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Mon, Jan 21 7:56am · This and That and Talk - My Transplant in Transplants

@gaylea1. Prayers for a productive procedure.

Tue, Jan 22 7:36am · Just wondering...sometimes after the call, it doesn't work out? in Transplants

@jeanne5009 It is advertised as a Marriott property. So convenient for very early tests but no place for anyone with respiratory issues (or anything else). It was very expensive — appalling.

Tue, Jan 22 7:34am · Just wondering...sometimes after the call, it doesn't work out? in Transplants

@keggebraaten So happy to hear that this place will be demolished/replaced. I knew it wasn't a matter of just housekeeping; so much needed replaced. We did rent an apartment for 3 months which was wonderful (Ocean Park).

Wed, Jan 16 8:47am · Just wondering...sometimes after the call, it doesn't work out? in Transplants

@jeanne5009 The Mayo Inn that is connected to the Mayo Clinic. Not the hotel that is disconnected. Room 211 specifically. If they wish to check me, they can pull out the nightstand on the right side of the bed that is to the right when you enter the room. There is no denying. And get this…..we brought our son 8 days after surgery to this room and beginning with the first night there was no hot water for 3 nights. I had to boil water on the stove for cleaning our bodies, etc. I was just about hysterical with worry.

Tue, Jan 15 8:39am · Just wondering...sometimes after the call, it doesn't work out? in Transplants

@hansonca03. Good morning from South Carolina. My son did receive double lung November. He is doing great and just sent us home. At 10 weeks he is driving and desires more independence. We love it but still worry all the time. I understand the fear when spirometer readings go down. He now has a fungal infection. Have you had to deal with that? The meds for just that are very expensive.
He has 3 girls, 12 and under. They are doing so good dealing with the separation plus anxiety and look forward to having him home.
The drs and staff are so amazing. It has been a real learning experience.
I am curious about the first 2 yrs. Please feel free to share with me any time. Thank you @rosemarya.

Sun, Jan 13 10:39am · Just wondering...sometimes after the call, it doesn't work out? in Transplants

@jeanne5009 There is a Hampton Inn one exit south off 202 (JAX Beaches, Marsh Landing). You cannot miss it after you exit. Also, for 10 weeks we have rented an apartment and furniture at Ocean Park. No carpeting in formal areas so easy to mop up the dust. Screened porches, better appliances including washer/dryer. Pool if you need it and gym. Good staff. They do 3 month rentals.

Sat, Jan 12 7:07am · Just wondering...sometimes after the call, it doesn't work out? in Transplants

There have already been so many bronchs. All tests come back good, which is great. There is an issue with the left "connection" being weak and needing ballooning…which they may have to stent. So, every week a bronch is scheduled but can be deleted as long as his daily spirometer tests stay good. There is so much to do every day — forever. God bless him. We were so nervous because he began coughing more and just didn't sound good. Turns out to either be medication or most recently this weak connection. So scary.
If there's one recommendation I can make to anyone coming to Jacksonville for a lengthy stay … Avoid the Mayo Inn. The rooms are filthy. Needs shut down and renovated. The filth is shocking.

Fri, Jan 11 9:48am · Just wondering...sometimes after the call, it doesn't work out? in Transplants

Sharing the news. Our son had a double lung transplant early November. What an amazing experience for all of the family. He is doing great. In fact, us caregivers came home yesterday. He wishes to handle things on his own. (You can only live with your parents so long!). When bronchs are scheduled, we will drive back to him to escort him for this procedure. He has been so strong. 10 weeks post surgery and he is self sufficient and DRIVING. God is great……all the time. We pray and honor his Donor constantly. The staff at Mayo are the best (in the world) and we appreciate them and will forever.