Our Story: After Transplant – Long-term

As I said, the travel to the transplant center eases up, but it doesn’t stop. Even without the anxiety of waiting for “the call,” always being ready to travel will relieve some stress and lower the chance that you will forget something. Check out the Our Story: Getting and Staying Organized pages for some tips on prepartations.

Many, but certainly not all, of the lifestyle restrictions have eased up over time. As we have become more accustomed to life after transplant, and as my husband’s body adjusts to the new lungs, things have changed. His diet has become more diverse. Amounts and levels of medications have been reduced.

We have become more savvy in infection control (such as, when/where to mask) and how to take precautions. There are certain venues and certain times of the year that my husband avoids completely. Much of it is risk-management. Are we willing to take that risk? Sometimes yes, sometimes no. It’s a subjective call. It takes practice, you learn from experiences and yeah, even mistakes. There’s a balance to strike.

The transplant team told us, “we gave you new lungs so that you can live life.” But then again, we don’t want to take unwise chances or live recklessly with the gift of life we’ve been given. So our philosophy is to use a combination of wisdom, common sense and prayer. We realize that, yes, we’ll try to make wise decisions while remembering that there are certain things that are beyond our control. We avoid big crowds, avoid sick people and mask up in all medical facilities. And no cutting grass or gardening (mold concerns). We are good friends with Lysol and Purel.

We are still extra careful with food. For example, I wash tops of cans (tuna, soups, etc.) with an alcohol swab before opening. All fruits and veggies are thoroughly washed, sometimes even with a little bit of soap, depending on the origin of the food. I tend to avoid fresh produce such as lettuce that isn’t bagged (especially after I saw a woman at a grocery store sneeze in her hand, not wash or sanitize and then pick out her lettuce, eeek). No buffets!

We have learned that post transplant communication is a huge deal. Managing the communications with and between our care teams has been the most tremendous assets to my husband receiving excellent medical care. For the first year, our transplant team was our primary care team. We then transitioned back to doing certain things locally. Determining when we call the local doctors and when we call the transplant team six hours away has not always been a readily obvious decision. It’s time-consuming and can be frustrating, but we’re grateful for the times when the communication is smooth between the local team and the transplant team. I try to fill in the gaps at other junctures. There is definitely a learning curve when it comes to effective cross-team communication!

Speaking of communication, I am compelled to say that having a transplant team with whom you are comfortable and can freely communicate often is probably one of the most important elements of a successful post transplant life. Just yesterday, our nurse practitioner at Columbia reiterated to me how it is a life long commitment to have a successful post transplant journey. And that is truth. Not only from the patient and caregiver perspective, but from the care team’s as well. We have been blessed beyond measure to be the recipients of that level of commitment and then some. Middle of the night, weekends, weeknights, holidays, vacations…..we’ve been able to access incredible care during all of those situations. The confidence, comfort and security that gives is indescribable.

Communication with your support community is equally important. One tool we use that continues to be a wonderful asset is the creation of a website. It minimizes how many times I need to repeat how things were going. We used the caringbridge.org site to update friends/family/community on our progress. Yes, it takes time to update our page, but I found that process to be therapeutic. The site is also tremendously beneficial to my mom and others close to us who can direct caring and inquiring people to the website to get the most updated information on our transplant journey. I highly recommend starting a site to help keep your loved ones informed while minimizing the burden on you. Social media can, of course, be helpful as well.