Kidney transplant recipient looking for a Nephrologist: Suggestions?

Posted by zhana @zhana, Oct 13, 2018

I had a kidney transplant several months ago and have been getting blood tests (weekly) and evaluations (bi-weekly) at Mayo Clinic. The nephrologist I used pre-transplant does not seem to interested in continuing this (or anything similar) to this level of care. I had a fairly simple transplant from a living donor and I am doing very well. Can anyone suggest or recommend an appropriate physician, in my area (south Tempe, AZ) who is accepting new patients. Thanks so much for your help.

Interested in more discussions like this? Go to the Transplants group.

@zhana, I want to, first, congratulate you on your recent kidney transplant. And, I also want to send you a sincere Welcome to Connect. I am happy that you have joined the transplant discussion.
I am a liver/kidney recipient. My local (Kentucky) PCP monitors all of my health issues, and he can consult with Mayo if/when the need arises. My labs are drawn locally and sent to Rochester where I received my transplant. I do return to Rochester annually for my evaluation. I realize that we all have unique circumstances and health needs, so this might not apply to you
Has your transplant team suggested that you need to have a local nephrologist?

REPLY

I second what @rosemarya said, I have a local Nephrologist and then go to Mayo annually (or more often if needed). The partnership between my local labs and specialists along with the team at Mayo works out well. I do not live in your area so I cannot suggest a dr. there.

REPLY

@rosemary Thanks for the quick response. Yes the transplant team has suggested that I need an outside nephrologist. I live fairly close to Mayo Scottsdale, AZ and had the procedure done there but they are very busy with potential/new patients and like to have us go back to our pre-transplant nephrologist. Unfortunately as I noted in my previous post my per-transplant nephrologist is much more interested in working with people on dialysis than they seem to be in post transplant. The services they are proposing for me are significantly less than what Mayo recommends. As the transplant process has gone very well for me and Mayo does 300+ kidney transplants in Scottsdale every year, I want someone who will for the most part follow Mayo's protocols.

@jolinda seems to have the right setup and I was hoping that there would be someone from my area who could provide an appropriate recommendation. I have started to call around but all the offices say their nephrologists work with Mayo transplant patients (which is not the case with my own doctor). It is very frustrating to wait a month for an appointment only to find out they are not doing what we are looking for (the target seems to me to be pretty straight forward). I guess I need to work harder at getting a recommendation from the Mayo staff but they are very reluctant as they do not want to be seen as favoring one doctor or nephrology group.

Thanks for your input!

REPLY
@zhana

@rosemary Thanks for the quick response. Yes the transplant team has suggested that I need an outside nephrologist. I live fairly close to Mayo Scottsdale, AZ and had the procedure done there but they are very busy with potential/new patients and like to have us go back to our pre-transplant nephrologist. Unfortunately as I noted in my previous post my per-transplant nephrologist is much more interested in working with people on dialysis than they seem to be in post transplant. The services they are proposing for me are significantly less than what Mayo recommends. As the transplant process has gone very well for me and Mayo does 300+ kidney transplants in Scottsdale every year, I want someone who will for the most part follow Mayo's protocols.

@jolinda seems to have the right setup and I was hoping that there would be someone from my area who could provide an appropriate recommendation. I have started to call around but all the offices say their nephrologists work with Mayo transplant patients (which is not the case with my own doctor). It is very frustrating to wait a month for an appointment only to find out they are not doing what we are looking for (the target seems to me to be pretty straight forward). I guess I need to work harder at getting a recommendation from the Mayo staff but they are very reluctant as they do not want to be seen as favoring one doctor or nephrology group.

Thanks for your input!

Jump to this post

@zhana First off, congratulations on your new kidney! I would suggest you let Mayo know your difficulties finding a post transplant nephrologist. Perhaps they will cover you for the time it takes to find a new nephrologist that will follow their protocol. My husband was lucky in that he kept the same nephrologist pre and post transplant here in the Los Angeles area. I am sure Mayo would want your new nephrologist following their protocol so they would be willing to support you until that can happen. Good luck to you and let us know what you find out.
Ginger

REPLY
@zhana

@rosemary Thanks for the quick response. Yes the transplant team has suggested that I need an outside nephrologist. I live fairly close to Mayo Scottsdale, AZ and had the procedure done there but they are very busy with potential/new patients and like to have us go back to our pre-transplant nephrologist. Unfortunately as I noted in my previous post my per-transplant nephrologist is much more interested in working with people on dialysis than they seem to be in post transplant. The services they are proposing for me are significantly less than what Mayo recommends. As the transplant process has gone very well for me and Mayo does 300+ kidney transplants in Scottsdale every year, I want someone who will for the most part follow Mayo's protocols.

@jolinda seems to have the right setup and I was hoping that there would be someone from my area who could provide an appropriate recommendation. I have started to call around but all the offices say their nephrologists work with Mayo transplant patients (which is not the case with my own doctor). It is very frustrating to wait a month for an appointment only to find out they are not doing what we are looking for (the target seems to me to be pretty straight forward). I guess I need to work harder at getting a recommendation from the Mayo staff but they are very reluctant as they do not want to be seen as favoring one doctor or nephrology group.

Thanks for your input!

Jump to this post

zhana, I think that I made my answer in haste, and it sounds misleading. I neglected to consider that I did not have need of a nephrologist prior to my kidney transplant that was due to acute kidney failure caused by my liver failure. I did have a GI for the liver, however.
You are absolutely correct in wanting to follow the protocol that Mayo has established for you. I am confident that you will find someone to meet that criteria.

REPLY

@zhana, I want to drop in and ask how your are coming along with your recovery. As you continue your post transplant living, I want to invite you to join into any of our discussions. You are welcome to read and to join in anywhere. How can I help you?

Have you been able to find a local nephrologist yet?

REPLY

I've been having increasing amounts of anxiety as my  routine nephrology appts approach on Jan 27th.

When I lived in AZ, there were a variety of neohrologists to choose from and I received excellent care. But I moved to a much smaller city in CO, and there is only one nephrologist office in the city, and the care I receive there is extremely sub par compared to the experiences I had living in AZ.

Calling the office with questions or concerns is nearly useless. In one experiences I played phone tag for nearly 3 weeks, even after I asked my question and requested multiple times they please leave a detailed message on my phone. I work during the day, and they seem incapable of answering questions or returning calls in a timely manner.

I eventually gave up calling and have resorted to using their patient portal, but there are times I've received no response at all!

They've called me multiple times to reschedule appointments, and once they called me the day of( after having this appointment scheduled for 3 months) to cancel and reschedule for another month out.

My BK virus was up, they reduced my antirejection meds, and rather than following up in 2 weeks–like nearly every nephrologist I've ever had would do– they handed me lab work and said to get it done again in 3 months. I was worried, so I ended up using that lab work in 2 weeks time to check my bk levels. They were down, but not enough to up my antirejection meds.

I haven't even seen the same doctor for the last year. Every appt has been with a diff doctor because the doctor I was assigned to has been out on medical leave for nearly a year now. Rather than providing some consistency my appointment have been rescheduled with whoever is available.

I feel very frustrated about all this, and have been worring about my kidney and kidney function nearly all the time now. Im diligent about watching for signs of rejection or infection, but as my doctor appointments  approach I find myself nearly crippled with anxiety. Constantly worrying that I'm rejecting and don't know it. Im tired if having to explain my situation and health to a new doctor every visit, and am very afraid that–due to the lack of follow up and good care– I will lose this kidney.

The idea of going back on dialysis makes me sick with dread.

I know I am my best advocate, but trying to advocate for myself seems like a moot point when I can't even get the office to answer my questions, follow up on what I view as important, or provide consistent care…

In this upcoming appointment I'm going to be very aggressive about my care– be sure to ask the doctor all the questions I can think of, and request that I be transfered to a  different doctor–the same doctor– so that I can at least try to establish some kind of consistency. Im going to ask for multiple lab orders so I can check my bk levels myself, and request a direct extension to this doctors medical assistant. Im not going to let this subpar care jeopardize my kidney. I'm just so afraid it already has…

REPLY
@shepn7

I've been having increasing amounts of anxiety as my  routine nephrology appts approach on Jan 27th.

When I lived in AZ, there were a variety of neohrologists to choose from and I received excellent care. But I moved to a much smaller city in CO, and there is only one nephrologist office in the city, and the care I receive there is extremely sub par compared to the experiences I had living in AZ.

Calling the office with questions or concerns is nearly useless. In one experiences I played phone tag for nearly 3 weeks, even after I asked my question and requested multiple times they please leave a detailed message on my phone. I work during the day, and they seem incapable of answering questions or returning calls in a timely manner.

I eventually gave up calling and have resorted to using their patient portal, but there are times I've received no response at all!

They've called me multiple times to reschedule appointments, and once they called me the day of( after having this appointment scheduled for 3 months) to cancel and reschedule for another month out.

My BK virus was up, they reduced my antirejection meds, and rather than following up in 2 weeks–like nearly every nephrologist I've ever had would do– they handed me lab work and said to get it done again in 3 months. I was worried, so I ended up using that lab work in 2 weeks time to check my bk levels. They were down, but not enough to up my antirejection meds.

I haven't even seen the same doctor for the last year. Every appt has been with a diff doctor because the doctor I was assigned to has been out on medical leave for nearly a year now. Rather than providing some consistency my appointment have been rescheduled with whoever is available.

I feel very frustrated about all this, and have been worring about my kidney and kidney function nearly all the time now. Im diligent about watching for signs of rejection or infection, but as my doctor appointments  approach I find myself nearly crippled with anxiety. Constantly worrying that I'm rejecting and don't know it. Im tired if having to explain my situation and health to a new doctor every visit, and am very afraid that–due to the lack of follow up and good care– I will lose this kidney.

The idea of going back on dialysis makes me sick with dread.

I know I am my best advocate, but trying to advocate for myself seems like a moot point when I can't even get the office to answer my questions, follow up on what I view as important, or provide consistent care…

In this upcoming appointment I'm going to be very aggressive about my care– be sure to ask the doctor all the questions I can think of, and request that I be transfered to a  different doctor–the same doctor– so that I can at least try to establish some kind of consistency. Im going to ask for multiple lab orders so I can check my bk levels myself, and request a direct extension to this doctors medical assistant. Im not going to let this subpar care jeopardize my kidney. I'm just so afraid it already has…

Jump to this post

@shepn7, I have requested that your discussion be added to this existing discussion where others have shared been engaged n a conversation about how they also felt frustration over their search for a local doctor or nephrologist after their transplant. I think that you will benefit from reading what has already been shared, and as a member on Connect, you will be able to participate in any and all of the comments. You are not the only patient who faces this problem.
I feel your concern and frustration at what you describe. I agree that you are (we have to be) your best advocate. Unfortunately doctors are understaffed at the present time, and medical absences are becoming more frequent, However, we still must have someone who will work with us to protect our transplanted organs.
As transplant recipients we know that it It’s important to us that our care is being coordinated and continued after we leave our clinic. Transplant doctors, nurses and medical secretaries are experts at communicating with home providers by using secure online methods, printed letters and also notes mailed to our at-home provider, and phone calls when the information is more urgent or needs more explanation.
For your upcoming appointment, I advise being firm reather that aggressive (even if that is how you feel) . Why don't you take extra help along with you, to back you up – Why don't you call your transplant center and request a a statement or communication from them about 'your particular' needs. They in turn will be able to communicate to the nephrologists and work to coordinate your care.

How long have you been a patient with this nephrology group? Are you having any symptoms that would indicate that your kidney is in jeopardy?

I want to tag @zhana,@gingerw, @jolinda to this discussion.

REPLY
@rosemarya

@shepn7, I have requested that your discussion be added to this existing discussion where others have shared been engaged n a conversation about how they also felt frustration over their search for a local doctor or nephrologist after their transplant. I think that you will benefit from reading what has already been shared, and as a member on Connect, you will be able to participate in any and all of the comments. You are not the only patient who faces this problem.
I feel your concern and frustration at what you describe. I agree that you are (we have to be) your best advocate. Unfortunately doctors are understaffed at the present time, and medical absences are becoming more frequent, However, we still must have someone who will work with us to protect our transplanted organs.
As transplant recipients we know that it It’s important to us that our care is being coordinated and continued after we leave our clinic. Transplant doctors, nurses and medical secretaries are experts at communicating with home providers by using secure online methods, printed letters and also notes mailed to our at-home provider, and phone calls when the information is more urgent or needs more explanation.
For your upcoming appointment, I advise being firm reather that aggressive (even if that is how you feel) . Why don't you take extra help along with you, to back you up – Why don't you call your transplant center and request a a statement or communication from them about 'your particular' needs. They in turn will be able to communicate to the nephrologists and work to coordinate your care.

How long have you been a patient with this nephrology group? Are you having any symptoms that would indicate that your kidney is in jeopardy?

I want to tag @zhana,@gingerw, @jolinda to this discussion.

Jump to this post

@rosemarya Thank you for asking me to join in!

@shepn7 Rosemary has brought up very good points. Your transplant team would probably like to know that you are not satisfied with your now-home provider, and would be wanting to communicate with them! I wonder if your current nephrology office has not had many transplant patients, and so may not be fully aware how critical it is to stay on top of labwork and issues that arise? Do you think that may be a factor here? You then have the opportunity to help educate them!

You are not the first person to have doubts/concerns/worries when it comes to a good experience with specialists. My suggestion is to write out what you need to see from them, how things might be changed up. Review that list. Write out your concerns. Have it "cemented" in your mind; it will be easier to express yourself in a firm manner at your appointment. As patients, no matter our health issues, we are our own best advocate in our care. How does this sound to you?
Ginger

REPLY
@shepn7

I've been having increasing amounts of anxiety as my  routine nephrology appts approach on Jan 27th.

When I lived in AZ, there were a variety of neohrologists to choose from and I received excellent care. But I moved to a much smaller city in CO, and there is only one nephrologist office in the city, and the care I receive there is extremely sub par compared to the experiences I had living in AZ.

Calling the office with questions or concerns is nearly useless. In one experiences I played phone tag for nearly 3 weeks, even after I asked my question and requested multiple times they please leave a detailed message on my phone. I work during the day, and they seem incapable of answering questions or returning calls in a timely manner.

I eventually gave up calling and have resorted to using their patient portal, but there are times I've received no response at all!

They've called me multiple times to reschedule appointments, and once they called me the day of( after having this appointment scheduled for 3 months) to cancel and reschedule for another month out.

My BK virus was up, they reduced my antirejection meds, and rather than following up in 2 weeks–like nearly every nephrologist I've ever had would do– they handed me lab work and said to get it done again in 3 months. I was worried, so I ended up using that lab work in 2 weeks time to check my bk levels. They were down, but not enough to up my antirejection meds.

I haven't even seen the same doctor for the last year. Every appt has been with a diff doctor because the doctor I was assigned to has been out on medical leave for nearly a year now. Rather than providing some consistency my appointment have been rescheduled with whoever is available.

I feel very frustrated about all this, and have been worring about my kidney and kidney function nearly all the time now. Im diligent about watching for signs of rejection or infection, but as my doctor appointments  approach I find myself nearly crippled with anxiety. Constantly worrying that I'm rejecting and don't know it. Im tired if having to explain my situation and health to a new doctor every visit, and am very afraid that–due to the lack of follow up and good care– I will lose this kidney.

The idea of going back on dialysis makes me sick with dread.

I know I am my best advocate, but trying to advocate for myself seems like a moot point when I can't even get the office to answer my questions, follow up on what I view as important, or provide consistent care…

In this upcoming appointment I'm going to be very aggressive about my care– be sure to ask the doctor all the questions I can think of, and request that I be transfered to a  different doctor–the same doctor– so that I can at least try to establish some kind of consistency. Im going to ask for multiple lab orders so I can check my bk levels myself, and request a direct extension to this doctors medical assistant. Im not going to let this subpar care jeopardize my kidney. I'm just so afraid it already has…

Jump to this post

@shepn7, I am concerned because last time we spoke, you were preparing for a Jan 27 appointment, along with dissatisfaction about the care you were receiving from a particular nephrologist.
Might I drop in and ask how you are getting along? Has the BK virus problems been settled? What progress or help from your transplant have you experienced in your nephrologist search?

REPLY
Please sign in or register to post a reply.
  Request Appointment