Finding A Balance

One of the topics that comes up when one is being evaluated for a double lung transplant is a list of things that one will need to avoid after transplant. We didn't get a comprehensive list at that time, were informed that with the patient being intentionally immunosuppressed for the rest of their life after transplant, to keep them from rejecting their new lungs, there are precautions that have to be taken.

Interestingly enough, each center has it's own standards and list. Some sound a bit irrational such as not being around young children at all, others are more reasonable like just don't let young children climb on you and cough in your face when sick.

There are mixed approaches in the post transplant world. There are some that say my new lungs are a gift and I will do anything and everything to protect them, that includes going to extremes if I have to. There are others who say, the point of getting a transplant was to live, so I'm going to do just that, even if that means taking risks.

I can be hard to find the balance between living in a bubble and throwing caution to the wind. Right now we go out in public, but Elias wears a mask if we are indoors in a public place such as the grocery store or an indoor play place. His center would prefer he not return to work for a year to build up his strength and focus on appointments, but he will also be the most immunosuppressed for the first year, so avoiding germs in the workplace might also be wise. Some go back sooner, others aren't able to return to work at all. We use extra caution washing fruits and vegetables now and despite his strong desire for cooked sushi, we will not be partaking in even that for the first year just to be certain that there was no cross contamination. If I get sick, one of us might sleep in a different room and we carry hand sanitizer everywhere. I used to be the anti hand sanitizer type person, but no more. I don't yet use any essential oils on Elias so that I don't stimulate his immune system to reject his organs further and we have told friends and family that if they are sick, they unfortunately won't be able to visit.

We will still be able to travel to places that we have dreamed of visiting. We can continue enjoying family traditions like going camping, he just has to be careful not to sit in line with the smoke from the fire. We were told no real Christmas trees, but other centers say they are fine. That is a choice that we will have to make. Will not going to cut down our own tree take away from Christmas and if it does, do we decide that is one area that we are willing to take a little more risk? Especially since centers with a more strict set of rules didn't warn against that one?

You can ask on forums and get a range of answers or almost any topic, each patient has to decide where their line is. Do the rules in place allow patients to feel as though they can still live life since that was the point of transplant in the first place, or do they restrict them to the point of feeling that they have actually lost a quality of life from going through with the surgery?

We are finding our own balance, figuring out where to take extra caution and what means really living and making the most of this new life.