Dazed and Confused

I’ve recently learned all the difference that a just few minutes and hours can make in someone’s life. Today as I sat by my husband's hospital bedside I am so grateful he is alive as I am reminded I could have easily lost him due to serious complications from the terminal liver disease he suffers from.

Eric had slept in later than usual, and I had difficulty trying to wake him. When he did, I notice he wasn’t his usual cheerful self instead he was in a very odd mood, doing things he typically wouldn’t normally do, and saying phrases that didn’t make any sense. That was another warning sign something was just off.

Within minutes, I detected his whole demeanor was very strange, and immediately began suspecting that he was having complications from hepatic encephalopathy causing this behavior. This can happen when your ammonia levels get too high, and the bloodstream isn’t filtering out the poisonous toxins, and they go directly to your brain. I had previously learned about this dangerous condition, and knew to be observant for any symptoms as this.

Eric kept insisting he was ok, but was just extremely sleepy. A few minutes passed and he was becoming more lethargic, and his speech was slurred. Suddenly he wasn’t oriented, and couldn’t remember my name, the correct date, year or even his whereabouts.

I made an emergency call for help right then and starting praying.

A few minutes later we arrived at the Emergency Department at the hospital where an EKG revealed bradycardia, as his heart rate was beating erratically and abnormally low at only 35--39 per minute (the doctor wanted it at a minimum of 80) and his oxygen levels were dangerously low at 84. At times he had low blood pressure along with shallow respirations. As suspected his lab work confirmed that his ammonia levels were highly elevated. Below is a photo of his monitor readings.


The doctors were getting concerned as Eric was getting worse by the minute and becoming more unresponsive. Within seconds; the medical staff began working on him trying to increase his heart rate, oxygen levels, and blood pressure. I could see Eric was fading fast, and for seven long hours he was completely oblivious to the world around him.

His two doctors said they feared Eric could fall into a hepatic coma as his failing liver could not filter his blood. One explained that most patients who went into a hepatic coma did not wake up, and would not survive. He explained that at this time Eric was too sick to survive a transplant should one become available. Witnessing this was frightening, and my heart broke seeing Eric being attached to the many machines, tubes and wires but I knew they were helping him live.

I was so thankful for my cell phone, and for having friends and family members calling, texting me, while others on facebook were starting prayer chains supporting us, and keeping me sane during this difficult time. My family members were over three hours away, and I felt so weak and helpless, but was comforted by remembering 2 Corinthians 12:9 But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness."

Even though he was non-responsive, I sat by his side holding his hand, whispering to him begging him to fight, to pull through this and praying for him. By the God's grace he did.

I am humbled and grateful for answered prayers as today. He is awake and alert. His MELD scores have increased from 17 to 22, therefore raising him higher on the transplant waiting list, hopefully getting closer to a transplant. We were visited by two additional transplant surgeons who explained more about what we can expect in the future.

I know it’s truly by God’s mercy that Eric is alive today. It’s been emotionally draining, and physically exhausting past few days. We’re counting our blessing and not taking a single day we have for granted. Make sure you tell your loved ones how much you love them today, as life is so fragile and you may not have the opportunity tomorrow. We are learning this first hand.

Most importantly we know that God answers prayers in our darkest hours and he is always there waiting for us to come to him.

Special doctors and hospitals

Do you have confidence in your health care team?

Having trust in your physicians can make all the difference in your recovery as you should be partners in your treatments especially when you have a chronic medical condition. We have been blessed with have a special team of doctors, and an excellent hospital treating Eric.

Eric had an appointment today with his main Hepatologist at the Hospital of the University of Pennsylvania (HUP). His doctor gave us some much needed encouragement and some good advice for his complications from the cirrhosis. We felt her aggressive cutting edge expertise, and experience in the liver disease specialty field is without question. We left feeling more hopeful that we normally do. Perhaps it was due to her kind emotional support from a physician.

She gave Eric the approval to once again be able to add meat back into his diet, and hopefully with another change in his medication he will soon start to feel better. She is genuinely concerned about Eric’s condition, and has given us her private phone line to call her personally with updates on him whether he is experiencing a good day or a bad day. This only adds to our trust in her medical care.



We have every confidence in HUP, their staff, and the transplant team as they have an extraordinary reputation as a world-renowned clinical and research hospital. It was ranked as the # 8 Best Hospital in the United States out of thousands by U.S. News & World Report. HUP has a Level 1 Trauma Center and a fleet of 6 helicopters called PennSTAR used to transport critically injured patients to the hospital. It has 697 hospital beds and a team of 1,663 physicians on staff, in addition to being the nation’s first teaching hospital.

Eric’s doctors are located in the Perelman Center for Advanced Medicine. It is a state-of-the-art, 500,000 square foot facility that’s attached to the Hospital of the University of Pennsylvania through a glass crosswalk. This outpatient center cost $302 million to build, and is very impressive.






The professionalism shown by the staff is overwhelming. The staff is especially helpful to keep families updated on patients who are having surgery as they update the boards every 20 seconds on a television monitor of the patient’s status. It reminds me of the airport terminal boards and waiting for a loved one to arrive. It shows the patient’s pre-op status, what time their procedure began and ended, what time they were moved into the recovery room, and their destination if the patient is expected to be released to either go home or if they are to be admitted. Now that's pretty cool to a small town girl like myself.



If you ever need an excellent hospital, we highly recommend this one, but be prepared the valet services are not cheap, expect to pay around $15.00 for your visit.

Compassionate and caring people

I’ve got a lot to be thankful for. I have two of the sweetest girlfriends. They know how busy I have been lately, they kindly cooked us a delicious dinner and baked us a friendship bread loaf. I love them to pieces Cindy and Angela, you girls are the best. We really enjoyed your kindness, and greatly appreciated it.



It’s been another chaotic week around our home as our days have been spent at the rehab center, the hospital and the doctor’s office while trying to maintain some sense of normalcy around our home.

My sweet husband, Eric was feeling extremely weak from the Hepatic Encephalopathy, and because he was lightheaded, he took a nosedive and fell hard onto the hardwood floor causing him to injure his ribs, knee, and right side. Thankfully no ribs were broken, but were bruised and his pulled muscle is very painful. He isn’t one to complain often. But I can clearly see he’s hurting from the look on his face.

He’s struggling to function on minimal sleep. Last night was no exception as he had another sleepless night. I try to stay awake with him whenever possible. There are some nights when we’re both up all night long.

It’s obvious the cirrhosis is progressing, and is taking its toll on his body and his doctor has recommended he purchase a walking cane to assist him. He also has advised against him driving for the time being until his ammonia levels are stabilized into a more normal range. Recently his blood test showed these levels were five times higher than they should normally be, thus causing the sleep deprivation, and light headiness.

I am praying that he will soon get a liver transplant and will feel like his old self again. It’s painful to watch the one you love suffer. The emotions we deal with are all over the place. One doctor has suggested we write about our feeling about his disease, and thought that blogging would be a good release for us. So we're going to try to take his advice and let our blogs be an emotional outlet for us.

Eric's blog can be found at...

http://www.onshiftingsands.blogspot.com/

We really like his liver specialist he is such a caring physician. He genuinely cares for his patients. Each month when see him, after he has completed his physical exam on Eric, he invites into his office. There he usually spends about an hour with us discussing Eric’s disease and what we can expect, etc. Most doctors I have seen haven't typically spend this much time with their patients.

The Beginning of Our Journey

Over the past five weeks my husband, Eric and I have seen several very dark days since learning the devastating news of his illness. We debated whether or not we wanted to share our innermost thoughts, and after discussing it, we have encouraged each other to open ourselves up. We both tend to be private about our personal feelings and sometimes feel uncomfortable speaking outside of our comfort zone. However we feel the time is right to share this with our family and friends.

The love of my life, Eric has been diagnosed with Stage 4 Advanced Cirrhosis, End-stage Liver Disease on January 26, 2009.

I hope you will take the time to read his latest blog entry over at http://onshiftingsands.blogspot.com/ support him in this. I greatly admire his courageous spirit and unfailing humor.

To say it has been an emotional rollercoaster dealing with these feelings is a gross understatement. There aren’t adequate words to express the depths of our worst fears and the emotional upheavals that we’ve recently experienced. When the one you deeply love is suffering, you also feel the agonizing pain they are going through yourself.


He was hospitalized in the Intensive Care Unit listed in critical condition, and we were told by four specialists the extent of his disease, and the dismal prognosis that he would need to have a liver transplant immediately in order to survive. We were stunned this was happening now after he had been sober for several months. I knew immediately our happy lives as we knew it no longer existed. We were stepping off into unknown territories.

I held his hand that night in the ICU and assured him that we would get through this illness together, and I reminded him of our solemn promises we spoke at our wedding ceremony of ‘in sickness and in health for better or for worse ‘17 months ago, we made sacred vows not only to each other but to God as well, and we intend to honor this commitment regardless of the situation.

Later that night after I left the hospital, I came home and immediately fell to my knees beside our bed praying for my critically sick husband asking for God’s mercy, and a miraculous healing for him if it be His will. My faith was the only thing that was sustaining me as I poured my broken heart out to God. Although my mind was not able to form the words to speak I knew that those shed tears were an unspoken language that only He could understand and I know He heard my prayers.

As I lay on the carpet, it was as if I felt the Lord comforting me and saying that I could lay my head on his chest and to release all of my burdens, and tears to Him. I sobbed for hours as I was so deeply distraught as this horrible sickness wasn't in my plans for our lives.

I opened my Bible to seek guidance and immediately felt led to read Jeremiah 29:11-14

11 For I know the plans I have for you,” says the Lord. They are plans for good and not for disaster, to give you a future and a hope. 12 In those days when you pray, I will listen. 13 If you look for me wholeheartedly, you will find me. 14 I will be found by you,” says the Lord.

It was no coincidence I turned to that page and read those scriptures. Those few verses spoke directly to my heart, and I felt comforted by them. It was exactly what I needed to read. I kept repeating them over in my head, and I realized that God wasn’t going to fail us. He had just given me more hope. This disease was no surprise to Him. He knew the plans for our lives long before we were even born and He would see us through this. I held on to His written promises right then, and I do even more so today.

It has been heartbreaking to see the other half of my heart become so physically ill, and knowing that I am helpless and powerless over his illness. I realize the most important thing I can do is continue to love and support Eric and pray for him.

We have had good days with shared laughter and bad days filled with lots of tears lately as its obvious his illness is rapidly progressing. Eric is now no longer allowed to drive as his physician has revoked his driving privileges due to some serious complications associated with the disease.

Yesterday his Hepatologist explained that he is now classified with a Child-Pugh score C, which is very disheartening to be told. This is weighing heavily on our minds; our prayers are that he can receive a liver transplant in time. You can read more about this score on the Internet.

I ask that you will please keep us in your thoughts and prayers. Writing this entry has been very difficult, and we felt that we owed it to our family and friends to let you know the truth. We don't know what tomorrow holds for us, but we know that we have to lean on a Power that is greater than ourselves, and through our faith, love and support that surrounds us we can get through these terribly difficult times together.

No matter what the outcome we know we have a never ending love story and God has a plan for us and we trust Him.