UW LUNG TRANSPLANT SUPPORT GROUP

MISCELLANEOUS USEFUL LINKS

The following links are to websites that may be of particular interest to members of our group. There are hundred's of websites out there with a wealth of information, but it takes a lot of time to go through them to find the best. If you know of a site that you find particularly helpful and you think may be of help to others, please let us know about it. Some people may have found sites concerned with a particular lung disease that others may have not found, a link to that website might be very useful to others with that problem.

MISCELLANEOUS INFORMATION

• 2010: The Year of the Lung Information on Year of the Lung as declared by the Forum of International Respiratory Societies (FIRS).

• After Shingles Many of our group will have shingles (unfortunately) before or post transplant. This site has good information.

• Bronchoscopy Information This site is quite technical.

• Cafepress.com Sells customizable t-shirts and other items, including organ donation logos.

• CMV  A "Frequently Asked Questions" page giving basic information about Cyto-Megalo-Virus on the transweb.org web site.

• Downloadable Personal Medications Record    This is a page on the AARP website which provides a medications records form which you can download and print if you haven't already made your own. It's nice to be able to just hand a copy to you doctor when you visit, and of course, you should always carry a copy with you.

• Medic Alert   This is where you get the Medic Alert bracelet or pendant with your medical condition on it. You can also keep an updated list of your medications and emergency contacts. This information can be accessed by telephone by medical personnel . If you already are a member, is your information on file up to date?  Better check now.

• MedlinePlus   A goldmine of good health information from the world's largest medical library, the National Library of Medicine. MedlinePlus has extensive information from the National Institutes of Health and other trusted sources on over 700 diseases and conditions. There are also lists of hospitals and physicians, a medical encyclopedia and a medical dictionary, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials.

• Page in Alpha2Alpha site  This is a page of transplant patient contributed thoughts on their transplants. It's not organized but just a page of transplant stories, tips, problems encountered, advice, and general musings. You might run across some things you had not thought about before or haven't been prepared for. One of the longer stories is from a Seattle man transplanted in 2001.

• Sun Precautions   This excellent web site is of interest particularly for transplant recipients because they become very sun-sensitive due to prescription medications. Many of our group have had problems with skin cancers from over exposure. This line of clothing is medically approved, and if prescribed by your doctor, is often covered by your insurance.

• The American Lung Association of Washington   To have a free air quality alert E-mailed to you daily, visit The American Lung Association of Washington web page.

• The Spoon Theory Although this is an essay about coping with the daily stresses of Lupus, it is a pretty good analogy for any chronic illness.

• Transplant Awareness, Inc., a non-profit corp. sells a variety of designs as well as hats, license plate holders, etc.

• Scientific Registry of Transplant Recipients   Several pages of tables of statistics comparing the UW transplant program to the national averages. This page explains the various tables. Go to the drop down menu near the top of the page to select the table of statistics you are interested in. Most tables are updated on or about June 12, each year.

• Writing to your donor family    Some good information about writing to your donor's family. Includes some sample letters for inspiration.