Post transplant neph visits

[SooMK]

Transplant recipients: How does your “local” nephrologist work with your Transplant Clinic? How often do you see your nephrologist versus how often do you go to see the Clinic nephrologist? How does your nephrologist work with other specialists and your GP? Do all nephrologists see transplant patients or does it depend on the neph?

I’m 5 years post transplant and think I need to find a local nephrologist. I’ve been being seen by the neph at the Clinic which is over 2 hours away. Most of my problems have been minor but it can be difficult for anyone to get hold of someone at the Clinic. For minor issues, or random questions, I can’t always get call backs or replies via their portal. Unless it’s an emergency, I am the liaison between specialists and the Clinic and it seems that things just get more confusing. This last visit I was told I don’t have to return to the Clinic for another year. I do get labs every 3 months. I’m thinking a local neph might see me more often and, if necessary, coordinate any issues with the Clinic.

Thank you.

[MooseMom]

Interesting question, one I've often had.

I have not seen my local neph (who referred me to UW-Madison in the first place, which is in another state) since I've had my transplant almost 7 years ago.

I used to get labs every month, a copy of which goes to my tx team and another copy which goes to my PCP who is in the same practice as my neph.  I doubt my PCP nor my local neph have ever even looked at them as they've been rather unremarkable.

I see my tx neph once a year.

I use my tx centers portal and have never really had an issue getting a timely reply.  In earlier times, it seemed that any concern I had would pop up on a Friday night.  I'd call the main number at the tx clinic, and they'd call the coordinator on call.  She'd always get back to me within 10 minutes.

I've never had a situation where my local neph (who may well be retired now for all I know!) or local PCP has had to coordinate anything with my transplant clinic (except for arranging referrals since I am on an HMO).  My PCP is great, but his office people and the people over at the HMO are AWFUL; it is getting more and more difficult to pry a referral from them for my annual clinic appointment.  For that reason, I have no interest in coordinating anything between my transplant clinic and my PCP.

[iolaire]

My center and old nephrologist practice is local, but when it was time to move off out of the center just after six month the nephrologist I used to have left the practice so I continued with the transplant nephrologist but via his normal practice.   Working with the transplant nephrologist has been great because he is more convenient than the old nephrologist practice and also he has a PA that is VERY good at communication - I've been able to email her with questions or requests and she addresses it quickly.  She is the one that leaves a VM or email with lab results and any changes.  Also since the nephrologist is part of the large heath system with the transplant team its been very convenient to get referrals to specialists and he talks over my case with other nephrologists who have experience with Lupus to the point were he doesn't feel I need to deal with a rheumatologist at my current state (stable with some higher than average inflammation).  I'm very happy with how things worked out but I would not want to have worked with the same transplant nephrologist via the clinic since as you have experienced the clinic is very busy and communication is poor. 

So my only recommendation is to see if your nephrologist has a private practice and if working with that office would be any better?

[SooMK]

Thanks for the replies.

The neph I see in NYC is just too far away and I'm pretty sure he doesn't have his own practice anyway. That would be ideal. I am probably over-reacting to a failure to get a reply via the portal. To be fair, I sent the question to the nurse practitioner at the clinic who had discussed the issue with me, not my neph. I think the neph has always gotten back to me.

It sounds like what I thought was standard practice--returning to the pre-transplant neph--isn't necessarily so. It could be that's what the clinic would like to happen. MooseMom and Iolaire, unlike you I don't need a referral to see a specialist but I find I don't know who is the best person to see for some problems. I was so freaked out when I tried to get treated for a UTI 2 years ago that I signed up with one of those direct care PCPs. It's expensive and so far I haven't had to see her except for physicals but it seems worth it just for peace of mind.

Iolaire and MooseMom, you have really put your finger on a big problem--bad/no communication in the offices of otherwise good doctors. My last PCP was fine but there were missed messages three times and that was another reason I looked elsewhere.

Thanks for your thoughts.

[iolaire]

Regarding referrals I should have clarified what I like. They are all part of “The GW Medical Faculty Associates” so all my medical information is in each groups computers. They call see all records which saves a ton of time on the initial interviews and random follow up. No longer do I have to write out all my medicines and medical history for each doctor. Obviously this is only something that comes with a large hospital and their associated doctors.

[Cupcake]

I was all set for living donor transplant at Northwestern; their plan was to have me follow in the transplant clinic for the first 6 months or so then return to local nephrologist. that made me a little nervous as I wanted the expertise of a big center backing him/me up for any problems.

As it turned out I received my transplant in St. Louis at Barnes-their plan is to follow me indefinitely; I am almost 6 months out and I think they plan to decrease frequency of labs from twice a month to once a month; visits are now every 4 months.The transplant coordinator/nurse will usually call about my labs; if she doesn't, I give her a few days and shoot her an email and she gets right back to me.I can review the labs on Barnes's portal, too.

I am considering contacting Northwestern to see if their transplant clinic would take me on. All my other specialists are there, its a little closer to home, and they have steroid free protocols--Barnes won't even discuss stopping the prednisone. I know the 5mg dose isn't much, but I already have osteopenia.

Best of luck, shop around and see if you can find a transplant center that seems more responsive.

[MooseMom]

I will add one new piece of information.

My local hospital has now been gobbled up by Northwestern.  Northwestern has a patient portal, also, and the last time I looked at my tx center's patient portal, I got a notification that I could link their portal to Northwestern's.  So, I am hoping that if I have to go to the ER here at what is now Northwestern, communication will be better as now my local records will automatically show my tx status and all of the bumph that goes with that.

[Deanne]

I haven't been out here for a long time. I'm 5 years post transplant. After 6 months, my care returned to my pre-transplant neph, and I went to the transplant clinic annually. Now that I've passed the 5 year mark with a healthy kidney, I only need to return to the tx clinic every two years. I see my pre-tx neph around every 4 months, but that schedule is flexible. I think I can go to every 6 months if I want to. I call my pre-tx clinic if I have any issues.

[SooMK]

That is one good thing about the gobbling up of doctors and hospitals by the big groups--all the information is shared. I don't have that and wish I did. Trying to remember to get records/labs from one doctor to another is an ongoing challenge. It's been valuable to know that there's different ways of handling post-transplant care.

Congrats Deanne for continuing to do so well. I think your arrangement sounds like what I had in mind.

Cupcake, I'd be interested to hear if you are able to switch transplant centers and if they would allow you to stop taking the prednisone.

Thanks everyone.

[MooseMom]

SookMK, I suppose that if you want an arrangement more like Deanne's, you could just ask for it!  In thinking about it, there is no real reason why someone who has had a tx for a number of years and has had no issues MUST have an annual appointment instead of a bi-annual checkup.  I see my annual appointment as an opportunity to sort of "check-in" and get some face time with my team.  It's really more for my benefit than for theirs.  As long as you make it clear that you are not being "non-compliant" and are having your labs done on a regular basis, I don't see why you can't arrange your clinic appointments as you see fit.

[Naynay99]

Hey.  I don’t really remember when I stopped getting checked at the tx center.  Maybe 2-3 years?  Maybe a yearly visit after that.  I don’t remember going after I finished high school.  I also saw a private practice pediatric nephrologist till college and since then have been with my current neph.  Until my labs got bad recently, I was seeing him every 3-4 months for the last 20 years or so.   Not sure if that is standard, but I don’t think I ever went longer than 4 mo without a checkup and blood work. 

He was the one that has adjusted my meds over the years to control bp, anemia, etc. I don’t have a PCP, and don’t need a referral to see a specialist. He has treated me for non kidney stuff too, like when I got strept or the flu or whatever.  Or referred me to other drs.  He is now an hour away so if it is an non kidney related emergency And I can’t get an appt I sometimes go to the local urgent care for treatment. 

I would expect that the first year after a second tx I would have to see the clinic drs a lot but that I would eventually go back to being primarily seen by my own nephrologist.  God help me when he retires!   

[gilders]

Probably not much help as I'm only just under a month post-transplant.

Firstly, transplant work-up, surgery and after care (short term and long term) is all done at the same hospital.

For the first month I am due 3 appointments/week, with bloods taken each time, mostly to check kidney function and the levels of anti-rejection meds in my blood. I see a post transplant specialist nurse on Mondays and Fridays and a transplant surgeon on a Wednesday.

If everything is going well, after a month, appointments drop to once a week.

I'm pleased that all my care is done at the same place as I have a few conditions and prefer to have people looking after me who know my history.