Sophie gets some new and improved lungs!

Sophie received her double lung transplant yesterday! She has being living in hospital for weeks and weeks as she was too ill to come home, I'm so happy she has got her call and got those new lungs. She wasn't waiting too long either which is also great! I hope everyone who needs a transplant doesn't have to wait years to get that chance at a better life, all it needs is more people to sign up to be organ donors. I'm thinking of her lots today with a big smile on my face, however there is also that worry as the new few days will be really important, I know she is strong enough to get through them though!

Wee, Blood and Poo plus Other Things Too..!

I can't believe I finished my IVs over a week ago and haven't updated on here, bad Gemma!

Finished my IV's last Monday, my lung function was up slightly at 43% although it was all a mess really. When I started my IVs my lung function was 38% but then when I ended IVs the figures didn't match and the physio discovered that when I started my IVs I'd been put into the system as male! Males should hold more air in their lungs than females so when my percentage was worked out, it was lower than it actually was, it was in fact 41% at the start of my IVs.

I had lots of blood taken as they did my annual blood assessments. I had to fast from 9pm the night before, why when you can't eat do you want to eat everything?! They took about 30 tubes of blood, they test for everything such as if my blood clots properly, my vitamin levels, iron levels etc. So that was needle number one in my arm (they can't take the blood from my port for some reason). I then had to drink a pint of the one of the worst drinks in the world, its basically glucose and it makes me want to be sick. Even worse you have to drink it within 5 minutes, just thinking about it is making me feel sick! Then you wait an hour and they take some blood from you. So this was needle number two, apart from the vein wouldn't bled back so she had to try somewhere else, so that's needle number 3 and in my wrist which is nice and boney so not the most pleasant place for blood taking. Then you wait another hour and they take some more blood, so needle number 4 in my other wrist. Needles don't even bother me that much anymore to be honest, the little ones for blood are only a prick, I don't even mind big ones that much if they are going in my arm, there are worse things in life. I'm not sure how I'd feel about having needles in other areas though! After this blood test, you can finally eat!! This test is to check you are not diabetic, its called a glucose tolerance test and I got my letter today to say it came back fine and I don't need to be tested for another year. Yeay! I also had a bone scan whilst on my IVs and I got a letter the other day saying my bone density has slightly improved since my last scan, so that's good news!

I also had a chat with the Doctor about my bladder problems, I have two problems really. I go to the loo far too much, up to six-seven times during the night and many more during the day. I also have stress incontinence, this is a polite way of saying I sometimes wee when I am coughing hard. It's not nice, its embarrassing, even talking about it to a physio and doctor, I think that's why they have a nice name for it! It's very common in CF though and they have started asking patients about it more often as they know they are too embarrassed to bring it up. The doctor is not sure if my two problems are related or not, if I have stress incontinence this means I go to the toilet often to try prevent it, so before I do my physio, before I go out anywhere etc. This could mean my bladder has reduced in size and therefore I need to go to the toilet more often. The stress incontinence could also be irritating my bladder. Or I could have a bladder problem that I need to see a specialist about.

I have a leaflet with some exercises to do, that was fun practising doing them with the physio...! They are exercises to try and strengthen my pelvic floor muscles, so that when I cough I won't have a problem! If they don't help then they will refer me to a specialist. However now I know I should be going to the toilet less, I have been doing so and I think I am already improving slightly. I keep forgetting to do the exercises but try to remember, 4-6 times a day is a lot to remember amongst everything else!

Here are the exercises for those of you too afraid to ask your CF team!

Type 1 -Basic exercise, can be done in any position

-Squeeze around the back passage as if trying to stop wind escaping, at the same time squeeze in front as if trying to stop the flow of urine
-You should feel a squeeze and lift, a drawing feeling inside - this is a pelvic floor contraction
-Hold this squeeze and lift for a few seconds (up top 10) then relax, repeat a few times (up to 10)

Type 2 - Quick contraction

-Do the same squeeze and lift, but relax immediately
-Allow a few seconds for the muscle to relax completely then repeat up to 10 times

You must do both types 4-6 times a day.

Do not exercise by stopping the flow of urine in midstream; this can affect the normal working of the bladder.

Bladder Advice - Aim to empty your bladder no more than 7 times during the day and once at night, avoid going to the toilet 'just in case'

Since I finished my IVs I haven't felt back to my normal self to be honest, I'm still tired and very breathless at times. Yesterday was terrible, however I have had some problems with my nebuliser as the company are idiots and don't send me disks in time (that you need for the I-neb to work) and I have had to miss my nebulisers. Luckily a CF friend saved me (thanks Woody!) and posted me a disk to keep me going and I now have the disks from the company after ringing up and having a 'talk' with them. I also still have constipation, I've had it on and off now for about 4 weeks. I can't seem to shift it (literally haha), every time I reduce my movicol dose to my usual dose it comes back and I have to up my dose again. I don't think this is helping with how I feel as it makes you feel so sluggish and bloated and even sick at times. I think I'm going to have a higher dose for another week and then try and reduce it slowly again. I can't decide if it's worse to become reliant on movicol or to become blocked up!

I went swimming last week and managed 22 lengths, so was pleased with myself. But haven't felt up to it this week, I'll go to yoga tomorrow and hopefully next week I'll feel up to swimming again!

Sorry if this post has being too informative about particular areas, but at the end of the day this is a CF blog and people with CF have problems with practically every part of their body. Most of these issues are not suitable for small talk... if you don't have CF and are reading this, be grateful it's not you who has to describe your poo to a doctor, talk about your toilet habits with them or inspect your sputum with the physio. For people with CF it's quite normal and required, so I guess we become accustomed to it!

Happy Yorkshire Day!

Ah smelly wee, constipation, dry itchy skin, sore, crusty eyes, wanting to sleep all the time, thrush, daily headaches and sweaty nights, that right it's IV time! One week in and the tiredness is slowly reducing after me basically hibernating for a week and the other side effects are going up now the drugs are well and truly into my body.

I fell asleep one afternoon last week and seriously I could not wake up, I was actually laid on the sofa thinking 'Gemma you need to wake up, you are covered in sweat and you need to make tea' and I tried to open my eyes and they wouldn't open, it was like they were made of lead. So I went back to sleep and tried again, and again and after about 4 attempts I finally opened them and realised I'd slept for about 4 hours. I've slept like a log every single night, even Pete's snoring hasn't bothered me, but I've woken up at 5.30am every morning which is rather convenient as I put my IVs on at around 6am. I've then slept again until about 10am.

I've got a headache every single day, mid afternoon time, in fact I'm probably due one now. I got a lovely one yesterday that only went this morning once I'd been awake an hour or so. Yes I am taking pain killers and sometimes it gets rid of it, sometimes it doesn't.

I also realised I have constipation on Saturday after thinking I was just getting fat over several days. I had stomach ache on Saturday night and then Pete said something or other about toilets and that's when I put two and two together and realised the problem! After a few movicols I'm feeling less fat now!

So yes IVs are upon me and I have one week left now of the joys they bring, then I can return to normality were my pee doesn't stink like cats wee, I can wear makeup on my eyes and I can sleep without waking in a pool of sweat.

On the plus side, the cold seems to have buggered off and I'm coughing a lot less, so objective achieved! I'm also eating like a horse (where does this saying come from? Do horses eat a lot?) which will keep the dietitian and Asda happy..!

Its Yorkshire Day today so Happy Yorkshire Day to all you lads and lasses!
Here are a few Yorkshire words for you: ginnel, lug, larking, reeks, kegs and my very own word I created 'wang', oh and apparently 'foisty' is a Yorkshire word but I think Pete is lying!

4 Months Lucky

Oh dear, how can things go wrong so quickly?!

Last Thursday I started with a headache that decided it was going to stay until Sunday, so I was taking pain killers religiously to keep it under control. We took our nephew to LegoLand at the Trafford Centre on the Friday and had a great time, here are some pictures:

On Saturday night we went out for a meal with some friends we have made at Surrogacy UK which was really nice, we haven't seen anyone for awhile due to a lack of socials so it was nice to have a catch up. Then on Sunday Pete was as the cricket all day and I just had a relaxing day as I'd had a busy week and just wanted to get some rest!

On Monday morning I woke up and felt like someone had punched my face, my whole face was throbbing, my nose, around my eyes, the top of my head, it was horrible! I called the hospital and told the Doctor I thought it was my sinuses as I'd had a headache for 4 days and now my face was throbbing. He agreed to post me a prescription for Amoxicillin since my chest was OK for the minute but to call if my chest started to become a problem.

By Wednesday (prescription still hadn't arrived, they send them 2nd class!) I was not feeling good at all, chest aching, lack of energy, runny nose, coughing lots, sweating during the night, having problems sleeping, I've had to sleep propped up the last two nights just so that I can breathe properly and I've taken kalms to help me sleep. On Monday night I was hallucinating and hardly got any sleep, it was so scary! I saw a big dog on the bed, a spider dangling from the ceiling onto the bed, at one point I thought Pete was just laid there starring at me, he wasn't at all, he had his back to me! Another time I thought he had all rags in his hair, then I saw the room was full of leaves and at one point the light in the room was flashing. I've never experienced anything like it! I think its the Voriconazole, as I started that on Sunday and it says it is one of the side effects, I've never had it like that before though!

So surprise surprise I am starting IVs on Monday, its the earliest they could fit me in, wish I was starting earlier to be honest, Monday seems ages away! I've had to cancel my mentoring session this week that I volunteer as at Scope and I also had to cancel my meeting to start up the Scope Mentoring blog again. I'm just sat around not doing much, yesterday I had a bath instead of a shower as I felt too tired to shower, I wore my tracksuit bottoms, a sure sign I'm feeling bad! I had to go to Tesco to get some food and it was raining very heavily, no surprises that the disabled spaces were taken by people without stickers, always happens when it rains! Coughed my guts up walking around the shop, at least people get out of my way... was drenched by the time I got home. Bet I looked a right sight, never mind....!!

I've gone 4 months without needing IVs, so I've done well, my average is 3 months. So I can't complain, bring on the IVs!

PS - I have been having problems leaving comments on other peoples blogs, so if you are having the same problem, try unticking the 'save my details' box

Wonderland

On Saturday it was Pete's birthday, he is now the same age as me again. I don't like that few months gap where I am older than him! I'd already bought Pete some clothes for our holiday back in May as part of his birthday present so he wasn't expecting anything from me, however I got him some surprise tickets to go see Jack Whitehall (a comedian) in November so think he was pleased!

On Saturday night we went to someone else's birthday party, it was fancy dress, Alice in Wonderland theme or wear a funny hat. I went as Alice as Tori lent me her outfit which is currently getting disinfected to return back to her. If you remember, Tori got a lung transplant last year in May and I don't want to give her any of my infections, so I am cleaning the outfit with Vanish oxi hygiene which claims to kill 99.9% of bacteria, it's in the washing machine as I speak after having a soak for an hour. Pete was boring and wore a hat or mine, he ended up looking like someone from N-Dubz haha!
Then on Sunday we went to the Lakes for a few days away, we are so lucky that we can go to the Lakes as many times as we like, within reason of course! Alfie can come with us and it doesn't really cost us anything. The Lakes will always hold a place in my heart, its where we got engaged!

The walk we went on, on Monday was too long, I over estimated myself and had strop half way as I was too tired and my lungs were on fire. The walk was on really rocky ground and it was so tiring, poor Alfie struggled at times and had to go in the bag for a rest at one point. Sadly I didn't fit in the bag and Pete had to give me a telling off when I refused to go any further. We turned back once we saw a hill we had to walk up, no way was I going up there, Norman let us down this time, the walk was poor and was not on the level! To finish the day off the pub we really like and was looking forward to going to, doesn't do food on Mondays (!) so we tried this other pub and the food was rubbish!
However Pete and I are not ones to be put off, so we tried another walk on the Tuesday, shorter and alot more friendly! I have learnt my lesson, my body and lungs will only allow me to do walks of 3 miles or lower on level, none rocky ground!
Needless to say I am exhausted now. I think overall I have spent more time sleeping this week than not, I've woken up at about 10am or later every day and slept in the car when travelling whenever possible! Even though walking totally tires me out, I like to go on walks as it reminds me that even though my body is poorly, I can still breathe and walk and although not as good as others, I'm alive and functioning! Feeling tired means I know I have tried my hardest and I've pushed myself, I suppose its a feeling of self satisfaction like someone who does a sponsored run, its my version...! In a way if I don't feel tired I feel like I'm lazy, it's my way of knowing I've done all I can for the day.

Pete has taken the rest of the week off work and today we have bought some plants for the garden and planted them. We bought a strawberry plant, I know it will probably die within a month as I have no idea what to do with it, but it will be fun to try..! I wore a mask when digging in the compost as I've read lots of bacteria are in there including cepacia which is a CFers worse nightmare from what I've heard, patients with this on their lungs aren't even allowed on the CF ward! So call me paranoid but I wore a mask left over from when we decorated.

First Knitting Projects

Last Friday I had outpatients, it went OK. My lung function was fev1 40% fvc 51% and my weight was 56.8kg. The dietitian gave me some long speech about how putting weight on was good and all studies show people with CF who have better weights do better overall, she said the ideal bmi for a female with CF is 22, mine is just over 20, I can't imagine it being 22! I told her I had no plans to loose any weight and wouldn't know how to anyway so she can relax!

I told the Doctor about my aching and bladder problems, he did a few things with my legs and basically has no idea what could be causing these things. My last glucose tolerance test a few months ago was fine so he doesn't think its diabetes. I did a urine sample and I am due my annual bloods so they are doing those next time. Annual bloods is where they take loads of blood and test them for almost everything or so it seems! You need to fast beforehand though so they couldn't be done that day. I had my port flushed and they did take some bloods to test my CRP (measurement of infection) and glucose (sugar levels) to check everything is OK, my port bled back! Yeay! I have also been referred for another bone scan as since my last scan showed some deterioration, they wanted another test done in 6 months.

At the weekend Pete went to Germany for a stag do so I was on my own! I tried to make plans so I wouldn't be alone and bored and so on the Saturday night I went out with one of my friends. We had a really good night but the next day I felt so tired I had to cancel going to the cinema with another friend. I did manage to go to a barbecue at my mums but when I got home and had to rush around to do my physio and get ready for the cinema, I couldn't face it!

I've felt quite crappy all week to be honest, I feel tired and more mucusy than normal. Whenever I go on nights out it always dries up my chest so everything is difficult to shift and makes me tired, people don't believe me and say its just a hangover, but I don't think hangovers last a week! I'm not really sure at the moment if I have something developing or have caught something or if its just repercussions from Saturday or just the weather!! So I'll have to just wait and see.

I missed Pete so much! I'm never letting him go away again haha! He brought me back a fridge magnet and a little yellow soft top mini just like the one we used to have! I miss that car so much!!

On Wednesday we went over to see Freya and I can finally reveal my first knitting projects! I'm glad to see the back of that blanket, things were hectic on Monday as it still wasn't finished and then when I washed it, loads of the stitching needed fixing and I just wanted to chuck the damn thing out of the window! But it looked good in the end and I hope Freya likes it! I also did a cardigan, see pictures below. Freya is lovely and her mum is doing well and looking far too good to say she had a baby a week ago!

New and Very Cute Arrival!

Meet our newest member of the family, Freya! Born yesterday morning weighing 8lbs 8 and a half oz. Mummy (Pete's sister) and Freya are doing well and hopefully Aunty Gemma will get to meet her next week, can't wait!

What a Difference a Week Makes

I've been a very naughty girl, I ran out of pulmozyme on Tuesday and didn't go collect the prescription from my GPs until Thursday. Which meant my pulmozyme wasn't really for collection until yesterday, so I haven't had pulmozyme for almost a week. It's mostly my fault but also the GPs and drug suppliers fault for being so slow and taking 2 days to do my prescription and then 4 working days to deliver it. If I'm going to run out of something I literally have to realise a week in advance so I can get the prescription and have it in the chemist, it can be difficult to be so organised, especially when my GPs is not around the corner and closed on a Wednesday afternoon. At least I can now email my prescription requests, I used to have to drop the request off and go collect it 2 days later, why it takes 2 days to write a prescription is beyond me...

Anyway, yes I have been naughty and now my chest is feeling crappy. It could be coincidence, but it's more likely it's due to lack of pulmozyme. My sputum is thicker, darker, more difficult to shift, it sticks at the back of my throat and makes me feel sick and it sounds more meaty when I cough. I felt so tried yesterday, all day, everything I picked up felt so heavy, I feel asleep at about 9.20pm and slept like a rock last night until 10am this morning. Well apart from when I woke at midnight due to some women shouting in the street (I wear earplugs so she must have being very loud!) and a guy telling her to 'go the f**k to sleep', I live on such a lovely street!

Hopefully now I'm fully stocked on pulmozyme I'll start to feel better again. A few other issues I have been having are A) I am weeing for Britain, I can't stop! I go upto 8 times during the night! and twice during a physio session. Worried I have a weak bladder and now idea how to sort it out. B) My bones keep aching on a night, particularly my bones around where I sit and the tops of my legs. I feel like an old woman! It hurt so much the other week I was crying in pain as it hurt to walk, or to sit and when I coughed it was horrible. I ended up lying on my back with my legs up in the air to take the pressure off my sitting bones. Some pain killers seemed to help it and I had to lie on my front in bed which isn't great as I can't breathe very well when on my front! I have outpatients next week so will mention both things and see what the Doctor has to say.

I was given some interesting advice last Friday in my yoga session.... I was coughing alot during the class and afterwards the yoga teacher came over to me and told me one of the men in the class was a Doctor and suggested my cough could be caused by acid reflux (which is basically like indigestion) and to try take some gavisgon. She said she told him about me, not sure what that means, she knows I have CF but that doesn't mean she knows anything about it! But he insisted she tell me. I politely informed her I was coughing because of the mucus on my chest and I am on tablets slightly stronger than gavisgon for my reflux and there is nothing I can do about the coughing. All I want to do is go to yoga, get some exercise and mind my own business!

Pete did a 10k run on Sunday, the Jane Tomlison Run for All as part of his training for the Great North Run. Thanks to all of you that have already sponsored him but for those of you who haven't please do! Pete is working so hard to prepare himself and remember it all goes to the CF Trust who have recently had to announce they are having to put research on hold due to lack of funding http://www.bbc.co.uk/news/health-13643267 . Please click here to donate.

It's Alfies birthday today, he is 4 years old! He is heading to middle age now bless him, maybe he'll buy a sports car or something! Here he is the first day we got him



Here he is now, what a handsome boy he turned in to!

Walking on the Level

Hello!

Sorry again I haven't posted for awhile, I guess it's a good sign because it means I'm busy which means I am feeling good!

We came back from the Lake District yesterday, we went Sunday to Tuesday and had a lovely time. My brother and his girlfriend were supposed to come with us, but her Grandad sadly died on Saturday night so in the end my brother still came after some persuasion! It rained on the Sunday so we just stayed in playing boardgames and cards and drank, and and went out for a meal at he local pub. I was designated driver that evening, the house is in the middle of nowhere up a massive hill which involves driving up a long, windy road and in Pete's car which I'm not used to driving, it was an experience to say the least. Pete does most of the driving when we usually go to the Lakes, so I'm not really used to it! We got home in one piece and I only stalled twice so I can't have be that bad...!

The next day we went for a walk with a stop at a pub halfway and then on Tuesday my brother left early and Pete and I went for a walk around Grizedale Park on one of the easy routes before heading home. If anyone is going to the Lakes and wants to go on walks but is like me and pretty rubbish at walking due to CF or anything else that limits your mobility, you should purchase a book called 'Lakeland Walking on the Level' by Norman Buckley. We have just purchased the second edition as its great for me, there is no way I could do alot of the walks in other books as there are just far too many hills, there only needs to be a small slope and I'm coughing and breathless. These walks try to be as flat as possible, yes there are still slopey parts, it is the Lake District after all but they are perfect for people like me. The walks vary from about 1 mile to 7 miles and often it has short cuts if you are getting tired. It outlines how much rise and fall there is at the start of each walk so you have an idea of how hilly its going to be too.

I'm tired today after our trip so going to take it easy and leave you with these photos!

Wee Fatty Bum Bum

I had outpatients on Friday, I had a feeling I might need IVs as was feeling very tired and coughing alot even though I didn't feel like I needed them if you know what I mean! However my lung function is up to 43% and my weight is 57.1kg! I had my port flushed and the nurse missed first time and got the needle in the second time. Yes it hurts when she misses, she is basically sticking a large thick needle, nothing like a vaccine needle, into my muscle, I've now got a little bruise! The doctor asked her to take some blood just to take my tobramycin levels as I keep feeling dizzy and she was worried I had too much tobramycin in my blood as I'm on tobi nebulisers all the time rather than one month on and one month off. To be honest I just think its because I'm tired from the holiday, I haven't heard anything from them so I guess they were OK!

I'm surprisingly bothered about my weight, I felt I'd put weight on but thought it might be just in my head. But it seems I've put on 2kg on and it appears all on my belly so I'm going to try up my exercise and cut back on snacks slightly just until I feel better about myself. I need to pick up on my exercise anyway, I've slacked off and even Alfie has put some weight on so we need to go walking more often! I'm not obsessed or going to starve myself (I've had two takeaways since Friday!) or anything, I just don't like having a belly that is flabby and sticks out! I know people will think I'm pathetic thinking this but its the most I've weighed in about 3-4 years, I just need to tone up abit I guess, I'll probably be back to 55kg by my next appointment and I I'll eat what i normally eat, my body is just like that.

Something creepy happened the other day, I had finished my nebuliser and was going to wash it and there was a bug in it! Right by the bit where the mist squirts out into my mouth! It was a little black bug with orange spots and a wiggly tail. I was so freaked out, I have no idea how it did not get squirted into my mouth! Now I keep checking every time I do my nebulisers, ew!