Lung Transplant Tips: "Be Realistic, do your research, stay positive"
By Dr. Omar H. Mohamedaly, MD, Medical Instructor in the Department of Medicine, Duke University
Lung transplant can be a wonderful thing. Certainly, as a transplant pulmonologist, I am potentially biased here! But a huge part of my job in evaluating patients for possible lung transplant consists of making sure this is the right thing for the individual patient. This includes remaining up to date in all aspects of managing lung disease, to making sure patients have tried – or been considered for – all of the wonderful new therapies that keep emerging for managing COPD (and other lung diseases). But it
also means making sure my patients are as best prepared as possible to undergo lung transplant.
I have always been curious whether things get lost in the shuffle from our patients’ perspective while we focus on making sure they are medically ready and fit for transplant. I recently asked some of my patients who have been transplanted for COPD what things stood out as important to them as they went through this process, and what they appreciated knowing beforehand as the progressed through their transplant journey.
The first comment a patient told me was actually one that I had told them during the early stages of their lung transplant evaluation – and no, they weren’t just trying to flatter me into thinking something I said resonated with them! “You are replacing one set of issues with another set of issues.” I think this is important for anybody with lung disease to remember going into transplant, not just people with COPD. Like any major surgery and certainly with the intensive immune suppression, we need to prevent rejection. Complications are always possible, albeit not insurmountable – sometimes you just need to have that mental grit to handle any setbacks along the way and overcome them successfully. As my patient succinctly put it, “You may have to go through quite a bit, but in the end you will get a substantial gain in your quality of life. You will be able to perform things you thought were no longer possible.” That is precisely why we do what we do.
Another thing that stood out from my patients’ comments was the importance of thinking about the transplant program as a whole and making sure it is the right fit for you. Transplant is not something you do every day (thankfully!), and so the feeling that you are at the right place for you cannot be underestimated. This can include anything from the pulmonologists and surgeons you meet, to the coordinators who help you along the way, to the way the team members interact with one another and with you. There is plenty of information on the internet to pick a few programs and find the one that is the right fit for you. If you feel uncomfortable with a hospital, seek out another. After all, you are the driver of this process, and we are here to help you along the way as best as we can.
I’ll let me patients do the rest of the talking in the form of a list of things they felt were
important to know:
- When you start thinking about transplant, you should immediately think about pulmonary rehabilitation. The importance of exercise cannot be emphasized enough. It will help in recovery immensely. The most important thing is to walk and walk some more!
- As mentioned above, think about the fit of the program and make sure you are comfortable with everybody and everything before you proceed.
- Be realistic, do your research, but stay positive.
- Think about any issues you have now and make sure you have them under control. For one patient, that was their chronic upset stomach, for another their anxiety. Either way, bring up your concerns early on and your transplant team will help you to have a plan in place to make the process as smooth as possible.
- Make sure your insurance coverage is appropriate and you are approved for both the surgery and the medications needed. Your transplant program will help you with that.
- Finally remember, you are not in it alone. Reach out to your transplant team – they will become part of your family – for better or for worse!
For more information about lung transplant, the Lung Transplant Foundation website is a great starting point. The Patient Resources section has a ton of invaluable information about getting started and can walk you through the entire process from start to finish. Your pulmonologist can refer you to the nearest lung transplant center or visit the United Network for Organ Sharing (UNOS) website for more comprehensive information about all transplant centers in the United States.