Table of Contents

Getting A Lung Transplant

You probably don't want a lung transplant.

But you need one anyways.

 

Your life is about to change. Assuming all goes well, you're going to come out of surgery being able to say "I used to be terminally ill" , which is something most people don't get a chance to say.

However, to some extent, the life you knew before is over and your new life begins now...but fear not because it's not all that bad!

Your new life as an organ transplant patient will differ from your previous life in a lot of ways. First off, you're going to need to take a lot of pills every day just to stay alive. Failing to take those pills at the prescribed intervals (usually every 12 hours) for even a couple days will start the irreversible process of your immune system activating and treating your lungs like the foreign body that they are, and your death will likely soon follow.  It sounds harsh, because it is.

But, as long as you can take your medications religiously, it's as easy as waking up and going to work every day.

You will more than likely have to take these medications for the entire rest of your life. Very few people are ever able to go completely off their anti-rejection medications (we're talking decades), and due to their size and constant exposure to the outside world, lungs are at the highest risk of developing rejection and require the highest level of anti-rejection medications of all types of organ transplantation.

As a lung transplant recipient, you will also have very frequent visits with your transplant team. The first year after transplant involves the most visits, especially early on as the team wants to make sure you and your body are as stable as possible. Be prepared to go to clinic about once per week at minimum for blood draws, and at least a few times per month for things like chest X-rays, CTs, PFTs, follow ups with your doctor, as well as some bronchoscopies where they visually inspect your lungs with a thin flexible camera, occasionally take small tissue samples to test for rejection, and cultures to test for microbial growth.  Bronchoscopies are done under sedation and most people are asleep or mostly asleep during it and don't find them to be bothersome.

Life Restrictions After Lung Transplant

I'm putting this at the top because it's probably going to be one of the more widely searched for topics.

After transplant, you're probably going to need to make some changes to your life, if you want to live as long as possible.

You still have an immune system, it's just incredibly weak compared to that of a normal, healthy, person.  A normal person's immune system is fighting off infections nearly 24/7, the outside world is full of viruses, bacteria, and fungi. Not all of them are harmful to our health, but some certainly are and our immune system, under normal circumstances is able to do a pretty good job of fighting them off.

A lung transplant's immune system doesn't fall under "normal circumstances" and it will have a much harder time, and it's easier for it to be overwhelmed by things that a normal person can fight off without ever even noticing they were sick in the first place.  Sometimes a common illness like a cold for a normal person can be life threatening for a transplant patient, especially if that cold has already made the immune system "all hands on deck" where there's no extra resources to fight a secondary infection.

Infections also trigger an immune response, which increases the chance that the immune system detects the foreign lungs living inside of you. Therefore, reducing the number of infections you get can help extend your lifespan.  This is where the majority of your new life restrictions stem from, avoiding infection.

 

Avoiding Infection - From Other People

The best way I can describe it, despite your beliefs on it, is imagine that COVID rules apply

    • Wash your hands religiously, especially when entering your house
    • Carry hand sanitizer on you, in your car, at your desk at work, and use it all the time, especially after contact with people
    • When possible, avoid crowded areas, especially indoors
    • Wear a high quality N95 mask when in public, especially in the hospital where many sick people gather
    • Avoid sick people at all costs, their minor cough could land you intubated in the ICU, again
    • Communicate with people and let them know to tell you if they or anyone in their household is sick before spending time with them. You'd be surprised at how many times I've heard "I'm fine but my husband/child has pneumonia!"

Avoiding Infection - Food Borne Illness

This can be one of the biggest pains as it takes a lot of sacrifice. There's some foods that you simply shouldn't eat. It's not that the food item will make you sick, or that it will kill you, it's that it has a somewhat high chance of making you very sick and if it does, it can hurt and/or kill you.

Food borne illness comes in many forms and comes from many sources, and it's nearly impossible to detect unless you are eating food that is clearly spoiled.  It's caused by microbes, parasites, or the toxic waste left behind by the organisms metabolism (imagine microbial "poop/pee" though it's not quite the same thing.)  Some of these microbes or parasites can live on or in fresh food that was recently caught or harvested, some of it grows over time, some of it is passed onto the food item through contamination such as unwashed hands, cutlery that was used for other products, nature, or simply something like an orange falling on the floor from a retail stand and being placed back on the shelf, then not being washed before being sliced and juiced.

Listeria is a dangerous one, and one that many people are familiar with the "pregnancy rules".  Listeria is a bacteria that grows in damp foods such as raw or undercooked meats, soft cheeses, and deli meats.  The scary thing with listeria is that it has an extremely high mortality rate of close to 30%--and that's with good and quick access to hospital systems.  Getting listeria isn't common, only about 1,500 people contract it in the United States each year, but it's safe to say that most of them are immune compromised. So the chance of contracting listeria is somewhat low, but the risk you'll die is about 1 out of 3...not something to be taken lightly!

 

Foods That Interact With Medications

Surprisingly, this, at least for me, has been one of the easier rules to follow.  This section isn't about foods that get you sick, it's about foods that can and will have the possibility of interacting with your transplant medications, and you really don't want to do that.  These foods can make your anti-rejection medications less effective, meaning your immune system isn't suppressed which can lead to rejection.  It can also mean that these foods alter how your body metabolizes your medications, meaning their levels in your system can be too low, or too high.  Too high of some of your medications can quickly lead to kidney failure, nerve damage, and other permanant side effects.

Foods to definitely avoid:
Grapefruit
Pomegranite
Passion Fruit

I have heard that Blood Oranges might be harmful, but I have not looked into it much as it's been years since I've had one.

Other foods that have the potential to interact with your medications:

Herbal teas (talk to your team, herbal teas can be made from a wide variety of different plants, and some plants do have chemicals that can interact with medications)
Green tea (I've heard in high amounts?)
Supplements, herbal, and natural remedies: Ok first off, just because it's natural doesn't mean it's good for you. Aesbestos, cyanide, lead, and uranium are all natural as well.  Do not assume that just because something is natural that it means it's safe to take, your body is litterally held together by a delicate balance of a few carefully selected and highly monitored medications. You got the lifesaving transplant medication to live, and it would be a shame to potentially throw it all away because of some ground up plants in a pill or tea....right?  Many pharmaceuticals are derived from chemicals found in nature, and those chemicals can be present in random herbs, especially since they are regulated as a supplement and have no FDA oversight.

Foods with CBD/CBN: Beating the dead horse on natural herbs, and CBD and CBN are two compounds found in hemp and cannabis, and there is documented proof of them interacting with tacrolimus levels.  If you are approved by your team for THC, it's best to use reputable products that have little to no CBD/CBN. In my experience medical regulated THC has packaging that is more clear and the companies undergo more testing.

 

 

Complications & When To Contact Your Transplant Team

Life after transplant for most people isn't all that bad, you'll hopefully recover in a reasonable amount of time and hopefully resume the closest thing to a normal life that you can have.  However, there's almost always going to be speed bumps along the way and communication with your team is essential. When you're released from the hospital they'll probably tell you "We want to hear from you more often than not" and they mean that. Your body is completely different now, you've had an extremely major surgery, your lungs are foreign to your body, your immune system is severely suppressed, and all the nerves inside your lungs have been disconnected, and you're on a dozen or so medications that can cause problems on their own.  YOU ARE FRAGILE!

If basically anything changes for the negative, you should reach out to your team immediately.  You'll surely get plenty of instructions before discharge of when to contact the team, and when to go to the ER, and you should follow it closely.

Your team will absolutely want you to reach out if you develop any signs of illness, a low level fever, rashes, a cough, any congestion or tightness, problems with your stomach or digestive system, or if anything just feels "off".  Anything can be a sign of an infection, medication issue, or other complications.  For example: One day I felt like I had some kind of upper abdominal gas, but I also felt it in my chest a little. It was mildly uncomfortable, it wasn't painful at all but I decided "Well, they say to go in for anything" so I went to the ER thinking I would be wasting their time...Much to the surprise of everyone, including myself, I was walking around with a pulmonary embolism (blood clot in the lung), which is an extremely serious and life threatening condition! A few days in the hospital on blood thinners, and a year later I'm still on blood thinners.  I'm really thankful I followed the team's instructions!

Thankfully I haven't had any major illnesses yet, but since your immune system is suppressed, a mild cold symptom can rapidly progress into a life threatening multi-organ infection if it's not caught and treated early.  And since your suppressed immune system is severely strained dealing with 1 illness, it leaves the door wide open for other illnesses to take hold.

If you have any questions, contact your transplant team immediately! You'll probably have the option to message them, or you'll probably be given a transplant nurse's line that is staffed 24/7. A message might take a day or two to be read, so it's not a bad idea at all to give them a call. It's there for a reason!