I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: babycake on June 01, 2011, 04:39:22 PM
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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
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Aww, Babycakes. :grouphug;
We just learned that my husband's sister has been placed as inactive on the list. The reason is that they feel that in her present condition she would not survive a transplant.
Surgery always has its risks.
Aleta
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and what hospitol said this
for im wondering if all of the transplant units are the same
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Did the letter also state that transplant eligibility could be reviewed in the future if your medical condition improved? Are there not areas of concern that you can work on such as BP control, elevated lipids, weight control, etc.? What is your age?
the letter is confirm
it is felt that the risks of transplant outweigh the potential 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
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it says thatim not an acceptable canadate for kidney transplant at this time
as for my weight i have lost over 10lbs and they wanted my weight intake to be at 77
which they changed to 74
do to the weight i have lost
they also said that they felt that i didnt have the support i would need to be a successful after transplant
im pretty sure alot of my medical condition wont improve
as for my age im 47yrs old
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You may want a second opinion. Not all transplant centers are the same.
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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.
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KrazeeBrod, standards vary from state to state and hospital to hospital. You can always try again elsewhere if the first one turns you down. I was worried about the weight issue, and was sure they were going to put me on hold after talking to members on here dealing with California's high standards. But the standards here in Michigan are much lower for weight, and I didn't have any problems.
Babycake, that's a tough letter to have to read. Makes you wonder why they wimp out and can't at least explain in person, doesn't it? I think the heart issues are the hardest to get around. If they think you might not survive the surgery, they don't want to risk it. Did they say anything about re-testing, and are there any treatments they suggest for improving your heart condition? If they haven't, try your regular doctor and see if he's got any suggestions.
:grouphug;
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Folks just b/c one transplant center turns you down, does not mean another one will. I know a lady who told me a transplant center told her to lose 30 pounds and she went to another and they said that she didn't need to lose weight. It is not a hopeless situation you just have to keep on fighting.
xo,
R
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Krazeebrod,
I was pretty much the same as you when I went through screening two years ago (including being 61) and I was approved with no problems so I agree with what has been said above, it just depends on the center.
Ed
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I would have to agree with trying another transplant center and when you do, bring the letter and all concerns so you can find out sooner if they will or will not accept you. Just be sure to bring up all concerns, medications, health history and so forth so that way they can tell you right then and there if your a viable candidate or have your situation reviewed by their team when they have their meetings about candidates. You may then have to do additional testing. The center will ask the center you went to for their records on you to see what test they did and if they need to repeat any of them.
Hopefully there is another center close to you.
As for the support system, I think that was b.s. what they told you. I do not have agood one, but I still had mine..
Don't give up and Good Lck.
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if it depends on each transplant center
then why does many show up from out of state to be in the testing and classes at ohsu in portland oregon
does seattle washington have there own unit
if not then im sure they go through portland
i dont know why they said i didnt have a good support team
for my older sister was right there with me
when they had ask if anyone in the family had tb
well my older sister did when my grandfather was alive for he had it and she got it from him
i was little when he had died
and when we brought that up they kinda look at it as me having it.. but no i never did
that can also be one reason but the main is the heart issue
but where or who do i talk to on finding out who would do the transplant without all this crap
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I would ask for a meeting with the transplant coordinator and ask if any of these obstacles can be overcome. If the answer is no, then your only option is to find another center and try getting listed. Sometimes they just need to see that your heart has been stable for a period of time. You might want to request an evaluation with Legacy in Portland http://www.legacyhealth.org/body.cfm?id=833
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Follow Okarol's advic on that babycake.
Sometimes people come out of state is to get multi listed at transplant centers to get better odds of getting a transplant or in some cases it is closer to them than one in their state are examples I have seen.
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many that were in the class had came far away
one guy came from boston
you figure there would be a transplant center in his area
legacyhealth
was the first place i was sent to
which they had to change me over to ohsu do to my health insurance
is there another center in either washington
or california
maybe cal would be a good choice for my cousin know the head cheif of the hospitol there
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There maybe a different reason then for the Boston person, but there can be many.
The list I have of transplant centers in books I have is old, by the time I find a credable site, someone else might post (hint: okarol :rofl; ;D ), but I'll try to be quick.
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A quick search found this one where you type in your zip code to find a center http://www.kidneylink.org/ChoosingaTransplantCenter.aspx (http://www.kidneylink.org/ChoosingaTransplantCenter.aspx)
So far search is going slow. Google is giving me links to individual kidney transplant centers near me and surrounding states.
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I happen to know a little about OHSU and Legacy. OHSU does not allow multiple lists. So anyone from out of the area has to transfer his or her waiting time to OHSU before accepted into the list. OHSU also has a very strict post-transplant care plan. There are a lot of travel to Portland during the first year of transplant. The reason there are some folks trying to list in OHSU is that OHSU is better than Legacy and the waiting time is relatively short comparing to those in CA and other places with big cities. From reading the PKD foundation news, a guy working for the PKD foundation in LA got his transplant at Portland, an good example, considering the long waiting time at LA.
Legacy does allow multiple list and the evaluation standard is similar to OHSU (probably lower standards than OHSU, based one transplant coordinator). This coordinator told me if one is accepted by OHSU, there is no any problem to be accepted by Legacy. Beside the relative poor results, Legacy also has some anti-outsider evaluation protocol. For example, it requires both patient and partner to see SW for two hours only and go home and come back again for other appointments. OHSU would try to minimize the trips for the outsiders for evaluation, whereas Legacy does not.
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I tried UNOS, but no help in finding a list of centers, so I emailed them to put it on their patient education tab, but found some useful information people can order. I tried American Transplant Association, but seems they are rebuilding website since they do not have any links set up anymore. Donate Life, nope, no useful info. HRSA Gov't website), nope unless you want to learn about donation and vey little about the transplant process.
The Winner So Far - National Kidney Foundation by state. They list transplant centers in a particular state. So if I went to NKF of Illinois, they list all the transplant centers in Illinois.
There's gotta be a simpler list besides http://www.transplantweek.org/members/Guide/statesA-I.htm (http://www.transplantweek.org/members/Guide/statesA-I.htm)
It still missing contact information or a link to that center unlike NKF.
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A quick search found this one where you type in your zip code to find a center http://www.kidneylink.org/ChoosingaTransplantCenter.aspx (http://www.kidneylink.org/ChoosingaTransplantCenter.aspx)
So far search is going slow. Google is giving me links to individual kidney transplant centers near me and surrounding states.
i emall the kidneylink.org
but havent heard anything back
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the transplant week link and NKF of a particular state seemed best at listing centers. After the searching I forgot what state you were from. I can scan in my book that has listings for transplant centers, but the book is old and ATA is in the process of updating the book.
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please send me the info
thank you
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As far as how long each center has for wait times - you can put your zip code in this calculator, then select a hospital, put in your blood type and it will tell you "Typical Waiting Times For Deceased Donor Kidney Transplants"
http://www.ustransplant.org/Calculators/KidneyWaitTime.aspx
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What states are you interested in? California & Washington or do you want more?
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washington... seattle or small surroundings
cal... sandiego
or surrounding cities
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From: http://www.healthinsurancequotesamerica.com/organtransplantcenters.html (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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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.
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thank you
but i didnt see any phone numbers
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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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right
but the ones you did provide i didnt see phone numbers
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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.
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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 (http://optn.transplant.hrsa.gov/members/search.asp)
California: http://optn.transplant.hrsa.gov/members/directory.asp (http://optn.transplant.hrsa.gov/members/directory.asp)
Washington: http://optn.transplant.hrsa.gov/members/directory.asp (http://optn.transplant.hrsa.gov/members/directory.asp)
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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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thank you
do you know if there is a transplant center in sana ana cal
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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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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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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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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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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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im not even on the waiting list
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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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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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but yet you still have to live in that area or be 1hour away
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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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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.