Caring For His Heart

My husband and I met 3 years and 2 months ago. We found out on our first date that we had an interesting connection. He is a heart transplant recipient and I am part of a donor family. 

My stepsister, Lorraine, suffered from a horrible disease. Addiction. This illness took her on June 23, 2010. She was 24 years old. While she was on life support, my stepfather, John, was able to understand what the local OPO (organ procurement organization, Gift of Life from Philly) was asking the family. She was brain dead. She was hooked up to machines that were keeping her body alive but she was already gone. We were waiting to say goodbye. They were asking if her organs could be used to save the lives of others. John told the family that this is what Lorraine would have wanted. So John and Lorraine’s mother said yes. Lorraine was given rest and another chance. A legacy. 

After many health struggles that are another story, my husband, Derek, was in heart failure for 7 years. He received a new heart, someone else’s heart, on the same day that his doctors thought he might not live another 24 hours. He was given another chance. While his family celebrated this miracle at his bedside, Derek’s mind wandered to another place. Somewhere there was a family gathered around their lost loved one. They were crying and saying goodbye. And they had decided to make their loved one a hero. Give them a legacy. Save a life. 

No, Derek did not receive Lorraine’s heart. That’s always the first question we get. The timing wasn’t the same. But there is some type of magnetic connection. A reason we were supposed to meet beyond just falling in love. And it isn’t just about meeting me or meeting him. I think this connection has just as much to do with those around us as it does us. 

I didn’t give my stepsisters much of my time. I didn’t give my own brother and sister much of my time then really. Things are different now. I still occasionally do that whole regret thing that I so often tell others not to do to themselves. I believe I can help others and I wasn’t there for her. I didn’t help her. I didn’t give her the time she deserved. My mother loved her like her own daughter. She lived with the rest of my family. They lived with her. I wasn’t there.

“There’s nothing you could have done.”

“How could you have known?”

“You were young too”

“You were going through a lot then.”

That is what people said to me. I have said those same things to other people in their moments of regret. One thing I also often say is something that I think is really important. Through everything I have been through and for every regret I have this is always in front of me.

“You can’t go back. What are you going to do now?”

Lorraine and Derek were both given a chance 9 years ago, seven months apart. Derek would go on to live his life. Lorraine would live on in others.  A couple of years after we met, we visited the UNOS Donor Memorial in Virginia. There is a wall dedicated to honoring donors. I was looking for Lorraine’s name. I found her name. Right next to her name was the name Derek. This Saturday, Derek and I will join my stepsister Lisa (Lorraine’s sister) and their mother for the Pro-Act Recovery Walk in Philly. The walk is to end the stigma attached to addiction, support those in recovery, stand by those still suffering, and honor those we have lost. We are walking with the Gift of Life team. 

But that is another story to be told very soon. 

Awww…did you think this was a cosmo article? “Caring For His Heart: Ten Things to Guarantee Love”  Sorry. Haha. Not my style.

Heart transplants are interesting. I mean, that’s pretty obvious. I’m not talking about the science part of it though. I’m talking about my/our experience living with a heart transplant. There is this very delicate balance of living life to its fullest, living for today, giving back in every way you can and wanting to sterilize your house and never leave and avoid walking near anyone who may have possibly sniffled. I also need to not only keep my own worries in check for my very own sanity but I also need to either internalize that shit or make sure I share those things with friends. He doesn’t need to deal with my own process. That is not his job. No one wants to be treated like a patient. No one who is living wants to be treated like they might die. And likely they won’t. Those are all feelings put on them by other people. If I felt that way about him that would be on me. I can’t be one of those other people. 

Let me explain a little. 

Derek received someone else’s heart. That’s fantastic, right? Yes! It is fantastic. That other person couldn’t use it anymore anyway, so they chose to save his life. Doctors take that heart out of one person and put it into another person. Boom! New chance at life. 

Not quite that simple. 

Derek made it through all of the tough stuff that all organ recipients have to navigate in the beginning. The battle continues for life. 

He takes immunosuppressants twice per day, every day, exactly every 12 hours. The immunosuppressants do exactly what their name implies. They suppress his immune system. They cause it to be less effective. This is so that his body does not fight his new heart and reject it (work against it and try to kill it). The heart is doing a phenomenal job. But it is not his. It is a foreign object. If his body realizes this, it will attack thinking it is protecting him. 

So when someone is on immunosuppressants, guess what else can happen? What else happens when someone has a compromised or weakened immune system? 

Riggghhhht! They can get sick much more easily. When they do get sick, those illnesses or infections can last longer and be much more severe because they don’t have all of the soldiers in their army. 

When Derek is sick, although his immune system is weakened it is still heightened. It is still in fight mode to fight the illness as best as it can. Sounds great, right? The only issue is that a heightened immune system is more likely to detect a foreign object. And fight it. 

So now what? What do we do now?

Nothing, really. Those things are always in the back of my head but I can’t really worry about them all of the time. That would be paralyzing. And it would also not help him. Adding fear, depression and stress to the mix is the last thing an immune system (a heart) needs. Plus, I am fairly certain that generous donor hero did not agree to save lives simply so those people could hide in bubbles and be curled up in a ball shaking all of the time. I don’t think that is how they pictured their legacy. 

So what do I do? I take care of his heart. 

Ten steps to guarantee love. There might actually be something here. How do you actually care for someone with a heart transplant?

How to take care of his heart:

  1. Know his medical needs. Make sure he takes his medications on time every single day. Set an alarm for 5 minutes after his own alarm (yes, he should have an alarm) as a back up and double check with him. Don’t worry. He won’t mind. After a couple of missed times due to phones dying and chemo brain (Derek’s heart failure was caused by one of the drugs that cured his cancer), he will be thankful for the reminder and will let you know he took them before you even ask. He does enjoy living, after all. Forgetting meds is scary. Keep a list of the medications he takes. Know what doctors he needs to see and when. Be helpful, not bossy. Be aware. Be compliant with your own health needs to also protect him.
  2. Get outside and move together. Exercise and fresh air are key to a healthy heart. There are studies that talk about the difference in benefits of exercise by itself and outdoor exercise. Outdoor (when possible) is better. Exercise at least 4 times per week. At least one of those days should be outside. 
  3. Be around other people on a regular basis. The benefits of being around the energy that a group of positive people can provide is greater than any medicine. It’s contagious. When possible choose a group that is giving back or helping others. That will never be something you regret. You will almost surely guarantee the best and most healthy positive energy. Those experiences will add value to this second chance you have both been given. Plus, being around people can help your immune system build antibodies against illness. Just avoid anyone who is actually sick or fighting a cold if you can. At minimum, share no hugs and no closed-in areas. 
  4. Cut out and support cutting out negative people. I mean, that’s a good rule for most people with no heart condition. For someone who is living on a second chance and with a borrowed heart, there is no time for negativity. That is bad energy. People you allow in your life need to be supportive and positive. There is nothing worse than a living person being treated like a dying person. Actually it is worse when those feelings are more about how the other person feels about it all than what is actually reality in life. No one needs to hear about how the things that make him feel alive keep you up at night. Talk to a therapist. Be happy that they are happy. The End. This goes for you too.  Make sure your own support system is as strong as his. You will need it. He will need you to have it. 
  5. Have a LOT of sex. Like a lot. Now I don’t mean do this FOR his heart or FOR him. That’s not it and you should never do anything sexual FOR anyone else. Don’t do anything you do not want to. But if you are in love and you want to, make time for this for both of you. It’s a stress reliever. It’s fun. It’s good for hearts. Do it. Have the sex. All of the sex.
  6. Be supportive. He will want to talk to other people who have been through what he has been through. No matter how much you think you understand what it is like, you don’t. No one else but someone who has been through it does. Let him talk to “his people”. Give space. It might not even be for him. People need him too. This is part of being thankful for the gift. Talking about it and giving hope to others. 
  7. Don’t be afraid to explain things to others. It took me a while to get over feeling weird about why I needed certain things and why I act a certain way. Just tell people. “My husband is immunosuppressed so I’m sorry but I can’t shake your hand. I can, however, elbow bump!” Sometimes I pick up takeout or order ahead while Derek is parking. “Well done, please. Can you tell the chef it’s for medical purposes? He would love it the way the chef recommends but he has a heart transplant so it isn’t safe.” That one is interesting. We seem to get better quality meals when we pose it that way. Like a beautifully butterflied well done yet still tender steak. There is a weird thing there. When we don’t clarify, we end up with meals he can’t eat or bricks for steaks. “We can’t wait to come visit you. This might sound funny, but please let us know if anyone in the house gets sick. We can get a hotel and meet you for dinner but it might not be a good idea for us to stay there.” “Would you mind washing your hands before I show you around our house. I know it sounds crazy but, you mentioned your kids are getting a cold. You know, immunosuppressants and stuff” It is ok to tell people these things. The people you want in your life will understand. You can’t avoid everything. You can try to avoid some things. 
  8. Just love each other. Don’t think about stuff all of the time. Just enjoy each other. Listen to each other. Laugh with each other. I might be oversimplifying this but I think we sometimes forget just how simple this is. Don’t sweat the small stuff. Remember you are both actual people with brains and feelings. Look at each other that way. Tell each other stuff. Love each other. And love other people! Love EACH other. Love your family. Love your friends. Tell them you love them. It is good for hearts to say it and hear it. I’m sure there is a scientific study somewhere that supports this. 
  9. Share your feelings. Even though you don’t want to drop all of your “heavy” on his shoulders, it is ok to be honest and tell him what worries you. Likely those things worry him too. It’s ok to talk about that stuff. Just don’t live in that spot. Don’t make that the majority of conversations.
  10. Always remember that your situation is NO different than anyone else’s. You just know more. That is an advantage. Anyone can die tomorrow from just about anything. He could live until he is 90 and you could live another month. Because you know more, you can make the most of every single day you have for the next 50 or so years. You know life is a gift. Truly a gift. That is your advantage. 

I don’t know if those are the answers and I don’t even know if they are the top 10. They work for me. For us. 

We are very (very) lucky. Derek is strong and healthy. A large part of that is compliance. He does what his doctors tell him to do. The other part is just living life. Like really living. And laughing. We do a lot of that. 

For the person who saved Derek’s life, for their family, for my stepsister and so many others who chose to save lives when theirs ended, all I can do to thank them is try to live my best life. It sounds so cliche and corny. But it is the truth. I can’t go back in time. So this is what I do now. 

**Always seek the advice of a medical professional for the best choices for you and your family. My top ten works for us but there are a lot of details I did not include here that are important to be able to do all we do and stay healthy. Feel free to ask me anything. If I don’t have the answer, I will do my best to provide the proper resource or direct you to someone who can help.

One thought on “Caring For His Heart

  1. Thank you for sharing. Wow , Erin great blog. I learned so much. Recieving a heart is a commitment. I thought, take old out,put new in. Finished have a great life. Not the case. Wow. What a courageous life choice your husband Derek took. And a leap of faith that keeps ya’ll pressing forward. Enjoyed. Peace be with you. Sincerely Cookie

    Liked by 1 person

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