New Here? Read This First

UPDATE 2:

If you’d like to listen to an audio version that covers a good portion of our story, follow this link:

http://nhpr.org/post/husband-wife-liver

 

UPDATE:

Check out this post for other posts that will bring you up to speed

Liver Transplantation Information

The current state of liver transplantation in this country is not exactly perfect. In the northeast, receiving a liver from a deceased donor is challenging at best, due to the high demand and low supply. However, there are other options.

The 3 options for people who need a liver transplant are:

1. Receive a liver from a deceased donor

2. Receive a liver from a living donor – someone of comparable size, with a compatible blood type (in my case: O or B) and who is in excellent health

3. Move to another part of the country where the waiting list for livers is not as long (For more information on the deceased donor liver shortage in the northeast, check out this radio segment about a patient from Massachusetts who moved to Indiana to receive a transplant. Derek’s primary transplant doctor, Dr. Frederic Gordon was interviewed for the story.)

As of Friday, November 8th I was placed on transplantation list and am waiting for a phone call from the transplant team that they have a match from a deceased donor, at which time (within 12 hours of harvesting the organ), I will have a new liver.

“What do you mean ‘list’?”

Well, it’s complicated and no you can’t pay to get higher up on the list; this system doesn’t follow Economics 101.  Even though there is a major demand for organs, there is a supply problem: every person eventually dies and many choose not to (or never thought of) donating their organs.  Major religions endorse organ donation as an act of charity, and while many people check the box at the DMV, they don’t always tell their loved ones their desire to donate.

So, how does the disbursement work?  There are 11 geographic transplant regions (New England being region 1); an organ originating in one region stays in that region for transplant.  For livers, there is a mathematical equation (the Model for End Stage Liver Disease, or MELD score) that tries to predict life expectancy based on blood test results.  The MELD score varies from 0 – 40; the higher the number, the worse off or sick the patient is (and the more a transplant is needed).  So, when we talk about the ‘list’ it is a ranking of individuals by MELD score (highest to lowest).  When an organ becomes available the United Network of Organ Sharing (UNOS) looks at the list, plus blood type and body type (i.e. an organ from a petite person would not work for a 400lb person) and determines the best match.  If this person is available and the surgeons accept the organ, they get it.  If not, UNOS moves down the list until someone accepts the organ.  There are minor nuances that I haven’t explained (like complicating factors, high risk organs, etc.), but that’s the general theory.

So, I get to the top of the list by (a) getting sicker, (b) having others above me choose not to receive an organ, or (c) more supply so others above me receive organs.  Being willing and able to pack up and move to another region is also an option. (See Steve Jobs as an example below.)

OK. OK.  So what about this ‘Moving to another region’ thing?

Steve Jobs, who lived in California (region 5), actually received a liver transplant in Tennessee (region 11).  Why?  Because the supply/demand curve is different for different regions.  New England has a lot of demand and very little supply, so people, on average, get really sick (i.e. high MELD score) before they are high enough on the list to receive a transplant.  Other regions, like Tennessee, Florida, Indiana have shorter wait times and people, on average, have a lower MELD score when they receive an organ.  Feel free to do your own research on why this is the case.  But for me (at this point), Lahey Clinic is one of the best in the country and I have a great team that I have been seeing for 10 years.  I’m not (yet) willing to move, but it may become necessary based on my health.

And this “Live Transplant” Thing?

Yes – the liver actually grows back.  Liver transplantation has been done since 1963, and live transplants since 1989.  Lahey Clinic has been doing it since 1999, and they are very good at what they do.

What Next?

As of November 8th, 2013 I am on active on the liver transplant list.

 PSC is one of those ‘odd duck’ disease – the disease progression is slightly different than Hepatitis B or C, and affects middle-aged males.  There are many more people with Hepatitis B and C that are in much worse condition than me.  So, I’m not very high on the transplant list (my MELD score is a measly 15), so that’s one strike against me.  But, I’m a young, 34 (attractive) otherwise healthy male, whereas the average person on the list is older (50+), so when UNOS looks down the list with a similarly aged / sized deceased person, maybe I’m near the top.  Secondly, I’m blood type B which is fairly uncommon (10-15% of the population).  So that means the list is shorter for me, but also finding a match is also rare.

I need a donor who is blood type B, (Ed. 11/11 – or Blood type O which is universal; this is more applicable to the live donors) AND I need to be near the top of the list. I can’t really  control any of those factors, but, if I find a compatible match in a living person, then I just created my own list and I’m #1. Live donation ensures that my doctors have the most control over the transplant and can verify that they have found the best possible liver.  A live donor donates a portion of their liver, which then grows back to almost its original size.

 For now I will:

(a) Wait for a phone call from the transplant team telling me they have a match – you can do your own research on median wait times here. Because of the rarity of the B blood type, the odds of me getting a call are better than if I were blood type O, but the likelihood of me getting the call immediately is not so high.

(b) Find a compatible Live Donor – Logan is exploring being a donor.  You can compete against Logan (see all the information below).  If you don’t want to, or can’t, you should still consider being an organ donor for someone else.  Logan won the competition and will be delivering her liver via transplantation on 4/14/14.

Basic info on organ donation

(c) Stay as healthy as possible and get routine checkups and blood work so that I can be as healthy as possible when my turn on the list comes up.

What We Need From You

Well, in a word, support. We’ve decided to tell all of you this in the hopes that we can keep the lines of communication open. This has been a hard couple of weeks for both of us. We’ve been living in a state of blissful denial about this pesky liver and its ‘issues’, and learning that transplantation is imminent is a bit, well, daunting. But the prospect of a long and healthy life post-transplant is exciting and definitely something we’re both looking forward to, and Logan is just writing more now to avoid leaving ‘to’ at the end of the sentence. (Derek is a very tough editor for being an engineer.)

Logan is working on creating a place on this neat thing called the internet for information about this process so you can check in with us along the way. (More on that to come.) And, so we can keep you informed even if you’re far away. We definitely can’t do this alone––even though we’re both stubborn and independent––so we’re looking to all of you to make sure we stay in touch.

If you have questions or comments, we would love to hear them – I hope to answer some of them on the blog so everyone can know what’s going on. Thank you for being great friends, and thank you for thinking nice, happy thoughts for us.

-Derek

P.S. From Logan: I took copious notes while we were at Lahey in March at what I am referring to as, ‘Liver Camp’, so if you have specific questions about the liver, its functions, and what happens before, during and after transplantation, I would be happy to field those and share my knowledge. They kept threatening to give us a quiz, and since they didn’t, I’m itching to prove I was paying very close attention in class.