The Bilirubin Queen

I’m a bad blogger – I vacillate between wanting to document my journey on a daily basis and the fear of being “that person” who goes on and on about the most mundane things.   My situation doesn’t change much daily and some of my personal struggles I prefer to keep personal.  My biggest challenge right now is finding the time and energy to work, serve in the church, spend quality time with my husband and family and maintain our home.

Lately, the defeaning silence of not knowing anything about the living donor process has been wearing on me.  A part of me wishes I had never gone down this path; after all, hope deferred makes the heart sick (Proverbs 13:12).  Two years ago, all I had to do was wait for my MELD to rise high enough to get the call.  I’m still wondering when (or if) that day will come with the added concern whether anyone who’s come forward is a match.  Every facet of this is out of my control, yet my mind thinks about it all the time.  “Last call for Futility, party of one…”

In the meantime, my body continues to fail in spectacular fashion.  I have osteoporosis of the spine, portal hypertension, splenomegaly, anemia (low red/white blood cell counts, platelets, hematocrit & hemoglobin).  Most of these things you can’t see.  But there’s also the dazzling jaundice, white vertical lines on my toenails, petechiae on my feet and lower legs and constantly itching skin.

I’m also hungry ALL the time.  If I didn’t have liver disease, I’d easily weigh 100 pounds more  than I do now based on how much I eat.  If I have a transplant, I’ll need to learn how to eat normal portions again.  How do you go from eating something every hour or two back down to 3 meals per day?  I snack so much it’s ridiculous.  That’s the only silver lining of this disease.  I literally can eat anything I want and not gain weight.

The key word in the paragraph above is “eat anything I want.”  To my horror, I discovered that 3-1/2 days of continuously administered IV saline is another story.  I gained 10 lbs in 74 hours the last time I was in the hospital.  And that was eating 2 small meals per day.  I nearly fainted when they brought in the scale and weighed me.  I was more depressed about the number than the disease itself.  So I’ve discovered I can be sick, weak, tired, yellow as corn, brittle and fragile but I better not be fat.  That will be the straw that breaks this camel’s back.  Pathetic, I know.

In the spirit of always closing on a positive note, I want to give thanks to the Lord for all He has provided for me.  I’m thankful for the relative health I enjoy, including the feral hunger that keeps me nourished enough to keep going.  I’m so grateful for my husband, our family and home, the church, my job and health care benefits.  I’m thankful for my pets, clothing, clean water, food on the table and a car that runs.  And always, I’m grateful for the time God appointed for me to be on the earth.  Thanks for walking this journey with me.

All Hail the Queen!  Brenda

Lately, people have asked me how the living donor vetting process is going, how soon I anticipate a suitable donor will be found and when the surgery will be scheduled.  As unsatisfying as it is, I have to tell them “I have no idea” – and I never will.  I’ll never know how many people signed up for testing, who was/wasn’t a match, or if they changed their minds.  My medical team won’t know either (unless they get the call to schedule surgery).   The living donor process is set up to protect the privacy of potential donors and to prevent sick patients, doctors and medical staff from approaching them with incentives (monetary or otherwise) to influence their decision.

Recently, two people contacted Piedmont to be tested (one a friend of my mother and the other a blood relative) even though they are over the age limit of 50.  I feel like my blood relative would be the best possible match, but I’m also not a medical professional or God.  I say that tongue-in-cheek with no intention to make light of or disrespect the Lord’s name.

My mother wants me to register at the Mayo Clinic in Jacksonville, FL because they have some of the best outcomes in the nation and the shortest wait time (6 weeks versus 3 years).  Attached is a fascinating article about this – please take time to read it:

Death By Geography – LA Times

Every morning on my way to work, I spend my travel time in prayer.  Today I was grappling with all the variables listed above; all of which are out of my control.  Yes, I’d love daily updates on the donor workups, but they’re not coming.  As much as I’d like Piedmont to allow both of the 50+ year old donors to be evaluated, I don’t sit on the board that decides who gets accepted.  I would love to register with the Mayo Clinic (truly I would), but I’d have to live within an hour of the hospital.  I live 350+ miles away.  Not to mention my husband, his job, my job and medical benefits, our home and 85% of our support group resides here in the metro Atlanta area.

As I was giving thanks in my prayers for all the Lord has provided; it brought to mind that when I arrived in Atlanta, 19 years ago, I came alone with only my beloved, asthmatic cat Zippy as my companion.  I had 8 pieces of furniture, pots, pans and dishes and as many clothes as would fit in my 1995 Nissan Sentra.  I was running away from a failed marriage and a devastating diagnosis.  I originally planned to look for a job in Savannah once I’d been here for a while, but met my husband 15 months later.  This was a blessing beyond anything I could have asked for or imagined.

Fast forward to 2014, I was happily working at Bank of America, closing out my 18^th year with plans to stay until a natural retirement 20+ years down the road.  The preacher’s wife at my congregation approached me about a job opportunity at Woodward.  I wasn’t looking for a job but ended up making the move.  What I didn’t know then was the benefits at my new employer were FAR better than what I had at the bank.  Instead of having to go to the University Hospital in Birmingham, AL for a transplant, I would now be able to have a transplant in Atlanta.

So my big takeaway is this:  I don’t always understand why I make the decisions I do. Sometimes I question my sanity when I make a quantum leap on faith.  I don’t give a great deal of thought to whatever I’m about to undertake or where the journey will end.  I simply listen to the small, quiet voice inside of me when it says “go.”  I knew the minute I arrived at the Mason Clinic back in 2014 that I was in the right place and would be accepted as a patient.   Psalm 46 has been rolling through my mind today, especially 46:10.  So I will be still and know that God is in control and trust in Him to provide for me.

I read a wonderful article on CNN written by a young woman who works as a chaplain in a hospice setting.  It caught my eye because I wondered, when I read it, what things would I be thinking of and talking about as a I got closer to the end of this disease process.  I’ve included a link to this article below:

What People Talk About Before They Die

Every day I think or worry about at least one of these things:  what will happen to my husband and family after I’m gone?  Are my grandchildren old enough to remember me when they’re grown?  How do I make meaningful memories with my family?  Should I buy this new pair of pants, cell phone, earrings or should I wait until after I have a transplant?  Will my successor at work have all they need to be successful in this job?  Did I send all my insurance/banking/investment account information to my husband?  Where will I be buried and why don’t I have a plot yet?  Fun fact:  there is a lovely cemetery in Peachtree City that’s right next to Steinmart.  I really feel like that’s where I should repose in the afterlife.

And I worry about crazy things – will the next woman who occupies this house appreciate the time and effort I put into decorating it?  As if our home will become a shrine to my interior decorating skills and enjoy museum quality preservation.  I can see it now, red velvet ropes cordoning off certain areas of the house as the docent conducts a walking tour.  Or worse yet, will this new woman think I was a lazy slob because the house isn’t as clean as it used to be?

The more practical things I think about each day go like this:  how yellow will this blouse make me look?  How big is my stomach today and will this skirt and/or pants fit?  How sick will I feel if I eat this?  How many activities can I do today?  Gone are the days of getting up early, driving to Stone Mountain, hiking 6 miles, eating lunch, coming home and taking a shower, then going to dinner and a movie that evening.  Sure, I could do all those things in one day if I had to, but I’d be so tired by the end of the evening I’d be in tears.

But hey, it’s not like I’m the only one burning daylight each day.  We all are.  None of us will ever get time back that has passed (unless someone invents time travel – queue the DeLorean).  Since we don’t get “do-overs” for the time we waste, I suggest making every day count.  Find something, anything, you can do for others that brings love, comfort, joy, encouragement, happiness or laughter.  These are the things I imagine we’ll look back on when our number is finally called. The proverbial “life flashing before our eyes” phenomenon.

All Hail the Queen!

The past 9 days have been nothing short of amazing.  I returned to work and survived the week.  My coworkers and fish seemed to miss me.  Did I mention we have a fabulous aquarium in the office?  Speaking of fabulous, FOUR people reached out to let me know they have either contacted the living donor coordinator or were going to.

How do I thank these people who are willing to be screened; who are offering something so incredibly selfless?  Not to mention all the people who have already offered to donate who didn’t meet the criteria?  I am humbled, awed and overwhelmed.  It’s comforting to see the love of God permeating, infusing and flowing through others like a dazzling array of light.  Notwithstanding, I must confess that even though I want to go to  heaven, I’m not sitting at the front door with my bags packed waiting for the shuttle to pull into the driveway.

I know heaven is beyond anything I could ask for or imagine, but I only know this earth.  For 52 years, this is all I’ve known.  Everyone and everything I love is here: my families (through birth, marriage, church, work and my friends) are here.  All the flowers, trees, mountains, valleys and oceans are here.  All the animals of the earth are here.

I’m not ready to say goodbye to Stan, the love of my life or his children and grandchildren (my stepchildren whom I love as my own).  I’m not ready to say goodbye to my mother and stepfather, my sister and brother-in-law, my stepbrothers and stepsister and their families, my aunts, uncles and cousins and friends; especially those who have always been in my life and are family as legitimately as if through birth.

I want more time to Love my people.  Without love I am nothing and a life without others to share it with is meaningless.  As always, thanks for walking this journey with me.

All Hail the Queen – Brenda

After several conversations with people interested in learning more about the live donor process, it occurred to me that I hadn’t provided any information on my site.  I’m usually not this vague and cryptic, especially when it comes to life and death scenarios.  I mean, it’s not like I’d call 911 and say “please send an ambulance to my house, I’ve been shot 5 times” and then hang up.  But that’s pretty much what I did here.  #infohoarding  #DERP

OK…so here’s the skinny:  I need to find a  person in reasonably good health who’s 50 years old or younger and has type O blood.  The wonderful staff at the Mason Transplant Clinic have a living donor coordinator and her card is listed below.  **UPDATE 10/27/17 – I have a new living donor coordinator and her name is Julie Pfeiffer.  Her number is 404-605-2950 and her email address is:  julie.pfeiffer@piedmont.org**

It’s been difficult to throw my drama out on the Internet for the world to see.  How do you ask for a portion of someone’s liver?  I’d have a hard time asking a stranger to borrow a dollar at a gas station, so this is WAY out of my comfort zone.  I even feel bad referring to my “readership” as strangers — after all, you’re just friends I haven’t met yet.

I aim to fix that in my next post.  There is so much more to me than this disease.  I don’t want to be reduced to a maudlin Debbie Downer soundbite.  I am Laffingcat for crying out loud!  (more on that to follow).  My next post will contain photos of my family, my life and all the reasons I want to spend more time on earth.  Thanks for reading my post and walking this journey with me.

All Hail the Queen

I’ve been battling liver disease since 1992, at least that’s when I became aware I had a problem.  To be fair, I had a lot of problems in 1992, usually making spectacularly bad life choices at every turn.  However, this disease (Primary Sclerosing Cholangitis) was the piece de la resistance!

For the newbies, PSC is an autoimmune disease whereby your own body attacks the bile ducts within your liver, destroying them.  The disease always leads to organ failure and there is no cure nor medications available to stop the disease.  The only cure is a transplant.  Fortunately, it’s a slow moving disease, hence this post in 2017.

It would be fair to say PSC is my arch-enemy. But like all enemies, I’ve learned a lot about myself from it and it’s brought about some very positive changes. There is something invigorating about engaging in a life and death struggle daily – it sharpens your senses, helps you focus on the critical issues and is incredibly freeing.

With heightened clarity, petty things fell away and pressure I felt to do this or that melted into the background.  I focused all my energy on battling this monster.  It brought about complete sobriety (22 years and counting) and swung my path back to the Lord and the Church.  I give thanks to my God always for allowing me this much time on earth and pray daily for more time.

Last week I spent a few days in Piedmont Hospital Atlanta on the Transplant floor battling an infection in my bile ducts.  My liver disease has progressed to the point it’s considered “decompensated” — another word for “this ship is sinking.”

For the briefest of moments, I thought I was going to hit the magic number of 25 or more on my MELD.  At that point, I could conceivably have a transplant.  I’m stubborn by nature and apparently so is my liver.  My MELD wouldn’t budge above 21.

I spent some time walking the floor at Piedmont because there is only so much time you can spend in an uncomfortable bed tethered to an IV dispenser.  I invite you to walk with me on this journey as I search for a living donor and/or wait for my MELD to rise enough to qualify for cadaveric donation.  Thanks for taking the time to read my first blog post!

– Brenda