Your best traveling tips

Posted by jodeej @jodeej, Sep 21, 2018

My husband had his transplant July 7. We are doing a weekend getaway next weekend and I'm just wondering what things I need to remember besides not eating the hotel free hot breakfast and bring the sunscreen.
Thank you,
JoDee

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@jodeej

@rosemarya @gingerw @contentandwell when you stay at a hotel, do you use the ice in the ice machine?

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@jodeej I have only used it to keep something cold in the ice bucket. We often bring some cheese and grapes along and if there is not a fridge in the room I keep them cool in there. We often bring those along for car snacks too.
JK

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@gingerw

@rosemarya I watched It! What did you think of it? Great story, and Ken Burns always does a superb job.
Ginger

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@gingerw @rosemarya @contentandwell we watched it too. It was a great show and we learned so much. Mayo is truly a special place.
JoDee

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@jodeej

@gingerw @rosemarya @contentandwell we watched it too. It was a great show and we learned so much. Mayo is truly a special place.
JoDee

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@rosemarya @jodeej @gingerw I watched part of it while I was on my recumbent bike, recorded the rest. It was excellent, but I had a problem because I rely heavily on closed captioning when I watch TV and the closed captioning was the worst I have ever seen. It would start out and then when it should have continued it would leave me hanging until the next section. There were huge gaps. It's not my ability to hear sounds, it's that the comprehension gets muddled, so I was able to get some parts without having CC but not others.

I had no idea that it started as a Catholic hospital. Is there still a Catholic affiliation? I guess I should have realized that since part of it is St. Mary's Hospital, but my daughter almost went to St. Mary's Honors College in Maryland, and that's a state school, simply in St. Mary's county.

The Mayo family was amazing. My grandfather who was a doctor in Boston was similar to that, he actually started a charitable society. I think some of Mayo's practices have been adopted by other hospitals, like the doctors conferring with multiple departments. When I was in MGH pre-transplant with extremely low hematocrit and hemoglobin there would be a whole team of doctors who came in. If any of you ever watched the TV show, House, it was about a doctor who was a great diagnostician and had a team he worked with. I felt like I was on House when this troupe came in each day.
JK

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@gingerw

@rosemarya I watched It! What did you think of it? Great story, and Ken Burns always does a superb job.
Ginger

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Hi, @gingerw, I thoroughly enjoyed it. I sat in my jammies and settled for the evening. I rarely can sit thru a movie, much less a documentary. But with this film, I don't think that I moved. I needed some Kleenex handy as I wiped away a tear or two when I saw things that clearly related to my own 11 weeks in Rochester.
I think that Ken Burns caught the true spirit of Mayo. The title: Faith, Hope and Science
are perfect. I love how he combined the history/old photos with the modern era/research/technology with the patient/doctor testimonials.

The next morning as my husband and I were discussing it, we both recalled our first experience of Hope.
---I had been inactivated from the transplant list in mid Jan. 2009 due to possible cholangiocarcinoma, with unsuccessful attempts by my local transplant dept to collect a sample for biopsy. I had an appointment at Mayo in a few weeks, but I missed it because of acute kidney failure. I spent 5 days in ICU with no future except a short time in hospice care. My home transplant team contacted Mayo, and arrangements were made and I was flown to Rochester on a bitterly cold Fri night in late February of 2009.
I don't remember much except for the cold wind and some blowing snow as I was jostled from the plane to the ambulance for my ride to Mayo Methodist Hospital.
The next morning I awoke with my husband sitting at my side and a tall figure in a white coat standing at the foot of my bed with a chart or clipboard. The only words that I heard were, ..."I have looked over her chart and I don't see any reason that she can't have a transplant",...(based on the results of a biopsy when she is strong enough for that).
From possible Hospice Care to a statement of Hope - that is my Mayo Clinic experience. That is the film that I played over and over in my head until my transplant.

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@contentandwell we had a great trip! We saw a show and did some hiking. It was so relaxing and much needed. Eating was a struggle. The breakfast at the hotel had only a few items that Tim could safely eat. He did eat a wedge salad our last day there. I know it was a risk, but he only likes a few vegetables. I wasn't thinking and we got malts one day. It didn't even dawn on me to think about the machine bring clean until after we had eaten them. So, I worried for a few days about him possibly getting sick, but thankfully it turned out ok.
If you have any tips, I'd love to hear them!
Blessings,
JoDee

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@jodeej

@contentandwell we had a great trip! We saw a show and did some hiking. It was so relaxing and much needed. Eating was a struggle. The breakfast at the hotel had only a few items that Tim could safely eat. He did eat a wedge salad our last day there. I know it was a risk, but he only likes a few vegetables. I wasn't thinking and we got malts one day. It didn't even dawn on me to think about the machine bring clean until after we had eaten them. So, I worried for a few days about him possibly getting sick, but thankfully it turned out ok.
If you have any tips, I'd love to hear them!
Blessings,
JoDee

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@jodeej Sounds like you had fun, always a real spirit lifter. Right after my husband's transplant, we were very careful, and would often either pack our own food for on-the-road adventures, or shop carefully at the destination. Take your normal precautions, but stepped up a bit, seemed to work for us. He hasn't had any problems, and we still follow safe food guidelines two years later!
Ginger

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@gingerw

@jodeej Sounds like you had fun, always a real spirit lifter. Right after my husband's transplant, we were very careful, and would often either pack our own food for on-the-road adventures, or shop carefully at the destination. Take your normal precautions, but stepped up a bit, seemed to work for us. He hasn't had any problems, and we still follow safe food guidelines two years later!
Ginger

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@gingerw we packed fruit and some veggies along with some other snacks. We also took some drinks. We avoided the salad bars and didn't do the dinner cruise. It is really hard for us at times because we used to pick a restaurant by how much we liked the salad bar. We really miss that part of eating out.
Blessings,
JoDee

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