What It’s Like to Wait for a Transplant

My dad needs a liver transplant. He has been on the transplant list for a long time now, what actually feels like forever, but is actually just since July 2019-ish. My family and I have gone through the excitement, the hope, the fear. And then a lot of other things happened that seemed not fair to have happen to us given that we already had a loved one on a transplant list, but since when has life ever been fair? 

Anyway, currently my dad is admitted to the hospital. I have lost count of what number admission this is. Sometimes it’s low phosphorous or potassium or sodium. Sometimes it’s spontaneous bacterial peritonitis (an infection of the abdominal cavity). Sometimes it’s pulmonary edema where fluid fills the lungs. Sometimes it’s a bowel obstruction. All the times it sucks, and all the time he is miserable because now he’s sick and also not at home and because of COVID, he can’t see any of the people that normally help lift his spirits. (FYI, no need to panic. This time it’s the sodium).

The thing about all this is that before, when my mom was still here, we were so optimistic. We just knew that my dad would get better. But since my mom has died, it feels more desperate. It feels like if he doesn’t get a liver, then I will be an orphan, and the oldest girl, and I don’t think I can shoulder the responsibility of what it will imply for my brother and my sister and I for me to be in charge of our little branch of the family. Before I was always convinced that my dad would get a transplant and get better, but as I watch him get sicker and sicker, some days I’m not sure anymore. In just the past 3 months alone, his condition has deteriorated so quickly, and it seems like things are hopeless. The person who protected me and took care of me for my entire life is suffering, and there’s nothing I can do.

So I thought I would tell you what it’s like to have someone you love on a transplant list. It looks like cautious optimism, being ever hopeful while constantly worried that allowing yourself to hope will make the pain all the more unbearable if a new organ doesn’t become available. It looks like weekly COVID testing since September, and weekly blood tests since I can’t even remember when, and bruises all over a belly that have suffered who can even remember how many paracentesis procedures, and wondering exactly how much shortness of breath is too much shortness of breath, and how much dizziness is too much dizziness, and how much pain is normal vs. how much signals something life-threatening.

It looks like wondering if every holiday or birthday might be the last one. It looks like praying for your loved one to live while feeling guilty that in order for your request to be granted, someone else’s must be rejected. Somewhere, one day, if my dad gets his liver transplant, it will be because somewhere there’s a mother who prayed her child would survive a car accident and it didn’t happen, or some other equally horrible circumstance. I have been the one who prayed for their parent to live, sitting in the little gray room when the doctor and the house supervisor come to inform you that in spite of their best efforts, your person could not be saved. And now, by hoping against hope for my dad to survive, I am wishing that horror on someone else. 

And that brings us to another fear. The way that my dad gets the organ he needs to save his life is through a huge, complicated surgery. Infinitely more complex than the procedure that caused my mother’s death. So there’s that.

And while we’re waiting on this life saving surgery, let’s not forget about the constant fear that he will fall and die of a brain bleed because he has like 4 platelets in his whole body. Or the concern that his muscles are becoming so weak he might not be able to take care of himself, but he doesn’t want help so he’s determined to take care of himself. Or the worry that he will catch COVID 19 or some other illness before he ever gets to transplant day. But for today, since I can’t change any of this and neither can he, we choose to pass our hospital day watching Ghostbusters (1984, not Melissa McCarthy). 

During all of this, there are still kids who need taken care of, marriage to work on, jobs to be worked, groceries to be bought, birthdays to plan and celebrate. All the things that go with life, which is in addition to the fresh grief of the past 2 years. 

Don’t get me wrong. I haven’t given up, and neither has my dad or the rest of my family. We band together and take care of each other, and we try to stay positive all the while fearing the worst and hoping for the best. As My Friend recently told me, “It’s all about perspective. You can’t just obsess about the now. You have to picture the 6 months from now, where you’ll be and how much different that will look.”

Photo by Ryanniel Masucol on Pexels.com

My problem at the moment is that I can’t see the future. I know that no one can truly see the future, but I used to have some semblance of the future, like where I would be in 2 months or 6 months or one year. Right now I can’t even see tomorrow. It’s like living inside of a tiny dark box, sitting with my knees to my chest with my toes touching the edges of the box and my head maybe an inch from the top, and feeling like it will be that way forever and always. And the thing about the tiny box is that I’m not even sure if it’s suffocating or comforting at this point because the thought of allowing anything else in is just too overwhelming. 

It’s waiting to see if someone will live, while waiting for someone else to die. If you can make that seem normal in your head, I would love to know how, because I am struggling. I’m learning what it means to be pressed but not crushed, persecuted not abandoned, struck down but not destroyed. A month from now, I hope to be telling you a very different story, but this is just where I am for now. Like I’ve said before, honesty isn’t always pretty. Usually it’s not. But  it makes me feel better to get it all out. 

4 thoughts on “What It’s Like to Wait for a Transplant

  1. Prayers for you and your family. If you need help with grocery shopping or child care or running errands. I would be happy to help. I know it’s hard when you have a sick parent and trying to balance everyday life.

    Liked by 1 person

  2. I used to work with your dad many years ago. He is an amazing person father and was a loving husband to your mother. Please know that I am praying for you and your family and especially your father. I can only imagine the difficult days you are having. I know it’s hard at times to understand God‘s plan for each one of us but I pray that he give you strength courage and patience to see his plan fulfilled.

    Liked by 1 person

  3. So glad you have your blog to be able to express your life experiences at this moment in your life. God is good and I pray He will comfort you and give you strength for these difficult times in your life and your family’s lives. He will see you through the bad times and the good, continue to trust Him. Then Breathe, Simply Breathe.

    Liked by 1 person

  4. Amanda I’m sorry you have had and are now having so much on your plate. You’re a very strong woman. Please know you’re in my thoughts and prayers. If I can do anything please let me know.
    Angela

    Liked by 1 person

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