Who do you ask for non-medical transplant questions?

1) Call the social worker, explain the lack of return calls from your coordinator, and ask for a new coordinator. Waiting weeks for a return call is unacceptable.

2) Also ask your social worker about support groups. I know Jacksonville has a Liver/Liver-Kidney support group for patients & caregivers that meets via Zoom once a week on Tuesdays, and another caregivers group that meets via Zoom another day. Whichever campus you are at, ask about their support group offerings, and if they don't have one that works for you, ask about getting info for another campus' group.

Thank you.

@phrederica -When I was placed on the transplant list, I was notified right away be a phone call (in person at my reactivation to list). I also received a letter stating that I was on the UNOS list. And I was scheduled for an appointment with the transplant department.

What were you and he told to expect during the evaluation? Was there mention of an appointment?
I am on the road currently and will check in tonight when I get home. ❤️

@phrederica, I am a liver and kidney transplant recipient and hve located this information that I want to share with you. I encourage you to read thru the conversations to get a feeling for what other transplant caregivers have already shared.

Blog article:
- What to Expect as a Transplant Caregiver
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/
Here is a conversation among members in the transplant support group:
- Transplant Caregiver Advice: Got Tips to Share?
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
@phrederica - I am concerned about your current situation. It is obvious that you are very concerned, confused, and frightened. I can certainly understand because you say that he is to weak to call. If this a sudden onset decline, his doctors need to be alerted. When is his next appointment?

Hi

Your main contact in the hospital is your co.ordinator.
I am surprised why they dont return your calls, very unusual.
If this persists you may have to look for another hospital for better service.
Liver damage is serious business.

All the best

@phrederica, Have you been able to get any information from your friend's transplant department, yet? Wht did they have to say about his weakness?

I had the same worry once my husband was listed. I asked our coordinator and looked online for information. But, when the call did come, what I found was he really didn't need anything but to get to the facility when they told him to. Manage your expectations and try to stay calm. The first call they told us the liver wouldn't be there for a while and to wait for another call (since we were only 30 min away). Unfortunately, due to weather issues, they couldn't get the donor liver to AZ and had to cancel the transplant. A few days later, we got a second call, about 10:00 pm. We were told to come ASAP.

1) Plan how you are going to get to the hospital, i.e drive and leave your car in the lot; call a cab; have someone drive you. Remember, it could be in the middle of the night, you will be anxious and maybe not really awake so have a plan.
2) Keep a list of his medications updated with the times he took his last doses. Bring this with you.
3) He is not going to need clothes or anything else for a day or two. I would suggest not bringing anything for him, unless you aren't going to be able to go back to get things like a bathrobe or slippers in a couple of days.
4) You are going to need a few things for yourself. It is going to be long day for you. Wear comfortable clothes, bring any medications you need to take. I brought a large purse and included a small sponge bag with a few things to do a quick wash up. Bring your wallet, phone, charger, tablet, books, etc. Also, a bottle of water and protein bar.

Again, manage expectations. I am sure every facility is different but for us, the night we were called we were given instructions on what door to go to, who to ask for etc. But before 'the call' you might want to call the general hospital number and ask about their guest rules. Mayo Clinic Phoenix had very strict rules on how many where allowed in for one patient. After the operation they also had rules regarding visiting time. I was not even allowed into the building lobby until visiting time. Each morning there was a line up outside hospital waiting to being allowed in, regardless of the weather. I am not complaining, just explaining. I did see some people who loudly complained about this and others who were very disappointed that they couldn't bring more people in to see the patient. Things may be different now but it is good to know what to expect.

What you are explaining is so different what we experienced at the Mayo Clinic in Phoenix. Is it possible you have not been listed as having been given authorization to speak about your loved ones medical condition and HIPA laws are an issue?

Also, it is strange that there has not been a written confirmation of being listed.

My impression is that the caregiver's role is more then taking care of the patient, it is being their ambassador. I was told that how I demonstrated my ability to be a strong caregiver did have some influence in the selection process.

Lastly, when my husband became so weak he couldn't/wouldn't do simple things such as making a phone call, I had him into the ER at the facility where his transplant team was. Not just to make sure he was getting the medical treatment he needed but to allow the transplant team to see just how sick he truly had become, regardless of the meld scores developed from his weekly blood draws. That was when his wonderful doctor told me to get him to another transplant team.

Good luck and know you are not alone, even if it feels like it sometimes.

@phrederica - I work with the doctors and nurses at Mayo Clinic in Rochester, MN. If your loved on is a patient at Mayo, you can send us an email and I am happy to answer your questions or find the right contact person for you. You can email me at transplant-rst@mayo.edu. If they are a patient at another facility, I would call, ask who you can speak to about your loved one's situation, and if you haven't already done so, ask about a form for the patient to fill out so the team can speak to you about their care. It may be that the team doesn't have authorization from the patient to speak with you. Even though you are the caregiver, they still need to have a signed paper from the patient to talk with you about their care. I am happy to help further either here, or by email, if I can. Best wishes to you!

I feel your pain and wish you all the best in your journey. We are having the same experience unfortunately. My advice is to contact any member of his care team who responds to see if they can help connect you or get you information, or ask to speak to the nurse supervisor about the coordinator responsiveness situation. Some of the message threads stop accepting replies after a few days, so if all else fails, call the main transplant program line and explain the situation and see if they can escalate to the RN supervisor. Also definitely make sure there's a release of info on file for you so you can coordinate (or call) on behalf of your husband.

My son is in the (excruciatingly long) process of waiting to get listed at Mayo AZ. He has been in the evaluation phase going on 4 months. Granted there are some additional tests/steps he needed to take after his on site eval in January which I totally respect, but we've had the same lack of coordination/responsiveness experience with his coordinator RN. Either portal messages never returned or he gets messages back that are either illegible, riddled with typos, inaccurately depict medical details of his case, or leave questions partially (or at times, fully) unanswered. In his care notes, there are screenshots of internal IMs across the team, one where she remarks "maybe this will make him be quiet" in response to some questions he was asking about follow up tests, which frankly leaves me a little speechless. I didn't realize getting a patient to "be quiet" was the objective.

I happen to be both the patients mother and living (paired) donor, and my donor coordinator is phenomenal - sped me through the process, calls back almost instantly with even the most trivial question. I was approved as a donor in 60 days whereas we are still waiting for a clear status on my son's case and when he will be presented to committee.

Anyway, I found the Mayo program to be good in the beginning and thorough - there's a lot of educational resources, zoom calls, etc. for designated caregivers that help a lot but unfortunately if you have a not so great coordinator steering your case, the entire process becomes almost traumatic given the gravity of the situation you're already in and actively dealing with.

I'm sorry you are going through this and prayers up for you and your family.

Here is a quick one-page guide for transplant patients and caregivers about who to call in what situations.

Who to call https://kmtprodikrncsa.z14.web.core.windows.net/patient-education/transplantwhotocallinterimdraft.pdf