Heart Failure (Revisited!)

I wrote the following blog THREE YEARS ago. Many of you did not know me then and what God did in our lives during this time is was so life-changing for us that I felt compelled to share it again - in praise to God for His amazing goodness. Please read what I wrote in January 2008...


Four years ago in 2003 we were celebrating the birth of our fourth child Lindsay. The day after Lindsay was born during a routine check of Mendy’s vital signs, the doctors became concerned about an irregularity in Mendy’s heartbeat. After a few tests, the doctor’s scheduled an immediate appointment with a heart specialists. After several heart tests including an echocardiogram, Mendy was diagnosed with perinatal cardiomyopathy, which is a complicated way of saying that Mendy’s heart was failing due to the stress of the pregnancy/delivery. Her ejection fraction (which is the percentage of the blood that the heart pumps out with each beat) was 33% and normal range was 55+%. Needless to say we were a little concerned, but the doctors seemed very nonchalant about it, gave Mendy a prescription and said come back in three months because “sometimes these things just go away,” as he put it.

It seems weird now to say that we didn’t give too much thought to this at the time, or at least I didn’t. There was the task of bringing a fourth child home, helping our 7,6 and 3 year-olds get used to having a new child which meant new competition for our attention. Needless to say it was demanding. At the same time there were some major transitions taking place within the church that required my involvement, so I kind of handled this like the heart doctor and thought it was something that would hopefully just go away. In the little research Mendy did on-line she found out enough scary things to realize that we probably needed a second opinion and she scheduled her follow-up with another heart doctor.

Every once in a while the thought would occur to me, “what if this thing is serious… what if it doesn’t get better… what if this thing gets worse… what if… what if… what if?” I began to struggle a little bit with the whole thing because Mendy and I had talked a lot about not having any more children naturally (we have always thought we might adopt more someday). Mendy was leaning toward not having any more and I was always pushing a little to have another child. In my family, I was the youngest of four, so I guess I am just glad that my parents didn’t stop at three. I began to feel a little guilty for wanting to have another child and all my “what if” questions began to turn into “what if my desire to have another child has actually endangered my wife’s life?” My mind began to race at times and I would be faced with some very anxious thoughts. But again the distraction of the daily routine was more than enough to keep me preoccupied with other stuff. The next three months were a blur!!!

In late January 2004, Mendy returned for her three-month check up with a different heart specialist at the Sanger Clinic in Charlotte. After doing another echocardiogram we waited for the doctors to give us an update. Waiting in a small room is never easy for me, especially when you are hoping for some good news. When the doctor came in, he looked concerned. He said that Mendy’s ejection fraction was at 22% and that we needed to follow an immediate and radical course of action. He explained to us that in the case of perinatal cardiomyopathy, about 1/3 of the patients recover the full heart strength, about 1/3 stay the same for the rest of their lives and about 1/3 get worse which leads to complete heart failure within the first year. With knowing what we knew about her earlier ejection fraction, we knew which 1/3 we were in (the worst 1/3). One of the doctor’s assistants had her white medical coat on with the words “Pre-Transplant Coordinator” printed under her name as her title. Those words were etched in my mind like no others. The thoughts of that day still are very real to me. That evening we had plans to take the older girls to a concert. During the concert Jeremy Camp sang, “Blessed Be Your Name” by Matt Redman. In this song the words “You give and take away but my heart will chose to say Blessed by Your name” became so real to us. Still to this day Mendy can’t sing this song without crying as she is reminded of that night as she stood by her girls and I and realized that in His plan He gives and takes away.

In the doctor’s words, Mendy’s heart looked like an elderly person’s heart. It was enlarged and the only thing consistent about the heart beat was that it was consistently irregular… a few beats and then mumble, mumble, gurgle then a beat and then more mumble. The doctor prescribed two medications and ace inhibitor and a beta blocker. The medications meant that Mendy would have to immediately stop breast-feeding Lindsay, which was a big blow to a mom with her last child. The beta-blockers were going to decrease Mendy’s heart rate and lower her blood pressure. The ace inhibitors would further decrease the blood pressure. All this meant that Mendy would be completely exhausted because the medicines are designed to keep her heart from working very hard. It was a tough day for both of us to swallow. We left the Sanger Clinic scared, worried, anxious and quiet. I don’t remember what we talked about the rest of the day, but we both knew what the other was thinking. All of my “what if” thoughts seemed that day to come alive in a nightmare. All of my “worst case scenario” was coming true.

Some of the medication was so intense that they have to ramp you up slowly and continually monitor how your heart and body responds over weeks and months. We had doctor’s appointments scheduled every three weeks for a period of six months. It started slowly, but I could see Mendy’s strength wearing away and I could see how she dreaded each new visit to the Sanger clinic, which brought about an increased dosage and more exhaustion. I could see Mendy struggling physically and emotionally. Each time she went to the doctor she had to say she could handle more medicine because she thought this was her only hope for survival. At the same time she knew that an increased dosage meant extreme exhaustion, more days trying to keep her eyes open, more nights trying to go to bed earlier, and more guilt that she couldn’t be what our kids needed her to be, in such a critical time of life.

There were nights that I would come to bed long after Mendy was asleep and stare at her and think and wonder. In the best of those times, there was a great deal of thankfulness and gratitude for our marriage and our family and our life. It’s the time in life where (as Solomon says in Ecclesiastes) it is better to think about death because sadness and sorrow have a refining influence on us. I thought many times about how we met, and how God had directed our lives in paths we never could have imagined. I can remember laying my head on her chest as she slept to listen to her gurgled heartbeat while I would pray that God would heal her heart. In the worst of those times, there were the thoughts of how could I live without her and who would I be. I mean I have been good friends with, or dating, or engaged, or married to this woman since I was 16. A lot of my identity is US. And then there were the thoughts of how I would raise four kids without their mom around… overwhelming!!!

Other nights I would get to bed before she would go to sleep and we would ultimately end up talking about what came next. Night after night I would listen to Mendy struggle with the reality of her condition and sooner or later she would get real quiet and ask, “David, am I going to die?” It was the question I dreaded and the question I had no answer for other than, “I don’t know.” I didn’t know, but I thought about it all the time and I knew Mendy did to. We both have such great families, that I knew somehow we would have all the support we would need no matter what, but it was really impossible imagining the worst, but you simply had to from time to time. It was a possibility! We prayed all the time.

The doctor prescribed cardiac rehab and Mendy began attending a support group for others with the same condition. The cardiac rehab turned out to be a little comic relief. Mendy was the youngest one in the group by about 45 years!!! Everyone thought she worked there, but she would explain her situation and jump into the activities with the rest of the 75 year olds. From what I hear, it seems as though the men would wait for her so they could walk behind her around the track, and “take in the view.” I told her she should wear several layers of clothes and begin shedding a few of them with each lap so that she could hear the heart monitors going off on all those guys.

As she read of others and talked with others in a support group who had the same condition, we got a little more sobering picture of this condition. Many women become completely debilitated with this condition and are basically on strict bed rest 24 hours a day. The stories of in-laws moving in to help care for the family and kids were numerous. Thankfully, that was not our experience. I think Mendy was somewhat determined that this was not going to slow her down. I would watch her force herself up in the mornings, do as much as she could possibly do to maintain normalcy in our house. And with four kids “normalcy” is a relative term. She resumed many of her roles in the church that she had before delivering Lindsay and even picked up a few. As I said before, there were some major threats to the sustaining mission of the church that ended up requiring a lot of my attention and whenever I needed Mendy she was there. At the end of each day there was a collapse into bed and the routine would start again.

Looking back, it was truly one of the loneliest times in our lives. It was the only time I wished that I were the pastor of a traditional church, with a guaranteed structure that was going to keep plodding along whether I was there or not. That people would show up, people would serve, people would give, other leaders would understand and the mission would continue without my attention. And maybe UCF would have been just fine if I had backed off, but it sure didn’t seem like it to me. These were the times when Mendy and I both began to have thoughts like… “come on God, can you give us a break here… we have sacrificed and served and followed you to start this church… we have poured our lives into this thing…. And this is what we get?... are you for us at all… where are you… do you know what you are doing here?” It was truly painful. I can remember Mendy and I on New Year’s Eve 2004 sitting together and crying and thinking and praying... if we have another year like 2004, I’m not sure we can take it. During this time, I can also remember reading a book by Brennan Manning called Ruthless Trust that rocked my world then and is still rocking my world today. I won’t explain it here, but if you just read it, you will experience the struggle of trusting God with your WHOLE LIFE.

The medication steadily increased over the next 6 months and the doctor didn’t want to test again until she had been at full strength medication for 3 months. It is hard to face a condition like this because the timing is so long in between. From the panic of January it was going to be 9 full months until we knew anything different. Nine months of doing what the doctors said and hoping and praying without knowing anything. I know that Mendy was tempted to quit the medication several times. Her reasoning was simple. If I am not going to make it then I want my kids to remember a vibrant mom who played with them until the very end, rather than a mom who was in bed for the last 9 months of her life. But she had to take the medication, so she did.

I can remember one office visit when they checked her heart rate and it was at 32 beats per minute. At that point they quit upping the dosage because they didn’t want her heart rate to go that low. I remember constantly listening to Mendy’s heart (sometimes at my request but most of the times at her request) to see if there was any regularity. There always seemed to be a few hopeful constant beats, but soon the mumble came and there was a sense of hopelessness. I dreaded looking into her eyes after listening to her heart gurgle. Her eyes were always hopeful for healing. Each time I looked up at her, she knew the answer and the hope in her eyes immediately turned to uncertainty, disappointment and sadness.

In October of 2004, as Lindsay turned one we returned to the doctor for our first real check to see if nine months of medication and struggle was worth it. To be honest, I didn’t expect much. I felt like I kind of knew what 1/3 we were in and knew that tougher times might be ahead. As I remember, the doctor came in with the good news/ bad news kind of look. The good news was that Mendy’s ejection fraction had not gotten any worse; the bad news was that it had not gotten any better. Overall, it was good news. It immediately gave us a little hope and for the time being took the talk of a heart transplant off the table. The doctor seemed to assure us at that point that often times the medication would stabilize a weakened heart and that this was your new reality of life. It might mean that you would be on medication for the rest of your life in order to maintain the present strength of the heart. During this time, I kept saying that where we are now is the “new normal.” People would often ask how Mendy was and how she looked like she was back to normal. I would say that we are at a stage of “new normal” and if you could see what I see at night and in the morning, you wouldn’t think she was back to normal. It wasn’t great news, but it was the best we had heard in 9 months.

It was a weird joy. Glad for the reverse of the negative, but facing some very long-term medication options that were completely exhausting for Mendy. The other frustrating reality was that check ups from this point were every 3 months, a long time to wait before finding out progress. In November of 2004, I left on a trip to Africa for 15 days. Mendy was in good hands and I can remember spending large portions of the trip praying and hoping for change. I wrestled with God on the “why” of all of this and I kept hearing a phrase that I came up with as I read Ruthless Trust. It’s a question phrased from God to me, “David, do you trust me with the outcome of your life?” To me it means for me to do what I know to do in following God and leave the outcome of my life and the circumstances around it to God. My response is another phrase that I learned from Brennan Manning at a retreat he led. It is the phrase, “Abba, I belong to You!” In the most difficult moments and still today I remember how Manning taught me to use this phrase. You inhale on “Abba” and you exhale on “I belong to You.” It goes with my breathing pattern so I could repeat it endlessly until I believed it again and again.

In Jan 2005, we went for our first of four scheduled check ups for the year. As I remember, this visit was largely the same as before. Mendy’s heart wasn’t getting better, but it wasn’t getting worse. However, our first encouraging news came in April when the ejection fraction of her heart actually increased from the base line of 22% to 27-28%. The medicine was working and actually allowing her heart to regain some strength. The next visit in July her ejection fraction moved to 37%. We kind of felt like we were on a roll and the prospects of recovery became something we began to talk about again. We were thankful for the reversal, and cautiously optimistic about the future. In October, Mendy’s checkup was the same as July. She had leveled off which was bad news but also good news. The first few visits of 2006 revealed the same thing. The medication was working in that it had allowed her heart to heal, but now we were really facing another "new normal." It looked as if this is where Mendy would be for the rest of her life, but the doctors said that this would probably only be possible if she maintained her current medication levels for the foreseeable future. When we would ask about life expectancy the doctor never give us a direct answer. He always said you can read the stats, but “you are not a statistic.” I know he was trying to help, but it always gave me the impression that he didn’t want to tell us the truth. When we would ask about coming off the medication, he would say we would talk about it in a couple of years! YEARS!!! At this point he wanted to see Mendy back in October 2006. At this visit nothing changed and he scheduled another check up in one year.

At some point during 2007, the length of the this struggle and the consistency of being drained by the medication had taken its toll on Mendy. She went through periods of taking herself off the medication. On those occasions, she would get a taste of what having some real energy was like. Without my knowledge, she would go weeks without taking her medicines, at some point I would discover it and we would talk through it to the point where she would agree to begin again. Those times were filled with frustration, because of the fatigue that would come with the medication. It is probably hard to understand unless you have lived it. At some point during the Spring / Summer of 2007 Mendy quit taking the medication all together. It is something she just did. Something I would have strongly disagreed with had I known, but what is done is done.

In November 2007, Mendy was scheduled for her annual check up. She knew she had not taken her medicine and was going to tell the doctor and see what he wanted her to do from here. After having another echocardiogram, Mendy waited for the doctor to come in and give the results. I didn’t go with her for this check up. There comes a time when you just don’t expect much different to happen, so you just settle in to the routines of life and keep going. The intensity of every visit and the condition as a whole seems to fade away a little. It is always there, but somehow you feel like you just have to go on with life and not talk about it so much. We continually prayed for healing, but I’m not sure we expected much. The doctor returned and asked Mendy several questions and then shared with Mendy to most unexpected news. Her heart had returned to full strength. The strength of the heart of a normal 34 year old woman. Something that we were told would never happen. It was truly amazing to the doctor and to Mendy. The doctor said that he had never seen this happen and he really couldn’t explain it. Mendy knew that she could explain it and was able to say to her doctor that she knew where the healing had come from. When she called with the news, I was stunned. Stunned because it was so completely unexpected, stunned because of the joy I heard in Mendy’s voice, stunned at the goodness of God and stunned at my lack of expectant faith.

We end this year (2007) with incredibly grateful healthy hearts. The journey has been long and God has been good. We give thanks to Him and wake up every day with the full understanding that the outcome of our lives is in His hands. We are thankful for His healing in this life and we know that He will ultimately heal “all our diseases” in the life to come. As with all things that we consider “ours,” we don’t believe that God gives us something without a plan for how it should be used, and that includes our health. We look forward to investing the healthy bodies He has given us as a living sacrifice to Him, expanding His kingdom through our brief moments on this earth.

I hope that this blog serves as a very grateful “thank you” to all who have fervently prayed with us for healing. I know that there are many and we are blessed because of your prayers and faith.

Love loud… risk often... HOPE ALWAYS,
david