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!!

Half Way There

7 days down and 7 to go!
IVs seem to be going OK, my chest is feeling alot better, I'm coughing up less sputum and it doesn't feel to be rattling around my chest as much. Although my IVs seem to be making me quite tired this time around, I think I could sleep all day given the opportunity!

The nurse came to see me today and make a very valid point when I told her about my tiredness and that Pete has had to make tea alot. She pointed out that if I was in hospital which most people normally would be when having IVs, I'd get everything done for me. But as I'm at home everyone seems to think (including me) that life goes on as normal, when in fact I actually need to get some rest to help the IVs work.
The whole point of home IVs is so they don't interfere with my life, but at the same time I still need to rest. I guess it's a balancing act!

My silly port didn't bleed back when she changed my needle, so I had to have some blood taken out of my hand. The needle vibrated when she started pulling the blood out, it was weird but cool! She said it must have touched a nerve but it didn't hurt, never had that happen before, very interesting..!

I've lost abit of weight which is quite funny because I was moaning to Pete last week that my belly was getting fat and I was going to go on a diet, I then enquired as to what you can eat on a diet and when he told me I decided dieting wasn't for me. However it would seem I have lost a kg in a week anyway. My belly isn't as fat anymore anyway, I think it was more all the bloating from those damn iron tablets that are still causing me to have painful constipation. I'm up to two movicols a day to try get things moving, but it's still a struggle! The nurse says if my levels come back OK, I can stop taking them, wahoo! I swear last week I could not fasten some of my jeans my belly was sticking out so much!

I started my knitting lessons last night, it's a lady I know from Scope that is teaching me. I went to her house and spent about an hour there and lets just say, I don't think I am going to be a natural! We are starting with a scarf and I got about two rows (if that's what you call them) done, even then I managed to get a big hole in it somehow and she had to correct it! Her cat is so funny, he only has three legs but you wouldn't know with the way he jumps around. She herself has cerebral palsy and cannot walk or move herself around, amongst other things, it sometimes puts your life into perspective when you see how other people with disabilities live, I may be poorly but at least I have quite alot of independence compared to others.

Old Friend/Enemy

Today I commenced on my old friend/enemy, the home IV's.

I think I had already mentioned that I was feeling about rough after Christmas and then on Saturday I woke up with a cold. By Sunday I felt quite sh!te to be honest and couldn't even lie down properly in bed as it just made me cough all the time, so I spent the night propped up to stop coughing.

The snot from my nose and mucus from my chest is never ending, I want to just stick a vacuum down there and suck it all out! I have little energy and I'm getting headaches from the coughing and my sinuses. So on Monday I called to start IV's, it's not going to sort it's self out and the longer I leave it the worse it will get, plus the doctor said to start them if I felt myself slipping. I've come to the conclusion they like to treat my exacerbation's (that's what they call it) as soon as possible, rather than see how it goes because there is generally only one way it's going to go, and it's not positive!

So I started IV's today, my fev1 is 42% so down 4% from last time but still quite good for me. My weight is up a tiny bit, which I knew it would be because my belly has been feeling slightly flabby and my trousers abit tight! They took a swab from my throat like they do every time, I'm 99.9% sure it will come back saying I have a virus! The doctor checked I'd had my flu jab, apparently alot of naughty patients haven't and have got flu and swine flu, some have it even though they have had the jab! I assured her I was the gold star patient and do everything I am told to do. She says it's fine to cut my iron tablets down to two a day which I've been doing for the past week or so, as they are what is causing my tummy problems.

That's about it! I'm on Colomycin and Ceftazidime and I also am the new owner of a pari pep, it's like a pep mask but a mouth piece rather than a mask. To be honest I don't think it's as good from my short practise with the physio earlier, but I'll give it a go. The only reason I have it is for vanity reasons, I complained the pep mask rubs my make up off which is a pain when I'm ready to go out and need to do my physio, it's also a pain when I have my glasses on as the mask pushes them up. So hence I have been provided a pari pep to try out.

Pari Pep below and Pep Mask at the bottom

Slightly Anemic

I had outpatients today and my fev1 is still 46% so I'm happy about that. I've been put on some iron tablets as I'm slightly anemic, apparently they might make my stools black, nice....! I looked what anemia causes and it says it can cause fatigue and weakness, both of which I often get but I assumed it was just the side affects of medication, low blood sugars or just infection. It still could be these but maybe lack of iron isn't helping! I also have to leave 6 weeks instead of 4 weeks between my month on of voriconazole, as they are worried I will become resistant to it and apparently all anti-fungals are from the same family so if the fungus builds resistance to one it can become resistant to all of them. My weight is 54.4 kg, so all in all a good outpatients appointment. I had my port flushed and it even bled back, its seems to have bled back the last few times, so maybe it's finally starting to behave!

I'm really enjoying the yoga classes on a Friday now, they now do two classes back to back as demand was too high for just one class. This means that now there is less than 10 people in the class I go to, so the teacher gives us more attention and keeps saying I'm good at stuff which obviously is good reinforcement to keep me going back! I'm starting to build some strength in my upper arms now and starting to get some muscles haha!