Best Time To Be Evaluated For A Transplant

Are you waiting to receive a transplant? Share your kidney transplant experience.
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risasimon

Best Time To Be Evaluated For A Transplant

Postby risasimon » Wed Oct 16, 2013 5:51 pm

Navigating renal replacement options (when your kidneys can no longer function adequately on their own) can be confusing and emotionally overwhelming. When do you think a PKD patient should be evaluated for a kidney transplant? Do you think you should wait until your doctor says it's time and refers you, or do you think you could benefit from initiating a dialogue about the referral before the topic comes up in conversation?

bestdayever

Re: Best Time To Be Evaluated For A Transplant

Postby bestdayever » Thu Oct 17, 2013 11:46 am

Hopefully you have a good relationship with your nephrologist, ultimately they will be the person recommending you start the evaluation to be on the list. It takes time to go through all the testing and many different health issues are discussed before being listed.
Once you are on the list you will be given a transplant nurse coordinator whom you can call and ask any questions or set up a time to talk about your concerns.

Risasimon

Re: Best Time To Be Evaluated For A Transplant

Postby Risasimon » Wed Nov 20, 2013 2:57 pm

Indeed, the patient-nephrologist relationship is critically important. Ensuring you are on the same page regarding your desires and wishes is equally important. While traditionally it is the patient's nephrologist who will refer them for transplant evaluation, you can also advocate on your own behalf by directly contacting a transplant center of your choice to ask questions and see what their referral process is like. I needed to politely nudge my doctor (more than a couple of times) to submit the referral. According to SOP's I wasn't sick enough yet, thought the transplant department willing took me in for evaluation at GFR 25. Insist on early evaluation. Don't assume what one person says is the only way to fly. Become your own best advocate and do the research yourself. Inquire, investigate and proactively find ways to bypass dialysis if at all possible.

pmiille

Re: Best Time To Be Evaluated For A Transplant

Postby pmiille » Wed Dec 11, 2013 9:55 pm

This is a very good question. But how many doctors are willing or will encourage early evaluation? I am at GFR of 23 and would like to be proactive about the next steps in this journey. But I don't know yet what my doctor will say. Should I contact the transplant centers before I go to see him or wait and see what he says first? I am scheduled to see him in 2 months.

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Re: Best Time To Be Evaluated For A Transplant

Postby risa simon » Wed Dec 25, 2013 9:26 am

Sorry for the delay in this response. Do not wait until your next appointment. Request the referral by phone if need be, or an appointment before the end of the year if you can. Timing is everything. You have nothing to lose by simply calling a transplant center and asking them how they'd prefer you be referred so you can learn more about the process. You are at a perfect time (and counting) to be evaluated. Do not let pre-scheduled appointments dictate your future! The time is now :!:
Risa Simon, Volunteer Phoenix Chapter Coordinator
Patient Mentor, Speaker, Author: "Shift Your Fate: Life-Changing Wisdom For Proactive Kidney Patients"
http://www.amazon.com/gp/product/0578113635

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Re: Best Time To Be Evaluated For A Transplant

Postby risa simon » Sun May 11, 2014 9:23 am

Risasimon wrote:Indeed, the patient-nephrologist relationship is critically important. Ensuring you are on the same page regarding your desires and wishes is equally important. While traditionally it is the patient's nephrologist who will refer them for transplant evaluation, you can also advocate on your own behalf by directly contacting a transplant center of your choice to ask questions and see what their referral process is like. I needed to politely nudge my doctor (more than a couple of times) to submit the referral. According to SOP's I wasn't sick enough yet, thought the transplant department willing took me in for evaluation at GFR 25. Insist on early evaluation. Don't assume what one person says is the only way to fly. Become your own best advocate and do the research yourself. Inquire, investigate and proactively find ways to bypass dialysis if at all possible. It's well worth your effort!
Risa Simon, Volunteer Phoenix Chapter Coordinator
Patient Mentor, Speaker, Author: "Shift Your Fate: Life-Changing Wisdom For Proactive Kidney Patients"
http://www.amazon.com/gp/product/0578113635

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Re: Best Time To Be Evaluated For A Transplant

Postby stevejackal » Wed Jun 25, 2014 6:50 am

A transplant evaluation team is a group of people that talk with you and coordinate an evaluation to find out if you would be a good candidate to receive a transplant. The team usually consists of transplant doctors, psychiatrist, social worker, and transplant coordinator along with anyone else that might be involved with getting a transplant.


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Re: Best Time To Be Evaluated For A Transplant

Postby slogman » Fri Aug 08, 2014 2:47 pm

Yes they can if they can qualify. To be a donor, you must be at least 18 years old, be a compatible blood type and similar in body size. The donor must go through the same evaluation process that the recipient goes through making sure they are in excellent health. A liver transplant is the most serious of all single transplant surgeries because of its complexity. I was told at my evaluation that it is the grand daddy of all surgeries and more complex than even a heart transplant.

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cruzan27

Re: Best Time To Be Evaluated For A Transplant

Postby cruzan27 » Fri Jan 30, 2015 3:44 pm

I have been diagnosed w/PKD about 5 yrs ago. I am now 43. And I a was just told by my Nephro we are at that time to start dialysis and get on board for Transplan. I am scared and lost. My creatnine is @3.7. I have not started dialysis I will being a surgeon to start dialysis and the same time my Nephro Doc told me to contact a Transplant center right away to get info right away. Should I feel this way all lost not sure of what to do? Please provide some feed back as best route to take.

Renal Rehab Believer

Re: Best Time To Be Evaluated For A Transplant

Postby Renal Rehab Believer » Sun Apr 19, 2015 4:31 pm

Since it takes a long time to find a donor kidney, I would make choosing a transplant center your priority. There is no harm in starting the process now. I was told in June, 2012 when my creatinine was 2.5 that i would be on dialysis soon. However, I am a fighter. i refused to believe this. I drastically modified my diet and increased my cardiovascular exercise. Today my creatinine is 6.5 and I feel stronger than I did in June, 2012. Whole food, low sodium, plenty of clean water and exercise, exercise, exercise is keeping me healthy without the need for dialysis. Advocating for aggressive treatment of Anemia and High Blood Pressure have also helped me a great deal.

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