Sharing your transplant news with family and friends is no easy task.  You may need to approach everyone differently, and each person will handle it in their own way.  When you have kids, this can be even more challenging.  In this article, I’ll share some strategies on how to approach these conversations and some things you can expect.

Before Sharing Your Transplant News

Well first, you need to start by getting a handle on the news yourself.  Then, pull yourself together because these are not going to be easy conversations.  Take some time to think about what you are going to say.  I would love to be able to give you the exact words to use, but everyone is different and only you know what your family members might need.

When we talk about a difficult subject, it’s natural for emotions to come into play.  When that happens, it can be easy to leave out important details or forget to relay the facts.

It is helpful to make a list of the key points you want to make.  This allows you to make sure you share all of the information you need to even as emotions run high.  Listen, I’m not talking about a script here.  This is your personal information to share and you should do so in your own way.  I’m just suggesting that a list will help you remember everything.

You can also jot down some answers to questions that might come up.  With the answers already in hand, you can take some of the unknowns out of the equation.  Some of these questions you may be asked are:

• How long do you have to live?
• Are you going to die?
• What caused this?
• How long do you have to wait?
• Can you get a transplant from a living donor?
• What kind of treatment is there?
• When will you be better?
• Can you still work?
• Will you go back to work afterward?
• What happens if you don’t get a transplant?
• What can I do?

Sharing Your Transplant News in Person

Whenever possible, I tried to share my transplant news in person.  Many of these conversations started without me.  My diagnosis was severe, sudden, and since I was in the hospital, I was not able to initiate some of the conversations.  My mom had the unfortunate task of relaying my news to family and extended family on my behalf.  I did, however, have numerous conversations after the fact with both family and with friends.

If you haven’t already noticed, I am a pretty straightforward person.  I do well with facts and so I did not beat around the bush much when sharing my news.  

My conversations sounded a little like this.  “As you know, I’ve been pretty sick and in and out of the hospital a lot lately.  I have received a diagnosis of End-Stage Liver Disease and have a 20% chance of living beyond 90 days.”

“I am working hard to get everything needed to be listed for a transplant before that time comes.  Once I’m listed, it will be based on how sick I am so I will be close to the top of the list.  Because I am so sick, a living donor is not an option for me.”

Even when you are trying to be as clear as possible, talking about a bleak diagnosis is not easy.  Please know that it’s ok to get emotional.  You might cry or need a break to pull yourself together.  Take your time and move at your own pace.

Once the shock wears off for most people, the barrage of questions will start and your answers will depend on your specific case.  There will be more questions from friends and family throughout your journey, so be prepared for that too.

Using Other Means to Communicate

When you can’t fill in family and friends on all of the latest in person, try to keep everyone up to date by using social media, email, or a tool like CaringBridge.  CaringBridge was the tool I chose to use while I was waiting and it was a great tool for me.  It’s a good idea to enlist the help of a friend or family member who is not your primary caregiver to update everyone.  They can get a weekly update from you (or your caregiver if you are unable) and then update your CaringBridge for everyone else.  This eliminates the need for you or your caregiver to give updates repeatedly.

Of course, you can also use social media like Facebook to update people as well, but sometimes our list of online friends is not necessarily the same list of friends you would share medical details with.  Sharing with online friends may bring some unwanted advice, criticism, or other comments that may not be helpful as you navigate all that is ahead of you.

Sharing Your Transplant News With Your Kids

Alright, deep breath here.  This part is difficult. 

Decide How Much You’ll Share

My son was 12 and my daughter 8 when I received my diagnosis.  I grappled quite a bit on how much to share with my kids and what I should withhold to try to protect them.  In the end, I decided that the last thing I wanted was for my kids to be blindsided if something happened and I was suddenly gone.  Telling them that I might die seemed so much better than the thought of them learning I had died suddenly.

I wanted to be completely honest with them, answer any questions they had as clearly as possible, and give them the opportunity (and approval) to feel whatever they needed to feel.  At least then I could be there to support them and comfort them.

I explained to them that I was very sick and that I was fighting very hard to stay alive.  I told them that I needed a new liver and that if I could get one, that would be what saved my life.  They asked me what would happen if I died and I explained all I possibly could to them.  We talked about how it was ok to be angry, sad, afraid, and worried.

Keep It Simple

There is no way that I can prepare you for conversations with your children.  No parent should ever have to endure that.  It is painful and hard and if it’s something you have to do, I’m so sorry that you have to go through that.  What I can tell you is that whatever you choose to share with your children is your choice.  You are their parent and you have to do whatever you feel is right for them.

The two pieces of advice I can give you when it comes to talking to kids (whether it’s your own or someone else in your family) is to be clear and concise and have therapy available for them.  Keep it simple and understand that there may be some delay in their response to the news.

The News Is Out, What Next?

Once you have finished sharing your transplant news and everyone has had time to process, it might be a good time to talk with them regarding living donation.  It’s important that nobody ever feels pressured to donate, however, some may be interested in hearing more.  Living donors must initiate the process themselves to be a donor and your transplant team can help you with information to pass along to them.

Sharing your transplant news is never an easy thing to do and people react (sometimes poorly) to hearing bad news.  Keep in mind that even though questions or reactions may seem insensitive, oftentimes it’s because people simply don’t know what to do or say.

Keep your chin up, you’ve just gone over one more hurdle successfully.  Remember, all you can do is handle one thing at a time.