The Bilirubin Queen

Insulin Resistance

In early January 2022, I knew that something was wrong.  I was exhausted, pale, having continual ulcerative colitis flares and feeling generally unwell.  It was a lot like liver failure, and it scared me to death. Fortunately for me, I have a great sense of smell which lead to my diagnosis.  One night after a particularly carbohydrate intensive day, I noticed my urine smelled like Cheerios cereal.  Initially I thought I was imagining this, but the following day when I awoke and used the restroom, I smelled it again.

I Googled potential causes of sweet-smelling urine, and everything pointed to diabetes.  I called my husband and asked him to bring a glucometer home from his office so I could test my blood.  The test revealed a fasting blood sugar of 138 and I promptly freaked out.  I made an appointment with an Endocrinologist and alerted my transplant team.  I was told hyperglycemia is a known side effect of Tacrolimus and that roughly 33% of all transplant patients go on to develop diabetes.

My first appointment with the endocrinologist revealed slightly elevated blood glucose. The doctor wasn’t alarmed or particularly impressed with my blood sugar reading (I wasn’t fasting), so she called up the results of my 90-day lab draws and looked back over a few years to see the trend.  Thanks to the amazing Epic Portal, the results of all my lab draws are on record dating back pre-transplant.  The doctor noticed my glucose had been steadily rising and was now hovering on the high end of normal (99) or slightly elevated at each draw. My A1C has always been normal, so she wasn’t alarmed.  The doctor ordered a glucose tolerance test, and I was off on a new adventure. 

The test revealed I was insulin resistant and pre-diabetic, so we discussed strategies to lower my blood sugar before resorting to medication.  The drug commonly prescribed to treat pre-diabetes is hard on the liver and can cause damage.  If there is one thing I’m not willing to do, it’s damage Grace.  She and I are crushing it – she’s pretty amazing.  I’ve done liver failure and do not recommend it to any of my readers.  Just say no. 

I met with a diabetes educator and began a highly regimented diet. Over time, I’ve discovered exactly how many carbs I can consume in a day whilst maintaining normal glucose levels.  I quickly realized my daily eating habits/preferences were the “Diabetes Hell” diet, although at the time I thought it was a healthful one.  I ate vegetarian 5 days per week, eating mostly carbs, vegetables & fruits.  Overnight, I switched to high protein, vegetables, nuts, seeds and dairy, consuming more meat and eggs than I ever thought possible. I cut my carb consumption by 75% and eliminated all refined/added sugar. 

It was BRUTAL!  The first three weeks I thought I was going to die (and wanted to) because I wasn’t able to eat anything I wanted.  For the first time ever, I was afraid of food after loving it all my life. My whole life was planned around food consumption for the delight of the senses.  To shift to a style where I ate to live, was a huge challenge.  There wasn’t much joy in any meal I ate.  Food used to be my hobby and now it was poison. Within 40 days, I lost fifteen pounds and my clothes were hanging off me.

I was taking my wardrobe in batches to be altered.  It wasn’t so much the weight I lost, because 15 pounds isn’t a huge amount, but I leaned out in a way I didn’t anticipate. A modified keto diet will strip every last bit of your girly curves away.  I now jokingly refer to this time as the “Assless Existence” period of my life.  Any hope of recovering my pre-transplant, honky-tonk badonkadonk is gone for good.

But alas, there was a silver lining:  my blood sugar can be maintained with diet and at this juncture, a year and half later, I am not on Metformin and my liver enzymes are normal again.

As always, thanks for walking this journey with me. 

All Hail the Queen –

* This post was previously written in 2022 but not published (hackers took over my site and I quit posting all together). Now that it’s fixed, I’m catching up. Thankfully it wasn’t cancer, stay tuned for the reason why in my next post. *

I am fast approaching the 4-year mark in my transplant journey.  Other than an early set-back of a herniated small bowel, everything has gone swimmingly well.  Over time, my labs have become more stable, and I even reached a point in 2020 where my bilirubin was a normal value (1.0 for those who wonder).  My transplant team have helped me through every stage and have had nothing but good reports and encouragement.  They are pleased with how well I’ve done.

Over the past six months, I have felt exceptionally well and had so much energy.  I felt as if I had reached a state of complete wellness.  It was a strange and curious state of being that I realized I had never felt before.  It’s hard to put into words how hard organ failure is on the body.  It takes a toll on both the body and mind.  So, you can imagine my concern when I had routine labs pulled in October 2021 and the majority of the values on my CBC were off – including my hematocrit and hemoglobin.  I asked my transplant nurse about this, and she said it was “normal.” She added that unless I was bleeding profusely, there was no need to worry.  She obviously doesn’t know me (or how to read an abnormal lab value on a report).

Then November came. Our daughter, her family and my sister stayed with us for the wedding of our son (another amazing milestone I experienced thanks to my donor).  Our two youngest grandchildren were with us for a week, and both were very sick.  The entire house came down with whatever they had – including the bride.  My husband, who is never sick, missed two days of work and was sick for 3 weeks.  I was actively sick for 45 days, but it seems to have moved on.

In January 2022, I had my labs pulled and the CBC looked worse than it did in October.  Nearly all values were off, with my hematocrit and hemoglobin continuing to fall.  But that’s not the worst part:  one of my liver enzymes was too high (alkaline phosphatase).  This is the first time my liver enzymes have been elevated since the transplant.  Add to this, I’ve lost weight without dieting, have night sweats and gut pain.  To say I’m scared and upset is an understatement. My biggest fear is that my initial disease has returned or worse yet, the big “C”.

My transplant hepatologist thinks this is gut related versus my actual liver and I’m hoping he’s right.  Either way, it’s a scary development and one I’m not wanting to face.  While it did energize me to fight the PSC battle and get through the transplant process, it’s not something I think I could do again.  It was a hard, painful process – plus it’s scary and depressing.  Not to mention, I don’t want to be the sick person battling a huge, genetic assassin AGAIN.  I’d like to continue being well, enjoying my life and experiencing new things. 

I have an appointment with my regular GI doctor at the end of this month and I’m going to ask for imaging tests.  It’s a humbling reminder of the zero control we have over our lifespans.  I was able to artificially extend my life with the incredible gift of a donated liver, but it is certain I will not live forever.  Dear God, please give me the strength to face whatever is coming and fight it with all that I have.

As always, thanks for walking this journey with me. 

All Hail the Queen –

Aside from weekly and then monthly blood draws, the first few months after my transplant were unremarkable. With the help of Prograf, Cellcept, Prednisone & MANY other meds, my body was “jelling” with Grace. This wasn’t the case for many of the transplantees I follow on Instagram who suffered rejection episodes and other illnesses. Apparently my body only hated its own liver and settled down once she was gone. #drama

After 90 glorious days of paid disability, I received the “ok” to return to work by the Transplant Team. They would have allowed me 6 full months to recover, but I was afraid of losing my income & benefits. I can’t tell you how much I DREADED returning to work! I had just spent 4 years in a toxic and hostile workspace, reporting directly to manager who was both cruel and a bully. Did I mention she despised me? Oh happy day! But fear not, gentle readers – all’s well that ends well.

There is a scripture I love (Genesis 50:20) in which Joseph, who was mistreated by his brothers comes full circle and is triumphant. The terrible way they treated him actually worked out to his advantage. Such is the case with my benefits. My silver lining was a $467,000 surgery for $100. Yes, my out of pocket co-pay for an ER visit was only $100. The rest of the surgery was covered by my insurance. There aren’t enough words of praise to thank God for His provision and Mighty Deliverance in my health and work situation in 2018. When I say He moved mountains in my life, I am sincere. #1Samuel17:37

But I digress. On day 91, I made my triumphal entry back at work only to have emergency abdominal surgery less than 24 hours later. The day started with a wonderful welcome back party, balloons, flowers, green transplant awareness pins and well wishes. However, as the day wore on, I started experiencing pain all throughout my belly. The most alarming part is the pain was concentrated under my ribcage very near my new liver. It was like my worst nightmare coming to pass. I wondered if my body had finally decided to reject it’s newest occupant.

By the evening, my pain level was through the roof, so off we went to the hospital. When we arrived at the ER, it was so bad I was sweating, nauseous and literally writhing in pain on the triage treatment chair. The ER was packed so I waited at the nurses station for a while; mercifully I was given a shot of Fentanyl for the pain once I began squatting/kneeling on the floor, hanging on to the edge of the chair.

Can we talk about Fentanyl for a minute? This drug that is powerful enough to kill people instantly on the streets (who take it illegally) worked for approximately 20 seconds. In other words, it did NOTHING for my pain. I’ve drunk glasses of lemonade that were more soothing than this medication. Hours later, a CT scan was done and my original transplant surgeon was called to review the results. Dr. Pollinger explained that a hole had opened up in my Omentum and my small intestine pushed through it and strangulated. I was told this was a life threatening situation and I’d be having surgery immediately.

It was hard to process having another abdominal surgery 91 days after a transplant. My body was healing nicely and I was starting to feel better. The doctor explained he would be opening the original suture line and most likely wouldn’t have to reopen the entire healing site. I was not thrilled with the prospect of healing that scar again, but was in so much pain I would have said yes to anything. There was a bonus to this though, at least 60 more days of healing on the cellular level, which exponentially increases your caloric need. I’d revert back to 4,000 calories a day within a week. Whooo Hooo!

The surgery went well and Dr. Pollinger was able to access and repair everything only opening the horizontal suture line. When I woke up I realized I wasn’t on a ventilator and didn’t have staples across my belly. I can’t tell you how happy that made me (although you can’t tell from the photos). It was more than a little worrisome to look down at my stomach and realize the huge gash running from one side of my stomach to the other was sealed with superglue and steri-strips. Thankfully it was a LITTLE easier to recover knowing what to expect. But the real silver lining was 30 more days off from a job I really did not like.

From this point on, my recovery has been smooth sailing. My blood-work is great, I’ve had no rejection episodes or recurrence of my original disease. As each year passes, I feel healthier and more vibrant. It’s been a wonderful and curious thing to have more stamina and feel so “alive” as I chronologically age. It took almost two years to get used to having more energy and the ability to accomplish more daily. Nowadays if my house looks like a dump, it’s because I’m lazy, not dying. LOL

The disease has taken it’s toll on me, but most of that is internal and not visible to others. I’m not nearly as strong as I used to be, but that might just be my age and lack of physical exercise. I look older than my peers, but I’ve also walked to the end of my life and peeked over the ledge, so I’ll cut myself some slack on that one. Whenever I feel “old” I remind myself that a lot of people waiting for a liver back in 2018 didn’t make it. The lady who gave this precious gift of life to me didn’t make it either. It’s my hope that every day, I conduct myself in such a way that honors my God and the tremendous sacrifice another family made for me.

So I leave you with this: honor your body, take exceptionally good care of yourself. Your body is your literal “home” on earth and you are the sole steward of it. Drink plenty of water, eat a balanced diet, get enough sleep, protect your skin, don’t pollute your body with drugs and alcohol. Enjoy and appreciate all the beauty around you, laugh as much as you can. Smile and love your fellow man, be merciful and forgiving. Lastly, sign up to be an organ donor and live on as the hero of someone else’s story when yours is over.

As always, thanks for walking this journey with me.

All Hail the Queen!

In January, my liver failure rapidly accelerated along with its side effects – ascites and a horrifying new shade of yellow.  One fateful Sunday (1/21/18), after a jaunt to a Maternity shop to buy pants that fit, I hit the wall.  That evening, right after church, I asked my husband to drive me to the Emergency Room.

Turns out, I was dangerously anemic and had gained 18.5 pounds of water over a 2 month period. The lower lobe of one of my lungs had collapsed due to the fluid in my abdomen pressing against my diaphragm.  My MELD (which had been a 24 courtesy of a few exception points) had risen to 28.  I was now in the Transplant Zone!

The decision was made to admit me; however, there were no rooms open on the transplant floor, so I spent the night in the ER in the only room they had (used for psychiatric hold/evaluation).  How fun. The door to the room was solid wood with a tiny rectangular window with shades inside the window pane. The bedside remote only called the nurses station, no other buttons worked.  The TV was mounted close to the ceiling and had to be turned on manually – my husband stood on a chair to reach it.  The TV and medical equipment sat in a recessed area with a metal door that could be rolled down to close off the room if needed.  The bright light directly above me couldn’t be dimmed or turned off, but I was assured the close circuit cameras were not recording.

I was given diuretics to begin the process of wicking fluid off my body.  Naturally the bathroom IMMEDIATELY to the right of my room was out of order, so I had to trot halfway across the ER to another one conveniently hidden behind a wall.  This went on all night until a room opened up in the hospital.

Once on the transplant floor, I lost 18 lbs. in 3 days and received two transfusions.  The first two in my life!  I had to sign an elaborate consent form to receive blood products and the process itself was interesting. It took two people to cross check and record the serial numbers of the blood that is now forever linked with my medical information. I was impressed by the controls the hospital and blood bank have in place to trace blood products through the entire life cycle.

Once the cross-check was done, the nurse attached the tubing from the transfusion unit to my existing IV line.  When she did, some of the blood flowed on to my gown and the back of my hand.  I had this “Oh $#!@%” moment where I panicked because I had someone else’s blood on my hand.  I was about to jump up, scrub my hand with bleach and run to the HIV testing station when it occurred to me that the blood was already flowing in my veins.  Did I mention that the nurse stood by my bed for 10-15 minutes to ensure I didn’t have a severe allergic reaction?  But here’s the amazing thing – within 10 minutes I started to feel better and became warmer.  By the second IV, my cheeks turned pink again.

Unfortunately, due to the excellent medical care I received, my MELD went back down to 21, but I was allowed to retain my 3 exception points.  I left the hospital 3 days later and felt so dejected that my time hadn’t come.  I sat in tears at the exit door (with two new mothers clutching their babies), both looking at me with wary eyes.  The mother sitting closest to me actually pulled her baby closer to her chest and covered his head with a blanket when she saw how yellow I was.  It felt like a slap to my face – I wanted to tell her she couldn’t catch what I have, but it wouldn’t have done any good.  And I’ve got to say, if the tables were turned, I would have done the same thing with a newborn.

Fortunately, the story doesn’t end here.  Please read my next blog post titled “The Call”

As always, thanks for walking this journey with me!

All Hail the Queen

Of course, I’ve known that for years!  But before that, let me recap this last week.  (I’m taking over the keyboard while Brenda rests from her harrowing week.)

Before anyone even thinks that I shouldn’t share some of this, I do it with Brenda’s blessing.  After dealing with this disease for so many years, she’s come to accept the physical eventualities that come with it – some not so pretty, many painful and yes, some that just bruise the psyche.

<cue the bad dream music> Last Sunday, the 21^st of January 2018, was a day that Brenda had dreaded for years.  Ascites, the physical accumulation of fluid in the belly, is not a fun symptom of liver failure.  When we actually found out just how much fluid had accumulated, it was a shocker, but more on that later.  Anyway, there is no road around ascites.  If you have liver failure long enough, it is going to happen, even if you obey all the dietary restrictions (this will come as no surprise to ANYone who knows Brenda, she is a stickler!) So, on that fateful Sunday afternoon, we found ourselves at a Motherhood Maternity shop, perusing the shelves for maternity pants.

Brenda has maintained a rather svelte figure, but when her white hair and “4-month pregnancy” belly held in with an extra rubber band around the button of her pants, stepped into the store, the young salesclerk was at a loss, but to her credit, handled it with aplomb.  Hey, Brenda even scored some “freebies” that ALL of the expectant mothers receive when they make a purchase!  I later told Brenda that the actual shock of purchasing the maternity pants was the deciding blow that sent her to the emergency room later that evening, breathless, fatigued, pale and with eyes the color of candy corn.

Long story short, after removing 23+ lbs. of fluid weight from her belly and transfusing two units of packed red blood cells she was allowed to go home three days later, in possession of a stricter diet and fluid restrictions.  What fun!

All of the above is just to bring you up to speed.  I’m sure she will cover some of this ground in her next post, as only she can!

The real reason I’m writing this is to say things that Brenda can’t or won’t admit.  In short, Brenda is one tough, and I might add, beautiful, cookie.  As I write this, almost exactly 18 years has elapsed since Brenda shared the tearful news with me about her disease.  You see, we had only known each other approaching 4 weeks.  (Insert story of how we met here…believe me, it’s a GREAT story!)  But what a joyful and exhilarating 4 weeks it had been.  And yes, when you know, you know and we knew that we knew.

I will never forget the tears in her hesitant eyes as she took my hand and told me that she was dying from a liver disease whose only “cure*” was a liver transplant that she was unsure would ever happen.  She was not even thinking five years.        (*) – cure is such a nice term don’t you think, suggesting forever, “out with the bad, in with the new,” disease gone, kaput.  In actuality, once the offending liver is removed, her body, still harboring its autoimmune ill will, will start attacking the new one immediately.  But talk about a do over!  Turn that liver clock back and pray for 20+ more years of life pampering the new one!

Well, as I said, when you know, you know.  And I knew that I wasn’t going anywhere.  I wiped my tears (I’m prone to that – ask my kids) and told her that I was certainly NOT going to bypass even 6 months of getting to know her better for fear of her liver giving out on her.  So, 18 years later, almost to the day, here we are.  Let me tell you, even I (Mr. Pollyanna, as she calls me) underestimated what joy and love and laughter and living and tears and challenges and victories those 18 years would hold!  I’m not about to miss the rest.

I wanted my time at the keyboard because I want you to know that Brenda is the bravest person I know, and I’m not even referring to hinky livers.  I’ll try not to get all sappy (fat chance!) but as the days and months unfolded, I was awestruck as I learned of all the adversity that Brenda had faced and stared down in her lifetime.  I am NOT making light of it at all when I say that it would make a good book. But those stories are solely Brenda’s to share.

Perspective…that’s how I described it to her.  Her roller coaster life had provided her with unabridged volumes of experiences, trials and yes, plenty of danger.  And yet, she sought help, she learned and she won!  She ran through the potholes and came out the other side, with clarity and purpose and victory.  Perspective.

When I met Brenda for the very first time, she was seeking truth, THE truth.  That’s a big admission on a first date.  Back to that bravery thing – she embraced the truth when she found it and that has positioned her in the best place of all, full of love and boundless fellowship,  prayers and yes, even more perspective.

Did I mention that my wife is # 1?  I thought I did.  In my life, she holds that distinction for life.  In liver transplant circles, she’s # 1 on Piedmont’s transplant (type O blood) list for at least 24 more hours.  Her score may rise or fall but by faith and a literal globe-circling array of people praying for her, this is going to happen.  Thank you for reading. Thank you for caring.  Brenda has described this fight as a journey and that is exactly what it is.  It’s been uncertain at times… just how long would it take to arrive…exactly how bumpy would the road be…will it get worse?  How will it end?  In all likelihood, the next few turns bring us home.  Thanks for riding along.

Stan

Blogging in my Recliner

A lot has transpired since my last post.  I was granted MELD exception points and now my score is 24; this is good news as it puts me within 1 or 2 points of being able to receive “the call”.  This happened on December 24^th, so that was a nice way to end the year.  It couldn’t have come at a better time as I’ve been feeling worse lately.  The jaundice is deepening and now I have two new health issues to deal with:  a giant belly and deliriously edematous feet paired with a matching set of cankles.  Suffice it to say, end stage liver failure is NOT a sexy disease.

Aside from looking gross and disgusting, the swelling in my abdomen is surprisingly painful.  It stings the higher up it goes and it’s risen just above my lower ribs.  Everything leaves me short of breath (and not in a “wow! How exhilarating” type of way).  Daily meals have become a multi-step process whereby the following questions must be answered before the first bite or sip:  1. How hungry or thirsty am I?  2.  How bloated/swollen is my stomach right now?  3.  How much can I consume and still be able to breathe, sit up straight and not be in constant pain until the food moves down my intestinal tract?

My feet, which started to look horrible 2 years ago with all the burst capillaries, now look heinous.  They are so swollen that the puffy TOP of my foot will bubble out of my flats.  Since I’m anemic, my foot looks freakishly white – which makes the swelling look like the head of beluga whale or an old timey spat worn over a black shoe.  For my young readership who might not know what a spat is:  do a Google picture search on Mr. Peanut and look at his feet.

I have 4 pairs of pants I can still wear and they’re all leggings.  I’ve been looking at maternity clothes which seem to fall into 3 categories:  1. Too Young for Me (interesting fact:  most childbearing women are not in their early to mid-50’s)  2.  Jeans with holes in them (super cute but not suitable for work)  3.  Very nice, but crazy expensive.

I still have a few pairs of jeans I can wear because they are low rise and my stomach can hang over the top of them (just like that man who still wears the same size jeans as in high school, but is 50 lbs heavier).

I’m judiciously watching my sodium intake to try and reduce the swelling.  Mrs. Dash, fresh lemon juice, garlic powder, rice vinegar and Portuguese Fermented Red Pepper Flakes have become my best friends.  I’m hoping at my next appointment with the Transplant Group that they’ll put me on a diuretic as well.

I like to end my posts on a positive note, so here goes:  yesterday, my step-sister was in town and we got together for breakfast at Ria’s Bluebird in the Cabbage Town area of Atlanta.  The company was wonderful and the food divine!  I’ve included a photo (please note the tragic, tightly curled hair courtesy of the only set of hot rollers Target had in stock Friday night).

Thanks for walking this journey with me!  All Hail the Queen…

Every now and then, it’s refreshing to see a physician who doesn’t see terminally ill patients (in various stages of organ failure) every day.  Normally when I walk into the Transplant Clinic, with my newest sequela – or harbinger of doom as I like to think of them, I’m met with blank stares or utter nonchalance.   So my urine is the color of dark, brewed tea or watered down coca cola – yep, everyone with liver failure has that.  And the whites of my eyes are the color of Dijon mustard – yep, everyone with liver failure has that.  Whenever I voice concern about my ever deepening jaundice, I’m told there are patients with eyes that are neon or school bus yellow.  Talk about an exciting stage I’ve yet to discover!

I’ve stopped complaining about my ever-expanding belly because I’ve seen rail thin men in the waiting room who look like they are 12 months pregnant with twins.  Everything hinges on my MELD which refuses to climb.  I guess it’s as tired as I am every day.  So we both schlep through life, going through the motions, trying to get to the end of the day where a warm bed awaits. It’s hard for me to imagine I was once an exercise junkie.

But I digress.  Today’s visit with my primary care physician was to do blood work so they can continue to prescribe Fosamax.  At the ripe old age of 52, I have osteoporosis of the spine and osteopenia in my hips.  Primary Sclerosing Cholangitis is like the 12 days of Christmas in Dante’s Inferno.  Before my bibliophiles freak out, I know there are only 9 circles of Hell in Dante’s story, so we’ll have to front load 3 day’s worth of gifts into the first circle.  Go with me on that one.

When the physician’s assistant came in the exam room, she REALLY looked at me.  She shook my hand and never broke eye contact as she asked questions about my health history.  I see this person once a year, so the changes she sees are big.  She stopped mid-sentence and asked me “Do people ever tell you that you look jaundiced?” and I told her about my “person” at work with who literally said “Oh my G_d Brenda!  Are you wearing yellow make-up?” When I say my “person” I have this fabulous colleague with a keen eye who looks at my face every day and will tell me when I look particularly yellow.

The P.A. went on to examine my stomach and as she was pressing on my liver AND spleen (which are both enlarged and poking out from under my ribs) she said she wished they had a medical student there so they could feel my stomach.  I had a similar experience the last time I went to the dermatologist.  I see a P.A. there too and she teaches classes at Emory.  She was impressed (but not in a dazzling Hollywood way) by the color of my skin and eyes.  She said she wished she could take me to class to show her students what text book jaundice looks like.  I told her to take a picture and share it with them – and she did.

So I’ve got that going for me.  I may be the most marginally interesting patient in the Transplant Clinic, but I’m an albino peacock strolling through the Rain Forest to all the Physician Assistants I encounter.  So if nothing else, this disease has produced teaching moments for people I never dreamed I’d cross paths with 25 years ago when I was first diagnosed.  #silverlinings, #PSCblows, #NeedANewLIver, #Sistergoldeneyes

— All Hail The Queen