~ Schedule for second half of 2010 along with September 26 picnic is now available. See Picnic and Schedule - 2010

Here is a note from Terry & Phyllis on Medicare Meds changes for 2008 :

The Caregiver's Forum will be meeting in Milstien on 7HS in the Reemtsma Conference Room from now on. The group meets every other Thursday from 4:00-5:30. This is a very valuable support session that is meant only for caregivers. Come one, come all. Here's the fall schedule for the forum. It runs from October thru February, 2008. Available as a Word document or PDF file .

Frontline Report from the front page of the Nov. 29 NY Times on COPD & ancillary articles. Includes many articles & photos/videos on Columbia doctors. If no longer available on nytimes.com, here is a copy in PDF format . And, here's another article from the Nov. 30 NYTimes on Oxygen delivery and cutting Medicare (in PDF) . 

Medicare & You 2008 has been released and you should have received your copy by now. It lists the changes for 2008, along with the new costs. See Medicare.gov for more info.
Medicare also has a new tool to compare plans, and to address the doughnut hole. Here's some information .

Don't forget your flu shots. Most drug stores, doctors, and clinics have them now, and they are free for Medicare patients. If your transplant was less than 6 months ago, make sure you check with your transplant pulmonologist before getting the shot. And, make sure no one in your family gets the live virus version. You can look up where the shots are available at www.FindaFluShot.com.

The NYP Transplant Newsletter and Healthpoints Newsletter fall 2007 editions are out. The Transplant Newsletter contains an article about multiple organ tx and also on the expanded CF transplant program. The Healthpoints Newsletter specializes on Breast Cancer, but has an article on High Risk Lung Assessment Program. Here are the Newsletters Home: NYP & Dept. of Surgery .

Here's an excellent page from the transplant support group on MSN that discusses what questions to ask, evaluation, etc.

Here is a copy of Dr. Wilt's powerpoint slides (10/1/07) on Acute and Chronic Rejection (and, in Adobe PDF format).

The Holiday Party has been scheduled for Tuesday, Dec. 4th. Check your calendars, and RSVP to Barrett Gray by Email or phone (212-305-6266) by Nov. 27. if you can make it. It's in the Faculty Club again, so it should be a blast. See the Flyer for more information. Flyer is available in Microsoft Word (.doc) or Adobe (.pdf) formats. 

Lung Transplants obsolete in the future? Read about the Stem Cell research in progress overseas to grow and replace damaged lung tissue. Here's the news article web site , and here it is in PDF format (printable). (And, here's another article on it from Theraputics daily , Reuters. & Medical News Today .)

Many people have seen my tiny, purse-sized portable nebulizer and asked me where to get one. Well, it's an Omron NE-U22V  and it varies in price from $175 to $350. Ebay seems to offer the best deals .

I've also been asked about my Rollator, which is handy to have. If you can't walk long distances without needing rest, or have a bunch of stuff to carry on a long walk, the Rollator is a nice option. I personally have a Go-Lite Rollator from Drive Medical . Make sure you get one with a padded seat that's wide enough and the height is tall or short enough, that's lightweight, with good brakes. A convenient place to shop for them is at 1-800-wheelchair.com .

Here's Terry's Nov 20th Update. Tips, Information, Updates,  more. Happy Thanksgiving! 
Here is Terry's Nov. 7 TX Update. Fun issue. Lots of good tips. Worth a read.

Terry's October Update is out. Thanks, so much for all the great info, T. 
And here's the Halloween TX Update.  Some great pictures, articles, plus group news. Thanks, T. Click here: 

August 28 TX update of Terry's excellent newsletter. Contains details of  TX picnic  (Sept 30). Nice location on the Hudson.  Here 's some pics of some of us on this beautiful fall(?) day. We had about 3 tables full of lung tx folks & families, and a splended time was had by all.

Looking for a local support group? Here's a nice list of groups throughout the U.S. Speaking of local groups, the Rockland/Orange support group had its 1st annual golf outing on Sept. 19. Sorry if you missed it.

Clinical Trials government web site . Nice way to search for any COPD or transplant related current or future trials.

Here's a tip from Andy J. for help in paying for the tons of meds we need to stay alive. Check out NeedyMeds.com. Anyone can apply, it's worth the phone call.
And, here's the pharmaceuticals official site for help with prescriptions: Partnership for Prescription Assistance .They can be reached at 1-888-4PPA-NOW

Here's a nice booklet entitled "Caring for Transplant Recipients in a Nontransplant Setting" by the American Association of Critical Care Nurses. Very useful pictures, tables, references, and even a useful quiz at the end.

Speaking of the high price of meds, here is an interesting article on how the drug companies are able to convert a generic drug (albuterol inhaler) into a name brand one, and more than double their revenues from the pockets of respiratory patients. Also available as a PDF File. (Make sure you look at the chart on the last page.)
Note that you can still get albuterol inhalers from India for $3.01 plus shipping. Stock up now.

Here's an interesting article, though a bit technical, that says that smoking cigarettes causes extensive damage to your DNA,

I've included COPD 2007 (also called COPD & Alpha-1 Education Day) in the schedule below. Here is a copy of the original invitation (Thanks, Bettina I). If you are looking for answers and help, this is an excellent place to start. The fee is only $10, and that includes breakfast and lunch. Advance registration is required, so check it out. Please note that this tri-state conference is hosted by Columbia, but will be held at the NY Acadamy of Medicine at 5th Ave & 103rd. St. There are PDF files for the program guide & registration form below.

Here is the August 5 update and August 17 update of Terry's newsletter that contains some news and useful tips. And, an added bonus! A suggestion of how to grow strawberries that can be eaten by Post-TX patients.
In the August 17th update , there is a review of the Aug 14th support session, in case you missed it, and a suggestion for a Medic Alert bracelet plus more goodies.

News article on microbes putting beachgoers at risk, with some useful tips on how to protect yourself. For more information, checkout the NRDC's annual report: Testing the Waters 2007 .

U.S. News & World Report has just published their Best Hospitals 2007 rankings . NYP/CUMC ranks #1 in NY and #6 Nationwide. 

Here's a copy of the excellent paper given by Dr. Lederer at the July 2 support group meeting, entitled: " Advances in Lung Transplantation: A Patient Guide ".
I also converted this to an Adobe PDF file which includes Speaker's Notes. If you see a little brown box on the top left hand side of the slide, point your mouse at it to read the notes.

Mike has started a new discussion board for our use. You can find it here: Lung Tx Support   If you need help, drop Mike or me a line, and we'll get you over the hump.

There are some new articles on the UNOS web site news update section . Check them out, if you have time.

Here's a cute one from the July 1, Times by Nora Ephron on the Six Stages of E-Mail . In keeping with the spirit of the article, I am NOT emailing it to everyone I know!

Our User's Group has started back up. Here is some info, but if you would like to join, please write Terry or myself, and we will send you an invitation.

I have scanned in a copy of the Log Sheet that must be filled out and brought to clinic for Post-TX folks.
Here is a copy as an Adobe PDF or as a JPG picture file. If you have created your own sheets and would like to share them, please send me a copy .
I also have these log sheets that have been optimized for printing on 3 hole paper. You can download the JPG Here , and the PDF Here .

Handout from Nutrition Meeting taught by Brenda Klein on April 17. Worth a read for Pre and Post Transplant. Thanks, Terry for the snail mail from the north. And, don't forget there is a Nutrition page on the CUMC Web site

Post Lung Transplant Medications slides, created by Thresiamma Lukose, Pharm.D & taught by Stacey Balducci on April 26. Excellent material. Also available in PDF format . Thanks, Stacey & Theresa!

We also have a Map of the hospital, so you can get your bearings.

Terry has created a terrific document on the different types of Rejection, from a patient's point of view, along with links and some personal stories. This is invaluable, and well worth reading for anyone interested in organ transplants. You can download it from here . Thanks, Terry

Have you seen the Media Library on the New York Presbyterian Web site? Excellent educational resource.

Ebay will no longer sell Oxygen Devices . Score one for the bad guys!

Very interesting and enlightening article from the Sunday NY Times on Heart Disease. Worth reading. Here's the online article , or we also have it here as a PDF file .
This is from the Times' Six Killers series : The leading causes of illness and death in the United States today — heart disease , cancer, stroke, chronic obstructive pulmonary disease , diabetes and Alzheimer’s disease, in that order.

Ted Koppel's Wife Fights COPD  ABC News Video
Grace Koppel campaigns to fight against chronic obstructive pulmonary disease.

Dr Fedoronco recommends a terrific web site on Surviving Transplantation . We have converted it to Adobe PDF for offline viewing, and you can also find it on Amazon.com.

Here is a sample Menu (without the daily specials) for the excellent Windows on the Hudson Restaurant on the 9th floor, Milstein.

Don't trust your flow from your oxygen supply? An essential tool that costs less than $20 is the Liter Meter (available for different flow rates). Jameson Medical has special prices for EFFORTS members.

Need an Oximeter? Everyone has their favorite places to get one. Here's mine:
Turner Medical in Connecticut has great prices and service, and also offers very nice cases to protect your investment.

My Med Schedule allows you to store a list of the meds you are currently taking, and printout lists for you to keep with you. It includes an image of each pill, along with a description of what the drug is used for. Free service from MedActionPlan.com.

Now available: 2006 Transplant Data Annual Report from UNOS. Also available for download so you can use it offline.
Officially, this is called the Comprehensive 2006 Annual Report of the Organ Procurement and Transplantation (OPTN) and U.S. Scientific Registry of Transplant Recipients (SRTR).

February 14 edition of TX News Notes - Final Edition.  Thanks, Terry for all your hard work.
Remember, the past 6 editions can be found on our archive page. If you would like an earlier one, please write me or Terry .

Thanks go out to Terry for her tip on finding some excellent, low priced masks that are comfortable and have earloops.
And, here's some cool and interesting masks to try out. Amaze your friends ... Scare your enemies !

New use of artificial lungs used to keep patients alive while waiting for a donor to be found. More transplant news here .

Need hospital directions, visiting hours, parking information, valet parking hours? Check out the Visitors Information page, or the Adult Patient Information Guide .

Check out the Newsletters put out by the Department of Surgery. Especially nice are the Liver Transplant and Heart Transplant issues. (And, don't forget the ones put out by NYPH)
If you feel like reading, here is a link to the newsletter from UPMC in Pittsburgh, and Duke has a very nice Guide for Lung Transplant Patients
(There is a bunch of very useful Post-TX information in both sections of the guide. Worth perusing.)

Please write your representatives in congress to support S. 329/ H.R. 552 Pulmonary and Cardiac Rehabilitation Act of 2007 which would insure full Medicare coverage for both Pulmonary & Cardiac Rehab.
If you would like full instructions on how you can help, Efforts has an information sheet on their web site .

Need some help understanding your PFT's? Here's a nice QRG , and here's a page on interpretation.

2008 Support Group Calendar

Useful Links & Documents:
Whether you are in our program, or you have lung disease and are considering your options, here are some very useful sites and documents that can help with your decision, or help you through the process of lung transplantation.

Documents (can be downloaded to your computer):

• Presentation from Dr. Lederer's July 2nd Meeting on Research and Rejection .
• Caring for Transplant Recipients in a Nontransplant Setting by the American Association of Critical Care Nurses
• Here is the July 10th update of Terry's newsletter.
• Handout from the January 25th Meeting: 7HS Visitor Guidelines & Discharge Information
• The February 14th edition of TX News Notes is the final edition.
• Here's Phyllis' Community Resources Guide in Microsoft Word or slightly modified in Adobe PDF format.
• Dr. Wilt's Advanced Directives presentation (1/9/07) in PowerPoint and Adobe PDF formats.
• Phyllis has requested we remove the Transplant Social Work presentation. Please contact the author if you want a copy.
• Here is a copy of Dr. Wilt's paper (11/21/06) on Acute and Chronic Rejection (and, in Adobe PDF format)
• Here is the Lung Transplantation Patient Care Guide that can be downloaded ( As a PDF file )
• Looking for someone at CUMC? Here's the 2006-7 Department of Surgery Directory for faculty & staff.
• Hungry? Check out Windows on the Hudson on the 9th floor of Milstein.
• Lost? CUMC Campus & Community Guide  and Map (or here) ( GIF or PDF copy of map)
• Here's a very nice booklet from UNOS on What Every Patient Needs to Know
• Partnering with your Transplant Team - The Patient's Guide to Transplantation from the U.S. HRDA at OrganDonor.gov
• Time Magazine's Year in Medicine From A to Z - online or in PDF
• Article from the Sunday NY Times on Dr. Herbert Pardes , the President & CEO of NY Presbyterian on the merger & other issues.
• Health Care Proxy Documents from New York ,  New Jersey , and Connecticut. More info on archive page.
  
  

• Interesting video on the proper way to cough from http://www.coughsafe.com
• Nice little video on COPD from CNN
• Eclipse Portable Concentrator TV News video
• Video of lung transplant from the Columbia Presbyterian Surgical Web Site Patient Care Guide (Requires Real Player - Here's a simple version )

• Here's the Home Page for the Lung TX Department of Surgery. And, here's the Staff Page .
• If you haven't read the Lung Transplantation Patient Care Guide , I recommend it highly (Downloadable above)
• Media Library from NY Presbyterian. Excellent educational resource
• Clinical Trials government web site. Nice way to search for any COPD or transplant related trials going on.
• Nutrition Management after Lung Transplantation from CUMC Surgery Lung TX Patient Care Guide
• Directory of  People and Departments in Columbia University Medical Center
• Support groups around the country. Courtesy of UNOS
• Problems paying for the tons of medications required? Check out NeedyMeds.com. Thanks to Andy J. for the tip.
• Second Wind - Excellent informational site for Lung Transplant patients
• Traveling? Here's how to find Oxygen Suppliers , and here's some tips for Flying or Motoring with Oxygen
• Here's a nice Letter to the Editor suggesting standardized tests for lung disease from all doctors. If you would like to do something similar, here's where you can find your local media (or here)
• Transplant Support User's Group on MSN (Lung, Heart, Heart/Lung)
• Transplant Buddies Message Board . A nice place to interact with others.
• Organ Transplantation Data Reports from the United Network for Organ Sharing (UNOS)
• Here's a useful page on the Lung Allocation System and score (LAS) and here's Columbia's info page on the subject.
• USTransplant.org annual report data on Lung Transplantation and center specific reports .
• UNOS's very useful Transplant Living site and their calendar events section.
• Lung Topics A-Z from the NY Presbyterian Lung Transplant Web site .
• Masks & more masks: Low priced and comfortable , or  Pretty designs and cool disguises .
• Softhose has simply the best cannulas and non-twist oxygen hoses available. Will also make special orders.
• New York State's Advanced Directives and Patient's Rights sites.
• Newsletter, newsletters, newsletters: CUMC, NYPH, UPMC, & a Patient Guide from Duke
• MyMedSchedule.com allows you to printout a list of the meds you are taking. Nice site.
• And, finally, here's our Today Page , now with the weather, moon phases, & more fun stuff

visits since inception (12/28/06) Public Webalizer