Not long to go and boy am I still scared?: In precisely... - NRAS

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Not long to go and boy am I still scared?

DandyLad profile image
16 Replies

In precisely 2 weeks my partner and I will set off on our holiday of a lifetime. We're going to Los Angeles and then onto San Francisco. 3 weeks we will be there and I will have an entire pharmacy with me so nor worries there. What is worrying me is that I have fluid retention in both legs. My left has had it for some time but it is a fairly new thing for my right leg. Even though I have seen one of my Consultants I cannot give my mind a sence of calm.

Has anyone out there been on a long flight with RA and fluid retention? Or does anyone know about this kind of thing. I have to make this trip because if I don't go now I won't go and that will not be fair for my loving partner/carer/my all and I won't get to see that beautiful Golden Gate Bridge. All of you advise and help will be gratefully received.

Thank you

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DandyLad profile image
DandyLad
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16 Replies
sylvi profile image
sylvi

First off i am looking forward to hearing and seeing all about your wonderful trip. Have you got flight socks. If you haven't go to your chemist and get some,while your there ask them about flying and get some advice from there. Lastly you have a lovely time.xxx

petalnumber2 profile image
petalnumber2

Hi there, what a wonderful trip to look forward to.

I understand everything you are saying, because my husband suffers with fluid retention particularly in his legs. We have always enjoyed our travels abroad and we did fly to Spain quite regularly to stay with friends when his legs were swollen with fluid.To be honest flying didn't help the situation, but it soon settled down within a couple of days.

My husband is diabetic and his kidneys were not working very well at the time, but he so wanted to go. Now he is on dialysis and it's a bit more difficult, but he still wants to holiday abroad. It's not a problem to set up dialysis while abroad, but he's way past flying, so we are considering saving for a cruise, (some cruises are set up with dialysis machine's). Everyone needs something to aim for and look forward to particularly if health is deteriorating.

I have no idea how bad your fluid retention is or how long your flight will be, but I do know that if it is possible for you to go, you should definately go and enjoy it with your partner, Particularly if your consultant has given you the go ahead.

P.S. I've not travelled any distance since having RA, so someone else will probably offer some advice from that point of view. I hope you go and have a lovely time. All the best June x

watson3 profile image
watson3

What a wonderful trip. It's always great to have something to look forward too.

Long haul flights, I always wear flight socks, walk in the aisle in the plane. I generally remove my shoes and wear some light weight slippers. Drink plenty of water, no alcohol.

Pay for extra leg room, and if you need assistance to and from the plane book in advance.

On arrival rest with your legs higher than your heart.

Cool compresses on your ankles help remove stubborn fluid. Don't have bath or shower water too hot.

Check out with any good pharmacy when you buy your flight socks. Some pharmacies have written instructions for frequent fliers.

Have a wonderful time with you partner.

Remember to post some pictures of the lovely bridge.

Carole

DandyLad profile image
DandyLad

Thank you Carol. Your comment has made feel so much better and I will most definitely take on board what you have said. I am sure that we will have a wonderful time, it's just been our 15th anniversary so this trip is a holiday to each other. We also know that this will be last major overseas trip so we are going to make the most of every single minute. As for the bridge, well it would take hours to relate the emotions I have, so many friends have gone before me and so many are now not with us - I hope that this trip will bring them closer to me.

Thank you again Carol, you have been very helpfull.

HI, Can I add to Carole, reply when we flew to the Caribbean we were advised to do that along with flexing the ankles when sitting. To do this put whole of foot on the floor, then move your toes as though you are standing on tip toes, this flexes the calf muscles, also then march in the sitting position, you both end up laughing as it looks funny. Do you like Celery, if so that is a good way to help get rid of fluid retention, I know it's not the same as durectic tablets, but it does help.

Have a good journey and enjoy your trip you deserve it. xxx

minka profile image
minka

all i can add is some time ago i whent to amsterdam for new year and i was a bit wheel chair bound at the time with this thing again

i got in touch with the flight people and they bent over backwards cos i dont know weather you have been to amsterdam or not but hell the terminals are miles away

some one sorted a ride out at other end etc and waw i cant tell you how grateful i was not to miss my holiday so if you need assistance just ask them and it all happens

Hi,

I could not believe it when I saw your question.

Admittedly about 12 years ago now, but my husband and I did exactly the same trip. I have very long term RA with loads of joint replacements, and too get fluid retention in legs.

Just keep your legs up as much as poss, on the plane keep standing up, and moving around if you can, and exercise the ankles, also keep off the booze! I make quite a lot of long distance trips even up to last Christmas, and still am managing it. We had the most marvellous time, the weather on the west coast especially Los Angeles is great for arthritics, and I totally fell in love with San Francisco. You most definitely will get to see the Golden Gate Bridge. Trust me, as soon as you get seated in the plane all your worries and fears, will literally fly out the window!

Jennyx

Ps Dont forget to keep your meds, in your hand baggage, and have that trip of a lifetime.

DandyLad profile image
DandyLad

Jenny, you were the one person that I was hoping I would hear from. Some one who has done this before. I so want to do this for my partner who has give up so much to care for me. He is now my full time carer. This trip is a gift to each other for our 15th anniversary so you can see why I have to make this trip. Not only that I do want to go and as long as I can keep on dotting my i's and crossing my t's I will be fine. So you might see even more ridiculous questions from DandyLad and if you can, could you answer? My partner does not want to drive in LA so was it easy to get around, I have hired wheelchairs for both cities but how is it getting from a to b. We are flying in Premium Economy and Virgin are providing assistance, omniserve will help us get from the door of terminal 3 to check in, have I left anything out? Anyway, I won't keep you but just to Thank You again.

in reply to DandyLad

Have you got a letter from your doctor to say the reason for taking all the medication it will help when going through checkin/out.

in reply to DandyLad

hi again,

as someone who panics about everything, before having a holiday, ofter to the point, of it risking to spoil everything, i can only say, that once flying, i leave it all behind. one thing i get on a plane ( cannot tolerate flight socks and wear very loose socks and clothes) apart from swollen ankles, is cramps, but as i said previosly, try to move around a little. virgin will definitely be helpful, wished we had used them, we went on united airlines. have used both virgin and ba to hong kong many times, and have always been looked after, always tell everyone you have difficulties, there is always someone who'll help. Premium economy, makes a huge difference and worth every bit of extra money. we flew between la and san francisco, with no probs. feel free to ask anything, to help put your mind at ease.

jennyx

in reply to

ps as u mention u use a wheelchair, la will not be a problem, but san fransisco is very steep, do u mind me asking which hotel u are using, we syayed at the westin st francis. at that time, we used grey tours to sight see, but i am sure that your hotel concierge will be able to help with transport side of things.

jennyx

DandyLad profile image
DandyLad in reply to

We are staying in an apartment at Hollywood and Vine, it has 24 hour porterage so we are sure that they will be able to assist us.

lynn-bel profile image
lynn-bel

Hi - what a lovely way to celebrate 15 yrs. We have been married 15 yrs this year as well.

I've done this journey 3 times since having RA - as said above, I stood up and moved around as much as possible and the socks would be a great idea. My first trip the GP gave me a shot in the hip that made me feel great for 6 weeks so I felt good for the whole flight. We went on Air France and they were the first airline to show video films of exercises you can do in your seats which we all did and it was great. Ask advice from your GP and believe me, you will be fine.

I lived in SF for 18 years, so am very envious of you visiting my other "home" - it's a beautiful city and the surrounding areas are unique. SF itself can be quite chilly in the city so make sure you take something warm to put on just in case. Once outside the city it gets a lot warmer. (The city traps moisture from the Pacific which can turn into a cool and sometimes foggy climate). When I lived outside the city I would have to put on and then take off a thick cardigan when I came in to work and went home - temps would vary as much as 30 degrees F. in the summer!

Driving in LA, I've only done once and wouldnt do it again as I found it a bit scarey even though I learned to drive over there. I cant give much help on getting around LA without a car as I havent been there very often and it was only to Disneyland! I did drive a lot down the coast and back to visit Big Sur and Carmel and all points in between.

You can get around SF just fine on public transport and as far as I can remember they are very clued up about providing for disabilities.

I found my RA was a lot better when I was there - due to the warmth and dry climate in part. Also, having a relaxing, happy holiday with no stress was a big help.

Will you be in a wheelchair the whole time? I ask, because walking across the Golden Gate is a lovely thing to do if the weather is good. Lots of hills in the city of course but you probably are aware of that.

It is a great place for eating as well - every nationality of food you can imagine.

Do try to get to Golden Gate Park - it extends all the way to the beach in the city and is a beautiful place.

Oh, I envy you.

Don't worry about the flight - keep moving as much as you can and see if your GP will give you a steriod jab like I had - it really helped me.

ENJOY - HAVE FUN, TAKE LOADS OF PHOTOS AND LET US SEE SOME WHEN YOU GET BACK.

xx

DandyLad profile image
DandyLad

Hello LynnBell - thank you for your comments, very much appreciated, as I am all of the comments that I have received. I have checked and re-checked and checked again on every aspect of this trip. My GP will be getting a visit and I know will be very helpful.

I will not be walking anywhere as I am in a wheelchair constantly but I am sure the trip across the bridge will be wonderful and I am sure once there will enjoy the whole holiday.

pauluk60 profile image
pauluk60

hi dandy i have water retention in legs only i can think to do get packed up early as poss and get legs up you must wear socks whilst in flight if poss keep moving feet legs any little movement go to toilet a lot just move legs have nice time you lucky sod not jelouse

Rubyroo1 profile image
Rubyroo1

I can't comment on flying, as I haven't done it since being diagnosed, but I always pop my feet up the wall and lie down on a bed, when and if I am able to - seems to help, not sure I could manage this now or not ?!.

LA - most people drive and things are pretty spread out, the farmers market is great, has a wonderful food court area - farmersmarketla.com and we loved Santa Monica, its quite compact so easy to see most of it.

LA a little odd, but great to see Chinese Theatre, Rodeo Drive, Celebs houses on a bus tour.

San Francisco is wonderful, would go back in a heartbeat even with this RA, Alcatraz ( you need to book !) is brilliant as well as Golden Gate Bridge and the massive park. Oh and if you fancy the trams and are able to get on - don't get on at the first stops, the drivers have to leave space for some people getting on stops further down the line, so never take a full tram, if you go a few stops down from the first one you should get on and wont have to wait in a long queue.

Hope you have a fab time.

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