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I’m so thankful to finally have the opportunity to share my double-liver transplant journey in hopes that it will help to raise awareness for organ donation and to encourage those who are facing transplant.

I’d like to thank Kristy, my wife of 27 years, for putting up with me during my recovery, as I was not an easy patient. She was always by my side and spent countless hours, days, and weeks and caring for me. 

I’d like to thank my family and friends who stepped up in so many ways. I couldn’t have gotten through this without them.

I’d like to take a moment to also thank my two donors and their families. I don’t know who they are, but without them, I wouldn’t be here today. If you’re registered to be an organ donor, thank you. If not, I encourage you to do so here.

Before I begin, I want to make it clear, that the story I’m about to tell is not about me. It’s about the power and perfect plan God has for my life. He’s the hero of this story… along with my surgeons and donors. What is crystal clear to me now is that God is FAITHFUL. He never leaves us. He gives us the strength we need to overcome ANYTHING. If you remember nothing else from what I say, remember this: You can TRUST Him.  Even during those dark nights of the soul. 

Alright, here goes…

My health journey began in December 1996, a year after Kristy and I were married. We were visiting her parents, and her mom mentioned that my color looked off and suggested that I see my doctor. So I did, and he referred me to a liver specialist.  

 

Photo: Circa 1997 just after my diagnosis. My checks are slightly swollen due to prednisone, a short-term immunosuppressant steroid.

Life Altering News

I still remember the day, it was February 21, 1997, when Dr. Janardan entered the room. 

He had a serious look on his face, and said these words to me: “I’m sorry to be the bearer of bad news, but it appears that you have signs of serious liver disease and cirrhosis”.

I was stunned. Walking into the appointment I was a young, healthy 26-year-old, and suddenly everything changed, and I’m now I’m facing my own mortality. I didn’t know much about the liver and I thought only alcoholics got Cirrhosis. I left the appointment, returned to work, and called Kristy with the bad news. 

Every morning I woke up with a feeling of dread. I told myself “You’re not going to die today, and you’re not going to die tomorrow. Plus Jesus said not to worry about tomorrow (Matthew 6:25-34), so let’s just get on with the day and trust Him.”

In the following weeks, I went through several diagnostic tests to determine what was causing my liver disease. I was eventually referred to the University of Michigan, where they diagnosed me with Autoimmune Hepatitis. They also told me that I should prepare for a liver transplant.

I started researching Autoimmune Hepatitis. It’s a condition that causes the body’s immune system to attack the liver which leads to scarring of the liver (also known as cirrhosis). It eventually results in liver failure. 

One day shortly after my diagnosis, I remember driving home from work and listening to the Bible when the words of the apostle James caught my ear— 

“Is anyone among you suffering? He should pray. Is anyone happy? He should sing songs of thanks to God. Is anyone among you sick? He should send for the church leaders and they should pray for him. They should pour oil on him in the name of the Lord. The prayer given in faith will heal the sick man, and the Lord will raise him up.” (James 5:13-16)  

I immediately called our pastor and asked if the elders could pray over me and anoint me with oil. 

I’ll never forget that evening at our church when several elders and deacons surrounded me and laid hands on me offering up beautiful prayers. I felt the Holy Spirit in the room. Afterward, I said to Kristy “Even if I’m not healed physically, I’m healed mentally” For the first time, All my fear and anxiety were gone…I was completely filled with peace. 

My doctor prescribed a miracle drug called Imuran which suppressed my immune system and allowed me to live a normal and active life for nearly 20 years.

Our prayers were answered. My condition stabilized and there was no need for a transplant.

After 20 years of Normalcy, Things Take a Turn For the Worst

Now jumping ahead 20 years to 2018. This is when things suddenly changed. 

It was spring break and we were on our way to visit friends in Jacksonville FL. At exactly 5:00 pm on Good Friday, I noticed my doctor’s office was calling. I had recently done blood work, so I thought “This can’t be good”. I answered and the nurse on the other line said “Jeff! Where are you?” I said we’re just outside of Charlotte NC. She said “You have to get to an ER as soon as possible! Your Hemoglobin level is dangerously low!” I said, “What’s Hemoglobin?”

Hemoglobin helps to transport oxygen throughout the body, and my level had dropped by 50%. This explained why the day before I had tried to go for a run, but became extremely winded after only running a short distance. 

Our friend in Jacksonville happens to be an ER doctor, so I texted him: “Mike, Are you working tonight?” He responded that he was, so I texted “Good, we’re coming to see you” I explained why, so after dropping Matt and Grant off at their house around midnight we drove to the hospital. Mike greeted us and conducted several tests, which were all inconclusive. 

The next week, when we were back home in Grand Rapids, my gastroenterologist scheduled an endoscopy to look down my esophagus for signs of bleeding.

Sure enough, the procedure showed that I had several blood vessels, called esophageal vericies which is a sign of advanced liver disease. Fortunately, vericies can be removed during endoscopy by placing rubber bands around them to choke them off. They eventually dissipate along with the rubber bands. I had to have this procedure monthly. 

A ticking time bomb. I looked healthy in September 2018, but the next day I threw up two quarts of blood due to my esophageal verifies which landed me in ICU for a week. .

We thought we had things under control until one Sunday morning in September 2018 when I awoke feeling nauseated. I got sick and threw up blood, so I told Kristy that we needed to go to ER. On the way out the door, fortunately, I grabbed a bucket because on the way to the hospital, I continued to throw up.

I can tell you from personal experience the fast way to the front of the ER line is to walk in with a bucket full of blood! 

The next thing I knew, I was rushed into a room where about a half dozen doctors and nurses started triage. I was then sent to ICU for an emergency endoscopy. Fortunately, the doctor didn’t see any further bleeding, but recommended I spend a few days in ICU as a precaution. 

The day of my discharge from ICU, Kristy and I met with a doctor, who we called Dr. Doom. He painted a very dire picture of my circumstances and told us we should prepare for a liver transplant. 

 

Transitioning Care to Henry Ford Hospital’s Liver Transplant Team

Because our local hospital doesn’t do liver transplants, they referred us to Henry Ford Hospital in Detroit. 

Now fast forwarding from 2018 to January 2022, We spent two intense days at Henry Ford Hospital to undergo extensive testing to ensure that I was healthy enough to survive a transplant. I passed the evaluation. We now just had to wait until my health deteriorated to the point where I was sick enough to be placed on the transplant list.

Henry Ford Hospital in Detroit performs over 100 liver transplants per year.

Here’s how the national transplant list works: 

Waiting for a transplant is not like taking a number and waiting in line. The waitlist is better described as a giant pool of patients. When a deceased organ donor is identified, the computer system generates a ranked list of transplant candidates who are suitable to receive each organ based on factors such as age, size location and how sick they are. The sicker the patient, the higher on the list they go. (pause)

Some people wait years others only wait days. There are currently over 100,000 people in the US waiting for an organ. Unfortunately, there are not enough available organs to meet the need, so over 7,000 people in die every year waiting for an organ.

By this time I was also struggling with another symptom of end-stage liver disease called ascites which is fluid buildup in the abdomen caused by the hardening of a cirrhotic liver. The liver is like a filter, but when it’s diseased, fluid backs up causing all sorts of maladies. Ascites It’s treated with diuretics and a procedure called paracentesis where a tube is inserted in the belly to drain the fluid.

By last summer I was having weekly paracentesis to drain 5-6 liters of fluid from my body. The diuretics caused painful muscle seizures that seemed to only strike in the middle of the night. It was the worst pain I had ever experienced. 

I was also losing my energy, my mobility, my mental acumen, my voice, and my personality. My body and brain were shutting down. I was so weak that all I could do was sit in a chair, work, eat and sleep. I was slowly dying. It was a miserable existence. 

I remember thinking that I had lost so much…I lost one of my friends who had suddenly passed away, I lost the ability to run, bike, golf, fish, hike and travel. I could no longer enjoy a glass of wine. It seemed like God was stripping everything away. He revealed to me that He was going to rebuild me not only physically, but spiritually. 

Kristy and I always feared transplant surgery, but now for the first time, I WANTED a transplant. I could no longer live like this.

On the Liver Transplant List

Finally, in June my transplant coordinator called me and told me that I was sick enough to be put on the transplant list. She also told me that we should have our bags packed for Detroit because an offer for a liver could come very quickly due to my rare AB+ blood type which means I’m a universal receiver–I can accept a liver with any blood type. She also mentioned that the July 4th holiday was approaching when there’s a spike in fatalities resulting in an increase in organ donations.

Now that I was on the list, I just had to wait for someone to die so that I could live. 

Sure enough, just after midnight on July 5th my phone rang. The voice on the other end said “Hello Mr Muller, this is Joe from Henry Ford—we have a healthy liver for you!”

I was thrilled and accepted the offer. I also asked a few questions: “Was the donor male or female, how old were they, where did they live. how did they die? Unfortunately, Henry Ford couldn’t disclose this information. And to this day we still don’t know anything about my donors.

Receiving this phone call was such an answer to prayer because time was running out…I’m not sure how much time I had left. Also, the average wait time for a liver is 8 months, and I received an offer in less than 10 days.

 

Kristy’s sister, Susan, and me having a little fun before entering the hospital July 6, 2022 at 4:00 AM
the morning of my transplant.

Transplant Surgery Day

We were told to be at Henry Ford Hospital the following morning at 4:00 AM, and to enter at the maternity entrance which was ironic because as you can see in the photo of me and Kristy’s sister Susan, due to my ascites I actually LOOKED pregnant.

 

 

 

 

 

This photo was taken a couple of hours before my surgery show Kristy and me at complete peace, thanks to our faith and the many prayers of our family and friends.

 

 

 

 

 

 

An amazing thing happened that morning. Another prayer was answered.

After months of anxiety, as my condition worsened, Kristy and I were completely at peace the morning of my transplant. This was an answer to a very specific prayer that I requested—that Kristy would be full of peace—that the Lord would remove all anxiety…and that’s exactly what He did as you can see from this photo! 

We physically, mentally and spiritually felt the many prayers.

A couple of hours before my transplant, my surgical team introduced themselves. These were some of the smartest people I’ve ever met, which really bolstered my confidence. 

As the nurses were transporting me to the operating room, they asked me if I’d like a sedative to “take the edge off. I told them that there was no need–I wasn’t nervous because of the many prayers and  because 

I had been meditating on a verse that the Lord placed on my heart—

 Galatians 2:20 which says: “I am crucified with Christ, and it is no longer I who live, but it is Christ who lives in me.” As I looked at the operating table, I envisioned Christ lying there on the table with me. 

The anesthesiologist entered the room and placed a mask on me and within a few minutes I was out. My liver transplant began at 8:00 AM

Meanwhile, The waiting game began for my family. During the 10-hour surgery, the nurse provided Kristy with a few vague updates. Finally, at 4 PM my surgeon came to the waiting room to tell Kristy, our boys, my sister-in-law Susan and my brother-in-law Kirk that the surgery, although extremely difficult, was a success. The transplant team needed a couple more hours to finish things up and then I was transported to ICU. 

 

This photo was taken late that night after my family saw me in the ICU. It was traumatic for them to see me intubated and hooked up to all of the monitors and IVs.

The following morning my family spent most of the day with me in ICU. I was in good spirits and thankful to be alive.

 

I remember waking up in extreme pain with a breathing tube so I couldn’t talk or breathe well. I also realized that I lost complete hearing in my left ear during the surgery. To this day, the doctors don’t know why this happened. I was in ICU dealing with a major post-op complication—damaged bile ducts. To this day, no one knows why, but the donors liver bile ducts were damaged. My doctors performed several procedures to fix them, but to no avail. You simple can’t survive long term if your liver can’t drain bile. I spent weeks battling severe infections, including sepsis, which almost took my life and landed me back in ICU for another week. Finally on August 1, I was released to go home. It wasn’t long before infections forced me back in the hospital. This cycle of spending a few days at home and then return ing to Henry Ford went on throughout August and September.

The Henry Ford Hospital Staff is Amazing

I’ve never met a group of more professional, caring, kind, and encouraging individuals. Over 300 staff members attended to me during my 100+ days in the hospital. 

Faith, Friends and Family also got us through this terrible ordeal. 

One reason my recovery took so long is that an organ is a precious thing. There aren’t enough of them to go around, so my doctors were working feverishly to save my liver but it was a losing battle. I spent most of August and September bouncing back and forth between home and the hospital battling serious infections.

 

My Liver Is Damaged and Failing and It’s Taking Me Down with It

By mid September, I had lost nearly 50 pounds, was immobile and had a bile drain due to my failing liver.

Around mid-September, during our weekly visit with my transplant team, my hepatologist explained that my liver was not going to make it and our only option was a second transplant. Kristy immediately started crying and didn’t stop for two days. The only response I had was thinking: “75 days of recovery—what a waste.” 

We were assured that the second transplant would go much smoother. I remember my doctor saying “I know this is tough news, but this will end well for you”. We clung to these words in the midst of our despair.

Kristy then broke the terrible news to our boys. 

This is when we started questioning the Lord. “Why God…why are you putting us through this? This is so cruel. It’s too much. We thought you provided us with a healthy liver, but it failed!” 

It would’ve been easy to blame God for our troubles, to be angry with Him, but instead, we decided to focus on His character and promises.

But We were definitely being tested.

The Bible promises that when we face hard times and difficult situations, God will provide us with the strength we need to endure. When we are weak, He is strong.

 

For years we had read the scriptures, but now we were living them! 

Verses that I had read my entire life jumped off the page and now had new meanings. For example:

“The peace of God which passes all understanding…” (Philippians 4:7)

Romans 5:3 says…Rejoice in your sufferings…”

Not that we were joyful during our suffering, but looking back, many times our suffering produced blessings. For example, I hated the fact that I had ascites…it caused me great suffering. But it was one of the reasons I got listed. 

We knew we weren’t in this alone…we often referred to Matthew 11:28…”Come to me, all you who are weary and burdened, and I will give you rest.”

We were weary, we needed rest, but we had to fight on and the Lord gave us the strength to do so. 

 

On the Transplant List Again

Mid September I was home and even though I was extremely weak, I was finally able to attend one of Matt’s soccer games. People were very gracious, but I’m sure they were shocked at my appearance for I had lost over 50 pounds, and was so weak that I could barely walk.

A few days later, a prayer vigil was organized at our home by two of our dear friends and members of our church. It was such a blessing to us.

I was wasting away. My liver was failing fast and it was taking me down with it. I was weak and immobile only able to sit in a chair. This photo was 8 days before my second transplant.

On Sep 21, after battling fevers for several days, I checked myself back into Henry Ford. Sure enough, I had sepsis again plus I had a bacterial blood infection which meant I had to be taken off the transplant list until the infection cleared up. I remember praying “Come on Lord, you know I need another liver, why do I have this infection now which is going to delay things?” The Bible teaches us that God’s timing is perfect. And I needed to TRUST him

 

Fortunately, a few days later, my doctor felt that I was healthy enough to be placed back on the transplant list again 

Then on the evening of Sep 25th my favorite nurse practitioner Karen, visited me around 10:00 pm. She pulled up a chair and we talked about my potential second transplant. How the doctors are going to get me the perfect liver, how the surgery and recovery will go much smoother. I thought to myself “Why wasn’t this the case the first time?”

After Karen left my room, I fell asleep, then at 1:30 in the morning, she came back into my room and woke me up saying “Jeff, wake up…we have a new liver for you!” Another answered prayer…I received an offer after only being on the list for 18 hours!

The morning of my transplant, one of my favorite surgeons stopped by, and I asked him if he knew who my surgeon was. He said, “Yes, me and Dr. Aboujoud”. I thought “wow! I have two surgeons?! Including the top surgeon and dept head Dr. Abouljoud!? Another blessing from the Lord 

Later that morning Dr. A stopped by to visit me. I knew my transplant was scheduled for 8:30 pm so I asked him when he started his shift. He said 8 o’clock this morning. “Wait a minute, you mean to tell me you’re working a 12 hr shift and then you’re operating on me?! “He laughed and said “Adrenaline my friend! No need to worry!” I said, “Please tell me you’re going to at least take a power nap!” He assured me he would. 

As evening approached, Matthew Grant, Kristy, and Susan gathered in my room to pray for a successful transplant.

Then Kristy, Susan and I were transferred to the pre-op area. Little did I know, Susan and Kristy didn’t think I would survive the second transplant. In fact, Kristy had already started planning my funeral. As I was wheeled away to the OR I told Kristy that I loved her and that I’d see her in ICU. She thought this would be the last time she would see me alive.

When I was rolled into the operating room that evening, I was calm, again thinking how Christ lives in me and will be on the operating table with me again. 

The anesthesiologist placed a mask on me and I started praying and then Dr Abouljoud walked into the room. I asked him “Did you get a power nap in?” He laughed and responded that he did. 

My transplant started just before midnight on September 26. A few hours later Kristy received a call from the surgeon. Dr. Rizzari told her that the surgery went extremely well and that I was doing great. My second transplant only took 4 hours.

I woke up in the ICU feeling like I had just taken a nap…there was no breathing tube, and things were much calmer this time. Even though I was in excruciating pain, I knew it would only be a matter of time before the nurses got it under control.

So just as my doctors predicted, my second transplant went much smoother. The only complications were blood clots in my arms due to all the IVs and 12 weeks of debilitating abdominal pain which is common with second transplants.

Finally, on Christmas morning, another prayer was answered. I received the greatest gift—-my pain was gone. 

So I’d like to conclude by focusing on the two questions I asked God most often: First, “Why did my first liver fail? And Secondly, Why did we have to go through so much suffering?

I learned that if you ask God a question…He’ll answer. He answered me in various ways: through His Word, through friends who sent me timely excerpts from their devotions. Songs and hymns that I hadn’t heard in years started playing in my head with lyrics that spoke to my situation. He provided me with new insights and perspectives.

Our friend Scott wrote and sent us several beautiful prayers that were so timely, comforting, and spirit-filled. We saved each one of them. 

I remember complaining to my friend Greg after we were told we needed a second transplant. He told me the Lord started speaking to him saying “Where Jeff thought there was a period, I’m adding a comma. This is not the end of his story.

  • Isaiah 55:8-9 says “For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.
  • Hebrews 12:11 says “No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.”
  • God tests us to humble us and to get us to depend on Him. I was reminded of the Israelites wandering in the desert being tested. Henry Ford Hospital was our wilderness…being able to go home permanently was our promised land.
  • His grace is sufficient, and His power, which is made perfect in weakness,
    rests on us. For when we are weak He is strong. (2 Corinthians 12:9-10)
  • I also thought, “Who am I to question God’s plan?” (Isaiah 45:9)
  • He uses suffering to change us in good ways. I’m so much more loving, joyful, patient, kind, generous, and self-controlled. These are all fruit of the Spirit.
  • And speaking of fruit, God prunes us so we will produce more fruit for Him.
  • I didn’t want to be in the hospital for 100 days, but God wanted me there to shine the light of Jesus!

During my darkest moments, I always felt the Lord’s presence. He always rescued me from despair. He gave me daily words of encouragement and extra strength to endure many long days and nights. I remember so many times laying in my hospital bed feeling full of joy. 

Second Transplant Recovery

Two weeks after my second transplant, I was cleared to go home. I was feeling much better, gaining weight and mobility again. Because surgeons had to re-open my incision for the second transplant, I experienced several weeks of excruciating abdominal pain. 

My daily prayer was answered when I awoke on Christmas morning finally pain free!

 

I’m feeling great now. I feel whole, not only physically, but mentally and spiritually. I’ve been changed…forged through the fires of adversity. And it wasn’t in my own strength. I have never been so weak, yet I was strong enough to endure 2 transplants, being off work for 5 months, spending countless days in ICU, and near death on more than one occasion. The list goes on and on. 

I am a better man for what I went through…for “I have fought the good fight, I have finished this part of the race, and I have kept the faith.”

All glory to God!

If you would like to know more about my journey or have questions about organ donation, transplant surgery, and recovery, feel free to contact me at jeff@howtosavealife.org.

 

 

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