All Clear

Well I relieved to say my constipation problem has finally seemed to sort itself out. The day before Pete did the Great North Run I felt terribly blocked and bloated so after emailing a CF friend for advice I took 6 movicol together and 2 senna. Then the next morning I took another senna. I was slightly worried I could have a problem since we would be outside all day with only port-a-loos! But nothing seemed to happen. Then that night I took 2 senna and 4 movicols. This seemed to get things going and then I have gradually reduced the number of movicols, I'm now down to 1 movicol and 2 senna each night. I'm going to try have the senna alternate nights but we'll see how it goes. The Doctor says this is fine and to do whatever I want really as long as things are moving along.
So my suggestion is to take up to 8 movicols in one go if you are blocked up ( take at night), slowly increasing the dose doesn't seem to help. Just give it a blast and then slowly reduce the sachets.

Last week I did a presentation at Scope, I did it about 2 years ago and was asked to do it again for new mentors. I just used the same slide show but updated a few things, mainly the bits about people I know with CF as some have sadly passed away and others have had transplants. I managed to print the handouts in the office from the usb stick but then the usb stick would not work in the projector laptop, so we tried it in 2 other laptops including the one in the office I had just used and it wouldn't work in any! Nightmare! So I had to do the presentation from the handout which was disappointing since some of the pictures were not very clear on it. It always amazes me how little people know about CF, one guy said he didn't realise it was so serious, nearly everyone had no idea how much treatment is involved. So I'm glad that I can help try educate people.

Pete and I took Alfie for some behavioural training on Sunday which was interesting. Alfie can be funny with strangers, children and other dogs and we were thinking of having him neutered to try help with the problem. The vet told us we would need to incorporate it with some behavioural training so I contacted the place were we took him for his dog training classes and they referred to the behavioural specialist. She says not to get him neutered until she has assessed him as it could make him worse. We had an hour with her on Sunday and then we get 3 follow up sessions, which will involve her bringing in a dog to teach Alfie how to behave with them, also we will use a doll that makes baby noises to get him used to children and teach him how to behave around strangers. The good news is that he is not classed as aggressive, he doesn't just go around attacking people, I think she used the term 'highly reactive' haha. People who have met Alfie will laugh reading this because he can be a little bugger and has a reputation, but I've always argued he isn't aggressive, once he knows people he is fine and so loving and gentle with them and eager to please. Anyway we have some tasks we need to do before our next session, so fingers crossed it helps Alfie become a less stressed out doggie!

I had an Outpatients appointment yesterday and have started some oral ciprofloxacin as I think I have picked up a virus. I'm waking with a headache every day, sweating loads in the night, feeling tired, getting breathless more easy and my sputum is thicker. You can tell winter is coming, I hate winter because I catch every damn cold going and need IVs! Fingers crossed that isn't the case this time.

My lung function is slightly down to 41% from 43% which apparently is stable (it annoys me when they say that, a small decrease in % means more for me as it never moves too dramatically), I weigh 57kg (yikes, fattie!) and all my annual blood results came back OK. From what I recall they test all vitamin levels, iron levels, if I'm anemic, my crp which is your infection level (mine is 17, it should be below 10 but mine never gets below 10 apparently), my aspergillus levels (fungus) both of which are higher than they like but mine never get to those levels (why am I not surprised), my thyroid hormone level, calcium level (slightly low) and blood sugars. That's all I can remember! I have been given permission to come off Voriconazole for good now until my symptoms start to reappear so that's good news as the side effects were getting worse with each course of treatment!

By the way, we still have a hole in our bedroom ceiling and so still sleeping in the spare room. The insurance company are taking forever!!

The Bupa Great North Run

Well its finally over! 2 hours and 31 mins, 13.1 miles and Pete completed the Great North Run on Sunday. He has raised over £600 for the CF Trust. We are all so proud of him! It was a long day and a long drive home due to all the traffic, but very enjoyable and I'm glad we went to watch him at the finish. He is already talking about doing it next year! Thank you to everyone that sponsored him, your donations kept him going and made it worthwhile! If you haven't sponsored him yet and would like to now the race is complete there is a link at the top right-hand side of my blog where you can visit his page and leave a donation.

2 Years Later

Well I had a great weekend last weekend and I swear I should get a medal for how compliant I was with my treatment and it wasn't easy I tell you! On Friday we went to a wedding and had a great time and then on Saturday we had a surprise birthday party for my Nana as it was her 80th Birthday. She was so surprised especially since her two sisters had managed to make it over, she cried and everything so I think the surprise went quite well! I spent Saturday night and Sunday very tired and asked my brother to hint to my mum we would like to go around for tea, his hint went something like this 'Gemma and Pete want to come around for tea', it worked anyway!

Here are some pictures from the wedding


Some pictures from my Nana's party

My constipation has been getting worse and worse, I was up to 4 movicols a day and nothing was happening so on Friday I gave the hospital a call. I had to go in so they could have a feel of my belly and this confirmed I was 'full up'. Because I wasn't sick or getting extreme pain they didn't prescribe me the really strong stuff, they prescribed me Bisacodyl, 2 to be taken at night to clear me out. I have to cut it down to 1 a night after 5 days and then move over to senna after another 5 days. I've come off the movicol for now as its clearly not working. I used to take senna before movicol and came off it for some reason, no doubt I will find out in a few weeks time. The next day I went to the toilet alot, but since then not much else has happened apart from last night when I woke up in extreme pain, like my stomach was in knots, it hurt so much I was crying. I'm still extremely constipated, my stomach looks so fat and horrible, it doesn't help that when I was weighed on Friday I weighed 58.2kg, its the most I've weighed in about 5 years! So I'm really fed up at the moment and just want it to get sorted out.

On Saturday Pete had a 'little' accident when clearing out the loft in preparation for the loft insulation next week. I'm not happy sleeping in the room as its quite dusty and stuff keeps falling out so we are sleeping in the spare room in a 3/4 bed, its cosy! Pete tried to call someone today to come out a take a look but he hasn't got back to him, so not sure what we are doing next.



On Sunday it was our 2nd Wedding Anniversary, can't believe it! We went to Wentbridge House (where we had our wedding reception), I think we both looked alot more glamorous two years ago! I must have been doing this blog a long time as when I first started I wasn't even engaged!

Forward Planning

The last few days I have being wheezy at times throughout the day, there doesn't seem to be any kind of pattern. Then this morning as soon as I woke up I started having a coughing fit and coughed up a big, hard black piece of what I can only assume is fungus. I really hope the fungus' on my chest aren't starting to play up again, I have taken voriconazole for 2 years now and have increased the gaps between treatment. Last time I managed 12 weeks and was hoping that I could now come off it completely. The side effects of the voriconazole seem to be worsening for me, when I'm on it I get headaches all the time, light hurts my eyes and I seem to need to wear sunglasses all the time when outside and some of my hair seems to fall out, therefore my hair is thinner. I can carry off the sunglasses because I'm so cool, but I don't like the thin hair and I especially don't like headaches, sitting with my head under a blanket to make it dark is not my idea of a fun day.

I seem to busy lately but I couldn't tell you what doing. I am doing lots of reading as I'm obsessed with the Song of Ice and Fire books, I'm on book 3 now and if I don't get my fix of Starks, Lannisters and Tygarians every day I am very upset! I am also trying to walk Alfie everyday although this doesn't seem to be happening! Yesterday my car had to go in for a service, as you can see its boring stuff so I won't bore you anymore!

On Saturday I had to pass on a night out, as this weekend coming up is a busy one and I didn't want to be feeling ill. I find every time I go on a night out in to town it takes me forever to recover and often I end up on IVs because I catch a virus! It tires me out so much, the talking loud, the walking around, dancing, the alcohol, going to bed late. I do enjoy going on nights out but I decided to be sensible since I have lots on this weekend and I also went to a house party last Sunday. There was no way I could go out Saturday night and then go to a house party on the Sunday! So instead I met my friends before they went in to town, then when they got their taxi at 10pm I went home like the boring person that I am! They kept asking me though, 'why aren't you coming' 'just don't drink', I don't think they understand that I have to keep a balance to try stay well, people just don't understand what it's like. I always say the worse thing about CF is the lack of energy and tiredness, I just simply can not do everything that other people can do. My energy levels are lower and tasks use more of my energy, then on top of this I have treatments to do everyday that use lots of energy. Imagine breathing through one nostril all the time, how much more work walking up those stairs would be or even just coughing which I do more of than the average person! I'm glad I was sensible though as now I can enjoy this weekend coming up.

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!