The Living Donor Experience

So here is where the story of my donation begins. 

simspsons_moth_tattoo

Now before I get into the story of why, you have to understand the magnitude of this decision.  Living Donor Liver Surgery has the single highest risk operation that a donor of any kind can undergo.  The risk of death to the donor is 1 in 500.  In the case of a Kidney donor, the risk is 1 in 10,000.  So it is 20 times more risky than donating a kidney.  According to what UCSF has told me directly, the recipient’s chance of survival is higher than the donor’s…  But that statistic is so high because this procedure has only been done a few thousand times over the last 15 years. The procedure was pioneered in the late 80s, with the first successful procedure for an adult to child in 1989.  While the first adult to adult was performed in the mid-90s.

As soon as I knew I could possibly be a live donor, I stopped drinking immediately to make sure my liver would have a chance to regenerate and undo years of abuse.  I joined a gym, with the idea that if I started now I would be in better shape for the surgery, and hopefully the liver I would end up giving my mother would be in much better condition.  This could be my chance to give my mother back, what she gave to me: the gift of life.  This video is a great motivator for living donors, please note that it might cause it to rain on your face.

So let’s start out with the basics:  What does the Liver Do?

Take a look at the picture below.  Also note how close the lIver is to both your heart and your lungs (not pictured, but just above the liver).

liver_anatomy

The liver has two primary jobs. One is to detoxify the blood by converting substances like alcohol, caffeine, bacteria, and medications to a usable form, then removing toxins and excess chemicals from the body.  The liver’s second job is to turn food nutrients into compounds the body can use, storing excesses for future use.  Your liver also regulates certain hormones in your body, giving your brain signals that you are hungry, or if your GI system needs attention such when you get nauseas.

Fun fact about the liver:  After donating about 40% of my liver, it will grow back to its original size.  Your liver and your skin are the only two organs in/on your body that will fully regenerate.  How soon will it regrow?  The surgeons have told me that two weeks after the surgery, my liver will be about 85% of its original size.

liver_anatomy_2

I started researching what I could do to make my liver healthier.  90% of what I read lead me to believe that diet is the most important factor in detoxing/rebuilding your liver was nutrition and diet.  Exercise is also an important factor, but almost everything I read was about diet, diet, diet.

“The doctor of the future will give no medicine, but will interest his patient in the care of the human frame, in diet and in the cause and prevention of disease” ― Thomas Jefferson

I have been taking NAC, Milk Thistle, and Ginger for a few years to help recover from nights of drinking.  But most studies do not show any direct affect from those natural remedies, I still gave them a chance, and found that they did in fact help me recover faster.  I also thoroughly enjoy the flavors of bitters in cocktails, even outside of cocktails, so I was excited when I found out that Swedish Bitters are a great way to help detox your liver.

But what if I was genetically pre-disposed to NASH?

I began the Living Donor process on a Saturday evening on March 8, 2014.  I submitted an online questionnaire that asked me a series of thorough questions about my medical history, and my lifestyle.  I was brutally honest with myself in the process.  I had not been very kind to my body over the years, and in retrospect, I hope that my liver/body will be good enough.

Did I have any history of genetic disease such as heart disease, cancer, liver disease?  Well, yes, my mother, and which is why we are here in the first place.  Had I ever smoked a cigarette?   Yes, but it had been a long time.  How many alcoholic beverages do I consume per week?  Luckily I had been sober for nearly 5 months at this point, so that was an easy answer.  The questions kept coming and coming, and I began to doubt that my liver would even be close to being a candidate.  I completed the form and immediately received an e-mail saying thank you and that I would be contacted shortly regarding my donation.

A month passed, and I heard nothing, so I reached out to the person listed at the bottom of the thank you e-mail, who responded within a few days.  They were still reviewing my information, but they asked if I could come in mid April to discuss the option of being a live donor.  I showed up to meet the transplant coordinator who sat me down in a room and discussed the options and the process in great detail, reiterating that I could remove myself from candidacy at any time, even up until the hour the surgery would begin.

And then there were the tests

After the first meeting, I was given a barrage of tests.  A whole day at UCSF where I had the pleasure of touring the Parnassus campus in its entirety.  At the lab, I was to turn in a Urinalysis, a colo-rectal cancer screen, which I lovingly refer to as a “Poop-Smear.”  I gave what seemed to be nearly a gallon of blood in something like 12-15 of the test-tubes, each one with a different colored stopper.  If I had any genetic predisposition to Liver disease, UCSF would have found it.  I had an x-ray of my chest to look for lung cancer.  I received a Pulmonary Function Test, which had me blow out as hard as possible for 6 seconds, which is nearly impossible to do.

I participated in Transthorasic Echocardiography, during which they take ultrasound pictures and record sounds of your heart function from various angles. I had a standard EKG, and then a Stress Electrocardiogram.  This test was particularly interesting for a few reasons.  First, they had to shave my chest in odd places turning me into a man-o-lantern.  Second, the test itself is designed to take your heart rate to as high as possible of it’s maximum, but without running.  Basically power-walking on a treadmill while having your blood pressure taken.  I was able to get to about 185 BPM which was around 90% of my maximum for my age/weight range.  Right as you reach your peak BPM, you have to jump back onto a table to undergo one last ultrasound on your heart at it’s peak performance… all within a 1 minute window, so no room for error.  Overall, that was very good.  My heart was in great condition.

All  of this in less than 8 hours.  The good news, is that I now know the Parnassus campus of UCSF like the back of my own hand.

Round two of testing happened in early May.  It started with an early morning abdominal ultrasound.  This is one of the most important tests as they look for an enlarged liver, scarring, gallstones, or any other abnormality in my liver, any of which would have instantly disqualified me as a donor.  The test itself took around an hour, and I did not know the results of the tests until way later.  I was asked for more blood tests, this time the phlebotomist had to take blood in a slightly unusual method; immediately placing the blood on ice to preserve the homocysteine levels within the blood.

I met with an Internist regarding my medical history, who also performed a physical on me looking for any signs which would discredit my viability of my donation.  I was asked questions about my medical history once again, and was once again brutally honest.  The good news is that I had passed all of the tests so far, and things continued to look good for the potential donation.

Round three of testing included meeting with a Psychologist to ensure that I was of sound mind and that I was not being persuaded in any way to give up my liver for cash, or any other reason.  I am happy to report that I passed with flying colors.  Apparently there are quite a few people that get this far through the process of the living donor evaluation before being denied as a donor for being under duress, or worse, not cognoscente enough to make the decision to donate their own organ.

I then sat and waited to have a contrast CT scan, which if you have never had one, it makes you feel like you peed your pants, not a very fun sensation.  This is a very important step in the evaluation process as it provides a map of the vein structure within the liver, allowing the surgeon to see exactly where they can make their incisions for the operation.  Note that the surgeons will use existing veins and arteries in the donated portion of liver to tie back into the veins/arteries of the recipient.

I also had an MCRP which means they stuck me into an MRI machine, with an IV, then injected a contrast metal called gadolinium into my bloodstream so they can map the vein structure in my liver in 3D.  The MCRP was extremely difficult because you have to keep your hands above your head while staying completely still and holding your breath for 1-minute intervals non-stop for over an hour.  My arms were burning and throbbing after the procedure, but I knew I was almost at the home stretch of testing.

What else could be left to test?

Not much else.  I had one final blood test to confirm my general health.  I was asked to get a TB test from my local healthcare provider, which I did without incident.  I was also asked to donate blood… to myself.  Autologous Blood Donation, is the more technical term.  Best part about donating blood?  All the cookies and juice that you can drink after donating.

So now we start discussing the procedure.

 

4 thoughts on “The Living Donor Experience

  1. Dear Chris:
    Calculating the value of giving part of your Liver to Heidi so she has another chance at life, is impossible.
    At 57 years and counting, your Mother is my oldest friend.
    Your love and selflessness is deeply appreciated.
    Thank you,
    Uncle Jim

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