the Unofficial Columbia
University (aka NY Presbyterian) Medical Center
Lung Transplant Support
is completely and totally unofficial/unauthorized by CUMC or anyone on staff at
(Any suggestions, additions, or comments welcome)Please also report
any errors or bad links that you might find here. I keep this page updated in
between hospital visits.
New Items (~ indicates updated
~ 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
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
Frontline Report from the front page of the Nov. 29
on COPD & ancillary articles. Includes many
articles & photos/videos on Columbia doctors. If no longer available on
nytimes.com, here is a copy in
format . And, here's another
article from the Nov. 30
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 also has a new tool to compare plans, and to address the
doughnut hole. Here's
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
NYP Transplant Newsletter
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
support group on MSN that discusses what questions to ask,
Here is a copy of Dr. Wilt's powerpoint slides (10/1/07) on Acute and Chronic
Rejection (and, in Adobe PDF format).
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)
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
, 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
varies in price from $175 to $350. Ebay seems to offer the best
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
. 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
Terry's Nov 20th
Update. Tips, Information, Updates, more. Happy
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
U.S. Speaking of local groups, the Rockland/Orange support group
1st annual golf outing on Sept. 19. Sorry if
you missed it.
Clinical Trials government web
. Nice way to search for any COPD or transplant related current or
future trials.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
to grow strawberries
that can be eaten by Post-TX patients.
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
And, here's the pharmaceuticals official site for help
with prescriptions: Partnership
for Prescription Assistance .They can be reached at
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
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,
COPD 2007 (also called COPD & Alpha-1 Education Day) in the schedule below.
Here is a copy of the
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 &
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
U.S. News & World Report
has just published their Best Hospitals 2007
. NYP/CUMC ranks
#1 in NY and #6 Nationwide.
copy of the excellent paper given by
at the July 2 support group meeting,
entitled: " Advances in Lung Transplantation: A Patient Guide ".
I also converted this to
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
There are some new articles on the
UNOS web site news update
. 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
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
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
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
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
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.
download it from here . Thanks, Terry
Have you seen the
Library on the New York Presbyterian Web site? Excellent
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.
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
Wife Fights COPD ABC News
Grace Koppel campaigns to fight against
chronic obstructive pulmonary disease.
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,
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).
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
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
Officially, this is called the Comprehensive
2006 Annual Report of the Organ Procurement and Transplantation (OPTN) and U.S.
Scientific Registry of Transplant Recipients
February 14 edition of TX News Notes
- Final Edition. Thanks, Terry for all your hard
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.
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
Please see schedule for more detailed
instructions and check back before coming, or call 212-305-6266,
in case the meeting is moved to
a different room.
Call above number for meeting
For full schedule from Jan-July, 2008,
.pdf file above
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
- 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
- Nutrition Management after Lung Transplantation from CUMC Surgery Lung TX Patient Care Guide
of People and Departments in Columbia University
- 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
- 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,
- Transplant Buddies Message Board . A nice place
to interact with others.
- Organ Transplantation Data Reports from the
United Network for Organ
- 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
Please don't forget to check out our large Archive for all past articles, documents, links,
51 Lung Transplants performed
at Columbia in 2006! Congratulations,
Have you seen this missing woman from