Sitting in the exam room during the first week after transplant – 5/5/2020

To catch up and read Part 1, go to the following link:

https://esereport.com/2020/08/21/idaho-finds-a-home-%f0%9f%92%97/

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Although I was grateful to be in our Ford Explorer with Sandra, I felt all alone. 

We took a detour instead driving straight home. The Santa Clara Kaiser transplant team scheduled an appointment for immediately after Stanford discharged me. The purpose of the visit was to do lab work, examinations, and additional testing to determine my short and long term needs for recovery. 

At Kaiser, Sandra had to help me out of the SUV and onto a wheelchair. My muscles were deconditioned from surgery. I could only stand for a few seconds before my legs began to shake uncontrollably from weakness. 

Although I didn’t feel well, entering the Kaiser clinic building lifted my spirits. The lobby was like a ghost town due to COVID precautions, but the sights, sounds, and smells of the facility provided a sense of comfort that everything would be okay. I spent so much time there during the past 10 years that being in the building was a homecoming in itself.

Sitting in the exam room was all too familiar. During the 7 months of the transplant evaluation period and 17 months with the LVAD, the exam room was a fixture on our monthly calendar. We waited in silence and nervous anticipation as loneliness crept back into my consciousness. My anxious stomach churned relentlessly with thoughts of the unknown.

The afternoon was filled with drawing blood, checking vital signs, and completing an electrocardiogram (EKG), an echocardiogram (echo), a heart biopsy, and a physical exam. The biopsy provides the most critical data point. It’s a somewhat invasive procedure that determines if the body is rejecting the heart. Rejection is at a higher risk during the first 3 to 6 months post-surgery.

It can be a bit intimidating. Rather than being in the comfort of the warm exam room, the procedure is done in the Cath Lab, a cold antiseptic surgery-like space that houses huge medical equipment resembling a James Bond movie scene where weird experiments are conducted. I had to dress in a gown and surgical cap before being wheeled into the cold Cath Lab.

While I was fully awake, the doctor began by numbing the right side of the neck to make an incision on the jugular vein. A tube called a catheter is inserted into the cut so the doctor can thread a hard wire into the vein to an artery that leads to the heart. The wire collects heart tissue to send to a lab for testing.

The entire process takes about 45 minutes. There isn’t much pain involved, but the sensations are strange. As the doctor thread the wire into my vein, it felt like his fist was pushing hard against the neck. I’m sure it was just in my imagination, but I heard the wire being threaded into and out of the catheter. All the while, the doctor, nurses, and technicians shouted numbers to each other.

When the doctor visit was complete, Sandra and I made our way back to the car escorted by an orderly who helped Sandra lift my limp and exhausted body onto the passenger seat. We left the medical center campus to embark on the rest of our lives. When we arrived home, our extended family and a few close friends greeted us, in social distance fashion, from their cars with honking horns and cheers.

Love washed over me and I quietly thanked God for the amazing gifts He bestowed on me. I smiled and mustered a weak wave before Sandra and the girls whisked me into the house. Overflowing with gratitude, Sandra and I worked as a team to get me into bed. I was happy and scared at the same time.

The first week at home was exciting and hopeful. Due to  overwhelming physical and emotional challenges, that would change quickly. Sandra had to do everything for me. Although she had a hectic work-from-home schedule, she cared for me round the clock with love, grace, and selflessness. Marisa and Erica were an amazing support team chipping in and keeping me company.

The chest pain from breaking my ribcage open was almost unbearable, even with the help of pain medication. The intense surgery deconditioned the rest of my body, which left me nearly unable to physically do anything. The transplant team later described the trauma of transplant surgery like being hit by a speeding 18-wheel truck on the freeway. 

On top of all that, one of the anti-rejection medications made me shake like a nervous chihuahua on a cold day. I wore a towel around my neck like a bib to prevent my shaking hands from scattering food all over my shirt or the bed. Mealtime was always frustrating.

A different med put me on a roller coaster of mood swings. Everyday, I found new ways to get on Sandra’s nerves and vice versa. We were at odds like never before. Emotionally, I was a wreck. Thoughts of failure and regret came roaring back to haunt me from morning to night. 

I felt helpless and unproductive. I made myself believe that I had made a mess of my life and the lives of Sandra and the girls. I believed that God had forsaken me once again as He did in the Stanford ICU. Despite the amazing support system at home, I felt all alone.

During the first month after transplant, routine dominated my life. Sandra prepared breakfast and helped me take meds. Lunch and more meds in the afternoon were followed by a shower. Showering was no easy task. Sandra had to help me undress, get in and sit on the bench in the shower, wash, get out, and dress. Evenings were capped by dinner and even more meds. The days and nights seemed to drone on endlessly.

I also had two clinic appointments and one biopsy every week. Being at the clinic was the highlight of each week. I was able to escape the dark dungeon my mind had created for me. At home, I spent nearly all of my time in bed. Brief conversations with the girls, sleep, and wallowing in my self-imposed emotional suffering filled in the gaps. 

In month two, the routine proceeded as usual and Idaho continued to avoid rejection, show positive lab results, and get stronger. The transplant team arranged for a physical therapist to make a house call every week to work on conditioning. The rest of my body was slowly recovering with short walks and exercises prescribed by the therapist.

Meanwhile, depression and anxiety maintained their hold on me. Loneliness and uncertainty drove deeper into my consciousness. My stomach churned, almost to the point of being painful, from depression and anxiety day and night. The meds prevented me from being able to concentrate for more than short moments. My passion for reading and writing was no longer. The situation was becoming hopeless. 

Family and friends gave me time and space to rest. There were few calls or texts. I so much wanted to share the details about my experience, but communications were brief and without substance. I was beginning to believe that they had abandoned me. In reality, I deserted them. While I stubbornly and selfishly waited for people to reach out to me, I dug a deeper hole of loneliness for myself.

Sandra was so busy taking care of me and tending to her work responsibilities that we didn’t talk much about anything other than lab results, medication schedules, and COVID precautions when I went out to an appointment. Other than discussions related to my medical condition, our conversations were also brief and without substance.

I thought that God abandoned me too, so I no longer read the daily mass to reflect on His wisdom. I couldn’t concentrate and lost the spiritual growth I had worked so hard to cultivate. I stopped reflecting on the writings of St. Paul the Apostle and the Buddha. I wasn’t interested in their words of hope and perseverance. Ironically, I was too focused on my own suffering to remember that they offered solutions to ease my pain.

In the real world that existed outside of the dark cloud in my mind, Idaho and I showed steady improvement. The transplant team shared that many patients considered the third month as the “turning point” in recovery. Patients reported that they felt great compared to the way they felt before surgery. I looked forward to that day to lift me out of the funk.

As Sandra and I walked (the first time I did so on my own) into the clinic for the 3-month appointment with the Kaiser heart transplant team, I felt awful. Physically, I was still weak and emotionally the clouds were looming dark as ever. I fully expected to hear bad news. I was convinced that my health was taking a turn for the worst.

Sitting in the quiet exam room with Sandra waiting for the team to walk in, I felt all alone.

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To be continued…