Bone Health After Transplant

That’s excellent @hello1234! I too am looking forward to a hopeful coordination of care. I get to do labs and see my transplant MD and my new rheumatologist in the same day! Very exciting.

Funny. I’ve been doing a bunch of research on patient navigator programs for coordinated care management. I’m writing a grant to seek funding for a homeless patient navigator program. I’ve decided that it would be nice if all hospitals offered such programs. It would make life for us patients so much better!

Happy New Year! 🤗

@hello1234, Being proactive about our care, is so important after our transplant when we move back home, and away from our Mayo base of care. I am grinning with delight to read that you took the advice and encouragement given in this discussion posted by @athenalee, and that you spoke with your transplant nurse who responded favorably to your request for a referral to an endocrinologist.

There are many of us, who like to shy away from making requests of our medical teams. Perhaps we don't want to be a bother, or feel that they are just too busy, or that we are simply not accustomed to doing that. Now that you have reached out of your comfort zone, how does it make you feel? How did you bring up the request when you were uncertain? What would you say to someone who is hesitant to reach out?

@rosemarya You hit the nail on the head!! 😊 I normally feel like I don't want to be a bother to my incredibly busy transplant team. I feel so grateful for them literally saving my life, I feel like I am being too greedy asking for one more thing. But after @athenalee encouraged me to reach out and just ask, I felt wonderful when my nurse told me it was not a problem. Stepping out of my comfort zone was definitely a positive thing! (My video consultation with the doctor is this coming Monday). The support, friendship, guidance and information that I receive on Connect each day has been invaluable to me. It feels like a family on Connect...my adopted transplant family!!! ❤❤❤

Always remember, the squeaky wheel gets the grease…no squeaking, no grease. It’s the same for us patients. Our transplant departments are vested in keeping us healthy, but they’re not likely to reach out to us, they have a whole flock of new transplant patients to tend to. But, if we “squeak” they’ll be happy to help! 😁

Hi Athenlee,

I was diagnosed with Osteoporosis six months after my kidney transplant that took place 12/15/22. Unfortunately I wasn't hospitalized in a large NYC hospital after my transplant when I was diagnosed with diverticulosis infection. I was in hopspital for three months. I also acquired a pelvic infection which I was treated for at the end of three months hospitalization.

I saw a orthopedic dr in NYC. After reviewing my MRI and Dexa scan I was diagnosed with osteoporosis. and two bulged disc. Dr want me to take Prolia shots. Heaven knows for. how long. I have heard some people remain on Prolia for years. This terrifies me.

After reading different website with patients having taken Prolia. OMG it scared me to death.

Drs now suggested a endocrinologist. I would like to find a specific endcrongologist in New Jersey who treats individuals who have had a kidney transplant. My Drs in NY want me to travel into NYC, IT's very expensive and NJ has to have specific drs who have treated kidney patients who have had a kidney transplant. Finding one is the key. Any help would be greatly appreciated. I even contacted Castle Connelly website and they could not provide this information.
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Would it be possible for anyone who has had a kidney transplant and taken medication for osteoporosis share their experience with the different kinds of medication they are taking and side effects. I understand everyone is different and no one will experience the same kinds of side effects. Thank you and much appreciate.