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.