Can I live long enough to get one?

Answer:

It depends on a number of factors--how sick you are when you are listed, the average waiting time at your transplant center, whether or not it is a "slow" time in terms of the number of transplants being performed, the aggressiveness of your disease, and whether or not you can survive any opportunistic infections that come your way.  To win this battle, you must do several very important things extremely well, especially if you have one of the more unpredictable lung diseases, such as IPF.

1.  Get evaluated and get listed at a transplant center--any transplant center--as soon as you can.  If this means bullying your doctor, then do it.  If this means having your doctor bully the transplant center, then do it.  If this means pulling every string you have that may be available to you, then do it.  Time is the bad guy in this scenario.

2.  Parlay your first listing into a second listing at a different but preferably nearby O.P.O., thereby double-listing.  There is more information on the necessity for this in the answers to other questions on this site.  The idea is that you accrue time in two O.P.O.'s, draw from two different geographic regions, and if one of the two centers you list at has a shorter average waiting time than the other, have a better chance of getting transplanted while you are still viable.

3.  Develop and maintain a close relationship with a local Pulmonologist that is experienced in treating patients with your specific lung disease.  By experienced, I mean that he (or she) sees, at a minimum, at least three or four patients every month that have what you have.  This usually means that you must find a doctor at a teaching hospital--or similar environment--where the tough cases are located.

4.  My strong personal opinion is that you should separate this ongoing care from the care you may (or may not) be receiving at the transplant center, usually in the form of pre-transplant clinical checkups, etc.  This is important for many reasons that can vary with each individual transplant center.  Bottom line, two minds are better than one, if you want to look at it that way.  It's actually much more important than that, but let's just leave it there for now.

5.  Use this close doctor-patient relationship to help you learn about and monitor your condition, and adjust your treatment as necessary, and make sure that any changes in your health are immediately communicated to your doctor.  Do not sit on a problem--sometimes a day makes all the difference.  Antibiotics need time to work, and pneumonia, for example, is a silent and deadly killer, and can act fast.

6.  Establish and adhere to a careful hygiene program, including religious hand washing, especially by visitors.  Avoid contact with small children and/or parents of children with colds.  Use alcohol on common contact surfaces such as telephones and refrigerator doors, etc.  Get a faucet-mounted water filter that filters out particles greater than one micron, such as the Pur Plus, and use it for all drinking water, juices, coffee, etc.

7.  Maintain a proper electrolyte level by drinking a liter of Gator-Ade (or its equivalent) each day.

8.  Keep on hand an emergency supply of antibiotics so that in the event you experience a drop in oxygen saturation level that you can't explain, you can go on antibiotics immediately, should you not be able to reach your doctor.

9.  Get an oximeter, preferably a fingertip model (such as the one shown on the introduction page), and use it regularly.

10.  Make sure that you have an adequate supply of oxygen on hand, especially for long weekends and/or holidays.  Squirrel away a little extra, in the event that you need to bring some of your own along in the ambulance (it happens).  Keep an adequate supply of extra washers, a spare regulator, hoses, cannulas, a flow gauge, Ayr gel and spray, Q-tips, and other accessories commonly used with supplemental oxygen.

11.  Have your beeper running on a fresh battery and get call waiting installed!

This is the greatest challenge facing the pre-transplant patient--getting there.  However, with excellent care, communication, and a strong will, the chances are much better than if you just simply hope for the best.  It's not easy, nor is it guaranteed--unfortunately, life does not come with a warranty.