Anyone who has received an organ transplant willing to share their trail tips?

Hi Patrick,

No transplant here, but I did a quick google search and found a few things that might be helpful:

http://transplantfriends.com/forum/topics/anyone-been-camping-overnight-hiking-after-transplant

http://news.google.com/newspapers?nid=1914&dat=19990722&id=UckgAAAAIBAJ&sjid=kGoFAAAAIBAJ&pg=3461,3654697

Best of luck,

Doug

Thanks, Doug. This is exactly the type of info I was seeking. Stupid of me not to do a search before posting….

Patrick

Not stupid at all Patrick. Even with the information you can find through an internet search, getting any available real world examples from BPL members is a smart thing to do.

Best,

Doug

Patrick,

I don't have anything to add specifically about a transplant recipient, but there are many BPL members who have posted over the years about other health/medical issues. It might be worth searching for those threads (Crohn's, ostomy bags, diabetes, etc) for general information about hiking while managing medications, extra planning for emergencies, etc.

Good luck and welcome to BPL!

Welcome.

Welcome Patrick,

I've still got all my own parts (except for one bit that was sliced off the day I was born), and it's my wife, not me, that manages patients with transplants, however:

(talk to your doctor, blah, blah), but I'd lean towards "Belt & Suspenders" water treatment: filter and UV (Steripen), with iodine tablets as a back-up should the filter clog or the UV fail – then you'd still have two methods in play.

Grand Canyon rafters are out for 16 days and incidents of GI upset on the River are way down since everyone has adopted universal hand-washing procedures. Soap & water then hand sanitizer EVERY time after toilet use and before doing ANY food prep or eating. The hand washing station is the first thing to be set up and last thing taken down at each camp site. Trip leaders and experienced rafters set a tone early in the trip and you are considered a bad citizen and putting the group at risk if you cut corners. A similar mindset on your trips would help you AND everyone else along.

Otherwise, hiking outside with generally healthy people seems less risky than going to the supermarket, being in a car, bus or airplane with the general public.

You might carry a beacon-only or satellite communicator more than non-transplant hikers. I'd say communicator like the In-Reach for the ability to send and receive text messages instead of having only a non-specific panic button.

Totally different issue, but for inspiration: I know a guy who runs the Iditarod (1,049 miles, -30F temps, 2+ weeks on the trail, caring for 16 dogs) on an insulin pump.

If any of your drugs need to be refrigerated, post about that or PM me. I'm a chemical engineer, have brought ice cream on many trips and routinely smuggle frozen salmon across state lines.

I have not had a transplant but my wife has. She had a double lung transplant a bit over four years ago. Regardless of what you read about organ transplants, they are a life-changing event. My wife's condition/transplant occupied both of us for five years pre-surgery and now the four years post surgery. She was a runner and hiker: she no longer is.

A transplant is not a simple procedure like replacing the brake pads on ones car. It is a process and has been likened to exchanging one disease for another.

My wife had pulmonary fibrosis which is a progressive scarring of lung tissue and is not related to smoking. My wife has never smoked. It starts with recurring bouts of pneumonia and difficulty with breathing. It then morphs into continual breathing issues. During this phase, one starts seeing a pulmonologist who works at diagnosis. Finally a surgical lung biopsy is ordered and the word comes down: pulmonary fibrosis, bronchiectisis and other associated issues. You then hear that you will be dead within 18 months baring a transplant. Heart, kidney and liver transplant candidates go through similar ordeals.

Qualifying for a transplant is another job of work. One undergoes a whole battery of tests and evaluative procedures including a psychological evaluation. If the proposed recipient makes it through all of the evaluations, then they are listed for a transplant. This basically means that you are waiting for someone who matches the tissue and size criteria to die. It's not a really good feeling! While you are waiting, you are required to constantly be within 2 hours of the hospital where surgery will be done; a really short leash. The recipient must also have a spouse or companion who provides support while waiting and after surgery.

Finally, the call comes. For us it was at 4:00 am on a Sunday morning. A quick shower, a few critical phone calls and you are off to the hospital. The recipient is prepped for surgery while the donor organs are being flown to the surgery hospital. The candidate is then rolled into the OR for the start of about ten hours of surgery not knowing for sure whether the donor organs will be acceptable; if not then the preliminary surgery is closed and it is back to the drawing board. For us, the donor lungs were good so the surgery went ahead. Ten hours later, she was in the ICU with tubes and wires everywhere.

Recovery from the surgery is prolonged. The recipient is on anti-bacterial and anti-viral drugs for several weeks with all sorts of side effects. There is also a strong initial course of anti-rejection drugs and drugs to regulate blood sugar and blood pressure. My wife spent nearly two months in the hospital post surgery.

Now, she is on a regimen of drugs that she will take for the rest of her life. Anti-rejection, steroids, beta blockers, potassium control drugs and a variety of nutritional supplements every day are the new rule. One of the lifetime drugs is Prograf, a strong anti-rejection drug that also causes slow, progressive kidney failure. And, she is in continual contact with the people in the transplant clinic. She has to have twice monthly blood tests and an annual comprehensive and overall medical evaluation including a pulmonary function test, x-Rays and a thoracic CAT scan.

All of this, the medications and continuous monitoring take a lot of time and attention and have many side-effects. There may be a few transplant patients who are backpacking or running marathons after surgery but in my experience, having been involved with a large transplant care-givers support group, there are not many. The pre-transplant debilitation and the stress of recovery from surgery take more from the patient than they are likely to ever regain.

So, from my perspective, someone who has undergone an organ transplant has enough to deal with in daily life without making plans to go backpacking. YMMV.

Thank you all for your assistance and input – This is exactly the type of response I was hoping to receive from the mature and experienced community represented here on *BPL*.

Charles G:

I can certainly respect your point of view as to the feasibility of backpacking after receiving an organ transplant, and I acknowledge the validity of your first-hand experience in this matter. My perspective, however, is that if one has the physical capability post-transplant, there is no reason why one shouldn't at least investigate the possibility. I am well aware of the difficulties encountered by transplant recipients (I received a heart transplant over 14 years ago), but I believe that I was given a second chance to experience life to the fullest, and I intend to pursue the opportunity. As you stated, YMMV.

Patrick

>"YMMV"

+1

"have brought ice cream on many trips"

I, and possibly many others with kids, would love to know how to do this. Sorry for the OT post, but I'd really like to know.

"I, and possibly many others with kids, would love to know how to do this."

I'd love to know too, especially for when I go on small trips with my 35+ pound pack friends. I will usually bring some booze to share or pastries, but it would be hilarious to bust out ice cream sandwiches on day 3 of a trip.