Gene’s Story

Site created on April 16, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Gene Leppala is a 49 year old husband, father, brother, son, and friend to all who meet him.  He also needs a new liver. He was diagnosed with cirrhosis of the liver February 2014. Since then he has been able to manage his condition mostly through medications and diet, but has had numerous medical appointments and procedures to treat the complications such as excess fluid in his body, jaundice, portal hypertension, ruptured varices, and hepatic encephalopathy.  He was hospitalized 3 times in the last 4 years due to complications.

In early December  2017, Gene’s gastroenterologist referred him to the Mayo Transplant program  in Rochester, MN. He has been through multiple assessments and is now under their care.  He has blood work done weekly to keep them updated on his ammonia, sodium, bilirubin, creatinine, and INR levels, the last 4 making up his MELD  (Model for End-Stage Liver Disease) ‘score’ The MELD ‘score’ defines how urgently one needs a liver transplant in the next 3 months. He is currently waiting to be listed on the liver transplant list at Mayo in Rochester MN.   Gene and Carolyn will be going to Rochester again June 2018 for follow-up appointments and will hopefully listed on UNOS (United Network for Organ Sharing). Once listed, we will wait for the call that there is a new liver. 


After the transplant, he will need to stay in Rochester for a month with at least 1 caregiver. Gene’s wife Carolyn and sisters, Lori and Kelly, will share that responsibility by taking turns staying in Rochester. Once home he will still not be able to return to the workforce for several months, and will need to be looking for all new employment.

Until May 2018 Gene was working full time and had insurance through work.  Unfortunately he was let go from his job . He has days he feels great, and others where he is tired and weak and would not seem hireable to employers.  He will be applying for social security, unemployment, and whatever else he can.

He will also not be able to participate in the care of his 2 daughters, who both have their own medical, developmental, and mental health conditions.   Their oldest daughter is on the Autism Spectrum as well as having celiac disease and general anxiety disorder. The younger daughter has growth and cognitive delays associated with autoimmune hypothyroidism (Hashimoto’s) and celiac disease.   These conditions requires multiple therapies for both girls each week, as well as maintaining a completely gluten free household.

We will have multiple medical as well as household bills accumulating.  Carolyn will also be missing work when she needs to be caregiver. Our families can and will offer as much help as they can.

We will take you on this journey with us, and keep you as updated as we can.


                                                                                                      ****Specifics of Complications and Symptoms***


Excess fluid in his body. Ascites and swelling have been mostly controlled by a low sodium diet and medication, but at one time he did require a procedure to drain the fluid from his abdomen.  Recently he needed an Albumin Infusion due to his Ascites.

Jaundice. Jaundice occurs when the diseased liver doesn't remove enough bilirubin, a blood waste product, from your blood. Jaundice causes yellowing of the skin and whites of the eyes and darkening of urine.  Gene has been jaundice for about 2-3 years.

Portal hypertension. After having an allergic reaction to a blood pressure medication which caused him to break out in psoriasis plaques over 70% of his body, the doctors found the correct medication for his portal hypertension, which is a high blood pressure in the vein that goes from the liver to the heart.   Due to the pressure, he did have a varice rupture on his esophagus which put him in the hospital for several days. After that, his doctors did endoscopies (looking down the esophagus with a camera to look for and “band” and varices so they cannot rupture) every 4-6 weeks until they were confident that once a year would be safe.

Infections. Gene has been more prone to infections and illnesses as his body cannot fight them off as well.   This winter he has been suffering a sinus/upper respiratory illness for several months. Post transplant he will be extremely susceptible to infections and will be on medications or that the rest of his life.

Hepatic encephalopathy.  In February Gene was hospitalized again when the ammonia levels in his body got too high.  He was given another medication to help prevent the buildup of toxins in your blood due to poor liver function.  His liver can no longer effectively filter these toxins and when they go to his brain he can experience mental confusion and difficulty concentrating. Hepatic encephalopathy symptoms may range from fatigue and mild impairment in cognition to unresponsiveness or coma.  He has been given another medication to help remove toxins from his system.

Thank you!



Newest Update

Journal entry by Gene Leppala

Whether it feels like yesterday or a batrillion eons ago, it has been four months since my liver transplant.  Drove down to Rochester on Sunday night with my Wife and kids.  I figured that since the girls were all off school for Got MLK Day, we could head down and hang out around a pool and I could just wake up already there and get dropped off for my breakfast club blood and urine labs instead of doing the drive at dark thirty in the morning.  It was a full day of scans and images.  I just pranced about the buildings from one thing to the next and the kids got to swim, play Ms. Pac Man, and drink Orange Juice on a treadmill.

They took a really good look around at my liver, spleen, kidneys, and non-existant gall bladder to make sure that is still not there.  Blood flow through the liver is one the key points they focus on.  Especially and the surgical connection points.  Narrowing and potential clotting are the main deathly dangers that they are looking to avoid.  My ultra sound human was just simply fairy tale cute and super funny.  So, that and some warm lube usually equals a reasonable good time in a hospital.  She started in some other areas, but when she got to the liver area the first words out her mouth were, "Well they did a really good job on you didn't they."  So, that is usually a grand sign.

I got my bones scanned with this cool mechanical arm scanner.  Kind of resembled a large media printer like for architectural drafts and wall size poster art.  Apparently, through multiple years of liver disease your body sucks the life out of your bones leaving you a little future brittle.  As it turns out, that effect was super minimal for me so I won't be turning to vampire dust at some point in the future or shattering my humerus tripping over a toothpick.  That would not be humorous.

Two and half hour kidney function test.  Really important stuff.  The giant volume of drugs that they cram into you for months to keep you from vomiting out your new liver visitor takes some serious toll on your kidneys.  They watch all the associated blood tests closely forever.  This particular one has to do with being injected with zombie juice and peeing a bunch to see exactly how things are going.  The television entertainment during this multi hour stretch was exemplary.  Besides your random run of visual offerings you had a square dancing channel, rodeo funtime, and TV from all across the globe.  I think I learned "What the hell was Trump thinking?" in some Arab dialect.

I also signed up for a transplant muscle mass study.  So, I got to see the girl in charge of measuring my legs and scanning the depths of my tissues again.  Much I could say about her, but I think I will let that one be.  It is always an escapade.  She thought something was wrong at first.  She remembers me well but my measurements were way different.  I have lost over 45 lbs.  While I was doing my six minute hallway walk that is part of the test along with grip strength and skin pinches, I ran into my happy janitor from when I was staying in post op for however many days.  He was so genuinely happy to see me.  We got along so well.  His English was better than my Spanish and he stood there with a smile the whole time I walked up and down the hall.  Very cool.

We drove back that night to get the kids to school in the morning.  Saw the news that they had closed all the schools south of us on the way to Rochester due to a looming snow event.  My Wife and I made our way down early.  Day two was a day to talk to everybody about results.  Got my Chest X-Ray wearing the cutest new bib poncho.  Spent some between time wandering around tunnels and eating cinnamon rolls while slurping coffee between appointments.  There was a cool blues band playing on Monday, but no major Mayo entertainment that day.

Anyway, big time meetings with Danielle and Tammi.  My Nurse Coordinator and my Post Transplant Surgeon's Assistant.  They really couldn't say enough about how good all of my labs have been since day one.  Beyond anything that they ever expect to see.  Everything is dead in line and the couple things that are off are right where you would expect them to be due to the giant drug cocktail I have been consuming.  I had some questions about swimming.  Pools, lakes, SCUBA diving again.  I got kind of depressed seeing the girls in the pool knowing very well that the experience was a complete no for me.  We discussed the future of that and my tapering levels of being immunosuppressed.  Pools, preferable my own(not public), lakes and ocean get the green light down the road as we get past six months and closer to a year.  Hot tubs are a never again kind of thing.  Maybe if I own it and maintain it, but still risky.  It is just the right type of environment for the nastiest things to thrive.  Tammi did some physical checks and went over my lab results and images.  I didn't get too much heat for smoking a cigar after the tragic death of a friend of mine.  Smoking isn't good for anybody, and I am especially at risk for cancer, but the biggest thing about smoking is that it is a vasoconstricter which leads us back to the dreaded constriction and narrowing of the connection points of the new liver that they are most concerned about.  Discussed my future tests due to the huge prevalence of skin cancer in transplant patients.

Probably the best news was as we were going through labs.  She got to my kidney tests and said, "We are definitely going to pull these up just to take look at them because we never see them this high."  Normally in transplant patients on all the handfuls of pills you choke down as part of your Jetsons breakfast, they see numbers in the 60-70ish levels.  When it drops below 60 there is cause for concern as the kidneys are not handling what is being thrown at them.  They end up a step away from failure due to the relentless pounding and they have to find a way to deal with that.  My kidney levels happened to be up in the 117 Superman range.  So, we are calling that one a big success.

I just got whittled down to zero from a starting dose of a batcrapload of prednisone.  Already seeing that in the narrowing of my face.  She eliminated two other drugs.  Mycophenolate Mofetil and Pantaprazole.  One is one of what has been a key immunosuppressant that I have been taking 4 450mg caps a day of.  And the other is to keep my drug induced overly acidic stomach acids from burning a path to my duodenum and beyond.  That brings my daily drug input down to five drugs and a total of eleven pills.  That is child's play in my world.  My pill sorter looks like it should have a vacancy sign on it.

I am some sort of poster child with my new drug, alcohol, and depression counselor.  Impressed by how I approach my own sobriety realistically and how I have found enrichment in helping others that seek to change their own drinking habits or are having health issues.  I just spelled it all out, she said that she wishes she could tape whatever my thought string was to show to her other patients, and said I am done with you, go home. 

I think that is enough of me babbling about my wellness.  Never really out of hot water.  I am married to the Mayo for life.  The next two months are still considered a critical window.  Then we just wait and see if my latent CMV(CytoMegaloVirus) that came with the new liver decides to rear it's ugly head.  They will be on the watch for it and prepared.  At that point I hope to be about as good as I am going to get.  Off to not eat another Hershey piece or Reese's Peanut Butter Cup that has been a staple of my diet.  Chocolate is as addicting as anything.  I need to get the space suit on and walk more too.  Those two things are directives.  My Glucose is a little high.  Mostly because my body isn't buring off fa blood sugar calories sitting in my bean bag world.

Turned out that the Storm Watch 2019 was exactly that.  Watch it go by.  I texted my awesome sister to let her know we would not be stuck in Mayoland and she would not have to tend to our sitting littles.

I miss people.  If anybody wants to scoop me up and shake the dust off, I am game for anything.  I also got my restricted lift limit lifted.  Though she said don't just do 300 crunches a day.  Like that has ever happened.
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