scar. It went well - nobody got hurt - but a couple of people on the tram don't know how close they got :) The nurses and the surgeons told me to come back to the hospital immediately should I experience any problems, or not feel confident that I could manage the real world. They also stocked me up on medication for the leave. If it had not been for having my wife by my side all the time, I do not think that I had dared to leave the hospital. However, all things are on track, and we are celebrating with a cup of green tea! The world is a fantastic place!

A picture is worth ....

Here is a picture at the one week mark. Scar is covered by bandage, and I have a plug hanging from the chest directly connected to my chest veins (just in case).

More later!

The One Week Mark

One week out of surgery, and finally painkillers and such are gone and my new organ seems to be adapting well. It is hard to be coherent while taking pain-killers, but finally today I am clearing my system from these (so far so good :) ). Also, today is remarkable since I am blogging from my Mac in an internet cubby hole at the hospital. I went to the gym this morning as well for the first time. It all feels physically very good, but now I feel I need definite breaks to recover my head during each day. So, taking 5 minute power-naps is an important tool here. And that's it for this morning -- off to a quick nap.

All drains disconnected. Eating & drinking on my own from past 2 days. Epidural still connected - keeps pain away.

A totally awesome day. Very emotional, thanks to an outpoor of support from all of You!

out of surgery and back to my room already on Aug 4. I feel grrreat!

August 3rd 2008, at 3:54 AM --- NOW

Just got the call from the hospital. Funny, but I was at the hospital today to visit my nieces little boy there, and I walked by the transplant surgery department. My conclusion was that it was a quiet place, and all staff must have been on vacation. At any rate, I am getting out of bed now, packing my big bag and my camera, and heading out for the transplant (by taxi). The there will be 2-3 hours of testing and then the big exchange. I hope to be back blogging in a few days (4-5). Just in case, I'll say my goodbyes to all of you now. My life has been really good so far, and I will soon be back for many more good years! Piece!

8 weeks of waiting, but who's counting?

Today I celebrate 8 weeks on the waiting list – I had not envisioned that it would take this long. It seems the world celebrates with me: In Zimbabwe president Mugabe has decided to knock 10 zeros off the currency, and in the US president Bush signs a housing rescue law. Both these attempts are done in order to reduce risk associated with financial matters.

Not to become overly philosophical again, but it is interesting to note that the old Greek society did not have any interest in further studying the concept of risk. There were two major reasons: they liked to develop theory as opposed to playing with empirical investigation (the latter is used to study risk); and they believed that their gods governed in all matters involving uncertainty.
The study of risk now spans several hundred years since it gained new interest in the 13th century after Europe had been introduced to the Hindu-Arabic numbering system. Blaise Pascal, a French mathematician in the 17th century, laid the theoretical foundations for probability and risk, but then abandoned it all to join a monastery. Judging from the current housing and banking crisis, and knowing the enormous risks that have been ignored in that industry, we have to conclude that the risk concept is still poorly understood – I hope the monasteries have extra room for a few financial analysts?

Since the first liver transplant was performed in 1963 and on through the 1970s, it was very much an experimental treatment. With the introduction of anti-rejection drugs it became more of a standard treatment in the 1980's, and associated risks could be studied more carefully. The risks are measured in terms of survivability, an oxymoronic concept on its own since nothing is ultimately “survivable”. At any rate, liver transplants are often studied in terms of 1, 5 and 10 year survivability. These measures are transplant center specific, but in general the one year survivability is now north of 90% and is improving. I keep reminding myself that compared to the alternative, these “risk-rates” are excellent. At this 8th week celebration for being on the waiting list I cannot help but thinking that the waiting must have a negative impact on the outcome – but if so, the published survivability rates already has taken this into consideration? I haven't bothered to check this with the research literature, but my body tells me I am right. Maybe I should have joined a monastery, and learned to be more patient?

Zeno of Citium, high doorsteps and other pains

Day 51: What's with the complicated title?

Took a few days off from Blogging, in hope of doing something more physical and entertaining and enjoying good summer weather. It was not to be, and here's why ...

In my regular life, I live in California, where a door frame seemingly has 3 visible sides: left, right and top. Over here, for some reason, the fourth side, the bottom, is also present and stick up like a sore thumb -- or at least like some sort of trap. I have countless times stubbed my toes on these pesky contraptions. And as most of you know, when you stub your toes, the world does come to an end (for a few seconds). Well, this week my plans came to an end because of the side effects from the liver disease: varices in the throat which make you feel like vomiting - not mention the discomforting feeling of strangulation. The whole thing was awful, and I am not capable of re-examining this event in writing yet. However, it came to pass after 2 days or so, but the experience caused me to revisit the thoughts of the Greek philosopher Zeno of Citium who stated: "man conquers the world by conquering himself." He also argued that we could develop wisdom by developing an indifference to pain and pleasure through meditation (I think he meant medication). At any rate, Zeno stubbed his toe back in year 262 BC, and consequently hanged himself, believing the toe-stubbing was a signal for his departure. I'll take extra care when crossing those door steps from now on!

Day 48: Nothing to add

Passing the 7 week anniversary for being wait listed. Nothing to add, other than hoping for an immediate visit with the surgeon.

Sweet Dreams

Day 47: The Importance of Sleep

Last night I slept about 10 hours, which is the longest in a while. Sleep in incredibly important for renewal of cells in the human body. If it was not for the 1/3 of life that we sleep, there would be no other 2/3's to enjoy. With liver diseases this becomes important: fatigue is a known symptom associated with these diseases. And while a liver disease destroys liver cells, sleeping helps create new ones (but perhaps not quickly enough). Fatigue can have a very negative impact on how we are able to function on a daily basis. It certainly helps having a job where the fatigue spells can be distributed at times outside of work. I count myself fortunate in this regard.

While waiting for a big event like a transplant, the fatigue issue takes on another dimension. The waiting and anticipation cause sleepless nights, and this combined with fatigue has a detrimental effect on the liver: the symptoms of the liver disease will worsen as the liver gets little or no time to heal. I found that non-regular, moderate use of some sort of sleeping medication is crucial. While the medication itself is metabolized through the liver, and as such may have a negative effect, the gain for me is greater than the loss. However, these things are often best decided on in strict coordination with your physician.

My only concern with respect to sleep is that I will not wake up when I finally get the crucial phone call from the hospital. Believe me, the thought has struck me more than once.

The 3 F's: Food, Friends, and Family

Day 46: Things to ponder while you wait

The body is a complex structure. In a six month period, the elementary building particles (atoms) in the body will all have been changed. How come then that diseases, such as liver diseases and cancers, don't disappear with the old building blocks? The reason is that many diseases are caused by systemic failures that occur in the body. As such, even with an organ transplant, or the removal of cancer cells for that matter, the disease may reappear again in the future. This is also the case with PSC: even with a new organ in place, the disease may reappear.

So how does one prevent systemic failures? I don't think there is a good answer to this question. However, as always with any disease, part of the equation may be in changing your own behavior. That is, live a healthier lifestyle: eat healthy food and exercise (physical input and output), and surround yourself with good friends and a supportive family (psychological input and output). With PSC it makes a big difference what you eat: greasy fast-food and too much heavy proteins (red meat and lobsters :) ) will make you feel ill since your liver cannot remove the waste from your system. If someone had told me 10 years ago that I would eventually be eating spinach as a snack, I would have laughed at them. Today I do just that: it helps with calcium and vitamin D deficiencies that are typical with liver diseases. So does walking or hiking -- the liver researchers tell me that it is actually the physics of pounding the pavement that helps build back calcium. Also, spend 25 minutes naked in the sun outside every day -- it also helps tremendously with vitamin D intake (well, OK, you don't have to be naked).

So I spent the evening at my friend Bill and his spouse's house last night. I've known Bill since graduate school, and we used to have a lot of fun together. However, careers have taken us in different directions across the globe, and we have not had much time to catch up in the past 10 years. I was fortunate to also meet many new friends at the party, as well as Bill's brother who was visiting from the US (it might take him a while to recover from this experience ...). Just imagine this: a dozen very grown up people sitting under a tarp in the backyard with an open firepit, while it rained cats and dogs (we could have gone inside!). When you have this much fun, you forget all about the rain or the liver transplant for that matter. So, it is with your friends and family as it is with the atoms of the body: they may be exchanged from time to time, but you need to keep a few good ones around to keep your wholeness.

The Importance of Donor Registration

Day 45: A Longer Wait?

I failed mention earlier that I had a phone conversation with the transplant coordinator this past week. The coordinator is the person who will eventually call and let you know it's time to show up at the hospital for the surgery. The transplant coordinator informed me that due to a much lower level of organ donations in June and July, the waiting time is going to be longer than we we first expected. Exactly how much longer is hard to predict, but anyway longer than in the first quarter of 2008. This is of course bad news for those on the waiting list.

As a reminder to all of those who read this blog, I have therefore decided to post the organ donation links for several countries at the top of the right hand side column of this blog. Please, please do register as an organ donor in your country! It is easy to do, and will only take a few minutes of your time. For those of you who live in countries where there is a need to carry a printed donor car, print a few for yourself and a few for your friends. Leave several copies of your filled out card in places like your purse, wallet, backpack, suitcase, car, at work, and anywhere where it may be found easily by someone other than yourself. Your gift of life is highly appreciated!!

The risks of waiting: carcinogens and cancer

Day 44: Still here and still waiting.

The optimal timing for a liver transplant is an interesting topic of research for me - both personally and professionally. The waiting time can be viewed as two (intertwined) components: the waiting time for a matching organ (since we can't just pick it off the inventory shelf), and the waiting time caused by a tight supply of (or high demand for) an organ (since there are many patients competing for the same organ). Waiting brings with it several risks, one being that of developing cancer. For PSC patients, there is a chance of about 20% of developing cancer. If this cancer develops, and is detected late, then all bets are off -- no transplant. The scenario will depend on the country you are in, and on the availability of livers -- but generally, in the US, there will be no hope for a transplant. This is what happened to the famous Chicago bears running back and Hall of Famer Walter Payton. Mr. Payton announced in February of 1999 that he suffered from PSC and needed a liver transplant -- he passed away on November 1st that same year due to cancer of the bile ducts. So, a good, but perhaps not optimal, timing for a transplant is before you develop cancer or other life-threatening complications.

Having been diagnosed with PSC in the same period, Walter Payton's story forced me initially to focus on how to avoid cancer of the bile ducts (if I only knew?). Carcinogens are agents directly involved in promoting or spreading cancer in the body. These things are found almost everywhere: in smoggy air, in paints, tobacco, and so forth. I decided early on to stay away from such chemical to the extent possible -- however, living in LA and traveling to other big industrial cities around the world, one cannot avoid carcinogens 100%. But so far so good. I did move to the coastal areas where there is less smog, and minimized my exposure to carcinogens. I tried also to change aspects of my own life to avoid spreading carcinogens. Thus, the story of Buddy.

With gas prices at about $12 per US gallon in many European countries, the traditional gas powered car is an economically poor choice of transportation for many people, and certainly for the carcinogenic and environmentally conscious. So for the past 2 weeks I have been driving around in a brand new Buddy electric car, courtesy of my niece and her husband (see picture). Buddy has so far cost me $0/mile: I have been charging it at public parking spaces, where I have paid nothing for parking nor for the electricity, I have also paid nothing to enter the city limits (this can be very expensive in Europe). Further, each day people stop me to chat about the car, and talk about the price, cost per mile, and other issues. Buddy is truly an instrument that helps me build my social network (take that, FaceBook)! People give thumbs up at me everywhere. This car is more of a chick-magnet than a Labrador puppy. Just yesterday 3 girls in their late 20s gave me 6 thumbs up – either because I am cool, or a dork driving that jet. I strongly believe it’s the former, but don’t tell my wife.

Never have I felt so good about causing a traffic jam uphill: my variable transportation cost is zero, people think I am cool, and finally my environmental consciousness is clear. Not to forget: I am preventing the creation of additional carcinogens that may negatively affect my own and other people's health.

The last wait

The waiting times for a transplant in a small country with a multi-country collaborative network, but with no presumed consent, is heavily dependent on available donor organs. Shortly before my arrival at home, the average waiting time had been down to 4 weeks -- however, due to organ matching and the forces of supply and demand, there are no guarantees. I was given a range from 2-8 weeks -- but again without any guarantees. At any rate, I was elated.

As of today, I have been on the list for a little over 6 weeks. I am dragging my cell phone with me everywhere, waiting for that magic call. Because when the call comes, the liver is ready -- and hopefully so am I. But this has been tough. Although my wife has been with me here most of the time, my kids are still in the US. I do have lots of family around to compensate, but it is still hard -- and I miss my dog. As of yesterday, my wife had to return to the US to take care of the household there.

I don't think it is the mental preparation for the operation that occupies my mind the most. After having met with everyone from the surgeons to the physical therapists, I am pretty clear on what will happen at the hospital. Also, I had the fortune to talk to several other recent liver transplant patients, and learned a lot from their experiences. It is not a fear of death -- this I have long come to terms with -- death is something that will hit all of us. It is also not about regrets. Surely, it might seem odd to a 20-year old, but I am happy with what I have done. No, the thoughts and questions typically roll in at night -- when the mind is idle -- and the topics are more focused on what you should do after this event is over (assuming, of course, survival). It is also about anticipations of how I will respond and adapt to a new organ. And all of this is causing a lack of sleep@!

The fortunate coincidence

It turns out that upon further examination of the past 12 months of activities, I found that I also had been bleeding from my stomach and possibly throat while visiting China in 2007. This episode of bleeding had fortunately stopped on its own. But now, in May of 2008, I experienced for the first time the full impact of the PSC. I was tired, had no energy, and had a strange feeling that my brain "had left the building." Based on some research I had read on portal hypertension, I figured out that my life expectancy was now about 4 months. My MELD score was incredibly low at around 8, and the waiting list for a liver in the US was over 2 years (down from 4 years a little while ago). I am screwed.

I decided that time had come for a perhaps last visit with my family who live primarily outside of the US -- where I grew up, got my education, and served in the army before I decided to make California my new adopted home. I knew all along that MELD situation was going to kill me, and I might as well be spending my time well. Sitting at home in California, weak and with a urgent feeling that I was going to throw up half-a-gallon of blood any time, the only question now was how to survive a 14 hour flight. For that matter, there was no guarantee I was going to survive just staying home. I did not care.

My primary care physician had taken great care of me, and made sure that I was on all needed medication. Upon arrival in Europe, I again felt an oncoming problem with my throat, and I checked in to the hospital a week later. My throat was checked again by gastroscope, and several potentially problematic varices were removed to avoid future bleeding. After a few days in pain from this, I was put on the local liver transplant waiting list. I was relieved beyond words, and was given a brand new lease on life. Or at least, the hope of a new life.

The progression of PSC - how soon is "eventually"?

Knowledge is priceless!!! Medical technology and knowledge improve with time. If you have a choice of having a liver transplant today versus in 10 years, you'd pick the one tens years out (assuming you can survive that long). Based on excellent advice from the top experts, I chose the latter.

PSC is not a very well understood disease, and its progression and symptoms are hard to predict (see Carl's blog here for a different scenario of PSC). In my case, as of April 2008 it was now 9 years since I was diagnosed, and I still had few to no symptoms. That is, over the past nine years I have had some symptoms: anytime the bile ducts blocked up I started itching. The solution: have an expert ERCP doctor open up the bile duct using a scope with a balloon attachment (balloon dilatation) - an outpatient procedure that for me produced remarkable results. It removed my symptoms, and kept me "normal" for about a year or two at the time. Above is a picture of that procedure from October of 2001. The hook like structure is the scope itself. This procedure was repeated a year or two later as needed. Until "eventually" shows its nasty head.

The risks that I took with the above treatment option were many: for one, there is always a risk of developing cancer of the bile duct. Cancer is a no-no, since it may be a contraindication for a liver transplant -- that is, you won't receive a new liver! Second, infections may occur; but in my experience bile duct infections were curable. Finally, once the liver is severely damaged, blood may not properly pass through the liver and you might develop portal hypertension. In some sense, over time the original problem grows in magnitude.

On a snowy day in late April 2008, while visiting a major city in Canada, I started vomiting blood. Within minutes I had, with the help of a colleague, reached the diagnosis "portal hypertension" (I am NOT a medical expert, just a researcher). I walked across the street into the university medical center, and told the ER nurse what had happened. I was still standing, and doing quite well -- people were asking what I was doing there to begin with. They kept me in ER anyway, and after midnight I started a series of violent vomits -- pure blood. I kept it in bags around my bed so that I could document the volume of blood. I did not realize that this was serious until I had seen more than 2 liters come up, and I had 8 nurses watching me while being hooked up to all kinds of machines. By 5 AM the gastro expert showed up, ready to go in and stop the bleeding. And so he did. Diagnosis: esophageal bleeding due to portal hypertension. Translation: blood comes out of the body where the resistance is the least due to the abnormally high blood pressure caused by blood not flowing properly through the liver. In the words of the US National Institutes of Health: "Bleeding varices are a life-threatening complication of increased blood pressure in the portal vein caused by liver disease (portal hypertension). ...Bleeding esophageal varices are a serious complication of liver disease and have a poor outcome."

I was lucky that I was in a big university hospital with plenty of gastro and liver experts. A week or so later I returned home to California -- only now I was very weak, and all energy seemed to have left my body. I needed a new liver yesterday -- I knew then that "eventually" had come.

Before the wait - how did I get here again?

The winter of 1999 I was working at a major research university in the US. I was in the process of changing my insurance options with the university, and one day I stood in the doorway with a letter telling me that my life insurance was turned down. I thought to myself that this must be a mistake, and got on the phone with the insurance company. Within minutes, the insurance agent factually informed me that I was an alcoholic. I ran to the fridge, and checked on the six-pack that had been in there since last summer: sure enough, one bottle was missing. I informed the insurance agent about my alcohol consumption of 1 beer bottle per six months, but it seemed not to matter.

Armed with the blood work results, I contacted my doctor, and asked for a second opinion. Sure enough, two of the liver markers were slightly out of range. What could this mean? To find out, a CT scan was ordered, and we got to see a picture of the liver and the attached bile ducts. On this scan, we could clearly see that a bile duct had been thickening in an abnormal fashion – a sign that the duct was scarring - a condition known as primary sclerosing cholangitis, or PSC for short.

As far as we know, PSC is a form of inflammation of the liver's bile ducts due to an autoimmune reaction. It leads to blockage of bile (that is supposed to run down into the intestinal system and break down fats and proteins), and eventually causes liver failure (and perhaps also cancer of the bile ducts). The bile ducts grow from within the liver, and form a tree which eventually concentrates into the common bile duct, and attaches to the upper intestinal. In my case, one branch of this tree had blockage (or a tight area with reduced throughput).

To confirm the diagnosis, I sought expert help at the UCLA Pfleger Liver Institute, where the diagnosis was indeed confirmed. The procedure used to look into the bile ducts is known as Endoscopic retrograde cholangiopancreatography (ERCP). Here is an x-ray from the ERCP from August of 1999. You can see the biliary tree and the spine (the endoscope is not visible in this picture).

No doubt, I had PSC and eventually would need a liver transplant. But, how soon is "eventually"?

Waiting can be fatal

The reason we should minimize waiting for organ transplants is reduce the number of deaths occurring while patients are on the waiting lists. Also, timely transplants may have a great impact on the longer-term survivability of the patient. As of July 17 2008, there were 99,394 waiting list candidates in the US. 9,028 transplants were performed in the US in the period January to April 2008. The number of donors (alive or dead) was 4,576 for the same period, and thus the waiting list grows. While accurate numbers a hard to calculate, since 1995 anywhere from 70,000 to 100,000 people have died while waiting for an organ in the US alone. With the use of the MELD system in the US (PELD for kids under 12 years of age), patients with excellent potential for a full recovery from a transplant may never even get the transplant. The reason is that the MELD system prioritizes the sickest patients -- a humane thing to do -- and does so only via a relatively simple formula. Only, transplant decisions are not that black and white, and a formula is not the most efficient nor humane way to prioritize transplants.

My own MELD score as of writing this blog is 8 -- a score hardly large enough to lift eyebrows (MELD scores go up to 40) -- yet without a liver transplant in the very near future my life expectancy is very short at this point, probably in the single digit month range (more on that in a later post).

Why the wait for an organ transplant?

When I have troubles with my car, and I need a part replaced, I wait at most 1-2 days. Why not so for an organ? The natural reason for waiting for an organ is related to finding a matching organ. In terms of a liver, this is done in two different ways: You could receive a part of a living donor's liver, or you receive a cadaveric liver (from a recently diseased organ donor). In either case you must wait to find an organ that matches you. The match is often in terms of bloodtype, size, and possibly other variables.

If we had all the organs we needed, the waiting time would be at a minimum. In reality, the demand for organs is generally higher than the supply, and the distribution of available organs must be prioritized. So, when a patient ends up on the transplant list (in the US), their priority is determined by something know as the MELD score (you can compute your own here if you know have recent blood test results available). Now things get tricky. Research suggests that a key factor in recovering from a transplant in the timing of the surgery (you need it before you are gravely ill). Due to a under-supply of organs, this timing issue gets to be more difficult, or impossible, to control. Thus, we have two choices: 1) make sure that there is always a good supply of organs so that transplants can be timed in a more optimal fashion, or 2) distribute organs due to some formula. Hence, the use of the MELD score in the US.

In several countries around the world presumed consent (or opt-out) donor systems are used (for example, Spain), where everyone is an organ donor unless they opt out of the system. This enables transplants to be performed in a more timely manner, and reduces waiting time for sick patients. Other countries have coordinated transplant services, in order to achieve a better (larger) supply of organs (for example, Norway, Sweden, Denmark, Finland, Iceland). This often achieves better timing of transplants, but is sensitive to fluctuation in donation patterns. The solution seems to be obvious -- the best option for any country would be: A presumed consent system, combined with coordination (for smaller countries, especially), both used with sound priority rules. Bob Aronson, a recent US heart transplant recipient, has outlined several excellent options in his blog.

The best solution, starting with a presumed consent organ donor system, is a political solution. It makes sense, and should be promoted vigorously in political circuits. Please help by writing you congressman or local political representative today!

How did this happen to me?

When someone ends up needing a liver transplant, a question that typically arises is "How did this happen to me?" While there are of course many reasons why a liver transplant is necessary, in my case I have a history of degradation of the bile ducts (primary sclerosing cholangitis, or PSC) over a number of years. To the best of our knowledge, PSC is an auto-immune type disease where your own cells attack the bile ducts. I should add that I have treated my body very nicely for the first fourtysome years of my life. This has probably given me an additional 9-10 years of a relatively trouble free disease period. However, PSC eventually catches up with you, and the only cure is a transplant -- something I have known and come to terms with over several years.

Why this Blog?

In June of 2008 I was put on the waiting list for a liver transplant. This blog is documenting my journey from the waiting time, through the transplant, and (hopefully :) ) through recovery. My own story of how I got here is also covered.

The goals of this blog are as follows:

1. For patients or relatives of (potential) transplant candidates who wish to understand more about the process from a first-person perspective.

2. To remind anyone out there that organ donation is a beautiful gift of life -- please discuss this with your families and make sure that you consider this important option. Become an organ donor! In the US, Check out OrganDonor.gov or UNOS for more details.

3. For policy makers throughout the world to understand that the process of allocating available organs is a tricky one, and needs to be better understood and managed.