Transplant clinic

[sugabear]

My husband received his transplant in 2022. Today, his clinic said that when he hits three years, they were going to transition him to his primary nephrologist and no longer provide him services. I thought he stayed with the clinic indefinitely. What has everyone else’s experience been?

[LavenderRabbit]

Typically they transfer you back to a regular nephrologist to see on an ongoing basis. You would still see a transplant nephrologist once a year. You might want to clarify that with them.

[Eyak1971]

Medicare coverage usually ends about the same time if you are not already qualified due to age. I was fortunate that my transplant team and nephrologist was in the same practice. Yes that is common practice.

[sugabear in reply to Eyak1971]

That’s why I think the timing is interesting. They’re going to transition him out the same time his Medicare runs out. He has group insurance, too, but I could see this facility transitioning anyone out who’s going to lose Medicare. It’s all about money.

Good thing he has a primary nephrologist who can continue to manage his care. I just wonder about people who don’t have one. Also, it seems like everyone here is experiencing something different. I’ve seen people who have had transplants for years talk about visiting their transplant clinic regularly.

[Eyak1971 in reply to sugabear]

Sometimes it depends on the clinic and the doctor. Keep in mind the surgeon rarely has continued communication and passes the patient to a nephrologist on staff. More recently many centers are adding a 3 rd party for continued oversight of patients due to Medicare need for centers to provide good outcomes. My center has evergreen and I check in with them on a regular basis as to diet and treatment. I am about 5 years post transplant. And sad to say money always tells the story in Healthcare. It is usually the first question asked after what is your health problem. If it were not for medicare transplants would only happen for the rich. The medication alone would bankrupt any middle class family in a year or two.

[sugabear in reply to Eyak1971]

Oh, we haven’t seen the surgeon since the day of surgery. 😂

I feel like the clinic could’ve done a better job of explaining the timeline to us, but maybe they wait to ensure the patient has a good outcome.

[Eyak1971 in reply to sugabear]

Definitely outcomes are a top priority. That is why many centers only take certain patients who are younger with few morbidity issues. Thank God for centers who take their responsibilities to provide health for all.

[modernmusic in reply to sugabear]

If my surgeon walked into my living room I wouldn't recognize him. I've seen him once after the surgery and never since. I have a transplant coordinator whom I've seen a lot until now. I'm a year and a half out since my transplant and we have recently transitioned to me seeing my coordinator every 6 months and alternating with also seeing my regular nephrologist every 6 months so I'm seeing somebody 4 times/year. Bloodwork every 2 months still.

[ShyeLoverDoctor in reply to sugabear]

It’s not always about money. Transplant is highly specialized medicine. Transplant nephrologists are in short supply. They may need to make room for incoming patients and your husband is stable. My transplant nurse explained some of this.

[sugabear in reply to ShyeLoverDoctor]

I agree but I think this timing is about money. He is at a very active clinic, but three years falls right in line with Medicare. We live in an area where I’m sure there’s a high rate of uninsured people.

[MartyVA]

I also had a transplant in 2022. I have never seen a doctor at my transplant center only nurses and nurse practitioners. I was instructed to start seeing my local care team about a month post transplant. I currently see my nephrologist twice a year. I am seen by my transplant center every two months, but I also do blood work locally the months I am not seen in person by the transplant center. It sounds like I will be seen by my transplant center, at some point once a year for life.

[Mydaughtermyhero]

I will be at the 1 year mark on September 8 and my appointment with the transplant nephrologist that week will be the last one. Then I return to a regular nephrologist. This was made clear from the beginning.

[Tankjsl]

I am only 16 months post kidney transplant and I am seeing my regular nephrologist for everything but the actual transplant medications i. e. Myfortic & tacrolimus. I have never been told that there would be a time when I cannot contact the Transplant team. I am very fortunate that my regular nephrologist was trained at the same center where my Transplant team is located.

Hopefully all works out for you and simply don’t be afraid to ask the question of why they would not see you. That does not make sense to me.

best of luck to you

[Darlenia]

Our transplant center usually offers to transition their patients at the 2 year mark. But my hubby's transplant journey had a few hiccups so they continued to see him for another year. At this point, we were having quarterly visits (two with the center, two with our local nephrologist). This past June, at the 3 year mark, they again reviewed his labs and records and noticed he was on a very stable path. The nephrologist then offered him the choice to continue follow-ups with the center or to turn all appointments over to our local neph with the understanding if that neph saw anything alarming, his care would revert back to the center. My husband chose to have his care turned over to his personal neph (who started him on the path to that transplant). We both recognized that our very busy center has a higher mission - to focus on recovering kidneys and transplanting people, not really needing to deal with well visits. And, very important, we were more than ready to return to a more normal life. It was a "graduation day" for us. Yes, we're very comfortable seeing our local neph - he's is a familiar face (not revolving faces at the transplant center) and knows my husband very well. He's meticulous in arranging appointments and ordering/watching his labs. My husband's medications are now prescribed locally as well, but all medications can be ordered/shipped directly from the center's "special pharmacy" if that's what we prefer.

[GardnerADK]

Hello, my husband saw his local nephrologist and the transplant clinic often the first 5 yrs and then went to seeing transplant once a year. He sees his local every 3 months and does blood work the week prior. I have a feeling every clinic is different in this.

[ShyeLoverDoctor in reply to GardnerADK]

Yes every center is so different it’s not standardized at all. My center discharges you after one year. And of course every patient is different .

[Merlin_Way]

Sugar Bear, my understanding is that your blood labs guide their decisions somewhat. Three years is probably a good run to receive frequent attention from any doctor. I love my post-transplant doc at UMMC, and hope to keep her as long as possible. I hope your husband continues to do well.

[littlelinda50]

I am 5 years post op and still go to my transplant center every 6 months. I think most at 5 years is once a month but I have had things happen but no rejection that's why I am still at every 6 months. Now that I have cancer I might get changed to every 3 months.

[peregrin]

I'm almost five years post-transplant. I see each of my clinic nephrologist and regular nephrologist once a year. The clinic nephrologist and nurses are fully available to me between visits.

[Redbone55]

Good Morning! I have been post-transplant for 3 years now. This also happened to me at my last appointment, she stated that she feels that I should see my local Nephrologist, since my labs have been good the last 3/4 times that I had an appointment, I am currently seeing my local Nephrologist, but I am also still seeing my Transplant Nephrologist as well, just not as often. I am still in contact with my transplant team whenever I have any issues big or small. I would get clarity if you are still able to stay in contact with your Transplant Team, if this also makes you feel more comfortable. Good Luck and stay Healthy.