Lung Links

Members personal web sites

• Clay Wilkinson
• Luke Chadwick
• Bill Probstfield  Bill's book,   Smell The Rose Blow Out The Candle   is available here.
• Vic Rawlings  Vic is a BB board member (from back when we had a Bulletin Board). He's been keeping in touch for quite awhile, now. He lives in England and was transplanted in1998.
• Max Haggerty   A University of Oregon student from Homer, Alaska, awaiting transplant.

Comprehensive lung transplant sites

• Heart-Lung Transplant Support Group
• Transplant Support- Lung, Heart/Lung, Hear
• Second Wind  Second Wind is a support organization for those considering or waiting for a lung transplant, lung transplant recipients, their family members and caregivers.
• New Lungs    A lung transplant patient explains the whole process through a series of questions and answers. A good place to start if you if you do not yet know enough about transplantation to have specific questions.
• TransplantExperience.com  this is a very comprehensive and informative site about transplantation. Well worth checking out. The Fujisawa Healthcare Inc. has merged with Astellas Pharma US, Inc.  and their website is www.TransplantExperience.com .    The name is new but their products & commitment to transplantation remain the same.  (so they say) The Fujisawa Co. was supportive of our baseball games and furnished shirts & hats a few years back & then they would send out questionnaires to transplants.

Financial Aid

• Washington State Health Insurance Pool   This web site is for Washington State Health Insurance, and is a good one.  Several of us have this program as it covers transplant, you can get prescription coverage, and the wait period is short, even with pre-existing conditions.  It is especially for persons with already existing problems that other ins companies might not want to be responsible for.
• The Partnership for Prescription Assistance   Most major drug companies and some other agencies provide help in purchasing medications for people who meet certain income and need qualifications. This site will tell you which if any programs you may qualify for and provide help in applying. The site entails filling out an online form (basically, what meds you need and what is your income) but requires no personal identifying information.
• RxHelpforWA   This site is very similar to the one listed above.
• National Transplant Assistance Fund   NTAF guides patients through the process of grassroots fundraising. NTAF also administers and disburses funds raised for uninsured transplant related expenses. ( I don't know of anyone who has used this service but it sounds like it might be worth checking out if you are considering  starting a fund raising campaign ).

Organ donation

• United Network for Organ Sharing   UNOS is a private organization that manages the Organ Procurement and Transplantation network ( OPTN ), under contract with the US Department of Health and Human Services. Transplant Living   is a part of the UNOS site and provides a step-by-step guide through every stage of the transplantation process.
• Living Legacy Donor Registry   Register to become an organ donor. Information about organ donating.
• LifeCenter Northwest  LifeCenter is responsible for facilitating the process of organ donation in 190 hospitals through its service area. A group of highly trained LifeCenter team members work with medical professionals throughout the region to identify potential organ donors and carry out individual’s wishes regarding donation.

Alpha 1

• Alpha-1 Association    Acomprhensive site covering the Alpha-1 Association, AlphaNet, and Alpha-1 foundation.
• Alpha2Alpha   Peer-to-peer support and information for people having emphysema and other health disorders related to Alpha-1 Antitrypsin Deficiency.

Pulmonary Hypertension

• Pulmonary Hypertension Association   Pulmonary hypertension is a rare blood vessel disorder of the lung in which the pressure in the pulmonary artery (the blood vessel that leads from the heart to the lungs) rises above normal levels and may become life threatening......

 

COPD/Emphysema

• Efforts   If you are looking for more information or support about Emphysema or other Chronic Obstructive Pulmonary Disease (COPD), you have found the most energetic and comprehensive organization on the web. (their words, but this is a very popular site).

Cystic Fibrosis

• Cystic Fibrosis Foundation

Sarcoidosis

• Foundation for Sarcoidosis Research

Pulmonary Fibrosis

• Coalition for Pulmonary Fibrosis  The Coalition for Pulmonary Fibrosis (CPF) is a national nonpartisan organization led by physicians, medical research professionals, patient advocates, and organizations impacted by pulmonary fibrosis.

Lymphangioleiomatosis

• The LAM Foundation   The LAM Foundation provides support, education, and hope to women with Lymphangioleiomyomatosis (LAM), a progressive, debilitating lung disease

Bronchiectasis

• http://www.bronchiectasis.info    This site has lots of forums dealing with Bronchiectasis

• Downloadable Personal Medications Record    This is a page on the AARP website which provides a medications records form which you can download and print it 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.
• CMV  A "Frequently Asked Questions" page giving basic information about  Cyto-Megalo-Virus on the transweb.org web site.
• Sun Precautions   This excellent web site is of interest particularly for transplants  because we become very sun-sensitive due to our prescriptions.  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 most often covered by your insurance.
• After Shingles   Many of our group will have shingles (unfortunately) before or post transplant, and this is good information for them.
• 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.
• 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.
• Bronchoscopy Information
• 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.
• ustransplant.org   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.

Cafepress.com   Sells a t-shirt with a clever logo picture below.  Transplant Awareness.org, a non-profit corp. sells a variety of desighns as well as  hats, license plate holders, etc.

The Surgeons

 

Michael S. Mulligan, M.D.

Douglas E. Wood, M.D.