I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: appleface on December 17, 2013, 07:50:23 PM
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hi all
Now the dr from the transplant center sees me every 6 months and I asked the transplant coordinator if I can see the local dr in between.
The transplant coordinator told me I can go to see a local doctor but the dr in the transplant center is the only one can change the program amount. When I went to see my local doctor and told him about that, he was so angry and he kick me out of the office and saying he has a lot of transplant patients and none of them has such issue .
now I do not has local doctors now. I
how about your guys?
Thanks
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Reading your post, I assume "program" means "prograf" (the anti-rejection medication)?
If that's the case, then I completely understand that your transplant center wants to be the entity that manages your Prograf levels. Transplant MDs/PAs/NPs are the individuals who are trained to manage levels of anti rejection drugs, not a Primary Care physician.
In my case, I am also at the 6 month mark between transplant center visits but I also see my Primary Care physician twice a year on his request. He gets copies of my monthly labs as well per transplant center request and if he sees something out of range, he will generally call me to ensure that the transplant center has picked it up and is taking care of it.
But to answer your question, I think that your local doctor acted totally out of line. I hope that you can find a new local doctor, maybe contact your transplant center to see if there is someone they might recommend?
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My hubby, before his transplant failed this summer, had a local Nephrologist who would always consult with the Transplant Drs who were 100 miles away , on most any med changes. His monthly labs done locally were also send down as well as any medical changes. I believe they usually work closely together. I agree with the prior post, your Dr is out of line, you need a new one !!! In your best interest and health .
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Having a nephrologist you see regularly is important. I see my local nephrologist every 4 months. Soon I'll be on once a year with the transplant center. The transplant center does prograf, cellcept, prednisone, and omeprazole. They determine any changes to those meds. My local neph does everything else. BP meds, osteoporosis, cholesterol, etc. It actually works well.
I have no idea why that doc would be so mad about not being able to change your prograf. He was way out of line. Keep looking for a new doctor to see regularly.
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Thanks for all your guy's reply!
I did feel humiliated by the local kidney dr. Thank you for your guys support! I feel much better now. I need to find another doctor . Thank you vey much!
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I find it interesting that you have a local nephrologist. I do not. My pre-transplant nephrologist who I saw for years has told me that I will be followed only by my PCP and transplant center unless something goes awry with my new kidney.
Maybe it depends on the reason you have kidney failure? I have IgA nepropathy and it is not 100% that it will attack the new kidney and even if it does, it will be very slow progressing.
Having a nephrologist you see regularly is important. I see my local nephrologist every 4 months. Soon I'll be on once a year with the transplant center. The transplant center does prograf, cellcept, prednisone, and omeprazole. They determine any changes to those meds. My local neph does everything else. BP meds, osteoporosis, cholesterol, etc. It actually works well.
I have no idea why that doc would be so mad about not being able to change your prograf. He was way out of line. Keep looking for a new doctor to see regularly.
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^
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Even when I was on dialysis, my neph did not function as my PCP. I still saw my PCP twice a year and whenever I was hospitalized, my neph and PCP both rounded on a daily basis. I believe this was because they were all part of the same physician group and shared the same EMR. No transfer of records necessary and everyone had access to everything. I am also fortunate in that my neph and PCP are good friends in "real life" and they seem to have the same goals in mind when it comes to treating their patients.
I realize that my situation is unique though and if this coordination doesn't flow easily, I can see where troubles may occur as with appleface's situation.
From the time starting dialysis going forward - even when I had a transplant - I've been fortunate to have nephrologists also taking on the role as my PCP. Works great for me since they all have internal medicine practices with nephrology as their sub-specialty. Much less complicated without an additional MD in the loop, especially when medical records are involved and needing a referral to another specialist.
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My nephrologist refuses to act as my PCP. So I have a PCP as well. But I figure extra sets of eyes help keep me healthy. My transplant center does expect me to have a local nephrologist.
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I'm like jeannea - I have a PCP, a "regular" neph, and a tx neph. The "regular" neph and the tx neph both keep tabs on all of my labs and communicate. I see the tx neph once a year for follow-up. I am also back on the list, so I have also seen the same tx neph for my tx eval appt back in July. My regular neph referred me back to them.
KarenInWA
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What would concern me most about this is that the local neph kicked you out and refused to have you on his books for simply relaying a message that your transplant neph wants to be involved in any changes made. Best off with finding another local one by the sounds of it!
We don't have that issue over here because Blokey's always had the same neph ... pre-haemoD, during haemoD and post-transplant. It makes life somewhat smoother.
And on a side note ...
The transplant center does prograf, cellcept, prednisone, and omeprazole.
We think that's the medication which killed Blokey's kidneys (or at least speeded up the process from fairly good function [50+%] to very bad function [practically non-existent] in about a year!) It's okay though, don't panic! They think he's just one of the unfortunate ones who has a reaction to that particular med (a 1 in 500 chance, or something).
appleface, hope you find a nicer doctor soon!