letter from the transplant center

[babycake]

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

[willowtreewren]

Aww, Babycakes. 

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

[babycake]

and what hospitol said this
for im wondering if all of the transplant units are the same

[PatDowns]

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

[babycake]

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

[bette1]

You may want a second opinion.  Not all transplant centers are the same. 

[KrazeeBrod]

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.

[jbeany]

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.
 

[rsudock]

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

[edersham]

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

[Chris]

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.

[babycake]

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

[okarol]

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

[Chris]

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.

[babycake]

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

[Chris]

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 ), but I'll try to be quick.

[Chris]

A quick search found this one where you type in your zip code to find a center 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.

[Jie]

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.

[Chris]

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
 
It still missing contact information or a link to that center unlike NKF.
 

[babycake]

A quick search found this one where you type in your zip code to find a center 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

[Chris]

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.

[babycake]

please send me the info
thank you

[okarol]

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

[Chris]

What states are you interested in? California & Washington or do you want more?

[babycake]

washington... seattle or small surroundings
cal... sandiego
or surrounding cities