Monday, January 27, 2014

My PSC Journey

Diagnosis

About three years ago, I received a diagnosis called Primary Sclerosing Cholangitis (PSC) which is a rare liver disease (affecting 3 out of every 100,000 people in the U.S.) without a known cause or cure.  The disease prevents the bile that’s produced in the liver from properly draining into the small intestine.  Without proper drainage, the bile buildup causes stones and cirrhosis of the liver, which will ultimately require a liver transplant to survive.   Given the serious nature of the condition, I decided to share this information only with my immediate family (obviously, that has now changed).

Cholangitis Attacks

As you might imagine, this news came as quite a shock to me and my family.  But, I was asymptomatic at the time, so it was easy to live in denial for a while.  About 6-9 months later I was on a business retreat in the mountains of Colorado when I suddenly felt very ill.  Instead of participating in the meeting I slept for about 18-20 hours straight.  I had no idea at the time that I was having a cholangitis attack (liver infection) and that my life was in danger without medical attention.  Luckily, my body was able to fight off the infection and I returned home none-the-wiser.  About a year later I was on vacation with my family at the beach and I had another cholangitis attack, this time I found my way to the emergency room and spent a week in the hospital recovering with the help of antibiotics.

Proactive Monitoring & Therapy

I get pictures (MRCP) taken of my liver every so often by my heptologist to track the progression of my disease.  A few months ago the pictures showed what appeared to be a lot of gall stones that had formed behind the strictures in my liver and my doctor was very surprised that I had not experienced more symptoms yet.  He proposed that we insert a drainage tube through my ribs and into my liver that would help to drain out the bile and hopefully a lot of the gall stones.  The tube would be taped to my side and i would come back to the hospital periodically over a period of 6 weeks where they would insert instruments into the tube and try to balloon strictures in my liver and remove gallstones.  

Recent Saga

On January 9th I checked into Emory Radiology for my procedure.  When I came out of anesthesia I knew something was wrong.  The amount of pain I was experiencing far exceeded what the doctors expected.  After a couple of days in the hospital on narcotics I went home.  Only to return 3 days later with uncontrollable pain.  They did an MRI but could not determine the reason for the excessive pain.  I was put on a narcotics cocktail of 3 drugs in an effort to control the pain.  We then installed a 2nd liver drain in my abdomen with the hope that it might be less painful and we might be able to remove the 1st one.  No such luck.  Finally, we switched to plan B and used the drains to help guide an endoscope (tube that goes down your throat) into my primary bile duct and install a stent to improve the flow of bile from the liver into the small intestine.  Once they installed the stent the doctors were able to remove the drains altogether (yippee).  Finally pain free, I was able to go home after a 5 day stay in the hospital.  

Unfortunately, a few days later I developed a fever that progressed over the next 3-4 days until I was told to return to the hospital for treatment of a probable liver infection (a clear risk of the procedure, but not one that you expect to happen).  So I’ve been hospitalized for the 3rd time in three weeks, this time with a cocktail of IV antibiotics to fight the liver infection.  After 5 more days in the hospital it looks like I might be able to finally go home (fever free) with a PICC line installed so that I can administer my own IV antibiotics for the next 4-6 weeks.  I’m writing this from my hospital room right now as I await the doctor’s decision.

The Road Ahead

This will not be the last time I am hospitalized for PSC.  I know this.  But my hope is that we were able to clear away enough gallstones and sludge from my liver and balloon enough strictures during the procedures and the painful time that the drains were in that we have extended the life of my liver.  Also, since I now have a stent inside my primary bile duct we should be able to conduct future therapies endoscopically (down my throat) rather than having to punch a new hole in me.  

PSC is a strange disease.  Some people need a liver transplant within 12 months of diagnosis and others spend 20 years or more with their original liver.  There’s just so much variance that statistics aren’t much help.  So, I will go on about my daily life until the next time that PSC decides that it’s time to remind me of it’s presence and we will deal with the challenges as they come.  

As word of my hospitalization spread I was asked continuously “what can I do to help?”.  And I never knew what to tell them until now.  You can be a hero and become an organ donor online right now, before you close your web browser.  It takes 5 minutes.  There are over 35,000 people waiting for a kidney and over 10,000 people waiting on a liver this very moment.  On average, 18 people die every day waiting for an organ transplant.  Take the 5 minutes now.  Click a mouse, save a life, be a hero.  Your organs aren’t much good to you once you’ve passed, but they are a source of hope for thousands who sit waiting for that miracle phone call “we have your new liver/heart/lung/kidney/etc" : http://organdonor.gov/becomingdonor/stateregistries.html 

The life you save could be mine.  

15 comments:

Matthew Quinlan said...

Looks like I'm likely to go home tomorrow (1/28/2014). Woohoo!

Paul Zoglman said...

Glad to hear you're on the mend. Hope you feel better soon.

Rafe Smith said...

Get well soon bro!

Luke Shannon said...

Wow. Such a journey. Glad you are feeling better. Hopefully this trend continues.

Michael Lazar said...

Sorry to hear of your plight. Happy you are on the mend for now. Take care of yourself.

Chris Mills said...

Quin, I'm so sorry to hear about what's happened to you. I hope this final treatment helps and I wish you all the best for a speedy recovery. If there is anything I can do (I'm a registered donor already) then let me know.

Unknown said...

Hey Matt! Thinking about you and sending good thoughts. In the words of Dimitri Martin, get well now! https://www.youtube.com/watch?v=DEumhVAEmms

Steve Mayzak said...

lol, my name showed unknown.... Its Mayzak!

Julie Steele said...

Matt, I never get on FB, but I decided to today, since I'm home with no water (frozen pipes) & I'm trying to keep my mind off that. This is your cousin Julie, & I'm SO sorry you're having all these health problems! I never knew about all this. I love you and wish you a speedy recovery, and some peace very soon.

Matthew Quinlan said...

Update : I was released from the hospital today just as the Snowpocalypse 2014 descended on Atlanta. No way for my family to get to the hospital. So I am holed up in a nearby bed and breakfast until the snow and ice melt. A crazy end to a crazy few weeks.

Matthew Quinlan said...

Update : I was released from the hospital today just as the Snowpocalypse 2014 descended on Atlanta. No way for my family to get to the hospital. So I am holed up in a nearby bed and breakfast until the snow and ice melt. A crazy end to a crazy few weeks.

Mrs Sharon Sim said...

Hello Everybody,
My name is Mrs Sharon Sim. I live in singapore and i am a happy woman today? and i told my self that any lender that rescue my family from our poor situation, i will refer any person that is looking for loan to him, he gave me happiness to me and my family, i was in need of a loan of S$250,000.00 to start my life all over as i am a single mother with 3 kids I met this honest and GOD fearing man loan lender that help me with a loan of S$250,000.00 SG. Dollar, he is a GOD fearing man, if you are in need of loan and you will pay back the loan please contact him tell him that is Mrs Sharon, that refer you to him. contact Dr Purva Pius,via email:(urgentloan22@gmail.com) +918376918351 Thank you.

Mrs Sharon Sim said...

Hello Everybody,
My name is Mrs Sharon Sim. I live in singapore and i am a happy woman today? and i told my self that any lender that rescue my family from our poor situation, i will refer any person that is looking for loan to him, he gave me happiness to me and my family, i was in need of a loan of S$250,000.00 to start my life all over as i am a single mother with 3 kids I met this honest and GOD fearing man loan lender that help me with a loan of S$250,000.00 SG. Dollar, he is a GOD fearing man, if you are in need of loan and you will pay back the loan please contact him tell him that is Mrs Sharon, that refer you to him. contact Dr Purva Pius,via email:(urgentloan22@gmail.com) +918376918351 Thank you.

Mrs Sharon Sim said...

Hello Everybody,
My name is Mrs Sharon Sim. I live in singapore and i am a happy woman today? and i told my self that any lender that rescue my family from our poor situation, i will refer any person that is looking for loan to him, he gave me happiness to me and my family, i was in need of a loan of S$250,000.00 to start my life all over as i am a single mother with 3 kids I met this honest and GOD fearing man loan lender that help me with a loan of S$250,000.00 SG. Dollar, he is a GOD fearing man, if you are in need of loan and you will pay back the loan please contact him tell him that is Mrs Sharon, that refer you to him. contact Dr Purva Pius,via email:(urgentloan22@gmail.com) +918376918351 Thank you.

Osman raheem said...

I am a private loan lender which have all take to be a genuine lender i give out the best loan to my client at a very convenient rate.The interest rate of this loan is 3%.i give out loan to public and private individuals.the maximum amount i give out in this loan is $1,000,000.00 USD why the minimum amount i give out is 5000.for more information contact us Email osmanloanserves@gmail.com

Your Full Details:
Full Name :………
Country :………….
state:………….
Sex :………….
Address............
Tel :………….
Occupation :……..
Amount Required :…………
Purpose of the Loan :……..
Loan Duration :…………
Phone Number :………
Contact Email osmanloanserves@gmail.com