How does a local nephrologist work with a transplant team?

Posted by hello1234 @hello1234, Aug 20 10:54am

Hi everyone!
Happy Saturday 😊 I have a question. Has anyone had a medical situation, question or concern that required your local nephrologist to reach out to the transplant team? I assume your local nephrologist calls the transplant coordinator. But in your experience, what happened next? Does a transplant team doctor call your local doctor back or how did it work in your situation?
Thanks everyone!

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Hello @hello1234. Can I ask you to share a few more details that may help others share their experience with you as it relates to what you are going through?

What is your particular reason for the local nephrologist needing to reach out to the transplant coordinator, if you don't mind sharing? Are you experiencing a lack of response that has you wondering who may be dropping the ball in this information exchange?

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@amandajro

Hello @hello1234. Can I ask you to share a few more details that may help others share their experience with you as it relates to what you are going through?

What is your particular reason for the local nephrologist needing to reach out to the transplant coordinator, if you don't mind sharing? Are you experiencing a lack of response that has you wondering who may be dropping the ball in this information exchange?

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Hi @amandajro
Yes, you are correct. I am a two year post transplant patient and my blood work came back BK Virus positive on Monday. When I met with my local nephrologist on Tuesday morning, the last thing he said was that he was going to reach out to my transplant coordinator to speak with a transplant doctor to discuss the plan for BK. (This was the first time he ever said he wanted to speak with a transplant doctor). He told me that he would be calling me in a day or two to share what he learned. The week passed and I received no call back from my local nephrologist.
My saving grace is that I am physically going to Mayo for my annual visit this week and I will be able to ask all of his BK questions, share his thoughts, and get the treatment plan directly.
Anyway, I look at this experience as a "drill". If it's important to have coordination between your local doctor and transplant doctor, how is it supposed to work? For the last two years, I have been the go-between person making the calls, and keeping both sides in the loop, this is the first time he said he wanted to call.
I am just a little disappointed.

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@hello1234

Hi @amandajro
Yes, you are correct. I am a two year post transplant patient and my blood work came back BK Virus positive on Monday. When I met with my local nephrologist on Tuesday morning, the last thing he said was that he was going to reach out to my transplant coordinator to speak with a transplant doctor to discuss the plan for BK. (This was the first time he ever said he wanted to speak with a transplant doctor). He told me that he would be calling me in a day or two to share what he learned. The week passed and I received no call back from my local nephrologist.
My saving grace is that I am physically going to Mayo for my annual visit this week and I will be able to ask all of his BK questions, share his thoughts, and get the treatment plan directly.
Anyway, I look at this experience as a "drill". If it's important to have coordination between your local doctor and transplant doctor, how is it supposed to work? For the last two years, I have been the go-between person making the calls, and keeping both sides in the loop, this is the first time he said he wanted to call.
I am just a little disappointed.

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Fully agree, at times you have be your own advocate after you run into a wall !
I have been thru' this exercise with conviction !
Best Wishes & Success in your efforts…

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Hi @l0lag0lag0b3 😊
Good morning! Great to hear from you! Thanks so much for responding. It is very kind of you to jump in. I am not sure why I posted this situation since I totally agree with you….we all need to advocate for ourselves and I know this to be true too. I guess in my heart, I was hoping someone was going to share a successful, positive story of an excellent, timely, smooth process of communication between the doctors that would make me feel better that my experience is a fluke. I know that both my local doctor and the hospital doctors are all stretched for time, so the breakdown of communication could have happened on either side. Bummer.
Thanks again for being so supportive all the time l0lag0lag0b3

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@hello1234

Hi @l0lag0lag0b3 😊
Good morning! Great to hear from you! Thanks so much for responding. It is very kind of you to jump in. I am not sure why I posted this situation since I totally agree with you….we all need to advocate for ourselves and I know this to be true too. I guess in my heart, I was hoping someone was going to share a successful, positive story of an excellent, timely, smooth process of communication between the doctors that would make me feel better that my experience is a fluke. I know that both my local doctor and the hospital doctors are all stretched for time, so the breakdown of communication could have happened on either side. Bummer.
Thanks again for being so supportive all the time l0lag0lag0b3

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@hello1234 While I am not a transplant patient, my husband is. Before we moved here three years ago, his transplant team kept in regular contact with his local nephrologist about anything. I recall less a year after his transplant, he got a call out of the blue from them, to come in immediately. Turned out the other kidney recipient from the same donor had Hep C. After priority testing, we found out the other recipient had latent HepC that was triggered by the post transplant meds. Hubby was fine. And I insisted in getting vaccinated myself. Upshot of that, was the communication and all, was great.

Unfortunately, up here, we are often left to advocating for his care, and being the procrastinator he is, it falls to me to make the calls/or make reminders all the time.

My nephrologist and oncologist are in separate practices, but they are in great communication with each other, as they coordinate my care with end stage renal disease, and a blood cancer, sleeving treatments together to keep me going. I feel very blessed to have these two as part of my medical team.
Ginger

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Hi @gingerw 😊
Thanks so much for joining in the conversation! It makes me feel better to know that I am not the only person with the job of coordinating care. It sounds like you have examples of both situations. Excellent coordination and excellent communication between the docs….and not so much.
This week I will find out why I never received a call back from my local nephrologist. I am curious if it's because he never received a call back or what the reason may be. It's concerning because there may be a time when I am sick, in the hospital, and unable to advocate for myself. I am a widow, so I do not have a fabulous spouse (like you!) that can take charge for me. I think I posted this concern out of fear for that type of scenario.
I am hoping that my local nephrologist received a call from a transplant doc and just got busy and forgot to call me with the update.
I was very happy to hear that the Hep C scare that your husband had, turned out to be that your hubby was fine! Sounds like a very stressful situation while it was happening. I totally understand wanting to be vaccinated!
Ginger, thank you again for sharing your experience with me. It really helps.

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Teamwork is talked about but never practiced.

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Regarding Unreturned phone messages –
I have learned that a provider will sometimes make a return phone call from an "unknown'' contact phone number. My husband recently missed a video consult because the call came on a number that his phone did not recognize – His phone settings are on silent for unknown numbers.

Remember to check your phone settings if you block unlisted numbers.

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@rosemarya

Regarding Unreturned phone messages –
I have learned that a provider will sometimes make a return phone call from an "unknown'' contact phone number. My husband recently missed a video consult because the call came on a number that his phone did not recognize – His phone settings are on silent for unknown numbers.

Remember to check your phone settings if you block unlisted numbers.

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Good tip @rosemarya 😊

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