Bethany Sprague was a healthy mom of two working as a physical therapist in St. Louis when she started experiencing a dry cough that wouldn’t go away for months. She was diagnosed with idiopathic pulmonary fibrosis in 2010 and soon began her lung transplant journey. Here, she shares tips for moving, before and after having a transplant.
As a pre- or post-transplant person, a major move can cause some anxiety, even if the move is for a better life. I think it is especially difficult leaving the transplant medical team that has been following you. They know you from head to toe and have been your life line.
I do not proclaim myself to be an expert on this topic. However, I did do a major move from St. Louis to Philadelphia after my first year post-transplant and am in the process of completing another major move to San Jose, California.
After having these experiences, I can suggest some things I thought of before the move and some things I didn’t think about that I should have.
Steps to take before moving
Here is a checklist of sorts of actions to take before the big move.
Before moving, check out the location of the nearest lung transplant center
This is important. Who is going to follow up on your care? You want a facility that knows what special care a pre- or post-transplant person needs. Getting into too rural of an area can be problematic. You might have to commute too far if you have complications. I had a friend who opted to live in a very rural area and had to drive an hour and a half for her specialty labs.
Research the Transplant Center you will be closest to
What is its reputation? How much experience has it had with transplant? Much of this information can be found on UNOS.org. Check in with your present lung team and discuss your plans with them. Most lung transplant centers have close relationships with other centers and do collaborative research. Ask for recommendations.
Look seriously into the area you are moving to
What is the climate? What services are available in the state for disabled or people on Medicare? Where will you exercise? Are there gyms or parks close to your destination? What things do you enjoy doing and can you do these without too much of a hassle?
Have a budget
This is important as most of us are on a limited budget. Look at your annual cost for medications not covered by insurance and your co-pays. Include what you can afford for rent, utilities, insurance, food, and perks. Some areas may provide you with money to spare. Other areas may cause you to reduce your level of living. Are you willing to do that to move where you want to?
Estimate costs for the actual move. Every move costs money. Do you have family and friends who can assist you to reduce the costs?
Make sure you have a support system
Moving to be closer to family is wonderful. It is important to have a support system, especially if you are single. Keep in mind that your children may be close for a while, but the new 20 to 40 age group is very mobile. With today’s economy, our children are forced to go where the jobs are. So, when making your location decision, factor in the reality that family may move. Will you still be happy in your location? Decide on a move and location that will be better for you even if this happens.
Leaving a bad situation is rough. But your happiness and feeling of well being is important to your health. We don’t decide to get a new lung and then live in unhappiness. If you have a home situation that you think is affecting your emotional or physical health, let your team know. They can help you sort out what to do and will give you the support you need to be strong in making some major decisions.
When you have made your decision for where to move, let your transplant team know
When I moved from St. Louis to Philadelphia, I was so scared about continuity of care. Would I have my medications on time? Would I be placed into the new system smoothly?
My transition was smooth. My team coordinated with the Penn team weeks before my move. I had my first appointment within the first two weeks after my move. My medication prescriptions stayed intact and I immediately felt cared for.
New things can provoke anxiety. But, new things can be the joy you need to stay healthy and happy. Before you know it you will feel comfortable in your new home. You will easily get to your appointments, know the roads, know what is around you and adapt.
I encourage anyone thinking a move to go about it systematically and make it work for you. After all, life is to enjoy!