Holiday Tips

When you have CF and you go on holiday, there is so much more to think about. I absolutely hate packing/planning for holidays because of this reason! Here are some hints and tips for holidays I have picked up over the years.....

Take all medication/physio stuff/nebs in your hand luggage, your suitcase might get lost! I have never been questioned about medication in my bag. They once looked at my I-neb as it looks abit like a bomb on the scanner and they once put my nebuliser stuff through a vapour machine as they are liquid, I was informed I should bring the pharmacy labels with me for the nebuliser stuff due to them being liquid but that was it.

I'm managing OK with my weight at the moment and I always eat loads on holiday anyway so I didn't bother taking any supplements with me. I think if I was on overnight feeds etc i'd probably just manage without them for week or take oral supplements instead, but even that would cause packing/weight problems

Remember to take a clear bag to put your liquids in for the airport checks

Make sure you get a letter from your CF team that says you are fit to fly with/without oxygen and a letter asking customs to let you through with your medication

I use a Frio bag to keep my tobi and pulmozyme nebs cool whilst travelling, I got mine off Amazon and I think its an extra large size. This won't be good enough for the whole holiday, you need to make sure your hotel room has a fridge! However it's OK for a 1-2 days travelling

If you need oxygen on your flight keep checking they know you need oxygen when you check in, when you get on the plane, because I'm telling you, these airlines seem to be useless!

Remember to take some washing up liquid to wash your nebs with after use! I have yet to write to Fairy and suggest they make a travel sized washing up liquid...! What I tend to do is try to not end up taking a full bottle of washing up liquid that will bump the weight of my suitcase up!

Unless your hotel room has a cooker or kettle I have yet to find a way to sterilise my nebs whilst on holiday. I don't really fancy taking a steriliser with me so I just make sure they have a good boil before we go away and as soon as we get back

Always take lots of your food enzymes, god forbid you should lose them or run out, talk about spoiling your holiday!

For travel insurance quotes call JD Travel  they have always managed to find me a reasonable-ish quote...!

I always try to remember to take a list of all the medication I am on, just in case I end up in hospital etc!

Unless you have a kettle to boil water and then let cool down, doing your nasal rinse can be a pain too. I used bottled water and just put up with cold water shooting up my sinuses! Not the best but when options are limited what can you do?!

To mix up my movicol I saved a water bottle and shock it up in the bottle, due to lack of spoons. 

Take spare movicols/sennas (or whatever you use for constipation), you don't want to get blocked up due to dehydration/travel. I had such bad problems with this on holiday and nearly ran out of supplies even with my spares!  Also, this goes without saying but drink lots of water, this will help with your chest and bowels

Remember to take salt tablets, you can get a prescription from your CF team. People with CF loose lots of salt when they sweat and it needs replacing, otherwise you can feel ill

Take an emergency supple of antibiotics/steroids in case your chest is naughty, I also like to take some spare ventolin and hypertonic saline nebs. 

Doing physio whilst travelling is a right pain in the arse. It's not exactly something you can do in public. On the way home I had to miss my evening physio session as we checked out of our room at 11am but didn't fly until 9pm, I did my tobi on the plane but not my hypertonic saline as I knew this would make me cough up sputum which I am not willing to do on a plane in front of strangers. I knew i'd have to miss my evening physio so did my pulmozyme in the morning an hour before my morning session (I usually do it in the evening), I don't like to do my pulmozyme without doing some physio afterwards as it loosens everything up but then you are not coughing it up!When we went to Thailand for out honeymoon I managed to do physio in a medical room at Dubai airport, that's the only way I can see getting around not missing it.

I don't go on two week holidays, not only is it too much to pack/plan medication wise, I don't like going away for that long! 10 days max for me! Last time we went for 2 weeks was our honeymoon and I didn't take enough disks for my I-neb!

Which leads to my last tip. if you have an I-neb, remember to take enough disks with you....!!!! And don't forget your I-neb charger!! Also make sure you will have enough disks when you get home, those disks can take forever to arrive in the post, trust me!

If anyone else has any more tips feel fee to leave them in the comments!

CF Week

Today it is CF Week so I have been doing my best to try educate people about CF by posting blog posts on facebook everyday. A fair few people have looked at them (I can look how many people have viewed posts etc) so hopefully it has done some good. I'd like to arrange some kind of fundraiser one year but I'm not very good at stuff like that so wouldn't know where to start!


Yesterday I finished my IVs thank god! This course has been horrid and seemed to last forever! The headaches settled down slowly after the first week which was a massive relief but then my eyes really started playing up, so puffy, weepy and sore. I looked like some kind of drug addict with my red, baggy eyes! It got to the point where I couldn't see properly at times and I considered phoning the hospital as I wasn't sure if it was an allergic reaction, I'm sure it is but if it's not serious I tend to put up with it. Anti histamines do not help at all, neither goes putting lots of aqueous cream around them to help with the dryness. The only thing that seems to help a little is if I put some comfort eye drops in my eyes a few times a day. I think its the Tobramycin that causes it as they are worst on a night when it's going in me and the following morning.


On Wednesday I looked a right mess, my eyebrows desperately needed  waxing, my hair looked shocking, puffy red eyes and to top it off I woke up with a coldsore! Grrr! I got my hair done on Wednesday, finished my IVs yesterday so my eyes are looking better already and I got my eyebrows waxed today, the only remaining problem is the coldsore! At least I am feeling back to my normal self anyway!


My fev1 was 44%, my weight is 54kg and my sats were 95% so all is looking OK!


I had a fit to fly test about 3 weeks ago and failed miserably. My sats fell to about 85% when given oxygen for 20 minutes that would be the same as on a plane. Therefore I need extra oxygen on our flight to Italy, I've never needed oxygen for a short haul flight before so I'm a bit gutted really. Luckily Thompson who we are flying with provide free oxygen (we checked when booking just in case) and the form my Doctor needed to fill in was really simple. However the letter needs to be signed no more than a month before travel so they have said they can't accept it and I need another, so annoying! I've just changed the date on the letter and will send it again in a few weeks...! I've also sorted our travel insurance, the quote I got before was no longer valid as I needed oxygen on the flight and they wouldn't cover me anymore. Luckily the broker (Gill Noble) found another company for me and I also called Insurance Choice but the brokers quote was cheaper at £185 for Pete and I, so we went for that. The joys of having an illness and going on holiday!!

End of IVs

This two week course of IVs has been one of the most nicest (if that's possible) courses of IVs I've had in a long time. I have had few side effects and I actually feel like the IVs have worked for a change! I even went clothes shopping on Monday which I never do as it tires me out and makes me feel light headed, I got a new pair of jeans with my birthday gift voucher, a top (a Primark special for £4 haha!) and some birthday presents for my friends. I had to get size 8 jeans which was slightly strange as I don't think I have ever fitted into size 8 jeans, but the 10's were far too big and jeans always go baggy, all my size 10's I have are like that now and I'd like a pair that are actually tight on me, even my skinny jeans fresh from being washed hang off me at the moment.

The first week of my IVs I felt very tired and had afternoon naps, I also had a fair few headaches but this improved in the second week. I will definitely be asking for IV Aztreonam again as it's much more friendly than Ceftaz or Mero!

Today I ended my IVs and when it came to taking my needle out my needle was in my arm in a very awkward position, not how it entered my arm last week! I recall trying to reach something in my car the other day which involved twisting my arm around, never the best idea when there is a needle in the top of your arm. There was a popping sound and shot of pain through my port but it flushed fine so I didn't do anything about it, anyway this must have been when the needle repositioned. My arm looks in good condition, there are no sores, just flaky skin and it's slightly red, a massive improvement to how it used to react, so I think we have my allergies etc figured out now!

My weight is up to 54.1 kg which is good news and then I did my lung function test. The physio looked at the numbers and a big grin came on his face, he told me it was good and asked me what I thought it was. I guessed 46%, then he told me it was 50%!!!!!! I can't believe it, I nearly cried on the way home because I was so happy. I'm so relieved as I have being worried about my health over the past few months and doubts have crept in to my head about where it was going. I've wondered if Pete and I are doing the right thing trying to have a family when I have struggled especially with my weight as my weight is always stable so to lose this safety net was a big worry for me. I didn't discuss these feelings with anyone apart from Pete as I know people already have doubts about our plans, I feel like every time I have a rough patch people are judging how we will cope and I even judge myself and wonder if I am selfish.

Before and over Christmas when I was struggling to even bathe on my own or walk to the bathroom I decided to myself that if I didn't improve we would have to cancel our surrogacy plans, I really thought this could be the start of a totally different direction to the future I had planned. When you come out of the other side it's easy to think you were being dramatic and it was just a rough patch, but when it's actually happening you have no idea what the future holds. I'm not saying I thought I was dying, but I thought I might not regain my lung function and the damage could be permanent. So I am so happy that things are back on track and to get an fev1 of 50% is just amazing and illustrates how stable my health is overall.

Pete and I have booked a holiday to Italy! I am so excited! We are going to Sorrento for 10 days and I can't wait! It was quite difficult finding a suitable hotel within our price range as we needed something central as if I have to walk to and from the hotel it will just tire me and ruin the holiday especially since the area is very hilly and also I needed a room with a fridge for my medications. However we found somewhere eventually, I now need to have a flight test done and sort out some travel insurance. We are booked with Thompsons and they provide free oxygen on flights so if I do need oxygen it's not as big a problem and I have been quoted around £130 for insurance for Pete and I with a £350 excess. I was expecting it to be a lot higher due to my hospital stay so quite relieved I can still get covered for a reasonable'ish' price. I got this quote from Jd Travel , I've used them for years. However a few people with CF have recommended Insurance With so I'm going to give them a try as well.

Unexplainable Feelings

I feel like I'm struggling emotionally at the moment and I don't really know why. I have tried to cheer myself up by trying to keep busy but as soon as I'm on my own or doing my physio/nebuliser, I feel this sense pulling on my mind that it's all fake and underneath I am not as happy as I like to make everyone believe, does everyone feel like this?! I can't even explain what is wrong with me, for example on Sunday we'd had Pete's parents around for lunch and had a nice day. Then in the evening I started to do my physio and I just got so annoyed. It occurred to me that I spend an hour of every evening and morning doing my bloody physio, I can watch a whole TV programme doing physio, it doesn't seem a big deal but we started watching 'The Event' on catch up and I just thought to myself 'I'm still going to be doing my physio when this finishes' and I'm going to be doing this every night for the rest of my life. Then I started to imagine what it must be like to not be chained to a demanding treatment regime everyday and wonder how you are going to fit it in around everything. What it must be like to just be able to do things without consulting your doctor or feel like you are arranging a military operation. Anyway the result was that I had a massive cry which involved me telling Pete I just want to be normal, that's all I want.


It doesn't help that I have been off my IVs a week and I already have a cough and getting breathless doing small tasks, Pete even got annoyed with me last night as I kept waking him up coughing. I can't understand this coughing during the night, it's so unusual for me! A day can't go by where someone doesn't comment on my cough, it drives me absolutely crazy. I don't even know what I want people to do instead, I'd just rather not have a cough!


I don't want to ring the hospital, I can put up with it and I'm getting on with my everyday activities, is that what I'm supposed to do? After all I do have CF... or should I tell my team? Sometimes I forgot what is normal for me and what's not. Will they think I'm just paranoid or even worse put me on my IVs again or even worse, make me go into hospital?! If I think about even going into hospital these are the first thoughts that go through my head 'who will look after Alfie and Pete?' 'will my travel insurance still cover me?' 'people will judge me and think I shouldn't be trying to have a baby'. I don't feel unwell like I need to go into hospital but I haven't been in for years and it's only March and I've had 2 sets of IVs already, so I start to get all these random thoughts about what my CF team will suggest!


My friend suggested I ask to be referred to see the CF psychologist, she knows the team and says they are really nice. However I'm not depressed, I just feel abit fed up and I don't want it to be on my records, it's not like they can make my CF go away! She says it could help me though as I don't really tell people how I'm feeling as I'm embarrassed and I don't like people to worry about me. Also people don't understand as people seem to think that if you have a long term illness you just accept your life will be different and learn to deal with it, which I think I tend to do OK with most of the time. I'll see how I feel in a week or so, I usually have these little self pity moments and recover fine.


I actually feel guilty for feeling fed up, there isn't actually that much wrong with my life and much worse things happening in the world. I think all this surrogacy stuff (see my surrogacy blog) along with me not feeling great health wise at the moment is getting me down and I'm worried people especially in the surrogacy world will judge me (as I think some already have). I feel like I constantly have to prove I can cope and my CF is manageable. I just hate CF, it lurks everywhere and seems to taint everything I do no matter how much I try to not let it. In addition to this, my mum is on holiday and I wish she was here. Jeez I really am feeling pathetic today if I want my mummy....! I'm just glad we have got lots of trips and holidays coming up that are sure to cheer me up! If I have a plan or goal I usually feel better!


To end on a positive note after a downer post, here I am on Comic Relief ready to take donations!

first full day free of ivs!!

Well it was good not having to get up to do my iv's this morning, but I still ended getting up at 9.20 due to some builders outside. Your probably thinking 'wish I got to stay in bed until 9.20!', well haha, yes it was very nice!!

The meal last night was good, the first pub we went to wouldn't let babies in so we went to another. Our nephew was good all the way through the meal anyway, he hardly made a noise! He's getting quite big now and is smiling! He's really cute!! I want one but Pete won't let me!! :o(

Before the meal Pete's sister and mum came into the flat as his sister has never seen the flat, I used the opportunity to get Alfie used to having strangers in the house (Alfie has behavioural issues and we have seen a specialist who has given us a plan to follow...). He barked at them and they gave him some treats whilst looking away (apparently looking a a dog when they are barking is threatening) and eventually he calmed down abit which was good.

Now i've finished my iv's I need to start on my nebulised antibiotics again, I have some tobi left over so i'll use them first and then move onto promixin. I became resistant to promixin so had to move onto tobi, but now im sensitive to promixin again. Tobi is pretty expensive so unless it works better than promixin, they prefer you to have the promixin. Since i've been ill recently I don't think the tobi works that well for me! plus it makes you get a croaky voice and tastes gross, and it takes longer to go through. I took some pictures to illustrate how the nebuliser works, I use an i-neb, others with cf may use an e-flow but they all do the same thing but in different ways. So anyway, the tobi gets squirted into the chamber.

Then a lid goes on and then the mouth piece


Then I have to breath in and it squirts a mist into my mouth, I keep breathing in until it vibrates or for as long as I can. Each time I manage to breathe in until it vibrates, it makes me breathe in for abit longer the next time and keeps doing this, if I cant breathe in for that long the next time it reduces the time abit until it finds the right time for me. I keep doing this until it beeps and the smiley face comes up


Then with Tobi I have to do it again, overall it takes under 15 minutes if I can breathe in for a long time but tobi can make me cough and get tight chested. I've got my Dnase down to about 5 breathes which is great, it takes about 2 minutes! Once completed I take it apart, put the bits in the container, give it a rinse then stick it in the steriliser

I called the travel insurance today for when we go to Greece. Getting travel insurance to cover your cf is a NIGHTMARE! most people wont cover you or will for £100's. I managed to get insurance with a company for £86 for me and Pete for the year for worldwide cover as we went to Africa in April, I found this off someone on the cf forum, thank you! ps - people with cf do not use Endsleigh, they say they cover any pre-diagnosed condition but they don't cover cf even if they assure you that they do! Anyway back to my insurance I have, I had to sign a declaration saying I had not been in hospital for 12 months which at the time I hadn't. But since March I have been in hospital twice, so I had to call them to see if they would still cover me. I was so scared they would say no, they asked me like a million questions such as 'do I have blood in my sputum' (no), 'am I on antibiotics' (yes) etc, very specific to cf which makes me think they must have researched it very well!! Anyway they have agreed to cover me as I booked the holiday before I went into hospital. Phew! But if I book another holiday, i'm not sure if they will cover me. She did tell me, but I was so nervous I didn't take in everything she said. She's sending me it all in the post anyway. So that's a relief!

Met up with my friend today, we went to the pub for a light lunch and took Alfie so we sat outside. We then took Alfie for a walk an got an icecream as it was quite sunny. Then coming home it started raining and we had to stop and put the roof up on my car lol! I'm meeting my friends again tonight for a few drinks.

Alf with my friend in the car

Me eating my icecream! (not one of my best pictures!!)