I wasn’t prepared for this

I haven’t wanted to write a post because I didn’t have any news to share and felt that I would just

sound like I was complaining, but after several thoughts kept entering my mind I felt impressed to share what I am experiencing now on a daily basis. When I first felt inspired to start this blog I knew it needed to be a journal that documented my journey with this process, including the good and bad.

My body is constantly changing. Since receiving my pacemaker, I find it difficult to become comfortable. I have knots in my back that make it difficult to lay flat on my back. If I lay on my left side, it puts pressure on my heart and then I can feel my pacemaker pacing my heart which is really uncomfortable. If I lay on my right side, each rib hurts as if I am moving them out of place. Laying on my stomach is not an option because it hurts my incisions and it puts pressure on both my heart and pacemaker. Since the swelling has gone down, my pacemaker digs into my stomach when I lean forward and if I lean back, the skin on my incision stretches and pulls over my pacemaker. Every joint in my body hurts and my body aches. If I do too much, which can be as little as getting dressed, my body starts shaking and I have to sit down. I’ve become very aquatinted with Tylenol as it is one of the few things that help me get through the day. Below is a picture of how I deal with the pain when it's at its worse.

My scars are healing. Can you see where my pacemaker protrudes out of my stomach?

Waiting is hard for me. I struggle with surprises, including giving surprises. I can’t handle the suspense. When giving gifts, I usually tell people what I am giving them before I even give it to them. When I receive gifts, I can’t handle not knowing what is in the package. As a child, if presents were under the Christmas tree before Christmas Day with my name on them I would unwrap them and rewrap them without my parents knowing.

If you know me well, you know that I am a big planner. I love lists and being able to check things off. I am really struggling with the fact that I cannot plan for the call. I don’t know if it will happen at night, while Zoe’s at school, when I home or out running an errand, etc. What I do know is that I have one hour to get Zoe settled with her caregiver and drive to the airport to meet my AirMed plane at the Salt Lake Airport.

I want the call so badly, yet I’m afraid. I have no clue when and how this call will come. What will be the first thing said on the phone. I have a plan of action in my head, but will the timing allow the plan to happen? I really hate the unknown.

I also find a feeling of guilt for wanting the call. I know that if I receive that call, someone has lost their life. I don’t wish that upon anyone. Why is my life here on earth supposed to continue and theirs end? I understand that I have no control in deciding if someone lives or dies, but there is still a sense of guilt. I have to remind myself that this is God’s plan and I may not understand it, but I must trust Him.

Back in February when I was visiting Stanford, I wondered if it was really time for me to be placed on this transplant list. Was I really sick enough? I mean I still had good days. I still enjoyed life and felt my quality of life was pretty descent. If I have the transplant, I’m not guaranteed years of life, but my quality of life will greatly improve. Now, all the changes and everything that has happened since leaving Stanford in February, I feel prepared to be emotionally and physically ready for the transplant. The fear of the pain I’ll experience immediately after waking from the transplant is gone. It will be worth it. I no longer second guess my decision to proceed forward. It is time.

This past week has been extremely physically, emotionally and mentally draining on me. When I get stressed I lose my appetite and stop eating. Thankfully my mom came over a couple days at the beginning of the week bringing me breakfast and lunch and encouraging me to eat. After the last two hospital visits, I had gotten down to 109 pounds. Now I’m back up to 113 pounds. I still have a minimum of 3 pounds to gain.

By Thursday, I was really struggling emotionally that after dropping Zoe off to school, I prayed saying this was too hard and that I needed help. Before I could even close the prayer, I received two text from friends checking on me. Before I could even respond to those text, I received a phone call from another friend asking if she could drop by and visit. While my friend was visiting another friend called to check on me and my therapist texted saying she would go in to work early to meet with me. Wow!

The past couple weeks friends have showed up with home made bread, freezer meals, a hospital gown made out of fabric with hearts and lungs on it, and just stopped by to visit. I’m excited to rock my new gown in the hospital.

I am beyond grateful for those who have followed these promptings. They have not gone unnoticed. You have brought hope and joy into my life and helped make this wait bearable.

Yesterday, I told my family that I was going to church because I needed to be spiritually fed and I was. The lesson was on ministering. Thoughts came into my head on how I could at this time in my life minister to others. I am excited to take action and follow through on some of the promptings I received.

I am so thankful for my Father in Heaven and for his guidance in my life. I am thankful for his love. I am thankful for his plan even though I may not understand it or know his timing.

On a total side note, I'm wireless now. I can send my pacemaker data remotely to my doctors. It's pretty crazy what we can do with technology now a days.