Badges (2)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (18)

Jun 4, 2018 · Transplant Evaluation - What to expect in Transplants

We are not at two Mayo's. We are at Jax only. Not sure where the confusion came in but we are only at the one.

Jun 4, 2018 · Transplant Evaluation - What to expect in Transplants

It worked out great. Because of being there all day, and some downtime between appointments, we brought jackets (it's cold in there), snacks, medications, crossword puzzle books, etc. and then also gives you somewhere to carry all those materials they are going to give you. Also, if you have appointments spread out with downtime in between, check with the schedulers at the particular clinic to see if they have cancellations, etc. We were able to get a few things moved so we could end out day earlier. In fact, the transplant surgeon bumped out appointment up because he saw how long our drive was and wanted to help get us out earlier (which he told us when we got there….we were very grateful since we had a 5 1/2 hour drive home).

Apr 18, 2018 · Lodging in Jacksonville, FL in Visiting Mayo Clinic

@windwalker We ended up changing our reservations to the Candlewood Suites on Belfort. I think it was either $75 or $79 per night. Great hotel, totally renovated rooms, clean and smelled so much better than the last place. Kitichenette with initial stock of coffee, s&p, paper towels, etc. They are extended stay so still only housekeeping once a week but that is fine. Nothing really around the hotel as far as restaurants, etc. No breafast but free coffee 24 hours, and they have a pantry where you can purchase cereal, frozen dinners, ice cream, etc. on the honor system. They also have a "lending" pantry if you want a crock pot, griddle, blender, etc. you can check those out through the front desk. Staff was great as well. We rested so much better there. The only problem I had was trying to get there with my GPS. With the construction coming out of downtown toward the beach, we ended up in a "not so good" neighborhood trying to find the hotel. Don't know how since it is directly off JTB Blvd –probably more my terrible directional incompetence. We plan to stay there next week as well (hopefully the end of our evaluation process unless they decide they want to remove a kidney stone found incidentally during ultrasound). May decide to stay there when we get "the call" if we are unable to get into Gabriel House. There are also several long-term apartment complexes for about the same price as well we may look into….Not really wanting a house I don't think.

Apr 18, 2018 · Lodging in Jacksonville, FL in Visiting Mayo Clinic

@windwalker Thank you for the info. We ended up staying at Candlewood Suites on Belfort this time. It was perfect. All the rooms have been upgraded, it smelled very nice, kitchenette, etc. Pleasant staff, and offered special rates for Mayo patients. Right next to JTB so easy access to Mayo.

Apr 12, 2018 · Transplant Evaluation - What to expect in Transplants

@dorifg – One thing I will do next time we go is bring a rolling case for everything. I carried a big bag that ended up being stuffed with all kinds of folders, paper, my husband's meds for the day, drinks, snacks, crossword puzzle books, etc. and it got really heavy. Next time we will bring a small rolling bag like a laptop case.

Apr 11, 2018 · Transplant Evaluation - What to expect in Transplants

@dorifg, We were at Mayo Jax recently. Some of the tests my husband was scheduled for he had had recently so the doctor cancelled them when we met with her. He had had a colonoscopy and EGD recently so they didn't repeat them. He, too, has no appetite and had lost a great deal of weight along with significant muscle wasting. He did well with the fasting for tests and, in fact, a couple of times the tech saw that he had another test the next day with the same prep so they went ahead and performed both tests. The staff is so great to work with and will accommodate as much as the possibly can. At Jax Mayo the cafeteria is also very well equipped for various diets so I feel that Phoenix will be too. They have the basic foods, but also have protein bars and drinks, low sodium choices, etc. The food was actually very good there and great variety. My husband, while ambulatory, was a bit slow moving and had a little HE a couple of days, but we never felt rushed by staff who all had great empathy. If you have any difficulties, they are very willing to help in any way they can. We were especially dreading the appointment with the psychiatrist since we are pretty private people and felt like we would be under and microscope, but we were made to feel very comfortable. We went into the evaluation blind to everything but were pleasantly surprised with how everything was handled. We did have some appointments that were spread out with a lot of downtime, but were able to rearrange some of them…but not all of them, but staff did their best to try to accommodate as much as they could. While it's not where we wanted to be, they made the experience has painless as possible were able to ease our minds. One other thing I was appreciative of was their candidness. There is no transparency, they will answer anything you ask them and explain anything you need to know. You will be fine!

Apr 9, 2018 · Transplant Evaluation - What to expect in Transplants

Your caregiver is required to be at the psychiatry appt and (I think) the social worker appt. It will tell you on the details of your schedule which ones they are required to attend. We stayed at the Extended Stay on Beach Blvd but cannot recommend it. Yes, it was cheap (a little over $400 for a week but then $60 a day for days less than a week. You do not get daily room service, just once a week, only 1 roll of toilet paper (or buy a roll for $1) Some people live here. Our room smelled like pets (they do allow them), our stove did not work (one of the reason we stayed there). It is only about 10-15 minutes from Mayo tho. We have additional appointments twice more this month and I have made reservations at Holiday Inn Jax Beach on Beach Blvd, about the same distance from Mayo. Our rate per nite there is $116.00, much more than where we are now, but well worth it. That rate is the Mayo patient rate according to the person I talked to at the reservations number. We've tried to get booked at the Gabriel House but no luck.

Apr 9, 2018 · Transplant Evaluation - What to expect in Transplants

We have been here a little over a week now. From the time we drove up to the doors, the staff (ALL of them!) have been nothing less than spectacular! The clinicians never seem in a hurry, always eager to hear any questions you have. The educational classes and materials are great. (I especially love the pharmacist who taught our class–and appreciated a little uplifting sense of humor from her). Most appointments were on time. We only had one we had to wait on and they did come out and apologize for the wait. I can say it is a very fully packed schedule and very tiring for both the patient and caregiver. Also, expect to have changes made to your schedule. We have some things taken off (colonoscopy and EGD since he had recent ones, thanks goodness!!!). But based on outcome of some tests/exams, we had additional appointments added (like we had a nutritional assessment added due to his muscle wasting/weight loss). Some of the appointments may be scheduled while you are there but some will require a return visit based on the scheduling. (All departments pretty much stay booked up….a good sign that people come if, if you ask me). We tried to reschedule a couple but were unable to do so since nothing was available but be sure to ask anyway in case there is a cancellation. Parking is a bit far away, but there is valet parking for $6.00 if you choose. I chose to walk since I needed the exercise but dropped hubs off at the door. There are plenty of staff at the door to assist and will get you a wheelchair, if needed. While we speak only English, I was impressed with seeing several non-english speaking patients who were provided interpreters from Mayo who walked with them to their appts and was their liaison between patient/staff. We are very happy with our choice of May Jax thus far!