Hi everybody. My name is Pisana Ferrari. I’m Italian, and today I’m going to be talking to you in this pep talk about living and thriving after a double lung transplant.
Just a few words about myself. For those of you who don’t know me, I was diagnosed with pulmonary arterial hypertension in 1988, so 37 years ago when there were no treatments, no surgery, no expert centers. There was pretty much nothing going on in the field of pulmonary hypertension. So the disease progressed and apart from a brief period on parenteral therapy, I underwent a double lung transplant in Vienna 23 years ago. I’ve been a patient advocate since 2001 with different organizations, and I’m the co-founder of IP, Italian Pulmonary Hypertension Association. I’m also Secretary General of the Alliance for Pulmonary Hypertension. I worked in communications and event management for over 30 years, and in my personal life, I’m a mom and twice grandmother.
Today, I’m going to be talking to you about adapting to the new reality after a lung transplant, the opportunities and the challenges, giving you some tips and advice, and I will conclude with my own personal journey.
I think it’s important when you talk about lung transplant to see where we’re coming from, because most of us will have been through a lot before the transplant. Many years possibly of physical limitations, which have impacted all aspects of our lives, many years, again, of medications with the side effects, checkups, and all sorts of ups and downs. To that, of course, you add that anxiety of being listed for a transplant and having to wait sometimes quite a long time, and the surgery itself and immediate post-op.
So, the after-transplant period may not be as easy as one expects.
There will be many days that will feel like this (it certainly was my case): I’m alive! I’m breathing well again, at last! What an amazing feeling to have a new life, a second chance! Anything is now possible!
But of course, there will be days that are more like this: “More pills! Even more checkups, or at least as many as before! All the precautions that we need to take about hygiene! The risk and the fear of rejection! And, asking yourself, “How long will I live anyway?”
So you need to learn to adapt to a new reality where there are lots of opportunities, but there are also challenges.
- So the opportunities: first of all, you’re cured from pulmonary hypertension, which is a pretty big thing. You’re breathing well again. You gain years of a new and certainly better life. And with some precautions and adaptations, it’s possible to resume work, family, and social life, travel, and physical activity and sport.
- Now, looking at the challenges, you’re still going to be a patient for the rest of your life. You will continue to need medications. Medications will have side effects. Regular checkups will continue to be necessary, and you will need to juggle these with your life commitments. Finally, you will need to learn to live with uncertainty.
Here are my three tips for day-to-day life based pretty much on my own personal experience, which is quite a long one.
First thing is to learn to listen to your body, second, taking care of yourself, and finally, making things easier for yourself.
Number one, listen to your body.
- This is about learning to understand that your body is constantly communicating with you. How? Through pain, discomfort, nausea, and anxiety. These are all messages that your body’s sending you.
- The important thing is to learn to listen, to interpret. To realize what this means and to respond.
- Even the details are important. Small symptom changes matter. Is it the medication? Is it a progression? Are you getting worse? Learning to tell the difference is important.
- And when in doubt, reach out! Know when to contact your medical team. Have all the numbers ready at hand, always.
Tip number two is about taking care of yourself.
- Eating healthy, fresh fruits and vegetables, avoiding processed foods, excess sugar and salt. This is pretty much common sense, and it goes for anybody. It doesn’t necessarily have to do with having a lung transplant. Of course, you do want to take good care of your new self and your new lungs.
- Some of the drugs that we’re going to be taking to avoid rejection are toxic for the kidneys. So keeping hydrated helps to wash these out.
- Sleep is vital for the body and for the mind to recuperate. So if you have problems sleeping, seek help. There are sleeping pills, but there are also more natural ways to facilitate sleep.
- Learning to understand what your body’s telling you is also about when it’s telling you to rest. If it’s telling you that, take a break.
- It’s also important to spend time in nature and get some fresh air and to do something, some physical activity. Try to find something that you enjoy, that is not too strenuous and that you can do in your everyday life.
Tip number three is about making life easier for yourself.
- For example, understanding your body’s rhythms, to better manage your energy during the day. Are you more of a morning person or more of an afternoon person? Try to use the times in the day when you feel more energy to do the things that are more difficult.
- Use the good days for meal prepping, for example, and for the more demanding tasks.
- Try to divide household tasks with your family or housemates, or if necessary, get some external help. I’m a big fan of technology, for example robot vacuum cleaners. I personally have a Thermomix, which is a robot cooker. And of course, there are all sorts of other time savers these days that can facilitate life.
- Take advantage of delivery services, for example, for groceries. And this is not just about avoiding carrying weights, but it’s also about when the weather is bad and it’s raining, getting a cold is really not good for our new lungs.
- Going digital, very important. You can do almost anything now online, book flights, hotels, restaurants, and any appointments.
- If possible, research, remote work options, or workplace accommodations.
I now come to my own personal transplant journey, and what I found very important.
- The first thing is about trying to meet other transplant patients to share experiences and get some real-life advice. Now, I was very lucky because my doctors in Bologna introduced me to some transplant patients. I met a few others in the screening facility and after my transplant through patient associations, and I still have contacts with them. I think being part of a community is extremely important.
- So, as I was saying before, one way to do this is through a patient association, but there are also now a lot of social media groups that bring together patients with lung transplants.
- I honor my routine, and I think this is vital. My medications first of all, and then I program and schedule all my checkups.
- I try to do some movement, a little bit of every day. I now have a treadmill, but I also do some gym and I’ve done yoga for many years. I try to go out and have a little walk every day.
- I eat healthy and luckily, I have a very good quality sleep.
- Very important is I share all my concerns with my healthcare professionals, the transplant team, because they’re not automatically going to ask you about quality-of-life issues like what you eat, how you sleep, if your mental health is affected.
- In my 23 years since transplant, there have been a lot of bumps and ups and downs, and we will all have some, but I try to hold on to hope. And I also trust in science, and I know there’s a lot of research going on and science is making progress.
- I find that living in the present, taking one day at a time helps to avoid anxiety about the future. And remember that nobody really knows what the future holds for them. So, it’s just a matter of not thinking about it because it doesn’t make any sense.
- And gratitude. Gratitude is very important. Every day is a precious gift, so try to make the most of it.
- I’ve added one final photo. It’s me wearing my favorite t-shirt which reads, “Celebrate every tiny victory”. Every small step, everything that you’ve done that was a little bit difficult and challenging should be celebrated.
- That’s my final message. Thank you very much for your kind attention and please feel free to contact me for other tips and advice at this number and at this email. Thank you very much.