True story: On the very last day of 2010, I married a half-dead man.
Barely out of the hospital for 48 hours, my beloved groom, Jon Hamilton, was hiding the PICC-line remaining in his arm underneath his wedding suit. He was so very ill that he laid down on the sofa in the minister’s office until time for the ceremony to begin. After sitting through 90% of the reception that followed our wedding, Jon needed to take a 2-hour nap before he had enough strength to leave for our French Quarter honeymoon. Even so, I still had to drive us most of the way to New Orleans.
No, the man I married was not well. In fact, he hadn’t been well for a very long time. He was so close to death that a friend and I wondered together if there would be a wedding or a funeral.
I know it’s rather obvious to say this but truly I’m so very happy that I can say we got our wedding! And four years later, I’m glad for the blessing to love him in sickness and in health … it’s a vow I plan to keep as long as the Lord allows.
Initially, I had no idea what that promise would mean, how close we would come to not getting married, how near to death Jon would come.
But the good news is that my guy survived the heart infection that almost took his life. And despite the fact that he should have died several times over, if you were to meet him today, you would never know he had once been so desperately ill. The only signs that remain are the nasty scar running down the length of his chest and an inability to digest gluten or dairy (which is a result of so many months of strong levels of antibiotics).
What follows is our story … our wedding tale, if you will. I just gave the short-version. Now I will share the longer-version, with all the God-ordained moments and miracles He poured out over us during those last days of 2010, shortly before we said “I do.”
Three months before I started dating Jon, he had open-heart surgery to repair a leaky mitral valve.
He was already a special friend, and so I remember praying for his recovery. But from the start, he seemed to being healing very slow. Within just a few days of returning home from the hospital, Jon began to experience night sweats and the fatigue which plagued him prior to the surgery only worsened in the weeks that followed.
By the following summer, a year after the surgery, Jon was experiencing a long list of strange symptoms in addition to the fatigue and night sweats. He was pale, constantly ran low-grade fevers, would shake with several chills every nights, and his muscle and joints ached. Jon’s spleen was swollen and tender; he felt nauseous often. Even though he wasn’t trying to diet, his weight plummeted, going from 250 lbs prior to the surgery to hovering right around 200 lbs during the fall of 2010.
Jon saw his cardiologist regularly throughout that year, though that doctor didn’t seem to think there was a problem with the heart. However, Jon’s family doctor was concerned enough to begin a battery of tests to try to determine the source of the illness. With a clean bill of health regarding his heart, Jon’s GP doctor began to look for other sources as the cause for the illness. Blood work. X-rays. CAT scans and MRI’s.
Soon Jon’s medical team grew to include a hematologist, urologist and gastroenterologist. Test after test was performed; all came back negative. No leukemia. No colon cancer. While we were thankful those terrible fates were not Jon’s, our worried continued to mount for nothing seemed to be the cause of Jon’s mysterious symptoms. Although everyone seemed to agree that Jon was suffering from a serious illness, not one single doctor out of the many Jon saw for his medical care could figure out what was making him so very, very ill.
But I knew … I knew only because God showed me.
“Jon, it’s your heart!” I said time and again.
“No. It can’t be. My cardiologist says everything looks fine.”
“But I know you’ve got a heart infection. If you would just google the symptoms and you will see,” I persisted. “I know it sounds silly, but I’m convinced God has shown me the source of your illness.”
“Paige, I am not interested in playing internet doctor. Let’s just trust the medical doctors to figure this out. God can show them, too.”
Initially, I wondered myself if what I thought I knew was actually coming from God or if I was just as crazy as I felt. Then came the day when I received an out of the blue email from a lady who went to church with Jon.
I only knew Catherine casually, but that day she reached out and asked me if Jon’s heart might be the cause of his illness. Old enough to be my own mother, Catherine’s friendship and concern was like a breath of fresh air in that scary place. Years before, she had lost her only son after he had surgery to correct a heart defect, so her understanding of heart-related illnesses and symptoms was great. Her deep faith in God was matched with her quick intellect and warm spirit. Soon Catherine and I were praying together for Jon’s health, and chatting regularly as we teamed together to try to figure out a way to get Jon to a doctor who could help cure him. Most of all, Catherine served as an encourager to me, a bouncing board for all the multitude of emotions I experienced, for it was during that fall Jon proposed married and we set a wedding date for December 31, 2010.
By early November, Jon seemed to be languishing. The fevers were stronger. He was napping more and more. My sweetheart seemed to be surviving on massive doses of Tylenol and Ibuprofen. One day, I noticed some tiny red spots at the ends of his fingers. Petechiae. Blood spots. Another symptom of a serious heart infections. A sign of tiny bits of infection vegetations were being dislodged into the blood stream. If a large enough piece broke away, it could trigger a stroke.
“He could die, Catherine!” I moaned. “The man could have a stroke and die if a doctor doesn’t figure this thing out soon!”
Agreeing with me, Catherine solemnly said, “Paige, I’m so afraid it will be a wedding or a funeral. Jon doesn’t have much time left. He is a very sick man, and unless we can get a doctor to treat his heart infection, he will die soon.”
But even Jon was still skeptical, siding with the doctors, refusing to consider that his heart might be the source of his illness. I begged him to get a second opinion from a new cardiologist, but Jon could not be convinced.
And then, without warning, something happened in early December that caused the tide to finally begin to turn.
“Did I tell you my index finger has a painful knot at the end of it? I’ve decided it must be ‘mouse finger’ … you know, because it’s probably just sore from using the mouse to my computer too much.” Jon laughed at his confession.
Slowly Jon’s words begin to sink into my brain, as if for the first few seconds I couldn’t understand the words and what they meant. But then it all came together, so quickly that I gasped with a sudden realization.
“Jon! You don’t have mouse finger … you have an Osler’s node!” This was it, the final symptom on the long list of symptoms for endocarditis. Now I knew with all certainty that Jon truly did have a heart infection. Mentally I made a list of all his known symptoms, and I felt like I was reading a page straight out of some medical text-book! If I only I could get him to see that I had been given this God-inspired information, then maybe he would seek out a second opinion. I breathed a quick prayer asking God to open Jon’s eyes.
Jon’s voice broke through my racing thoughts. “Osler’s nodes? What are you talking about, Paige?” Jon was obviously confused and baffled by my reaction.
“Jon …listen to me, please. Osler’s nodes is another symptom of endocarditis. What I’m trying to get you to understand is that you really do have endocarditis. Your heart is infected! The finger thing proves it. Go ahead. Google endocarditis. Read through the symptoms. Check off the ones you have. Up until now, you had every symptom except for one … Osler’s nodes. Now you have them all. Every last one. Please … go look it up. Tell me I’m wrong.”
A few minutes later, it was Jon’s turn to gasp. “Oh, Paige … You are right. I do have Osler’s nodes … and every other symptom there. I guess the question is this: Now what do I do?”
With my encouragement, Jon arranged another appointment with his cardiologist, this time being sure to point blank ask him about the possibility of endocarditis as the cause all of his baffling symptoms.
“Mr. Hamilton,” replied the doctor gruffly, “you don’t want to have endocarditis.”
“I certainly agree with you. I don’t want to have endocarditis. However, I am concerned about the possibility that I do considering my symptoms,” Jon replied. “Could we do some tests to rule it out?”
“I see no reason to believe that you have endocarditis. Everything regarding your heart still looks fine to me.” With that, the doctor left the room. The examination was over.
Now Jon knew … he needed a second opinion, and he needed it quick.
“Call Beth Dooley.”
Catherine didn’t just know hearts. She knew everybody there was to know, as well as everything about them. “Beth is a nurse for a cardiologist. She will be able to get Jon that second opinion. Jon should have her number. It’s in the church directory.”
I didn’t know Beth Dooley, but I told Jon about Catherine’s suggestion. “Oh, yes! Beth. I should have thought about that. I’ll talk to her the next time I see her.” As sick as he was, Jon didn’t seem to be in a hurry.
“Jon, can’t you call her now? I’m worried about you.” Every time I saw Jon’s glassy-looking eyes or gray-tinged skin, I knew his time was quickly running out. It was already mid-December, and more than ever I was wondering if Catherine was right.
Would we have our New Year’s Eve wedding or would it be a funeral for my beloved instead?
Thankfully, Jon and I saw Beth the very next day at a church Christmas breakfast. When she heard Jon’s story, she immediately said, “Here’s my work number. Call me first thing on Monday morning and I’ll make sure you get into see Dr. Coureville.” Pulling me aside, she added, “I could tell by his appearance that something was terribly wrong with Jon, but I had no idea there was the possibility of it being related to his heart … I feel bad because I could have helped him sooner. But don’t worry. Dr. Coureville will know exactly what to do to help Jon.”
Sure enough, the following week, Jon saw the new cardiologist, who agreed with me that Jon was suffering from endocarditis. “We’ll schedule a TEE at the hospital for tomorrow morning so that I can get a good look at your heart and see the extent of the infection.”
When Jon called me with the update from his appointment, I immediately made plans to leave my north Louisiana home and head south. Despite Jon’s protests, I was going to be there for the procedure … to hear the results, to ask questions, to be informed about his treatment and recovery. After all, our wedding day was less than two weeks away.
That night, I walked into Jon’s home. He looked worse than I had ever seen him. All evening, he popped pills, four Tylenol followed an hour and a half later by four Ibuprofen. Seeing this cycle happen twice, I questioned him about taking that much medication. But Jon replied, “Don’t worry about me. I’m doing fine.”
Yet, his fever persisted, his skin had a look of death, and he could barely find the strength to move off the sofa when a group of church carolers came by to sing for Jon. Jon’s pastor walked up from the crowd and embraced Jon, tears streaming down his face. He hugged me next, whispering in my ear, “Oh, Paige … I am so, so sorry. You have my prayers.”
My heart sank again. It wasn’t just me. Others saw the reality of Jon’s illness too. And yet, there I stood in the cold December air, continuing to hold hands with a man who was closer to death than anyone I had ever loved before.
And in that moment, I realized not a single part of me wanted to leave or run away. I was already in this, for better or for worse.
December 22, 2010
2 am: I awaken to the sounds of moaning.
At first, I couldn’t remember where I was. I never slept at Jon’s house, normally staying in Catherine’s guest room. Slowly, I came to and remembered that I had decided to stay close to Jon that night, partly because I was so worried about his health and partly because Jon’s procedure was scheduled for 7 am the following morning.
Tiptoeing into the living room, I saw Jon stretched out on the couch. His face appeared paler than ever in the soft glow of the TV. His hand was massaging his chest. His lips were moving, as if he were praying aloud.
Jon noticed me and smiled. “I’m okay.” He said the words emphatically, as if trying to convince himself more than me.
“No, you aren’t. Your moaning woke me up. People who are feeling okay don’t moan. What’s the matter?”
He looked at me, glassy-eyed. “Oh, the medicine just wore off, but I took some more and it will kick in soon. Go on back to bed.”
“Jon. Tell me … where are you hurting?”
“In my chest. It’s burning … and radiating around to my back.” He moaned again.
I stared at him in disbelief. Why was this man trying to be so brave? He needed medical help and yet he continued to suffer silently. Using my best stern teacher voice, I said, “That is it. I’m am tired of watching you suffer and hurt. Get up now. I’m taking you to the hospital.”
“Now Paige, there’s no need to go rushing off to a hospital. I am already scheduled to be there at 6:30 am … it’s just another 4 hours from now. I can wait.”
“No. You can’t wait. I can’t wait either. You are suffering. Besides, I’ve counted … you have had at least 16 Tylenol and 20 Ibuprofens just since I arrived here last night. You are about to overdose on over-the-counter pain relievers, meanwhile you are still in pain and still running a fever! This is ridiculous. You don’t have a choice anymore. I am taking you to the hospital now … or, if you want to be stubborn and refuse to go with me, I will call an ambulance to come transport you. Now which will it be?”
Thankfully, Jon got up off the couch. Together, hand-in-hand, we walked out of the house.
As it turned out, Jon was already in the process of dying. His kidneys, liver and bone marrow were in the initial stages of beginning to shut down. Thankfully, team of doctors and nurses were able to reverse that from continuing to happen, though several people on caregivers admitted in hushed tones that we got him there just in the nick of time.
“A few more hours and we may not have been able to stop the process from happening,” whispered one of our favorite nurses. Deep down, I knew she was being truthful with me. Jon really was almost too far gone when we arrived at the hospital.
The TEE showed a vegetation of infection on his mitral valve the size of my pinky finger. It flapped around each time his mitral valve opened and closed, flinging bits and pieces of infection out into his blood stream. If the infection hadn’t managed to kill him, a stroke was literally just a heartbeat away from taking his life.
Later that evening, Dr. Coureville sat down to chat with me. “Twenty-four to forty-eight hours … tops. Probably less, but for sure that’s all I would have given him. You really did get him here at the last minute. Much later and we probably couldn’t have saved his life. In fact, even now, I can’t promise you he will survive this. He is one incredibly sick man. “
A culture was taken of Jon’s infection. A week passed by before we go the results, but when we did the news we heard was rather astounding. The infection was caused by the Bartinelli bacteria, which happens to be the same bacteria that causes cat scratch fever. (It’s not just a song, folks!) As it turns out, Jon is the only documented case of the Bartinelli virus ever infecting a heart. Jon’s infectious diseases doctor was so impressed that he announced with an air of pride, “Mr. Hamilton, you are one in a million. I will be writing a medical journal article about you.” (Trust me, even Jon who sometimes likes to be the center of attention, admits this is not a pleasant way to get your 15-minutes of fame!)
Jon was released from the hospital on December 29th, his 41st birthday. He went home with a PICC-line inserted in his arm to deliver the antibiotics straight to his heart and the promise of a home health nurse who would be making daily visits to our home.
Two days later, we had our New Year’s Eve wedding.
It was the wedding that nearly didn’t happen. It almost was a funeral. But God intervened, at the last possible moment, and gave us a Christmas miracle we would never forget.
Of course, our medical story doesn’t end there. Jon ended up needing to have a second open-heart surgery a month after our wedding because the infection wouldn’t clear up with antibiotics alone. His old infected mitral valve was removed and he got a brand-new teflon version that clicks rhythmically with each beat of his heart.
I love to lay in bed in the quiet of the night and hear my husband’s heart ticking softly, reminding me of all God has done for us, including the story of our wedding and how it almost didn’t happen.
And as I fall asleep listening to the tick-tick-tick of Jon’s heart, I’m so very grateful that it did.
The LORD has done great things for us; we are glad. ~Psalm 126:3