This will be one of those emotionally honest posts. You know the kind. You’ve read them before. The scenario is that someone is opening up a private and secret part of their soul to readers. It can be uncomfortable to read. It can be uncomfortable to write. It can feel like you are witness to something that should be kept guarded.
It is because of those feelings that I am writing this post. I have thrown the idea around for a few weeks now. At first, I was so entrenched in my overwhelming feelings that whenever I attempted the post, it came out in a mess of words that meandered along with no form of meaning. The only thing within the writing was a burst of emotional outpouring here and there. I am past the period where the emotions were completely drowning me…but I worry that there are others out there who may be feeling the same way and wondering what is wrong with them. I asked “why am I feeling this way?” “What is wrong with me?” “Do I need help?”
If I am being totally honest, I would have to admit that I had a long list of unusual feelings. This list includes:
*Feelings of isolation
*Feelings of helplessness
*Wanting to be left alone
*Lack of energy
*Inability to concentrate
*General feelings of sadness, loneliness
*Extreme muscle tension
There is my list. Obviously. some of these feelings don’t make sense. The feelings of isolation were so bad sometimes I thought I was going crazy. Days on end of feeling alone and yet when opportunities arose for social interactions, I avoided them. I had a house in need of cleaning and organizing. The laundry was piling up around our ears, and yet most days I found myself sitting on the couch watching TV or just plain wasting the day away doing nothing. In April, my daughter received an extraordinary gift–the gift of life. I should be ecstatic. I should be happy. I should be dealing with all of this better….right?
After weeks of feeling this way, I began to worry about my emotional well-being. I did what I always do when I am perplexed, I ”googled” it. What I found was that my feelings of depression and anxiety are not unusual or rare following a heart transplant in my child. Articles have been written and studies done concerning the psychological well-being of primary caregivers of heart transplant patients. You can see the google results yourself by searching “primary caregiver psychological disorder post-transplant”. What I found was that in as much as 40% of transplant cases, depression, anxiety disorders, and PTSD symptoms are common. They are most common within the first year post-transplant, with the most severe feelings peaking between 2-6 months. These symptoms occur more commonly in women. They occur less frequently in women who work outside the home. The symptoms are exaggerated in instances where the primary caregiver has less outside support. Despite a successful transplant, feelings of stress are added by the new worries of medicine regimine, rejection, increased hospital/medical visits, uncertainty over future when transplanted organ (usually 10-20 years in hearts) fails, increased concern over sickness and/or illnesses, and the increased worry of common transplant complications such as diabetes, coronary artery disease, and/or cancer.
There it is, out there, kind of like the dirty secret that is hard to talk about. I’m sure that many of you may be wondering HOW I could be feeling this way. I would have wondered the same thing before I ever experienced it myself. I want to reiterate that I am not ungrateful for Abby’s gift. I am not unaware that many like her won’t ever receive the same chance. I am not diminishing our beautiful donor’s sacrifice nor his amazing family. I still think of them daily numerous times. I am still fiercely protrective over his memory. I still feel an indescribable connection to him and his family. I am still in awe and gratitude towards the medical personnel who made this possible. I am still extremely appreciative of Abby’s amazing friends who have loved her through this in a thousand little and big ways they don’t even know matter. I am still grateful to an amazing family and amazing friends who helped us through this every step of the way. Even though I have all these positive feelings, they could not prevent the onslaught of depression.
The purpose of this post is to be open about this aspect of transplant. Not every primary caregiver will experience this. But you might. If you do, please know it is normal. If your feelings are severe, affecting your ability to care for those around you, please don’t be afraid or ashamed to seek medical advice. If you are feeling this way, don’t be afraid to talk to someone who can help. And please remember you are not alone. Don’t be ashamed of it, despite the fact that depression and psychological issues remain a topic of secret shame in our society. You can get help, and getting help will make you feel better.
If you are a friend or family member of a caregiver of a heart transplant recipient, please look for signs they are needing some help. Don’t assume they are acting irrational or strange or ungrateful or unreasonable if they have some of these signs. Reach out. Listen without judgement. Remember that depression and anxiety are brought on by situations in which the stress is beyond normal everyday stressors. I can’t begin to put into words what it feels like to experience the extreme highs and extreme lows of heart failure and transplant. Watching as the life of your child hangs in the balance, hoping and praying for transplant, getting a new heart, having the realization of where the heart came from, possibly learning about the donor, and learning how to live life FAR differently than before is H.A.R.D. Give your loved one as much empathy as you can and try to help them talk about it. Try to help relieve the isolation that follows a transplant since a transplant child is VERY limited on where they may go. Offer to do simple chores for them like laundry, bringing in meals, or taking other children periodically. Don’t give them a time limit…these feelings can last for months. Don’t expect them to feel better when you want them to, stress works differently on everyone. Most importantly, keep reminding them you are there, you may not understand completely but you know what they are going through is hard. Love them. Care about them.
I am feeling better…much more like myself in the past week or so. I don’t know what changed. My boys went to stay with their grandma in Montana for a couple weeks (which was LONG for mom, but fabulous for them), Abby was able to get away to Cedar City to see a brand new sweet cousin with her other grandparents for a few days (with super strict cleanliness requirements and constant hand washing and care not to be exposed to stuff), and my husband arranged for an overnight babysitter (awesome aunt) for the twins so we could get away on a little retreat. We planned nothing, slept at a brand new Hilton thanks to a great military discount, had delicous Mexian food, and slept until 9:00 AM!!!! I was able to regroup, relax, and refocus a bit. It helped…tremendously. Had I not been able to shake the feelings…I would have definitely sought professional help. I still have moments of fear or sadness but overall, I am feeling better. School is starting next week, I have gotten my house a little more caught up and organized (okay, not the laundry), and I have other things to keep me occupied, like Abby’s online schooling!
Depression after transplant is normal. It is okay. I wanted to make that clear with this post. Don’t think it is wrong or strange or something odd. This blog is a way for me to spread awareness, and this is something I think should be discussed more openly for those dealing with it. Your child’s social worker can help. A counselor can help. A listening ear can help. A caring husband. A family doctor. A sympathetic mother. Lots of people can help, if you are brave enough to open up and discuss it. This is one more way that living with a CHD and/or heart transplant can affect us. Fixing your own broken heart is just as important as fixing theirs. Because this is worth celebrating: