Help me keep my transplanted kidney

[JOANNWARD]

Hi, I am a transplant recipient from Orlando Florida Hospital Transplant Institute in Nov, 2011. I had good success, not great, but good. Within the last year, my kidney function has been dropping steadily, and I want to do all that I can to help keep my transplant. We had recently with the year 2017 moved to Alabama, and I cannot seem to get a lot of support or help from the nephrologists here.Any ideas or suggestions?

[Charlene_Coxhead]

Am sorry to here that your not getting the support you need as you mentioned it has been working well and you want that to long continue. I'm sorry I don't live the states but you really bed to push the doctors. Are you able to contact the team you had the transplant under as they may able to offer you a name of a doctor under the new state you are under.

All I can suggest is keeping a good health kidney diet, keep hydrated, keep blood pressure at a controlled level, if weight is a issue try and loss some. Have regular blood tests and do some exercise even if it's just walking to the shops.

I hope you get some answers don't let them fob you off

Charlene

[JOANNWARD in reply to Charlene_Coxhead]

Thanks Charlene. I did not think to try to go back to the team at Florida Hospital, but I will!!

[Charlene_Coxhead in reply to JOANNWARD]

Keep me posted I would like to hear that you get some positive support

[RUKIDNEYME]

Have they done a kidney biopsy?

[JOANNWARD in reply to RUKIDNEYME]

No, not on the transplant kidney yet.

[Legomegamind]

If the nephrologists arent willing to help or provide help then unfortunately they wasting your time. Looking around for other nephrologists.

[JOANNWARD in reply to Legomegamind]

I appreciate your reply. Unfortunately we have the Humana Medicare Advantage plan and their network of doctors. We have only one group of nephrologists to choose from in our plan network area. What a B___ch! When I was in Florida, I had a great nephrologist, and I was sorry to lose him, but maybe the answer is to try to have him intervene with the guy I have now. I thought about it, and it is worth a try.

[whattham in reply to JOANNWARD]

Try and stay with a group of doctors that use the same hospital. Hospital have all kind of doctors that are connected by hospital likely know who's who. My transplant hospital team know some of my doctors in my state. So they stay in contact if needed

[WYOAnne NKF Ambassador]

I would contact the nephrologist you liked in FL and see if he has a suggestion. I would also contact your transplant center in FL and ask for their help. Maybe they can contact the doctor you saw and make this whole situation a lot better. After All, the transplant center has all of your records.

Best of luck with all of this. You need a nephrologist that cares and you can trust. You can always go back to the transplant center for an appt and see if they can tell you what is going on. Then, have them contact your local nephrologist. I think that is what I would do.

[JOANNWARD]

THANKS, GREAT ADVICE!

[Bobbiereed NKF Ambassador]

Hi Joann--I have a couple idea's for you. It has to be tough moving to a different place and having to re-establish with all new doctors. I suggest you contact the NKF Cares Hotline. Ask them for the contact information to the local National Kidney Foundation office that serves the area where you live. Explain to the hotline person helping you that you need to find a reliable doctor willing to take on your case. The toll free number is: 1-855-653-2273.

Next--Contact the American Association of Kidney Patients (AAKP). They also have an excellent support staff and resources to help you. Explain your situation to them and ask if they have a local AAKP Ambassador in your area who can help you search out and find a reliable doctor. Their number is: 800-749-AAKP (2257)

Keep me posted on how things go. If you need more help, I am an Ambassador for the AAKP her in Pennsylvania and the Kidney Advocacy Committee Liaison in Pennsylvania for the National Kidney Foundation.