It's likely that nobody forced you to get a transplant (granted, in rare cases some people awaken in the hospital and find out they suddenly got very sick and needed a transplant).  You went through life on oxygen, transplant evaluation, and likely are or already have been through the transplant process itself.

All for one reason.

To live more life. It's the same reason your doctors gave you the transplant, so that you can continue to live a fulfilling life

For the most part when I refer to risk, I mean risk of losing your transplanted lungs. Maybe that means a second transplant, and maybe that means once again living the restricted life of having damaged lungs, and it can even mean death if another transplant isn't possible.

In this case we'll ignore the general risks that everyone faces each day, such as falling down the stairs and breaking your neck.  We're only talking about risk to you directly related to your transplant.

The primary risk to us is infection, especially infections that affect the lungs as our bodies have a severely suppressed immune system. Infections of the lungs can cause irreversible scarring (fibrosis) which is damage to the lungs. The scarring might occur occur over multiple cumulative where you lose for example 10% of your lung function each time, or it might happen in a single shot from a nasty infection that the doctors have a hard time controlling.

These infections also cause the immune system to activate which increases the risk that they start attacking the donor lungs, which is referred to as rejection.

With every single breath we take, we're inhaling thousands of viruses, bacteria, and fungus spores, with each one having the potential to cause an issue.  Thankfully most of us still have some form of an immune system so our body is able to destroy these before they cause an issue...most of the time.  Without any immune system we would literally have to live in a bubble of total isolation.

Which raises the question...

There's no "right answer" to this, and it can be a difficult decision for each person to make.

Hugging and kissing 1 person probably  won't hurt you, and I'm sure your doctors would agree. However, hugging and kissing 1,000 people in a day would probably be considered extremely high risk and your doctors surely would advise against it.

So at what point does it no longer become safe and becomes high risk?

There's no saying.

As of this time I'm "only" 45 years old and I've been living with my transplant for 15 months, and if I beat the odds and live for 30 more years that puts me at 75 years old...and I'd like to live longer than that, so it takes a lot of years of avoiding risk to get there!

But I also didn't get my transplant to live in a bubble, and that creates a dillema!

Do I continue to do things that I enjoy in life that increase my risk of not making it to 75, or even 55 for that matter?  Or do I risk not living my life. hitting that 75 year birthday and wishing I had done more?  What if I spend my life living as a hermit, isolated from all the fun things and die of an unrelated cause, meaning all the precautions I took resulted in me not enjoying the limited time I had left?

When you think about it, it really does create a dillema for a lot of people!

And there's not a lot of good advice out there either. There's Lung Transplant Facebook groups filled with people saying "I'm 8 years post and I eat, drink, and do whatever I want because I got my transplant to live!", and at first glance you might say "wow, they're fine, I will be too!" but there is a certain amount of survival bias because the dead can't speak, and hardly anyone is going to fall terribly ill and decide or be able to log into facebook to post a "I wish I had listened to my team" post on their deathbed.

Balance is the key word. I try to look at everything and think to myself "is it worth the risk?"

Will you catch me going to packed concerts or NFL games? Absolutely not. There's a lot of risk at those types of places and I don't enjoy the experiences enough to think they're worth it.

Will I fly overseas on an airplane? I'm trying to get to Japan next month! I've always half jokingly said "If I'm going to risk getting sick and dying, it's going to be getting in an airplane and going somewhere cool, not eating a salad at some chain restauant."

I live in Minnesota and the weather is starting to get cool, cold, flu, covid, pneumonia, and everything else season is right around the corner and that increases my risk of getting sick by quite a bit. For a few months I'll re-enter "hermit mode" as I call it, where I'm extra selective of going places. I'll try to have my wife do all the grocery shopping. I'll rarely go out to eat, and if I do it will be during slow times of the day, I own a bar and I'll be there a lot less when customers are there.  I don't like doing it, but it's only for a few months and again, I'd really like to make it to 75 or more years old!

Even in the summer I try to avoid busy restaurants, I wear a mask when indoors at public places (or at crowded outdoor events), and I wash and sanitize my hands extremely frequently.

Do I follow my team's advice 100,00% of the time? No, I don't think anyone does. I've had a sip of fountain soda with ice from an ice machine, I've had a single chicken sandwich from a restuarant with tomato and lettuce, I've had a couple bites of soft cheese, and I've had some glasses of tap water.  But, I don't make a regular habbit out of them because I want to live.

You need to find that balance as well. You should live a happy and fulfilling life, but at the same time it would be a shame if all the work that you and your team did to get you here today was only for a few months or only a couple of years.

You won't catch me going on a cruise, but if you love cruise ships I won't shame you for it because flying overseas isn't exactly risk free either and that's worth it to me.

Just remember, is the risk worth it?