Are there any other pre-liver transplant caregivers out there?

@myson Staying connected in the Mayo Connect groups is most definitly doable. As for going to a group support meeting & meeting with a nutrionist it may be possible since you plan on being in Jacksonville a few days. Both of them are accomadating so they may be able to squeeze you in. A phone call to your choice of interest is a good start because they quite often can refer you to resources in the event they cannot accomadate you. Chances are good that you will get to do both. Hopefully all will go well with you & yours

@beckyjohnson So kind of you to make contact. I'm sure we will set this up for the end of June or so. I also want to check around for housing for our post transplant stay. Any recommendations there.

@myson when I 1st started participating in these group discussions I simply typed what I wanted to say which caused some confusion because people didn't know when I was responding to their posts. Then I was taught that any of us can make this clear by using the @whoeversename next to where it says "posted by" in our reply like I did with you. You may copy & paste the @anyonesname anywhere in your post. As for me I utilize both designated & generalized posting. Another thing I learned is to get involved in multiple group discussions because they are often interelated The group discussions I'm following are all "Transplant - Kidney" followed by Journey From the Donors Side, Evaluation What to Expect, Changes After Transplant to name a few. There is a list of discussions that you will see after you open the primary "Groups" title (I typed transplant) link that you choose. It is easier than it sounds.

@myson There are short term (6 mnth. & harder to find monthly, bimonthly & 3 month leases) leases you may be able to find through realtor & online residential listings. There are also vacation/ tourist rentals & extended stay hotels/ motels. Do not to forget to arrange for a tour with the Gabriel House, that may be another option during surgery & I think testing. Someone also pointed out that saving reciepts as a donor for tax purposes might be a good idea & some insurance policies provide reimbursements

@myson Good morning. Rosemary indicated that you might need some help orchestrating a trip down to Jacksonville. I was just down there myself yesterday. I live in Bluffton, S.C. near Hilton Head. It is an easy 2 1/2 hr drive from where I live. How can I help you?

@myson Physically attending a support group will do your son a world of good, and you as well. It should definitely help you all emotionally. Meeting others who have already walked that walk , (transplantees) will bolster his confidence in going through with the surgery. You won't meet a finer bunch of people than those that are grateful to have a second chance at life. I was considered for a double lung transplant two years ago; I was terrified to say the least. Transplanting lungs is the most fragile and least surviveable of transplant surgeries. I attended the support group at Mayo in JAX, and my fears were calmed. I met many survivors, some at the 11 and 13 yr mark. Those support meetings are all about hope, courage, and gratitude. I have since recovered to a point with my disease that I am no longer being considered for a transplant. I was put a 'deferred list' which means put on a back burner, but at the ready if trouble arises. If you are looking for the lung transplant support group at Mayo, they meet on Tuesdays at 1:00 in the Mayo building. They usually have a speaker in there for an hour and then a little social time afterwards.

@myson, There is usually a social worker at Mayo for every group of transplant. Where are you guys in the process of the liver transplant? If your son is in the pre-qualifying testing stage, they will introduce you to the social worker for him as well as a nutricianist. At least that was my experience when I went through the testing.

@myson I just had a member post to my page that they enjoyed staying at the Embassy Suites, will have to get back to you on the exact one. It was newer, so it was very nice. Wherever you stay down there; be sure to ask for a Mayo Clinic discount. Most hospitality places down there honor that.

@myson, You might want to look at the "Visiting Mayo Clinic" Group. There are member suggestions about all 3 Mayo Locations. Here is one specific to Jacksonville.
https://connect.mayoclinic.org/discussion/lodging-in-jacksonville-fl/
Rosemary

@myson, Here is some information for you.
Mayo Clinic's Campus in Florida -
https://www.mayoclinic.org/patient-visitor-guide/florida
And I found a link to Patient support groups. I copied the Lung Group information below.
Lung transplant support group
This is a support group for lung transplant patients and their caregivers.
Tuesdays
1 to 2 p.m.
Mayo Building, Room 2-002N
Information: 904-956-3206

I hope you and your husband will be able to work out plans for your visit. Tell us about it when you return!

Let me know if I can be of any help as you plan.
Rosemary