Lung Transplant Q & A

I've gotten lots of questions about life post-transplant, so here's a little info FYI...

Q. Will Donovan's new lungs eventually get CF?

A. No, never, non, nyet!!! No, these lungs contain brand-new cells, new DNA. These new cells do not contain the defect that causes them to produce the thick, sticky goop that started all the infections in the lungs, the death knell for CF people. Yippee! No more chest physio, ever!!! The deadliest part of the disease was removed from his body when the old lungs were replaced. Isn't that cool?

Q. So, does Donovan still have CF?

A. Yes, he still has CF everywhere but his lungs. All the glands in his body that excrete (the excretory glands) will still be affected, as nothing about them changed with the surgery. That means he still has CF in his sinuses, and will need to watch out for sinus infections, he still has CF in his pancreas and has to take enzymes to digest his food, and he still excretes too much sodium in his sweat, and needs to be careful about dehydration. But we can handle all that...

Q. So, his new body has accepted the new lungs?

A. So far, so good. But rejection of any new tissue is a life-long concern. It's not only a worry in the early part after surgery. Medication for anti-rejection began in the operating room, and will continue forever. They tell us everyone has some rejection episodes, some worse than others. Donovan will do daily "flows" or breathing tests. If these trend down over time, it could mean an infection or rejection.

Q. Won't anti-rejection drugs suppress his immune system?

A. That's the idea, to fool his body into thinking these new lungs are his own by weakening the entire immune system, and lessening it's ability to fight back. These drugs will make him more susceptable to common viruses and infections, so handwashing is a first line of defense. He will need to make changes in his life such as avoiding people who are ill (don't visit with the flu!), avoiding crowded theatres, elevators and the like. This is especially important in the early stages of recovery from surgery.

Q. How many medications is Donovan on right now?

A. Adjusting to this new med. schedule is a little mind-boggling at the moment. Here's the new schedule, but it will change with each Doctor visit. Many of these meds are repeated at night, and there's a few for noon as well, but you get the idea.

8am---cipro (antibiotic)
breakfast....blood sugar test & insuling
Folate (blood builder)
enzymes (digestion)
Potassium
Valcyte (anti-viral)
Vitamin D
Adek (more vitamins)
Metoprolol (for heart beat regulation)
Cellcept (anti-rejection)
Prednisone (anti-rejection)
Magnesium (supplement)
Maxeran (nausea)
Pantaloc (stomach)
Septra (antibiotic)
Voriconazole (anti-fungal)
Lasix (for excess fluid)
Azithromycin (antibiotic)
Chrorhexadine mouth rinse (4x/day)
Cardazem (heart)
Percocet & tylenol (pain) but we're not using much
Calcium
Tacrolimus (anti-rejection)

Q. How long does it take to recover from surgery?

A. It takes about six months to a year to fully recover from double lung transplant, and that is best-case scenario. Let us remember that Donovan was anything but, going into this venture. His recovery right now, however, is best-case!!! Isn't that remarkable?

Q. Why Physio & Rehab for 2-3 months?

A. Because most people having lung transplant are weakened with the disease prior to surgery... they have had infections and been unable to live a normal life, so they need strengthening, all over. This rehab helps them to fully utilize the new lungs, and gain muscle weight back. In Donovan's case, his body was eating his muscles as a means of fuelling his body when he was so ill prior to surgery. Also, being in bed for so long weakens the entire body. Physio is going well, and strides are being made every day. Today Donny was on the treadmill for 15 minutes! Balance is also affected by the surgery, so we're working on that, as well as core strenght, hand grip strength, every muscle group head to toe gets a work out. It's exhausting, but worth it!

Q. Will Donovan ever know who his lung donor was?

A. No, there are privacy laws in Canada that prevent contact between the recipient and donor families. This is in place for the protection of all parties, but at six months we may write a letter to thank the family. I'm already formulating this letter in my head (you know me!), but really, how do you begin to thank someone for a gift so precious? Words fail me! The letter we write will be censored to make sure we don't give information that would lead to contact.

So, hope that answers a few of your questions. Feel free to ask, and we'll attempt to answer. Today we went to physio, occupational therapy, and then for an ECG and chest x-ray. Donovan's resting pulse runs into the 120's at the moment, so they're attempting to slow it so it can be challenged with exercise. Does that make sense? We're at the hospital from 8 or 9 ish till after 12 each day. Then lunch, some much needed rest, and a little time for computer or TV till supper. Sleep, repeat. I wonder what a weekend away from hospital will be like?

Blessings to all,

Beth