Week Six Post
Transplant
March 13 – 19, 2005
The glue that covered my scars is now completely washed away. I am able to easily roll over and change positions while lying down, and for the first time, I can be comfortable lying on my stomach.
I started to feel light headed after exercise and especially at night. As the week progressed, the lightheadedness became more persistent. It can be scary because at unpredictable times it intensifies and it feels as though I am going to pass out. This feeling is always accompanied by an odd sensation in my chest, a tightness or pressure that comes and goes in an unsteady rhythm. The arrhythmic quality of it made me concerned it involved my heart. So I listened to my heart with a stethoscope. Always my heart sounds just fine, except for a missed beat here and there which I believe is normal. I have not been able to associate the unsteady rhythm with my heart beat. Also, I feel these unsteady pulses higher up in my chest.
My cardiologist in Boston was concerned it might be atrial fluttering or water that had collected around the heart due to the biopsies and suggested I get an ultrasound locally. The ultrasound showed a perfectly normal heart, with an ejection fraction of 70%. Wow. It has gone up since the 55% ejection fraction immediately post transplant. I certainly have a powerful engine in me now!
By the end of the week, the chest sensations and lightheadedness were almost constant. It was hard to exercise or leave the house because I didn’t know if I was really going to pass out or not. I was glad to have been journaling my experiences week by week, as it proved to me these strange symptoms were a recent development and would likely pass in time, as other symptoms have done.
Wednesday night just after dinner the lightheadedness came on very strongly. I thought for sure I was going to pass out and panicked. I ran to the bedroom and got the blood pressure cuff. I was shaking too much to get a reading at first, so took it again and my blood pressure was high. My pulse was high. My body and brain kept bracing for another attack of arrhythmia (VT or ventricular tachycardia). I could sense my muscles anticipating a shock from the ICD. I had to tell myself, “I don’t have an ICD anymore. I can’t get shocked. I have a new heart. It won’t go into VT. It probably doesn’t even know what VT is.” I began to sweat. I wanted to call the doctor, or 911, but realized that would be silly. I knew I was just having a panic attack. Still the fear and anxiety were overpowering.
Luckily my mom was there to comfort me. Just having someone there helped ease the fright. After the hot and sweaty phase, as I began to calm down, I got cold and shaky. This lasted about another fifteen minutes. Then, the longest portion of the experience was simply trying to refocus on the reality of the present moment. Trying to convince myself that nothing bad was going to happen. To relax in the safety of my present circumstances. Meanwhile my mom did a great job leading me through creative visualizations, and finally telling me a children’s bedtime story. It was hard to focus on what she was saying, but the sound of her voice alone was helpful.
So, I am now dealing with the Post Traumatic Stress of my experience. My body and brain harbor patterns that reflect an illness I no longer have. No wonder, the cure came so suddenly—in the few hours it took for the transplant surgery to occur—there wasn’t time for these patterns to resolve. My mom suggested I start doing something I’ve never done before, start a completely different kind of hobby or activity that might help break up some of these patterns.
I am also dealing with fuzziness in my head. It feels like cotton is stuffed in certain parts of my brain. I think I’ve had this feeling since the surgery, only now it is becoming more apparent, probably because other parts of my brain are clearing up and I can now identify it. I’m not worried about it because I recognize it from my last open heart surgery and I know in time it will clear up. It keeps me in a restful place.
Other than during my panic attack, my vital signs have been fine. They took me off the blood pressure lowering medicine and my blood pressure hovers in the low 100’s to 110’s over 70’s. My pulse is usually in the 80’s or low 90’s resting. My weight continues to hover around 134. I’ve been eating well.
Thursday, March 17th, my 2nd daughter, Lena, who is 18, flew in from Hawaii where she is attending the University of Hawaii and majoring in fashion merchandising. Coincidentally (?) her boyfriend, Patrick, that she met there was raised in my town of Hebron. During Spring Break, both of them traveled back East to visit and meet each others' families. It was great to see her and to meet him. Lena came back on Saturday for dinner with my two youngest girls, Kellan and Aria (age 6 and 8) who are living in Marlborough, a nearby town. It made me so happy to have three of my five children together. My Mom cooked another great meal and for desert we had birthday cake in honor of Lena's 19th birthday the following week.
Later that night I had a surprise visit by Lena and Patrick. What a joy that was.
Despite the wonderful moments of the day, Saturday night I couldn’t sleep worrying about going to Boston on Monday for my 5th biopsy. I’m not proud about the part of me that worries. It’s a shortcoming I’d like to overcome, but deal with it I do. I’ll be going with my mom in the back seat of her car, and I won’t have the luxury of lying down in the back of Bob’s van if I don’t feel well. Looking objectively at the situation, it’s a step forward. I’ll be taking a lot of forward steps toward a more normal life in the next few months. So I gather my courage and renew my trust in God. After the difficult biopsies I’ve had, I decide to look forward to this one being easier. Doing so takes the worry away.
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