Traveling with MDS

[Christina]

Hi everyone-
Please give me your thoughts on the following. Since my dad was diagnosed 2 years ago my parents haven’t gone any where or done anything. Is it fair to say that if his counts are OK and he’s feeling OK it would be reasonable to go on a trip? I would love to see them go somewhere and just relax together. This disease is putting quite a strain on everyone. Are there precautions to take on a plane etc. OR, is it really not the time to go any where? I will admitt my dad isn’t that comfortable leaving the vacinity of his doctors.

[Davea]

Christina,

Hi, my wife and I are going on a cruise in February. My regular Hemo. Dr. told me I shouldn’t go due to the risks involved. Another Hemo. DR. (BMT specialist) told me to go ahead. I’ve decided to go on the trip and take the following precautions. My platletts are only at 14000 so I’ll get a transfusion of them the day before I leave. I will also get 2 units of RBC transfused before I go. My WC is controlled by injections of Neupogen so I should be Ok. Being from Canada and travelling to the Carribean I will require copies of my prescriptions and a letter from my Dr. which will allow me to carry my drugs and syringes across the border.

[eve]

hi christina

can’t tell you from personal experience with my dad but my concern would be airplane travel as far as bacteria goes – an airplane is such a breeding ground for illness that even people without a compromised immune system sometimes have a problem – i can understand your dad not wanting to leave the comfort level he has at home with his doctors – maybe he should discuss the situation with them and see if they think it is a wise thing to do at this point

eve

[Christina]

Thank you for your replies. Dave have a great trip, relax and enjoy yourselves!
Eve, you are right…I will check with the docs.

[Suzanne]

I have been a lot of places-visiting my grandchildren for a few days-trips to the beach. Had no problems- but driving-not airplane. I would think a plane or cruise would be ok of his counts are ok. If the whites and neutrophils are low, he might consider wearing a mask on a plane. I understand the hesitance to be away but it also isn’t good to sit home and feel sick all the time.

[Naomi]

Hi Christine:
I took a trip with my daughter 2 years ago. We flew from Providence, RI to San Diego. Took a bus to Mexico and boarded a ship to Hawaii. After touring the islands, we flew back to Providence. It was a great trip and just made sure that I did not over do. The ships have wheel chairs for shore excursions if needed.
I went snorkeling, parasailing and a lot of other excursions.
Had a tx just before leaving and carried a letter from doc if needed.
Hope you can convince him to get out and enjoy a trip away from home.
Naomi

[Bill and Mary]

Hi Christine,

I just talked to a Dr. at the Hutch today about travel. He said that there is no reason why not. He thought getting a refil of RBCs might be a good idea, if the numbers and feelings indicatied. He did not think that masks, which I was told by my hemo to use, were worth using.

I would not drink anything except bottled water. This based on a recent NYT article that found drinking water contamination on a lot of planes.

Naomi’s idea of having a letter from the doc is a good one. I have a blank authorization from my Dr. for a CBC. I go into an ER and ask for a CBC, telling them I have MDS. You usually get a blank stare and they go consult the on-call Dr. who authorizes the CBC. The numbers usually tell the story. I have never had a problem getting a transfusion if I feel I need it.

What the heck, encourage them to go and have a good time. Act sensibly, wash their hands compulsively but try to forget this disease for a time.

Bill

[Jack_dup1]

I fly at least every other week for my job as a Field Service Engineer. I try to avoid crowds, wash my hands frequently. Now is cold season and it is impossible to avoid people coughing and sneezing. I’ve been thinking about wearing a mask, I just haven’t got to that point yet. I came home last week with a cold after being in San Jose for a week, next week Phoenix. My biggest worry is being away from home and getting ill.
Jack
Jack

[Suzanne]

Ny Ddr. too did not have strong feelings about the maskes. He always said to wear one if I wanted too.However the nurses were adamant and would not let me out of my room without one until My neutrophils were about 500.

[KATHY1]

Christina, My parents continued to drive to Florida every winter for about a month. She even gave herself her Procrit shots.

Kathy

[Author]

Posts