Cleveland Clinic

[Donaldson0007]

Any Cleveland clinic patients? Wondering about your experiences with contact with the clinic, or your care team - return phone calls or emails? Does anyone struggle with not getting return phone calls or email from your care team?

[WYOAnne NKF Ambassador]

I don't live in Ohio but had a referral to a clinic at Cleveland Clinic. I flew there and was only there for a few days. They managed to scheduled all the tests that were needed in the time I was there. They sent all of the info that was needed for my doctor back home.

My medical team here has been good about getting back to me. The medical system has an email system where I can "portal" the doctor directly. The doctor has 24 hours to respond. If it is anything emergent I call the clinic and the nurse returns my call. This is for both my PCP and my nephrologist

[Donaldson0007 in reply to WYOAnne]

Thanks. I wonder if perhaps I take my condition too seriously? At 36 mos post should it just be hands off by the care team? They just read monthly labs and adjust meds if needed and that is it? I have countless emails and phones calls that have gone unreturned over the course of several months regarding side effects, weird labs readings, and I was even hospitalized twice and let them know and got no return contact. My nurse at the time notified me that she was laving the clinic in Sept., and did not know who would be taking over my case, and to date I have never received formal notice from the clinic, nor a new nurse assigned. Very disheartening.

[WYOAnne NKF Ambassador in reply to Donaldson0007]

WOW! That doesn't sound right! I am 19+ years post transplant and I have a transplant coordinator assigned to me (U of WI transplant). She always gets back to me in 24 hours. If it is after hours and is something serious there is a coordinator on call and I get a call back within an hour or two.

To me, any problem you have after a transplant is serious. You don't want to reject your transplant or have some other problem that could lead to a more serious issue. If it were me, I would call the transplant clinic and get the "low down." If you have a concern or a problem, find out who they want you to call? Ask too, how soon can you expect a call back when you do call? Tell them it is unacceptable that you never hear back from anyone! Remember this is your right to get an answer. This is your health and you LIFE they are fooling around with! I would be very upset!!!!

[Donaldson0007 in reply to WYOAnne]

Wow, 19 yrs post. Congratulations! So it does get better then? I will stop getting viruses, side effects from meds and crying while I sort the countless pills that keep me alive? Staying alive is a REAL job!

I will try the clinic again but cannot get a real person on the phone and if I do they defer to someone else and I never hear back. Short of writing a letter to the Director Im not sure what avenue to take. :/

[WYOAnne NKF Ambassador in reply to Donaldson0007]

Maybe that is what you need to do! That really is lousy follow-up service. Please be an advocate for your self and write that letter to the Director. This is your LIFE and your KIDNEY!

If you still don't get any satisfaction, make an appt with the head of the transplant clinic. It's probably a doctor and let him know how dissatisfied you are with after-care. So, unacceptable when I think of my after care.

I had severe edema when my husband and I traveled to the island of St. Lucia in 2015....16 years post transplant. Through email I told my transplant coordinator what was going on. She actually reached me on my cell and gave me instructions to go the ER in that country in less that 12 hours. When back to US had an appt at the transplant center 2 weeks later.

If all else fails, I would make an appt with a nephrologist in your area. Maybe he would be willing to do follow-up care.

I would not ignore this!!!! Makes me glad that I did not have my transplant there. Both at U of WI transplant and U of CO (since I now live in WY) they have assigned me a coordinator. If that coordinator leaves, I get a letter on who my new coordinator is. So, I have a coordinator to call at U of WI and one at U of CO.

Let me know how this goes. I care!

[JaneCarter in reply to Donaldson0007]

I can certainly understand your frustration...and to realize the CC is considered a top notch facility . I also had exemplary after care from UWis and still depend on my Transplant Coordinator after 4 years. They are always on top of my condition. Every hospital has a patient relations department. You might want them to help you get what you need. Good luck.

[marcyc NKF Peer Mentor NKF Ambassador in reply to Donaldson0007]

So sorry to hear this. I donated to my husband 4 years ago. Ohio State Wexner Med Center. We don’t need much from the transplant team now but they always answer email in My Chart promptly and call if they see any lab blip. We see our private Nephrologist every 6 mo and transplant Nephrologist every 6 mo. I am in hospital Adminstration at another system. I would advise that you ask to speak with the transplant program manager to clarify expectations. Better safe than sorry if you have ? Best of luck.

[Bonnet8]

My CC experience has been awesome so far. My surgery was the middle of November 2018 at the CC in Florida. I do not live there though. My coordinator and doctor, both, contact me if there needs to be a med change. If I need to, I can call , fax, or email them. I have to return for my 6 month checkup in Florida in about a month. I am also fortunate to have my nephrologist and my transplant dr in my home state involved in all of this. I have access to them also.

I would definitely contact the head if the transplant team and tell them of your dissatisfaction. Good luck 🍀