If you read our medical journal regularly, this post may seem redundant. If you need an update on what is going on, I’m going to do my best to catch you up from the beginning of Amanda’s heart journey as quickly as I can. I’ll get back to my regular journal posts and catch everyone up on the details of our transition to Vanderbilt over the next few days. First, let me take it from the top.
Eighteen years ago, Amanda had a headache that wouldn’t go away. We went to countless doctors, ending with an electrophysiologist, think heart electrician. By this time, Amanda had begun fainting, and it was found that her heart had been stopping; she received a pacemaker to prevent the sudden rate drops from happening. Then the opposite occurred; her heart rate was too fast. Many ablations, cauterizing of a node in the heart, later the problem was fixed, but that caused another issue. The vein that drops blood from your upper extremities into your heart was partially blocked due to scar tissue. Insert the first open heart surgery to bypass the vein. The surgeon was thinking ahead, too far ahead, and placed epicardial, outside-the-heart pacemaker leads for future use. These leads would cause tons of issues, including debilitating chest pain.
Seeking better medical care, we went to the Cleveland Clinic in Ohio. After multiple trips and a lengthy stay, they performed a second open procedure to remove the problematic leads and part of the epicardium, the sac surrounding the heart. In the mix of things, there were multiple pacemaker infections and wrong pacemakers implanted, along with revisions. Then we found an excellent cardiologist much closer to home in San Antonio. She eventually moved to Houston, and we promptly followed her for care. She was involved with heart transplants and could see the writing on the wall long before we did. She moved to Maryland, but the hospital wasn’t a prominent enough center for us to follow her too. She recommended a colleague in Houston. We transferred to his care; he has been our lead and point cardiologist ever since.
During these years, valve issues arose. All the pacemaker leads and procedures had damaged the tricuspid valve over the years. Already having two open chest procedures, they opted for a minimally invasive open heart valve replacement done between the ribs. This valve initially worked, but it turned out to be too small, causing issues. A procedure that had to be approved by the FDA via compassionate use to place a stent-type valve inside the now bad valve. That proved to be the same; it worked for a bit, then failed. A third open chest surgery was performed to place another valve, which eventually failed too. After being on oxygen 24/7 and having a horrible quality of life for an extended period, we reached the end of the road for her heart; Amanda needed a new one. The workup was done while she was hospitalized, and once listed, after ten days, she received a new heart. The transplant wasn’t a cure; more of a treatment. Swapping one thing for another in more than just the organ. Although the new heart did fix all the prior problems; she regained her health. A year out from transplant, we were hiking the mountains of Tennessee, one of the many “heartiversary” trips we would take in the years to come.
Heart-wise, everything was going great, but a little after the year mark on a ministry trip in New Mexico, Amanda had a fall down stairs and injured her knee. The high doses of steroids given right after transplant caused joint issues and, combined with the fall, caused her to need a knee replacement after about a year and a half of treatments for the knee. That replacement did not have a good outcome and had to be redone a year later. During this time, Amanda had some issues with sternal wires left from her transplant and needed them removed. She’d previously had some removed after transplant without issue. The remaining wires were removed, but a subsequent infection occurred. She had a wound vac and took IV antibiotics for the infections for weeks. Her immune suppressant drugs were lowered to allow for the chest infections to heal.
After this, she was doing well but had an incident with someone where an unwanted advance was made toward her. When she rejected the person, their actions were threatening. She feared for her safety as I was out of town. Her heart then began to race uncontrollably. It was stalker-like behavior from the individual that ensued. During this time, Amanda’s heart never went back down, but only increased even when there was no longer a threat later on. After speaking with her transplant team, they adjusted her medication. We had multiple consultations with them for further adjustments, but her heart still raced. We would find later that an acute stress reaction caused by the incident was what set off the rejection of her new heart.
After Amanda’s yearly transplant follow-up, while on our 4th “heartiversary,” we got a call from her transplant team that her antibody level came back high, which was a sign of rejection. She needed to undergo further evaluation. After more testing, the rejection was confirmed with a heart biopsy. She was then admitted to the hospital for over two months. Various treatments were tried, including multiple types of blood plasma exchanges and various chemo-style antibody treatments, all to no avail. By this time, it was learned that her heart had stiffened, a condition called restrictive cardiomyopathy. After getting out of the hospital, she began to have more symptoms of heart failure similar to those before her first transplant. She was retaining fluid badly, and even with her diuretics being increased regularly, she was hospitalized multiple times for fluid overload. After aggressive IV diuretics, she would lose over twenty pounds of fluid, then gain it back within a couple of weeks and be hospitalized again. She was being evaluated for a transplant, but we decided that with constant hospitalizations, it was best if we lived closer to Houston, a 5-hour drive from our home. So we temporarily relocated to an apartment in the Texas Medical Center.
The hospital transplant board decided, despite our doctor’s recommendation, that her case was too risky for them to accept. We were referred to another hospital in Houston and were about to transfer care there, but they would not take her case until she was six months clear of the heart rejection. It was then a battle to both keep the fluid off and keep her out of the hospital. She was fitted with a PICC line, an IV that goes directly to her heart, to be able to administer IV diuretics at home. She now takes this medicine three times a day and will still gain over 20 pounds of fluid in less than a month. With Amanda’s case so severe and complicated from her previous three open chest surgeries, our cardiologist referred us to Vanderbilt Hospital in Nashville, Tennessee. Moving for a second time seemed impossible, especially to wait for an undetermined period for a new heart. It would be a longer wait because of the antibodies that could not be kept at bay, now limiting the selection of hearts available.
We went to Vanderbilt to complete the evaluation just a couple of weeks ago. An approval would be good for a year, so we decided just to go and get the approval for a backup in case the other Houston hospital didn’t pan out. Once we returned from the Tennessee evaluation, we were still six weeks away from the scheduled evaluation with the other hospital. Vanderbilt quickly approved the transplant, but thought Amanda was too sick to stay out of the hospital, and wanted to admit and keep her until transplant, no matter how long. Amanda was only getting sicker, and we were worried when they mentioned that she needed a solid admission. We decided to step out on faith and go with Vanderbilt. Since they were quick to approve, and with an uncertain approval from the other hospital, it made the decision easier; however, it was still a difficult decision to move again. We are currently in Nashville and here for the long haul. Our time here will be a minimum of 6 months, but could be well over a year. How long the wait will be before the perfect heart can be found, and how long Vanderbilt will require us to stay after the transplant are both up in the air. Only time will tell.
God has seen him through many times before, and we will see Him do it again. Many have asked over the years how we get through times like these. The answer is simple: God. Jesus, to be specific, we have both put our faith in Him. We each have unique stories, but share the same destination: heaven with Him and we both have the certainty of that destination. Our time here on earth is finite and negligible compared to our time with God after this life. We look to that to get us through times like this; we are only here, but for a moment. In reality, the pain, the suffering, the discomfort, the uncertainty are all temporary. So we don’t focus on the temporary that we can see here and now, but on what we can’t see and is promised for forever.
Leave a Reply