Hi adamhicks,
The Scientific Registry of Transplant Recipients will, I'm sure,
provide you with more information than you want to know. We can,
however, extract the data that you have requested (waiting periods and
survival rates), plus one other important aspect, the number of
transplants done. That last piece is important because a center could
have a 100% survival rate, but if they only did one transplant, the
rating is less significant. Another statistic that makes a difference
in the survival rate is the proportion of those patients who were
listed as Status 1 (very urgent). Ofcourse having fewer listed in this
group will increase the survival rate.
First, a couple of websites which talk about how to choose a transplant center.
Liver transplant: Intervention for end-stage liver disease
"When selecting a liver transplant center, take into account the
number of liver transplants the center performs each year and the
recipient survival rates. You can compare liver transplant center
statistics through a database maintained by the Scientific Registry of
Transplant Recipients.
You should also consider additional services provided by a transplant
center. Many centers coordinate support groups, assist you with travel
arrangements, help you find local housing for your recovery period, or
direct you to organizations that can help with these concerns."
http://www.mayoclinic.com/health/liver-transplant/DG00037
Selecting a Hospital
Which Hospital Is Best for You?
When choosing a transplant center, patients should carefully consider
these factors:
* The experience of the transplant team and support personnel...
* The cost of the procedure and related items...
* Insurance coverage...
* Geographical proximity to the program...
* The quality and availability of pre- and post-transplant services...
* A commitment to keeping up with technologic advances...
* Multicultural sensitivity...
* Availability of friends and family for assistance...
http://www.transplantliving.org/beforethetransplant/hospital/hospital.aspx
Selecting a Hospital
Other Options to Consider
Multiple Listing
"As addressed in the OPTN/UNOS Policy 3.2.2, patients may be listed at
more than one transplant center. Being listed at more than one
transplant center does not guarantee that an organ will become
available faster than if you are listed at one transplant center. If
you choose to multiple list, your primary care physician should
contact your centers of choice so that you may be evaluated as a
transplant candidate, as you did with your primary evaluation." [link
to brochure]
Transferal of Waiting Time
"As addressed in the OPTN/UNOS Policy 3.2.2.1, patients may transfer
their primary waiting time from one transplant center to another
center. This transfer may be necessary for a number of reasons, such
as a change in the transplant candidate's health insurance or if the
candidate has moved." [link to brochure]
http://www.transplantliving.org/beforethetransplant/hospital/otherOptions.aspx
Questions to Ask Your Transplant Team
http://www.transplantliving.org/beforethetransplant/list/questions.aspx
>>> The Reports
[click on the pdf link which is under the drop-down menu to view the
entire report of each transplant center]
A) MAYO CLINIC: Rochester Methodist Hospital, Rochester, MN
Summary:
Number: Very high (349)
Speed: Lower than average (31.4% transplanted within 6 months)
Survival: Very high (3.8% had died by 6 months)
"At this center, 5 of 156 of these patients were listed at Status 1.
For these most urgent patients, 80.0 percent had received a transplant
by 6 months after listing, compared with 54.6 in the nation (Table
4S1). At 6 months, 0.0 percent had died (14.9 nationally) and 0.0 were
still on the waiting list (7.4 nationally)."
"Rochester Methodist Hospital (Mayo Clinic) (MNMC) had 379 patients on
its waiting list on 07/01/2003 and 349 patients on 06/30/2005. During
these two years, 326 patients were added to the list and 356 patients
were removed. Of the removals, 26 were for transplant from a living
donor and 171 were for transplant from a deceased donor. Rochester
Methodist Hospital (Mayo Clinic) (MNMC) performed 110 liver
transplants (Table 7) during the last year (07/01/2004-06/30/2005). "
"Overall, at Rochester Methodist Hospital (Mayo Clinic) (MNMC), 31.4
percent of patients placed on the waiting list had received a
transplant by 6 months after listing, compared with 37.9 in the nation
(Table 4). At 6 months, 3.8 percent had died (compared to 7.8
nationally) and 59.6 were still on the waiting list (48.9 nationally).
These numbers are strongly influenced by the proportion of patients
who are listed at a high medical urgency status. At this center, 5 of
156 of these patients were listed at Status 1. For these most urgent
patients, 80.0 percent had received a transplant by 6 months after
listing, compared with 54.6 in the nation (Table 4S1). At 6 months,
0.0 percent had died (14.9 nationally) and 0.0 were still on the
waiting list (7.4 nationally)."
[SEE TABLES]
http://www.ustransplant.org/csr/current/publicData.aspx?facilityID=MNMCTX1LI&t=G
B) MAYO CLINIC: Saint Marys Hospital, Rochester, MN
Summary:
Number: Very Low (9)
Speed: The best (100% transplanted within 6 months)
Survival: The best (0% had died by 6 months)
"At this center, 1 of 3 of these patients were listed at Status 1. For
these most urgent patients, 100.0 percent had received a transplant by
6 months after listing, compared with 54.6 in the nation (Table 4S1).
At 6 months, 0.0 percent had died (14.9 nationally) and 0.0 were still
on the waiting list (7.4 nationally)."
"Saint Marys Hospital (Mayo Clinic) (MNSM) had 12 patients on its
waiting list on 07/01/2003 and 15 patients on 06/30/2005. During these
two years, 20 patients were added to the list and 17 patients were
removed. Of the removals, 13 were for transplant from a deceased
donor. Saint Marys Hospital (Mayo Clinic) (MNSM) performed 9 liver
transplants (Table 7) during the last year (07/01/2004-06/30/2005).
Typical liver programs currently operating in the United States
transplanted between 15 and 75 people in that same period."
"Overall, at Saint Marys Hospital (Mayo Clinic) (MNSM), 100.0 percent
of patients placed on the waiting list had received a transplant by 6
months after listing, compared with 37.9 in the nation (Table 4). At 6
months, 0.0 percent had died (compared to 7.8 nationally) and 0.0 were
still on the waiting list (48.9 nationally). These numbers are
strongly influenced by the proportion of patients who are listed at a
high medical urgency status. At this center, 1 of 3 of these patients
were listed at Status 1. For these most urgent patients, 100.0 percent
had received a transplant by 6 months after listing, compared with
54.6 in the nation (Table 4S1). At 6 months, 0.0 percent had died
(14.9 nationally) and 0.0 were still on the waiting list (7.4
nationally)."
[SEE TABLES]
http://www.ustransplant.org/csr/current/publicData.aspx?facilityID=MNSMTX1LI&t=G
C) MAYO CLINIC: St. Luke's Hospital, Jacksonville, FL
Summary:
Number: High (253)
Speed: Very high (89.7% transplanted within 6 months)
Survival: Very high (1.6% had died by 6 months)
"At this center, 8 of 184 of these patients were listed at Status 1.
For these most urgent patients, 50.0 percent had received a transplant
by 6 months after listing, compared with 54.6 in the nation (Table
4S1). At 6 months, 0.0 percent had died (14.9 nationally) and 0.0 were
still on the waiting list (7.4 nationally)."
"Overall, at St. Luke's Hospital (Mayo Clinic) (FLSL), 89.7 percent of
patients placed on the waiting list had received a transplant by 6
months after listing, compared with 37.9 in the nation (Table 4). At 6
months, 1.6 percent had died (compared to 7.8 nationally) and 4.3 were
still on the waiting list (48.9 nationally). These numbers are
strongly influenced by the proportion of patients who are listed at a
high medical urgency status. At this center, 8 of 184 of these
patients were listed at Status 1. For these most urgent patients, 50.0
percent had received a transplant by 6 months after listing, compared
with 54.6 in the nation (Table 4S1). At 6 months, 0.0 percent had died
(14.9 nationally) and 0.0 were still on the waiting list (7.4
nationally).
At St. Luke's Hospital (Mayo Clinic) (FLSL), 89.25 percent of adult
patients were alive one year after transplant, compared to the 84.63
percent that would be expected based on the characteristics of these
patients. Moreover, the p-value of 0.005 indicates that this
difference is statistically significant. Similar comparisons may be
made for shorter- (1 month) and longer-term (3 year) survival, also in
Table 11, as well as for graft survival (Table 10). Further discussion
of actual, expected, and national survival rates may be found in the
Table Details section below.
The above results reflect survival for both deceased and living donor
transplants combined. Of these 421 adult transplants performed by St.
Luke's Hospital (Mayo Clinic) (FLSL), 420 were deceased donor
transplants, and 89.23 percent of these recipients remained alive one
year later. This center also performed 1 adult living donor
transplants in this period with 100.00 percent of these recipients
alive one year later."
[SEE TABLES]
http://www.ustransplant.org/csr/current/publicData.aspx?facilityID=FLSLTX1LI&t=G
D) University of Pittsburgh Medical Center
Summary:
Number: High (230)
Speed: High (65.6 transplanted within 6 months)
Survival: Lower than average (8.5% had died by 6 months)
"At this center, 27 of 390 of these patients were listed at Status 1.
For these most urgent patients, 66.7 percent had received a transplant
by 6 months after listing, compared with 54.6 in the nation (Table
4S1). At 6 months, 22.2 percent had died (14.9 nationally) and 3.7
were still on the waiting list (7.4 nationally)."
"Table 1 provides a picture of the volume and type of waiting list and
transplant activity at this center. University of Pittsburgh Medical
Center (PAPT) had 289 patients on its waiting list on 07/01/2003 and
346 patients on 06/30/2005. During these two years, 684 patients were
added to the list and 627 patients were removed. Of the removals, 59
were for transplant from a living donor and 436 were for transplant
from a deceased donor. University of Pittsburgh Medical Center (PAPT)
performed 230 liver transplants (Table 7) during the last year
(07/01/2004-06/30/2005). Typical liver programs currently operating in
the United States transplanted between 15 and 75 people in that same
period. More about the activity at this center and the types of
patients served is found in the Table Details section below and in
Tables 1 and 2 (waiting list) and Tables 7, 8, and 9 (transplant).
The likelihood of receiving a liver transplant differs from facility
to facility and also from person to person depending upon the medical
condition of the candidate. Overall, at University of Pittsburgh
Medical Center (PAPT), 65.6 percent of patients placed on the waiting
list had received a transplant by 6 months after listing, compared
with 37.9 in the nation (Table 4). At 6 months, 8.5 percent had died
(compared to 7.8 nationally) and 24.6 were still on the waiting list
(48.9 nationally). These numbers are strongly influenced by the
proportion of patients who are listed at a high medical urgency
status. At this center, 27 of 390 of these patients were listed at
Status 1. For these most urgent patients, 66.7 percent had received a
transplant by 6 months after listing, compared with 54.6 in the nation
(Table 4S1). At 6 months, 22.2 percent had died (14.9 nationally) and
3.7 were still on the waiting list (7.4 nationally)."
[SEE TABLES]
http://www.ustransplant.org/csr/current/publicData.aspx?facilityID=PAPTTX1LI&t=G
E) University of Washington Medical Center
Summary:
Number: Medium (127)
Speed: High (54.5 transplanted within 6 months)
Survival: Very High (1.5% had died by 6 months)
"At this center, 4 of 132 of these patients were listed at Status 1.
For these most urgent patients, 50.0 percent had received a transplant
by 6 months after listing, compared with 54.6 in the nation (Table
4S1). At 6 months, 25.0 percent had died (14.9 nationally) and 0.0
were still on the waiting list (7.4 nationally)."
"University of Washington Medical Center (WAUW) had 118 patients on
its waiting list on 07/01/2003 and 191 patients on 06/30/2005. During
these two years, 373 patients were added to the list and 300 patients
were removed. Of the removals, 249 were for transplant from a deceased
donor. University of Washington Medical Center (WAUW) performed 127
liver transplants (Table 7) during the last year
(07/01/2004-06/30/2005). Typical liver programs currently operating in
the United States transplanted between 15 and 75 people in that same
period."
"Overall, at University of Washington Medical Center (WAUW), 54.5
percent of patients placed on the waiting list had received a
transplant by 6 months after listing, compared with 37.9 in the nation
(Table 4). At 6 months, 1.5 percent had died (compared to 7.8
nationally) and 39.4 were still on the waiting list (48.9 nationally).
These numbers are strongly influenced by the proportion of patients
who are listed at a high medical urgency status. At this center, 4 of
132 of these patients were listed at Status 1. For these most urgent
patients, 50.0 percent had received a transplant by 6 months after
listing, compared with 54.6 in the nation (Table 4S1). At 6 months,
25.0 percent had died (14.9 nationally) and 0.0 were still on the
waiting list (7.4 nationally)."
http://www.ustransplant.org/csr/current/publicData.aspx?facilityID=WAUWTX1LI&t=G
F) Stanford University Medical Center, Stanford, CA
"The Stanford Liver Transplant Program is a well-known center for
referral of very high-risk patients. Table 7 shows that 37.2% of our
recipients were Status 1 (very high risk patients) compared with 14.9%
for the region and 9.2% for the U.S. Moreover, 29.1% of our patients
were children under 2 years of age compared with 6.1% for the region
and 3.7% for the U.S. Lastly, 31.4% of our patients had malignancy
compared with 10.7% for the region and 8.2% for the U.S.
In summary, the transplant team at Stanford has a cumulative
experience of more than 2000 liver transplants, is willing to take on
high-risk patients, and has a strong commitment to excellence. "
http://www.ustransplant.org/csr/current/viewComments.aspx?facilityID=CASUTX1LI&t=0
>>> International centers
I really can't, with good conscience, recommend seeking treatment
abroad. There are several reasons for this, e.g., the low
availability of donated organs and local restrictions making organs
mostly unavailable to foreigners. An American has a far better chance
of being treated quickly in the United States versus elsewhere.
Committee for Promoting German Medicine in Foreign Countries
Transplantation
"Transplantation in Germany, however, is strictly regulated by law.
These regulations make it impossible for a non-European patient to
receive an organ from a deceased donor except in a few limited cases.
Quotas have been set throughout Europe stating that a maximum of 15%
of organs from deceased donors can be transplanted into non-European
patients. Considering the variety of medical factors that must
correspond between the organ offered by the donor and the potential
recipient, it becomes clear that the chances of receiving such an
organ are very slight.
For this reason, situations in which the donated organ comes from a
living donor (especially kidney and liver transplants) are the more
common focus of treatment for international patients..."
http://www.committee-german-medicine.de/cms/front_content.php?idcat=190
It is also important to remember the importance of being near family
and the logistics of being prepared for surgery (a person would have
to live in the foreign country for an unknown length of time during
the waiting period). Also, there is no chance of transferring the
waiting time to a foreign country that has already spent in the U.S.
Preparing for a Transplant
Waiting for Your Transplant
# Take care of your health...
# Keep your scheduled appointments with your physicians...
# Participate in support groups...
# Follow the dietary and exercise guidelines...
# Occupy yourself by staying involved...
# Maintain contact with family and friends...
# Make sure you are available...
# Be prepared with transportation...
# Make sure you are available. It is important for your transplant
team to know how to get in touch with you at all times. Pagers, cell
phones or remote answering machines may be required by your transplant
center. Your transplant coordinator may recommend that you stay within
a certain geographic range.
# Be prepared with transportation. When you are placed on the organ
waiting list, your first responsibility is to plan how to get to the
transplant center as soon as you are notified that an organ is
available. Prepare yourself for this call by making the necessary
arrangements for transportation well in advance.
# Be prepared by packing your bags in advance. You'll need to be ready
to leave as soon as you get the call that an organ is available. Be
sure to take your insurance information, an extra 24-hour supply of
medication and all other necessities."
http://www.transplantliving.org/beforethetransplant/prepare_tx.aspx?prep=wait
The Cromwell Liver Centre
"It is the only private facility in Europe carrying out liver transplantation"
http://www.cromwell-hospital.co.uk/htmlpages/sp_centre.asp?ID=12
The Cromwell Liver Centre
"A biologically compatible donor will need to be found and
unfortunately there is usually a long wait for donor organs to become
available."
http://www.cromwell-hospital.co.uk/htmlpages/specialties.asp?ID=125
>>> Additional Links of Interest:
Center and OPO-Specific Reports, January 2006
Select a state of interest on the map:
http://www.ustransplant.org/csr/current/csrDefault.aspx
Transplants by State and Transplant Center, 1995 to 2004
http://www.ustransplant.org/annual_reports/current/915_li.htm
Chapter VI
Liver and Intestine Transplantation in the United States, 1995-2004
http://www.ustransplant.org/annual_reports/current/Chapter_VI_AR_CD.htm?cp=7
The Transplantation Society
http://www.transplantation-soc.org/
Transplantation Journals
http://www.transplantation-soc.org/journals.php
Links (UK)
http://body.orpheusweb.co.uk/lnks.html
So, there you have it, that should keep you busy for awhile! I think
you will find that the Mayo Clinic in Jacksonville, FL is hard to
beat. If you have any questions, please post a clarification request
and wait for me to respond before closing/rating my answer.
Thank you,
hummer
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