Flying and sun

Hi everybody hope you all keeping well . Just wondering how long you waited after transplant before you went on holiday ? Also what about flying . What about the sun 🌞 to can you sit in it or not xxx

[Hidden]

Hi

I went away 7 months post transplant. Generally it's safe to fly after 6 months.

Sun exposure should be kept to a minimum due to the increased risk of skin cancer from immunosuppressants. I'd do a combined 60-90 minutes of sunbathing a day with plenty of sunscreen on. That's not advised either but you only live once 😎. I was really struggling with sleep for just over a year after transplant and found the time in the sun really helped in that respect. I was sleeping like a baby every night while away 😊.

[Hidden in reply to Hidden]

Or bless ya thanks for advice x

[Hidden in reply to Hidden]

Just wondering karls 2 month from operations how long does it take before the tremors stop its driving him mad 😠 xx

[Hidden in reply to Hidden]

Not sure love, it was never a huge problem for me. Give it a couple more months, hopefully it will settle once the body has adjusted to the medication a bit more and maybe the dosage will be decreased too x

[Hidden in reply to Hidden]

Thanks you . It’s all new to us at the moment . Are u on a lot of medication . Sorry for all the questions xx

[Hidden in reply to Hidden]

Don't be sorry, that's what we're here for 😊. I'm on 5mg Advagraf and 245mg Tenofovir once daily and antibody injections against Hep B every 2 weeks. Nothing like the 10 different medications I was on for the first couple of months following transplant 😁 x

[Hidden in reply to Hidden]

Oh hopefully his will drop . Thanks love x

[Danisleigh]

My son will be 6 months post transplant in August and I am sure he would be fine to fly only we used all of our annual leave when he had his surgery and when he was recovering so we are flying for the first time at Christmas.

[Hidden in reply to Danisleigh]

Oh how nice to go away at Christmas 🎄 xx thanks for reply x

[Gemma68]

I haven't had a transplant but even before that, like KLDN said you have to be VERY careful with the sun. Skin cancer is no joke and not something to trifle with. Please use the highest SPF if you do choose to go sit in the sun, if I have to go out I use factor 50. 🙂

[Hidden in reply to Gemma68]

Thanks for reply xx

[Hidden in reply to Hidden]

Hi

I agree with the others re the sun, be very careful. I'm not at transplant stage yet but have the people on this forum are very caring and knowledgeable too

Please take care love and hugs Lynne xxxx you

[1football]

Hi

I’ve been told to make factor 50 suncream my new best friend and to use it as part of my daily routine so when I wash in morning on it goes regardless of how sunny it is like others have said skin cancer is a big risk for us I get my suncream on prescription it’s apparently the best it’s called ultrasun ask your GP.

Huw

X

[Hidden in reply to 1football]

Hi love how are u doing . Karls a sod think because he’s never wore it in his life as spend a lot of years abroad and goes black just looking st the sun he doesn’t realize that he needs screen on now . He looks like he’s been in the Caribbean for a week lol 😂. . How are u doing the tremors are getting Karl down he really hates it . Also he said his scar has started to hurt ??? When are u back at clinic x

[1football in reply to Hidden]

Hiya,am exactly the same as Karl I’ve never used sun block in my life until now and hate it but had it drummed into me how it really has to be taken seriously 😒.

Reading this post is surreal as it’s like I wrote it tell Karl I have the same tremors just trying to write this text is bloody hard work and as for putting tooth paste on my tooth brush well it’s comedy gold😂at times I feel like am shaking all the way down my body.i was in clinic last Monday and coordinators rang yesterday and lowered my pred down to 5mg and my adoport down to 4mg morn an eve so all good I think you said Karl is on 3mg morn an eve?

We are back in clinic on 9th July I’ve just gone to 2 week appts. Karl isn’t alone in how he feels as I’ve noticed the more active I get ( I try and walk an extra 100 steps per day am now on 4000)the more I feel the scar it’s not a pain as such more like it’s stretching an burning but when it does I simply ease up an rest for a while.

Huw

X

[Hidden in reply to 1football]

Thanks huw will defiantly tell him . Yer he hates it so much can’t even do the crossword. We back at clinic next Wednesday will see what they say and will get him to read all this as well . Hope you have s nice day xx

[1football in reply to Hidden]

Hi

Was wondering how your both doing? Since last week my shakes have gone crazy despite having meds lowered last weds

[Hidden in reply to 1football]

Oh no 🤦‍♀️ bloody hell ! We went to appointment today and they maybe gonna take him off the prednisone as only on 5mg. Then lower tac and mycophenolate depending on bloods . He’s still got the shakes but not as much xxx

[1football in reply to Hidden]

That’s really good hope bloods allow this & his shakes continue to improve,I had tac reduced to 4mg x 2 last week as tac in blood was high and pred to 5mg but like I said tremors getting worse so spoke to mike hope today and going to clinic tomorrow as getting thumping headaches aswell.

X

[Hidden in reply to 1football]

Oh bless ya . Hope gets sorted they did say to Karl that he needs to drink 2.5lt of water a day which will help with tablets ?? Keep me informed x

[Hidden in reply to 1football]

Hi love how did u get on at clinic today

[1football in reply to Hidden]

Hi deb,

I didnt go in the end as felt better yesterday morning so rang coordinators told them how I felt and we agreed to wait untill my Monday appt there almost certain it’s the tac as am still on a fairly high dose and it can take a while for the blood to adjust to any drop in dosage.hows Karl is he coping in this heat? Am finding I can’t do as much walking at Mo as get to hot out there drinking loads a aswell

X

[Hidden in reply to 1football]

Oh that’s good glad u feeling a bit better . He’s doing ok they have just cut tac to 2mg twice day and stopped the predistone . He’s still shaking but not as bad . Doctor did say it’s the tac . Other than that he’s doing ok . X

[Kimlescam]

Hi

My husband had his transplant 29 Nov 2017 and we went on a cruise on 27 May almost 6 months to the day. Our surgeon gave him the go ahead as we had booked this before he agreed to even go on the list.

She told us no sunbathing and to avoid the sun wherever possible and use the highest factor possible, wear a hat etc.

We didn't think it would be too hot at that time of year but it was 30 degrees in Hamburg and 32 in Oslo so he wore a hat light clothes with long sleeves and plenty of sunscreen and he was fine.

He still has the tremors after 6 months and currently finding it difficult to eat, drink but he is alive and we had a marvellous holiday so really can't complain.

Good luck if you decide to go and have a great time.

Kim xx

[Hidden in reply to Kimlescam]

Thanks Kim yer we want to go away next April on a cruise wiv kids . Xxx

[Kimlescam in reply to Hidden]

Brilliant our 16 year old loved it so we are going again in October never thought I would like it but loved it - go for it xxx

[Isabelle2 in reply to Kimlescam]

I only have slight tremor on ring finger 🤔! But was txed a yr ago. Only had third degree of tremor for about 8 mths. Take high advagraf 6.5 and 2 x myfortic 360 daily.

[Hidden in reply to Isabelle2]

He’s on tacrilimus (adoport) 3ml on morning and same on night also mycophenolate 1000mg on morning and same on night . Plus prednisone 5mg on morning then co trimoxazole 1 Monday Wednesday and Friday xx

[Teri8672 in reply to Kimlescam]

I’m hearing a lot about skin cancer are we able to get it after transplant? Is it something to be scared of after post transplant

[AyrshireK in reply to Teri8672]

There is an increased risk of skin cancers post transplant due to immune suppressant medication, it just means taking extra precautions in the sun as others are mentioning - hats, high quality sun creams, avoiding sun where possible.

[Isabelle2 in reply to Teri8672]

Hi

I think if we are sensible and don’t go in for sun worshipping but use a high factor cream then I think we should be ok. And have regular check ups by a dermatologist (here in France it’s annually).

[Isabelle2]

Hi

Didn’t ask opinion of docs but returned to uk flying to settle daughter at uni (short flight 1h 30) 10 wks after. Just stayed 3 days. Just put sunscreen on, 50, before leaving house. Should be part of our DAILY ROUTINES even when cloudy.

[Adelou]

Hubby has also been told to make factor 50 his nest friend in the sun we are coming up to 7 weeks post tx this weekend. Was taken off steroids & anti fungal medication this week... You, bit had his envasrus increased as was a bit low, potassium now in normal range & minimal tremors l. He has been doing a lot of cooking (chef) his tremors can cause cramp in the thumb which he finds annoying but it's getting better. He had been tired the last few days but I think it's to do with the heat as well.

[Hidden in reply to Adelou]

Oh bless him xx

[dizzime]

I waited one year and loved it when i went. Plenty of sun tan cream though you can never over do it. Went swimming in the sea, loads of walking along the front. Been every year since then and i am off again next week.

I am nearly five years now pro transplant and still here lol. Enjoy yourself when you go. X 🌞🌞

[Hidden in reply to dizzime]

Thank you my darling glad your having fun x

[Hidden]

Get him to try Skin defence Multi-Protection Essence SPF50 from the Body Shop for face and neck. It's instantly absorbed, non greasy and smells great. For the arms and legs I use Clinique Virtu-Oil Body Mist SPF 30. It's not an SPF50 but I found the other creams before really greasy and leaving white streaks on my car armrests.

[Hidden]

Good morning. definitely check with the medical team as to whether it is safe to fly, it may depend on how long the flight is and also the destination - whether there are extra health risks eg with potentially contaminated water. Check about vaccinations too - some cannot be given post transplant as they may contain live viruses. Also - if you are going away make sure you have plenty of your immunosupressant medication - some in the hand luggage as well as the hold luggage in case hold luggage goes missing. Good idea to have documentation with you as well with regard to transplant and medication. Of course adequate travel insurance is also very necessary. Your transplant coordinators should be able to answer a lot of your questions too.

Best wishes

[Hidden in reply to Hidden]

Thank you 🙏🏾 xx

[Hidden in reply to Hidden]

I agree with the admin regarding travel insurance and taking enough medication. Last thing you'd want is being stuck somewhere and running out of immunosuppressants 😥. I'd stick to Europe if I were you. The longest flight time is around 4 hours and if something were to go wrong, you wouldn't be too far from home. Also if Karl has the European health card, any unplanned hospital visits would likely be covered without needing to deal with insurance.

I really wanted to go back to the Maldives last year to celebrate my new life but my better half would have none of it, too big a risk to take so I had to settle for Greece 😊 x

[Litimag]

It's also worth noting that you get sunblock on prescription post-transplant, that's how seriously they take the risk.

[Hidden in reply to Litimag]

That’s brilliant x

[X19Dave]

Hi as the others said 6 Months is good, we contacted the hospital where she had her transplant told them we were going away on holiday and they gave us some sunscreen we did have to buy more.

Use factor 50 my wife jumps between out in the sun and under shade get up early and get beds under one of the sunshades and pull out when you want sun as someone said you only live once better to enjoy you life and it be a bit shorter than be bored shitless and live in your front room

Use australian sun screen lives up to what it says it does unlike a lot of UK stuff

Dave

[Hidden in reply to X19Dave]

Cheers dave x

[manxonia]

I never knew u got free sun screen post transplant,it that on prescription from a doctor?

[1football in reply to manxonia]

Hi, most GPs will prescribe it mine does I say most because as I’ve heard on here that some are reluctant (cost maybe?)