Traveling question

[KWJ]

Has anyone out there who is transfusion dependent managed to do any traveling?? My dad has progressed to AML so he was sent home from the Hutch last week. The docs are telling him there is nothing more to do, he would not survive the induction chemo I guess. So my parents would like to go somewhere warm. Any thoughts on traveling…Can he fly?? I know the risk of infection is bad so just wondering. I thought they could go somewhere warm and then get dialed in at the local hospital for transfusions. But any other ideas would be appreciated. Thanks.

[patti]

KWJ,

I have been wondering this week how your dad was doing. I’m sorry to hear about his progression to AML. That has got to be really hard after hoping for a transplant.

Part of your question depends on how far apart your dad’s transfusions are. In the beginning when my MIL’s transfusions were 10-12 weeks apart we took 3 weeks and went to Yellowstone in our motorhome. At the time they had told us she only had just a few months left and we wanted her to see some things.

Since then, we’ve travelled very little. We have tried. It’s mainly that we find even driving in a motorhome where she can rest on a bed all she wants, etc. that she just gets too tired. However, I think that it’s having 3 little kids bouncing around that made that travel hard for her. About the furthest we’ve been able to get her is Astoria (don’t think that’s where you had in mind!).

Right now she is 2-3 weeks between transfusions and it’s almost impossible for us to travel. However, if it were just her and us (no kids) I think we could do it (not by motorhome). If you have a specific destination and have a doctor you can connect with specifically (because ER is NOT where you want to get his care) then you might be able to wing it. Do you have family anywhere where they want to go? Perhaps their doctor (with a phone call ahead) would be willing to step in and help if you provide a good bulk of information ahead of time. Also, how long would they want to be gone. Months? Just weeks? I guess that makes a difference because it’s exhausting to travel for a few weeks for healthy people and usually requires at least a week to recover after the “vacation.” I do know that ANY stress or excess exhaustion my MIL has shortens her time between transfusions for some reason. I do not understand why but this is consistent for her. So if they’re thinking to snowbird this winter somewhere, that might not be so bad.

Obviously, flying poses infection risks but maybe if he wears a mask it would be okay. And, you would want congency plans in case he should get very sick wherever they go and not be able to return home. I’m giving you a ton of variables here because I don’t have much info on how far the travel is, time away, etc. That would all matter for me if I was planning on taking my MIL somewhere.

Hope this helps. I’m sorry again to hear about your dad. I don’t know if they gave him a prognosis but keep in mind my MIL has had AML for over a year and just taking care of herself has staved it off. Not easily, but it has.

Take care.

Patti

[KWJ]

Thanks Patti. He has platelets every few days, reds once a week. I was thinking Arizona because we have family there and the Mayo clinic is right down the road. Maybe we could they would have some more options for him??? I am grasping at straws at this point!

You know what we learned at the Hutch – they don’t recommend the mask, they say it does very little to deter bugs. They say just wash hands, wash, wash! So he actually went out for dinner while he was there. Here he did not like to because he was embarassed about the mask! So every place has different rules! His doc here says wear it!

Thanks for you reply. I appreciate any info.

[SimonChai]

Hi, KWJ:

I am so sorry about your dad.

As someone who loves to travel but hasn’t been able to do much since my transplant in April, I wanted to throw in my two cents about your question.

I think it sounds great to go somewhere warm where you have family. You have to assess the risk, of couse, but you can do things to minimize the problems.

What I did when flying back from Seattle to DC after my transplant was 1) used extra miles to fly first class where one has more space to get away from sneezing, infectious travelers 2) booked my flights for the least-busy times of the week; 3) boarded plane last — and deplaned first– to keep away from crowds; 4) used lots of sanitizer and 5) never drank any nonbottled water on a plane. There are probably other precautions you can take–maybe other folks can chime in. I was extremely nervous about flying but did not get sick. Oh, and even though Fred Hutch docs said to forget a mask, I did use one part of the time

Hope your dad gets to go to AZ.

Best,
Simon

[gemloyear]

KWJ, We did take several trips while my husband was ill. We took 2 after he was dx with AML in a conversion van with a bed.My daughter did all the driving and we stopped at hotels on the way.It was his wish to visit grand children and his brother and sisters.His Dr.’s approved it and gave us orders for labs and treatments while we were away.We took oxygen and his nebulizer along. He received 2 units of blood before we left.If he does decide to travel he will need to take all of his records, Ins. cards,prescriptions and meds.Lists of all Dr.’s names, where treated and phone #’s . Carry plenty of water and beverages. After the first trip he was admitted to the hospital with DVT on the day back. On our last trip he was admitted to the hospital in N.C. on our last day there, extending our stay for an extra week. He received royal treatment at the Univ. of Carolina Medical Center ER. It took all of 5 min. to be admitted to ICU when he was asked why are you here? Aml and pneumonia.It was not easy,but anything is possible if one wants it badly enough. Tell your Dad to go for it.
Good Luck,Ellie

[Jerry]

KWJ …
I am going for a transfusion today, one Monday, another Tuesday and then Debbie and I are going to New York for the Heisman Awards weekend on Wednesday … my Hgb should be up in the 11 range and I will have strength to do it … but will still wheelchair in the airports … Then in early January we are doing the same routine before flying (first class) to Maui for 12 days … it is a pain in the butt, but I refuse to totally give in to this as long as I have the strength … also, my current bad problem is very low platelets and serious bruising … so platelet transfusions are in order too … we have the names of Drs in both NYC and Maui … hope this helps a bit … good luck …
Jerry

[Arlene]

Hi KWJ,
My husband and I travel to Phoenix,AZ last winter and he was able to get a platelet transfusion at the Good Sam Hospital. We did make the arrangements prior to leaving. They have a BMT Unit where they are very familar with MDS/AA – we can give you a name if you need it.

Arlene

[eve]

hi jerry

while you are in ny if you need any help feel free to contact me -e -mail me and i will give you my cell number

also – you are going to love maui – we were there early this year – it is paradise on earth

good luck

eve

[Jimbob]

I think that one should do what ever they want without wearing themselves out, espcially if it can help to make good memories for them and their loved ones.

I did travel by motorhome and also by plane. Just before leaving, I had labs and receivec any needed transfusions. I had arranged ahead of time with the doc from the BMT clinic to get transfusions from a former collegue, if needed, at the destinations. I also took an Alaskan cruise. That was actually more tiring than the other trips and I needed to rest almost every other day.

Jim

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