Big Bird!–A Color by Any Other Name

Did you know my skin is yellow?  For the last several months I have been told this and, honestly, I never really saw it until just the other day when I peered down over my belly and noticed my feet.  The tops of my feet were this bright yellow hue that looked like someone drew on me with a highlighter.  I remember thinking, “Ah ha!  So this is what they meant!”  Now, the yellow eyes I noticed—not as much as other people did—but I was aware.  I often thought my eyes looked more Chartreuse but who am I to argue, right?  But, the yellow feet just looked ridiculous.  The epidermal color change caused me to think about what other aspects of my life have been impacted or altered because of this whole liver thing.

Sitting down.  Sitting is probably the most annoying and difficult thing for me to have to deal with because of all the pain involved with just sitting.  Seriously!  Between the minor pain that regularly radiates up the right side of my abdomen and the occasional fluid build-up in my abdomen, any kind of position that has me at a near 90 degree angle (like sitting, bending over, etc) quickly can become very painful.

On typical days, this can be easily managed by avoiding to sit down too much (which is actually healthier for you if you can manage to sit less and stand and walk around more) and using couches to sit down whenever possible.  So, you can imagine how painful flying on a plane can be for me.  In general, flying commercial is essentially paying for some kind of CIA water boarding torture and psychological abuse between going through security and trying to actually sit in their “chairs” designed to elicit confessions out of the most hardened criminals (I swear those airplane seats are endorsed both by Attica and San Quentin Prison Systems).  We are supposed to fly to Boston over Thanksgiving…that will be a fun trip!!

Joint pain.  The muscle loss has depleted not only my winter insulation for when I return to the Tundra of New England, but also taken away any “cushion” around my joints in my back, shoulders, ribs and knees.  When I wake up in the morning or when I am stationary for too long, my joints will start to throb.   This is why I tend to stand up and move around during meetings that last longer than 20 minutes.

Funny comments from total strangers.  Here are some of my favorite comments from complete strangers I saw on the street, or in the supermarket or some other public location:

“You really need to ask your doctor for a blood test.  You don’t look right.” 

“You really should go see your doctor.  A friend of mine looked just like you right before he up and died.”

“Hey, did you know you are all yellow?” 

“Wow, you need to take some vitamins because you have some kind of vitamin deficiency.”

“Wow, you have a big belly!  Just like Santa Claus!”  (Gotta love the honesty of 6 year olds!)

“Your eyes are yellow and that means you drink too much or you might have hepatitis or a liver condition.  Have you seen your doctor?  (I was laughing so hard at this one!)

“You look like Big Bird!”  (Yup—a random 4 year old—also good for a belly laugh!)

The more insensitive the comment is, the funnier it is to me because I am always amazed at how off the wall people can react to an uncomfortable situation.

Fatigue. Yes, I do have a different energy rhythm than in the past.  I take a 30-40 minute rest pretty much every day in the early afternoon.  This allows me to have regular energy for the rest of the afternoon and evening.  I am much more productive in the morning than the evening.  So, this means fewer evening activities when possible.  This does not impact my productivity or what I can get done.  I just need to recognize the new energy rhythm and schedule my day around the rest period.

So, yes, though I love to live in as much denial as possible so that I can remain cheerful and positive, I do recognize that some things have changed for me.  The good news is that once we get the transplant, this can and will all revert back to normal.  I am lucky because transplant does mean a full recovery.  And, I have not been fully recovered in years so it will be exciting to see what this actually feels like when we complete this journey!!  Good news ahead for sure!  Because, you know, yellow has never really been a good color on me!

California Legislates Teaching About Organ and Tissue Donation in California Public Schools

This past week, CA Governor Jerry Brown signed a bill that puts Organ and Tissue Donation into the California Public Schools Curriculum.

As someone who certainly advocates for more organ donors, I think this is not the way to go about educating young people about organ and tissue donation.  Let’s set aside the fact that there is already too many “required curriculum topics” mandated by California legislation.  Let’s also set aside the fact that this law only makes it “optional” for schools to actually educate their kids on this topic.  I feel that government should not get involved in helping people decide whether or not to be organ donors.  Public Schools have enough to do.  I feel the role of the media and the public at large should own this.

Anyone else have an opinion on this?

Update on Live Donor Process at UCSF for Chris Mahoney

Hi Everyone,

This has been a challenging couple of days but it feels like there may be some progress real soon as it relates to the live donor process here at UCSF.  I wanted to thank all of you who have inquired about being a live donor and have been waiting patiently to hear from UCSF.

Even though there is one person currently being evaluated for me as a live donor candidate (and there is still a good shot that this person will work out) the transplant team advised me that, because of my large size, I will most likely need a live donor who is of similar size.  One thing they encouraged me to share is that physically fit male donors are more likely going to be a match than “smaller sized individuals.”

So, to those guys who have already filled out the online form and have contacted UCSF, you might be hearing from them soon and I want to thank you.  If there are any gentlemen of the description above who are interested in being a live donor, I encourage you to please consider being a live donor.  Time continues to be of the essence.  

Remember the basic guidelines in order to be a live donor:

18-45 years old  (Specifically for Chris)
-Healthy
-Blood type A or O (Negative or Positive)
-Body Mass Index Under 30
-Have current health insurance

Thank you so much if you can help!  The outpouring of support has been great and such a huge help to me and my family.  It has been a frustrating few days but we are hopeful to have some plans in place soon.

Must I Leave the Bay Area to Have My Transplant?

The past two weeks have been the most frustrating.  The time and energy it took to get this last procedure scheduled was frustrating.  And, this week, the realization that I may be forced to leave the state to get a transplant because of how slow the process is at UCSF was just too much.  Seriously, here I am in one of the best locations in the world to have this surgery done–and I have been working with my transplant team for the better part of two years–and to feel forced to leave this team whom I trust with my life in order to get a transplant at another hospital far away from friends and family seems–frankly, just plain wrong.

Yesterday, I contacted my doctor and just let her know, reverting to my New England roots and being as direct as possible, how upset I was at the whole living donor process at UCSF:

(Excerpt of the Communication)

There have been more than a dozen people who are friends of mine who have contacted the UCSF transplant 800 number after filling out the online questionnaire.  Some have never received a call back.  But, what is making me so furious is that UCSF is insisting that it takes 2-4 weeks for each work up and they will only work up one person at a time!  At one per month, I am lucky to get through one –maybe two–before I have to–no, before I am forced to go away from UCSF and travel around the country (killing me financially) to try and get listed at other locations.  These remote locations require me to relocate from 4-6 months away from the very support I have been told I need in order to facilitate my recovery.  

1). Why can’t UCSF work up more than one liver donor candidate at a time?

2). Why does the process take 3-4 weeks instead of much faster times like at Lahey or Cleveland Clinic?

I cannot believe that this the normal practice.  Hell, my wife literally almost physically attacked the woman at the UCSF records office because this woman there was obstinate in her refusal to help us get files out to these hospitals!  If a doctor from the hospital requests them, it takes UCSF records 1 day to FedEx.  But, if my wife or I request it to be sent to those hospitals, it takes 3 weeks??  My wife was blazing angry over the irrationality of it all.  

 I get the university bureaucracy explanation.  But, this is extreme as it forces people like me who want to stay with his team but cannot because of the pace of these live donor evaluations.  And, the live donor option was the one option you said would give me the best outcome and likely survival.   As time becomes my enemy,  I am forced to leave the very care of the team that I have the most trust in.  Your team gels well.  Your team knows me as a person.   I talked to the transplant surgeon in Indiana and he is certainly well qualified but I DON’T KNOW THESE PEOPLE.  Why do I feel forced to have to leave the team I trust because other departments within UCSF move at such a slow pace??  

(End of Excerpt) 

Luckily, my doctor was quick to respond and she will be talking with her partner who runs the live donor transplant program.  I am confident they can cut through this red tape.  Luckily the quality of my transplant team and how they work together is exemplary compared to these hobbits from middle earth that seem to inhabit the records office.  I have no worries whatsoever about trusting my life with my transplant team.

Now, to be fair, I do not know for sure if all the potential donors who contacted UCSF have filled out the online questionnaire.  The main issue for me is why will they only work up one candidate at a time when others could also be worked up at the same time.  If they were working 3-4 people at a time, then over the past three weeks, we would have had 3-4 options instead of just one that we are counting on.  And, as for the bozos in the records department, what can be said other than every employee who is hired in a hospital should be a PEOPLE PERSON and should be interested in helping to solve problems and not give attitude when an unusual request comes their way.

Let’s see if my doctor can once again “save the day” come Monday…..And, if any of my perceptions of what is going on is wrong or in any way inaccurate, I will be sure to publish immediate corrections.  I still value all that UCSF has done for me and they are still my “go to” location for helping me through this.  It is the challenge of dealing with a large bureaucracy that can feel overwhelming at times.

Frustrations of Trying to Get a Procedure Scheduled….

So, it took two weeks of cajoling, begging and pleading with my doctor to schedule the paracentesis that she said would help me to feel better.  So, when she offered this to me, my response was, “Great!”  Anything to get this monster tummy to shrink and alleviate my pain!

So…..two weeks later, STILL nothing scheduled!  Finally, got through to my doctor (by finding her cell phone number–story for another day) and she schedules it for today.  About time!

So, I go in to Mt. Zion Hospital and get set up for this procedure.  Now, let me tell you–after about one hour, they sucked out of my gut more than 5 liters of fluid!  I was blown away by how much kept coming and coming! No WONDER I was in so much pain in my abdomen.  I actually had them stop because they could have drained even more but I was already feeling lightheaded and a little dizzy.  And, don’t be fooled.  My doctor said this was relatively painless–not for me!  And, I can take a lot of pain so if I was feeling it, I am sure it is painful to most people.

I finally make it back home and I weighed myself in at a 195 pounds — 11 pounds LESS than what I had weighed just six hours earlier!

This was one of the strangest procedures I have done.  I feel alot better with the fluid removed.  However, my guts are bouncing around wondering where all the fluid went so it feels very strange in my belly.  It is just unfortunate that it took two weeks of frustration and stress to get this procedure lined up.  I could have felt much better several days ago….well, this is the first bad experience with my doctors so I can give them a free pass–THIS time….  :-)

Why Am I Writing About My PSC – Part 2

This is a continuation from my previous post…..

And, the kids keep you real.  I cannot tell how often my youngest kids at my school call me “Big Bird” if I am looking particularly jaundiced–and I love that!  I had one middle schooler who, a while back didn’t know I was sick.  But, his mom was a nurse and so he has more medical knowledge than a typical 12 year old.  We were talking one day and he says, “Chris, your eyes are really yellow.  That means that you are having liver problems and that if it doesn’t get better your liver might stop working.  You should really see a doctor…wait wait! I am so sorry!  I know all about patient confidentiality!  I cannot believe I just said all of these things to you!”  Well, neither could I!  And, the fact was, he was completely accurate.  He had me laughing so hard because here is this 12 year old who just spewed out my medical history for the last seven years and nailed it!  Where was he back in 2003 when my doctors had no idea what was wrong for about eight months?  The kids keep you grounded.

Even my three year old son has looked at me when we were cuddling once said, “Daddy, your eyes are yellow!  I like your eyes.  I like yellow.  Can I have yellow eyes, Daddy?”  Again, I just busted out laughing because it was so precious.

In 2007, I was diagnosed with three tumors imbedded in my gallbladder that turned out to be cancerous.  At the time of the discovery, the doctors would not give a straight answer about what it all meant.  The tumors were just too close to breaking through the gallbladder to know for sure if the surgery got all the cancer.  They told me it was a wait and see for the next two years.  This was my first real–in my face with the reality that I may die–situation.  I know what the survival rates are for Gallbladder Cancer and so I knew that if the cancer was still inside of me, it would only be a matter of weeks or months.

When I was first told about the cancer, my initial reaction was to laugh at the insanity of it all.  Here I was afraid of PSC and it turns out now that a cancer that typically hits 65 year olds is going to take me out!  I remember telling the doctor that I felt like I kept hitting the jackpot–but it was all the worst kinds of jackpots–the ones where nothing good could come from it.  This is why whenever my wife would buy Powerball tickets I would laugh at the irony.

At this point, each new bit of “bad news” is just one more pothole to fill on my road to recovery.  I cannot get upset or sad because I do not see benefit in that. Sure, there are times where I am scared.  But, I do not feel helpless.  I live with pain everyday.  At this point, I just endure it and continue to live my life.

I am spiritual but not religious.  I think there is something after this life but I am no hurry to go there just yet.  I have no intention of checking out before my time (like when I am 90).  I know I will find a donor one way or another because I will not leave it to the whimsy of luck–and I have a sneaky feeling my wife won’t just let this be up to the Gods of Powerball either!

The greatest gift I have received from this experience is the wisdom to truly understand that 95% of the stuff we deal with each and every day is just not worth the amount of emotional energy we probably put into it.  I have begun to appreciate that certain battles I would have fought are now far less interesting.  As competitive as I am, winning just isn’t as much fun as it used to be.  I like winning when others can win as well.

I think I am cheerful and upbeat.  My experiences have given me the resilience and the determination to see this as a long term process and not some “battle for my life”.  Let’s just hope this continues and that the positive outcome I am working towards comes to pass sooner instead of later.

Why Am I Writing About My PSC — Part I

This is for people who either have PSC or are curious about how things have been going for me over the years.  So, at this point, the most difficult days were back in 2003-2004 when I was first diagnosed.  My symptoms were pretty bad.  I was itching all over, I have to get my blood filtered twice each month (each time it took a couple of days).   I was miserable because I was dwelling on this notion that PSC is a “terminal illness.”  It did not help my mood or my relationship with my wife because at this time, we were engaged to be married.  So, the pressure was on to think about the future while I was still kind of freaked out about the fact that I may have no future.

Back then, liver transplants were done but live donors will still quite rare and basically the surgery was a real risk.  I was not interested in talking about getting a transplant back then because I was in my 30′s and thinking about death was really the last thing I wanted to do.  Over time, the symptoms improved a bit and I just got used to the others.  For example, I still itch all over pretty much 24/7 but it is just amazing how your body will adjust to whatever the new reality is.  If I stop to think about the itching, it starts to feel worse.  However, I learned to just press forward and allow my body to take care of it.

It took me a while, but I realized that I cannot just keep dwelling on this.  Life goes on and people move forward.  I was very upset to realize that I did not qualify for life insurance (without paying outrageous fees) and did not qualify for disability.  So, essentially, I have been walking this tightrope of finances for the last ten years or so.  Once I got married, I realized that regardless of what I thought or how I felt, I had to live for the future.  Otherwise, I feared ending up as some lonely misanthrope who is unable to have any kind of human connection or relationship.  Luckily, my wife is as stubborn as I am and would not allow me to wallow in my own self-pity.

For the last several years, my mantra has been that I am in control of my disease.  It does not own me.  Sure, from time to time, I have to make some adjustments.  I have tons of pills that I take (a daily reminder of my situation), and from time to time I need a “tactical retreat” and rest up or get some medical support to help me through a difficult time.  But, I will not let PSC dictate where I live, how I live, or what I can or cannot do.  I don’t live my life scared of tomorrow.  Thanks to my wife who is pleasantly relentless, I will not miss a doctor’s appointment or a check up.  I take trips, I play with my son, we travel when we can afford it.  I continue to work and I love what I do.  I put alot of myself into my work at my school because I derive much happiness in helping other people.

Part Two Next…..

Organ Donation 101: A Brief Introduction

Thanks for visiting my website.  Whether you are friends or family members of mine, or someone who has PSC, or just an interested visitor, I hope you find something useful.  It is my goal to share information about PSC, organ transplantation, as well as share some of my experiences as I continue to wait for a liver.  Since 2003, I have lived with PSC.  Slowly, over time, my liver has deteriorated to the point where now I must find a new liver in order to survive.  While I continue to wait (patience!  I must have more patience!), I wanted to share with you information if you have interest in somehow giving back to others in terms of donating an organ or tissue.

Did you know that you have the power to donate through organ donation?  You may save up to eight lives through organ donation and help many others through tissue donation.  Last year, organ donors made more than 28,000 transplants possible. Another one million people received cornea and other tissue transplants that helped them recover from trauma, bone damage, spinal injuries, burns, hearing impairment and vision loss.  Unfortunately, thousands die every year waiting for a donor organ that never comes. You have the power to change that.  If you  have interest in organ and tissue donation, please visit http://www.organdonor.gov/index.html.

If you would like to be an organ donor, please visit http://donatelife.net/register-now/.

If you would like to register to be a bone marrow donor, please visit http://marrow.org/Home.aspx.

If you would like to be a kidney donor, please visit http://www.kidneyregistry.org.

There is the opportunity to be a living donor for someone who needs a new liver.  It is a more complex surgery than kidney donation.  If you are interested in learning more, please visit www.ucsfhealth.org/treatments/living_liver_donor_transplant/index.html .  If you want to explore some common questions  around live liver donor transplants, please visit http://www.livingdonor101.com/ .