How difficult is recovery?
It depends. You are actually recovering from several things:
1. The disease that required you to get a transplant in the first place,
2. The transplant surgery itself, including the effects of extended bed rest in ICU,
3. The effects on your body of anti-rejection/immune suppression meds.Let's take the disease first. The condition you were in at the time you were transplanted has a direct bearing on your ability to recuperate. I am probably a bad example of this principle, as I was in end-stage IPF at its most aggressive. I had pulmonary hypertension, BAC (unknown to me or the transplant center at the time), was rapidly losing weight (60 pounds by the time I was transplanted), needed massive amounts of oxygen (24 LPM into a 100% non-rebreathing mask), and was only hours away from intubation and almost certain death. Other than that, I was fine.
If you are, however, overweight, brittle-boned, and/or immobile, you will have a difficult time getting transplanted, much less recovering. (Fortunately I was none of these.)
Second up is the surgery, which is probably what you really want to hear about. You (hopefully) wake up in ICU in a daze and unable to talk for the ventilator in your throat. Whether you receive a spinal tap some time after your operation or not, you will be on sufficent pain medication to forestall any feelings of pain or extreme discomfort. You will, however, be on a ventilator for the first few days, after which you will be taken off the vent and probably be put on a nasal cannula with a few LPM of oxygen as you gradually start to come around and become more aware of your surroundings. This is a hazy time, and you will probably be dubious of the fact that they even did the operation, much less that now you don't need all that oxygen you were on before the transplant. In fact, because of this, they may even keep your cannula in place for a few days after they turn off the oxygen. It happens.
All things being equal, after approximately a week and a half you will be moved into a single room in a "step-down" unit (or ward) with other transplant and/or critical care patients. Here you will begin your re-entry into the "real" world. You will have to actually get up out of bed, go to the bathroom, and report for CAT scans, PFT's, and other tests, which are usually scheduled in the wee hours of the night for in-patients such as yourself. I needed a lot of help doing these things, for just about the entire time I was there (10 days), my strength was nearly non-existent. In fact, it was probably a week and a half after the operation before I could even lift a leg up to get out of bed without assistance.
You will have had chest tubes while in ICU, as well as a catheter and other drainage devices, but these will mostly be gone by the time you hit the step-down unit. You will, however, be required to spit blood and other ghastly looking mucous into a vacuum hose and wand arrangement that is not unlike a mini-vacuum and absolutely disgusting to look at. In addition, you will be visited by an alien creature in a Level IV Bio-Hazard suit bearing a Nebulizer and dose of Amphoteracin-B--a yellow, smelly, nasty substance that you must breathe deeply into your new lungs (!) to prevent aspergillus. This will become the most hateful experience you will have during the entire recovery process.
Let me not forget the seemingly constant IV infusions of Gancyclovir and other solutions, some known, some unknown, and the beginning of what will be your new relationship with pills as we know them.
Physically, you be visually aware of the some 60 staples tacked across your chest from armpit to armpit, but it is not as uncomfortable as it sounds. And you will be covered with EKG monitor stickers that will be connected to a wireless (or perhaps wired) monitor system. These will provide a unique pleasure-pain sensation when one particular nurse rips them from your body in a faceless expression of pure domination.
Where are we? Oh, the *T's. By this I mean RT, PT, and OT. Respiratory Therapists administer the Amphoteracin-B, Physical Therapists will come in and urge you to try walking the halls with a large, ungainly-looking stand-up walker, and Occupational Therapists will come in and give you little tips and tricks on how to go to the bathroom without killing yourself.
Never a dull moment. In fact, you will start to realize that there never is a moment, period, when you can plan to have about an hour to yourself without some medical entity coming in and probing, testing, cleaning, talking, instructing, advising, pushing, pulling, or in some way disturbing what should be your time of quiet joy and relaxation, given what you've been through. Forget it, it ain't happening. This is basically medical boot camp, and it can drive you insane if you let it. Don't. You're alive.
Let's see, we're up to the meds. This doesn't really start to become a factor until after you've left the step-down unit and either begin a stay at an in-patient sub-acute rehab center, as I did, or possibly return home. After a few weeks, you will find that your feet are swollen, and the constant blood tests will reveal a constantly changing electrolyte balance that requires frequent adjustments and monitoring until you become stable. In addition, you will be taking a diuretic that will make you get up at night every hour-and-a-half and urinate until your body stops producing fluid that your now-disconnected lymph system cannot extract.
That's right--when they take out the lungs, they disconnect a lot of stuff, but when they put in the "new" ones, they only connect a few of them back up. One that gets lost is the lymph system, so it is extremely important to keep the lungs from getting "wet", as it is extremely difficult to "dry them out" once they do. Another item conveniently left off is one of the gag detector nerves, but you do retain a certain gag reflex. However, you still need to be careful that you don't inadvertently aspirate food by eating too fast, coughing, and accidentally swallowing it into your lungs, which can cause pneumonia--not good. This is not as dangerous a possibility as I expected it to be, but it deserves a note.
By now you will have had experience cleaning your Hickman Catheter, which is a line into your heart through which they both draw blood (out) and infuse antibiotics (in). You will be flushing the lumens like a pro, setting up a pump and giving yourself infusions, taking pills, doing a little light exercise, and eating everything you can get your hands on. This is heaven, you're thinking. Yup, it sure is.
After a time, however, you will likely experience a mild rejection, or worse, a more serious rejection, but with any attention, it will be detected before any serious problems develop, and more antibiotics and a stepped-up Prednisone dose will straighten you out. At worst, you may have problems with the graft between the old and the new parts, which occurs in probably 5-10% of all successful transplants (according to my own unscientific study). This may require the insertion of a "stent"--a tube that bolsters the graft wall. Some patients can have an over-active immune system that won't stop trying to heal the graft, and they might experience growth into the interior of the graft, possibly obstructing air flow. This may also require a stent, or even laser surgery that may have to be repeated more than once. These are the realities of transplant surgery and why you need the best talent you can find and a dedication to attending clinic visits and having routine "surveillance bronchoscopies".
Then, one day, you will realize that you are now three months out from surgery, looking forward to driving your car, almost done with all of the IV infusions, and about to be normal, if you can even remember what that is.
And all of this while on Room Air.