Welcome to www.newlungs.com,
a complete guide to lung transplantation from a patient's point of view.
It is my primary goal to answer your questions before you can ask them.
Each of the questions below is accompanied by a link--click the bouncing
ball on the left to get the answer. It's that simple.
1. What is a lung transplant?
2. Why do I need one?
3. How do I get one?
4. What is it like?
5. When do I get one?
6. Where do I get one?
7. What does it cost?
8. Does it hurt?
9. What are the dangers?
10. What is the success rate and what does that mean?
11. How difficult is recovery?
12. Can I live without one?
13. Can I live long enough to get one?
14. How long can I live after I get one?
15. What can't I do after I get one?
16. What kind of long-term problems will I face?
17. What is it like taking all those pills?
18. What do they cost?
19. Does insurance cover it?
20. What about Medicare?
21. What about Social Security?
22. What other sources of information are there on the Internet?
(Psst--click the bouncing ball on the left for each answer.)
A little information about www.newlungs.com.
My name is Roger Stevens. I am an IPF patient. I was lucky enough to receive a double-lung transplant on June 10, 1997 at the University of Maryland. I've asked a lot of these questions myself (and am still asking some of them). Before I was transplanted, I created a website dedicated to IPF called Roger Stevens' Idiopathic Pulmonary Fibrosis Homepage (now known as www.ipfinfo.com). From it, I received a lot of email from patients and family members asking about lung transplantation. After writing many replies to very similar questions, I finally decided that it would be a good idea to create a dedicated web site that had all of the answers in one place.
So here it is--www.newlungs.com.
Many things came together almost magically during the creation of this site. First, I stumbled upon the domain name while trying to get to sleep one night, got up the next day and discovered that, to my amazement, it was available. Then, I began culling answers to some of the most frequently asked questions I get from readers of my IPF website about lung transplantation, and assembled them into the Question and Answer format you see above. There may be a better way to do this, but I haven't come up with it yet. As you can see, there's a lot to it, but information is power and the lack of it can only inspire fear. One of my primary goals is to eliminate that fear.
At the end of the day, I hope you will find comfort
in the information I've tried to provide here. As I always tell my wife
Judy, "If you don't know what to do, you need more information".
My hope is that after reading this site, you will have the information
you need to proceed towards a successful conclusion.
NOTES: While the site is more-or-less complete, there will be increasingly frequent additions and changes, especially in light of recent donor organ allocation rules changes. Be sure to check out the LINKS page for additional resources on the web. And if you have any questions or suggestions, please email them to me.
IMPORTANT UPDATE: On May 5, 2005, UNOS (the United Network for Organ Sharing) officially changed its lung allocation rules. According to the patient newsletter for Johns Hopkins' Comprehensive Transplant Center (CTC), under the new system the biggest difference for lung patients is that they must update their "score" through a series of routine tests performed every six months. For more information, see Johns Hopkins' website where you can click on this link to get additional information. For even MORE detail, read the actual document titled Policy 3.7 up on UNOS' website, most recently modified on June 30, 2006, and available in either a PDF file or a MS Word document. It explains in excrutiating detail all of the changes made in the allocation system used for all thoracic organ transplants. I've provided a link to the MS Word version--it's titled Organ Distribution: Allocation of Thoracic Organs. As soon as possible, I will try to better explain these changes and then ultimately incorporate them into the site--assuming I can translate them into everyday English, that is. Until then, please understand that everything you will read here refers to how things were under the old rules. It doesn't necessarily change any of the basics, but it is important, and I can't stress enough the importance of keeping continuous contact with your lung transplant center for any additional changes.
Finally, let me emphasize that this site is not the result of my work alone. It is the result of the combined efforts of everyone I owe my life to here on Earth (as we know it)--including the family of my donor, to whom I will be ever grateful. To all, I offer my most sincere thanks and greatest appreciation. But perhaps even more importantly, this site is dedicated to the patients and family members of patients with severe respiratory illness who must cope with the reality that they absolutely need a lung transplant. To them I say good luck, take care, and be well.
Roger W. Stevens
Revised October 2, 2006
© 2000-2006 Roger W. Stevens
All Rights Reserved.