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Author Topic: letter from the transplant center  (Read 10043 times)
Chris
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« Reply #25 on: June 05, 2011, 09:23:36 PM »

From: http://www.healthinsurancequotesamerica.com/organtransplantcenters.html
 
California
California Pacific Medical Center
San Francisco, CA
 
Cedars-Sinai Medical Center
Los Angeles, CA
 
Children's Hospital and Health Center *
San Diego, CA
 
Children's Hospital of Los Angeles *
Los Angeles, CA
 
Loma Linda University Medical Center *
Loma Linda, CA
 
Santa Rosa Memorial Hospital
Santa Rosa, CA
 
St. Bernardine Medical Center *
San Bernardino, CA
 
St. Vincent Medical Center *
Los Angeles, CA
 
Stanford Health Services
Stanford, CA
 
UCLA Medical Center and UCLA Medical Group *
Los Angeles, CA
 
University of California Davis MC
Sacramento, CA
 
USC University Hospital *
Los Angeles, CA
 
USC-Norris Comprehensive Cancer Center *
Los Angeles, CA
 
Western Medical Center *
Santa Ana, CA
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Chris
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« Reply #26 on: June 05, 2011, 09:26:03 PM »

Washington
Fred Hutchinson Cancer Research Center
Seattle, WA

Sacred Heart Medical Center
Spokane, WA

University of Washington Medical Center
Seattle, WA

I will compare this to my book.
Logged

Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
babycake
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« Reply #27 on: June 05, 2011, 09:30:52 PM »

thank you
but i didnt see any phone numbers
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Jie
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« Reply #28 on: June 05, 2011, 09:58:31 PM »

Washington
Fred Hutchinson Cancer Research Center
Seattle, WA

Sacred Heart Medical Center
Spokane, WA

University of Washington Medical Center
Seattle, WA

I will compare this to my book.

Fred Hutchinson Cancer Research Center is not a transplant center.

Another two transplant centers in WA are SMC and VM.
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babycake
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« Reply #29 on: June 05, 2011, 10:03:50 PM »

right
but the ones you did provide i didnt see phone numbers
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Chris
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« Reply #30 on: June 05, 2011, 10:15:53 PM »

Jie, I just copied from the website that stated those were transplant centers to help babycake ASAP, thanks for clairifying that websites mistake.
 
My book does have addresses and phone numbers, but right now I am multitasking to get things ready for the morning on my printer. I also accidentally created a mess trying to pull out envelopes from my desk knocking my desk organizer over. Found some pens and small screwdrivers I forgot I had.
 
Give me another hour or two.
Logged

Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Chris
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Gender: Male
Posts: 9219


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« Reply #31 on: June 05, 2011, 11:46:13 PM »

The book I have that I have loaned out before is missing the pages, but it also has many links. So here is the HRSA/ OPTN link to help find a center either by organ, or by all transplant center (for all organs. Weblinks and phone numbers provided with each center.
 
http://optn.transplant.hrsa.gov/members/search.asp
 
California: http://optn.transplant.hrsa.gov/members/directory.asp
 
Washington: http://optn.transplant.hrsa.gov/members/directory.asp
Logged

Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Marina
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God Bless my donor family!! :)

« Reply #32 on: June 06, 2011, 01:20:50 AM »

the letter is confirm

it is felt that the risks of transplant outweigh the portential benefits for you given your multiple medical problems
diabetics,
high blood pressure
history of gout
elevevated lipids weight
aortic valve replacement
coronary artery disease
history of heart block
chronic anticoagulation
diminshed femoral pulses
hard of hearing
(and now the heartattck)

doesnt anyone have i would say a bad heart and if so were they told it wasent posisble to have a transplant

Like the  others  say,  check  with  other  centers.         There  are  some  centers  who  take  high  risk   patients,  based  on  your medical  conditions  they might  consider you  a high  risk.
For  a  fact  I know  UCSF  (San  Francisco,  CA)  is  one  of  those  centers.
http://www.ucsfhealth.org/clinics/kidney_transplant/

Wow... this doesn't make me feel very optimistic about going through the testing later this summer.  I am 61 years old, have high blood pressure (under control with meds) and am on coumadin because of a blood clot episode just recently when they removed my shoulder catheter (it caused a blood clot that went into my lung - two weeks in the hospital).  My neph told me the "blood clot episode" wouldn't affect my going through the testing, but.... wow.  Now I'm depressed.
If  I'm  not  mistaken  and if  the  rules  have  not  changed   in the  last  couple of yrs  (since  my  eval)   you must  wait  6 months  after you  stop  taking  coumadin  to  be   place  in the  'active' waiting  list.
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"Anything is possible, if  you  BELIEVE....."  ~~~Joel  Osteen

"Yesterday is history, Tomorrow is a mystery, Today is a gift..... That is why it is called the present"

*************************************************
 Nov 1979 ~ Diabetes 
Apr. 2004- Nov 2010 ~ CAPD
Nov 9, 2010 ~  Received the  THE  GIFT OF LIFE at 
California Pacific  Medical  center  (CPMC)  in San  Francisco,  CA
babycake
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« Reply #33 on: June 06, 2011, 06:00:02 AM »

thank you
do you know if there is a transplant center in sana ana cal
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Jie
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« Reply #34 on: June 06, 2011, 08:47:31 AM »

Just go to UNOS webside and one should find all transplant centers in any state. With the name, just google it to its website.

I feels that if OHSU refuses for transplant, the next option is Legacy. If Legacy refuses it too, then the best option is to stay dialysis and forget about transplant. Transplant has risks and is not for everyone. It seems to me that it is not a good idea to go WA or CA from OR. Both WA and CA have longer waiting times than OR, and it is better for post-transplant care when the transplant center is close to home, especially for high-risk patients.
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babycake
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« Reply #35 on: June 06, 2011, 10:15:58 AM »

legacy transfered me to ohsu
do to the health insurance i have
so i cant go back to legacy even if i wanted to
part of the reason as why i was thinking cal
was because my cousin knows the head cheif of the hospitol
so i was thinking just maybe he would look at all my info
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okarol
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« Reply #36 on: June 06, 2011, 04:53:50 PM »

It depends on where in California. The wait time in Los Angeles is 8 to 10 years, depending on blood type.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
babycake
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« Reply #37 on: June 06, 2011, 05:13:12 PM »

OUCH!!!!
even if my cousin has connections
but then that wouldnt be right for a doc favoring someone family member

my cousin lives in sana anna call
so it would be in that area
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Marina
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God Bless my donor family!! :)

« Reply #38 on: June 06, 2011, 06:50:53 PM »

Just go to UNOS webside and one should find all transplant centers in any state. With the name, just google it to its website.

I feels that if OHSU refuses for transplant, the next option is Legacy. If Legacy refuses it too, then the best option is to stay dialysis and forget about transplant. Transplant has risks and is not for everyone. It seems to me that it is not a good idea to go WA or CA from OR. Both WA and CA have longer waiting times than OR, and it is better for post-transplant care when the transplant center is close to home, especially for high-risk patients.

I  agree  with  you  on  finding  a  transplant  center  close to home,   but  if  the  one  close  to home  refuses  to  list  a patient,  that  patient  must  look  elsewhere.                   
My  thinking is  that  being on  a  long  waiting  list  if  better than  NO  waiting  list  at  all.
Just  my  own  opinion!
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"Anything is possible, if  you  BELIEVE....."  ~~~Joel  Osteen

"Yesterday is history, Tomorrow is a mystery, Today is a gift..... That is why it is called the present"

*************************************************
 Nov 1979 ~ Diabetes 
Apr. 2004- Nov 2010 ~ CAPD
Nov 9, 2010 ~  Received the  THE  GIFT OF LIFE at 
California Pacific  Medical  center  (CPMC)  in San  Francisco,  CA
babycake
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« Reply #39 on: June 06, 2011, 07:15:08 PM »

im not even on the waiting list
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Jie
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« Reply #40 on: June 06, 2011, 07:18:39 PM »

I  agree  with  you  on  finding  a  transplant  center  close to home,   but  if  the  one  close  to home  refuses  to  list  a patient,  that  patient  must  look  elsewhere.                   
My  thinking is  that  being on  a  long  waiting  list  if  better than  NO  waiting  list  at  all.
Just  my  own  opinion!

It depends on the risks and benefits. If two local centers, including one that is not so stricted and is willing to take very sick patients, think the risks of transplant are higher than benefits, I am not sure one should risk herself to find a center which will take high-risk patients. The goal is to improve life quality and prolong life. If the transplant is not better than dialysis for doing this, why bother with it?

For the waiting times, I do not know all areas in CA. Overall, it should be longer in CA than OR. For WA, for the same comparison (blood type), waiting times are about one year longer than OR. There is only one area in WA. 
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okarol
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« Reply #41 on: June 06, 2011, 08:03:00 PM »

OUCH!!!!
even if my cousin has connections
but then that wouldnt be right for a doc favoring someone family member

my cousin lives in sana anna call
so it would be in that area

It might worthwhile just to ask what your cousin/connections would recommend.
I put in a zip code of 92705 for Santa Ana in the Kidney Wait Time Calculator and got this:
- CA - Western Medical Center (CAWM), Santa Ana: Expanded Criteria Donor (ECD) or SCD
For Adult Candidates   - Wait Time: 5 yr, 9 m (they do not appear to do Standard Criteria Transplants.)
- 2 other hospitals are close by but they do not list waiting times.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
babycake
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« Reply #42 on: June 06, 2011, 08:34:33 PM »

but yet you still have to live in that area or be 1hour away
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okarol
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« Reply #43 on: June 07, 2011, 12:37:40 AM »

As I said, we live near Los Angeles.
We multi listed in San Francisco - which is a couple hours travel (car, plane, taxi) and in San Diego which is a 2 hour drive time. Both accepted Jenna knowing those limitations.
I was also prepared to go to Arizona or Washington if it would have reduced her wait time.
The problem is money. If you travel to get a transplant you need to stay near the center for about 4 weeks after the surgery - you have labs and clinic days as they fine-tune your immunos. If you don't have a family member or friend to stay with, it can be very expensive. The hospital in san Diego offered a low-cost hospital dorm (small apts. adjacent to the hospital) and we could have stayed there, but luckily our friends let us use their vacation home.
It's not easy and requires planning. The first step is just to call and ask about an evaluation. Talk with a coordinator and see if you get any guidance.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Marina
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God Bless my donor family!! :)

« Reply #44 on: June 07, 2011, 12:42:26 AM »

but yet you still have to live in that area or be 1hour away
I  have  a  friend  who lives  in  CA  (san francisco) and  got  listed  in  OR ,  got her  TX  in  Oregon.
As  Okarol  says,  you  have to  think  of  finacial  aspects  of it too.
My  friend  luckily  has  a friend  there  who let her  stay  at her  place  for  as long  as  it was  necessary.
She  only had  to stay 4 weeks.
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"Anything is possible, if  you  BELIEVE....."  ~~~Joel  Osteen

"Yesterday is history, Tomorrow is a mystery, Today is a gift..... That is why it is called the present"

*************************************************
 Nov 1979 ~ Diabetes 
Apr. 2004- Nov 2010 ~ CAPD
Nov 9, 2010 ~  Received the  THE  GIFT OF LIFE at 
California Pacific  Medical  center  (CPMC)  in San  Francisco,  CA
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