The Solace of Stitching or How to Preserve your Sanity one Stitch at a Time!

One thing that no one tells you about having a chronic illness is how much of your personality it eats away.  So many of the things that have defined my life (playing the flute, singing in choirs, dancing etc etc)  are now basically impossible, so I've been trying to find some relief in the things that I can still manage. These are mainly characterised by being hand work, such as crochet and hand sewing my hats.  The state of my health has caused me some pretty big bouts of depression and anxiety (fairly understandable when confronted with the need for a double lung transplant!)  but being able to pick up a crochet project or hat and feel the rhythm of the stitches as I form them is incredibly soothing.

When my mind is in a tumultuous mess, the repetitive nature of crochet and sewing calms me in a way that some people compare to meditation. I have tried Mindfulness Meditation as recommended by my psychologist, and I have found it helpful.  The main problem I have with it, is that it mostly focuses on using your breathing as a way of centering your thoughts in the present and not worrying about the future or the past.  I can see how this can work but when your breathing is a massive problem, focusing on it just makes me more stressed, not less! So sometimes what I need most is a task that prevents my mind worrying endlessly about all the stuff that is driving me nuts. Crochet and hand sewing hats takes enough thought and concentration that it prevents the endless spiral of depressive thoughts that are so easy to slip into.  I really do find a great deal of solace in stitching, and its not just me- a quick search on the Internet shows how many people have found relief from mental health issues using knitting, crochet, embroidery or other hand crafts as a form of meditation, for example this article from the Craft Yarn Council has numerous exampes of knitting being used as therapy for the seriously ill.  So it's not just me!

Another thing no one tells you about chronic illness is how it can leave you feeling out of control.  I find this particularly hard as CF or not, I like to know what is happening in my life and that I have a plan of what I ant to happen and how I'm going to get there. Sadly, n many ways it feels like the illness is in control, because you always have to take into account all the extra stuff that having something like CF entails.  You can't just decide for example, to go out to the cinema, you have to consider if you are up to going there, can manage the air con in the cinema (it can really set off a niggling cough)  have you got all the meds you need to have with you have you  got your insulin and diabetic contraptions and so on and so on and so on.... I'm not saying it's impossible to do things, you just have to be incredibly organised and know that there are these controlling factors to pretty much every decision you make.  I really don't like that my CF makes me feel that it is control and I am not (understatement alert!).  I'm not saying that healthy people are always in total control of their lives, but they can be pretty certain that if you do (A) then the outcome will be (B).  When you add chronic illness into the equation doing  (A)  may sometimes result in (B)  but its more likely to end up being anything from (C) to (the square root of five) and anything you can imagine in between. With something like CF at the stage I am at, you can plan and prepare all you like, but inevitably your body decides to throw a hissy fit and suddenly all bets are off.  I hate that one day I'll feel ok (at least ok my standards!) and I'll be able to do something simple like having dinner with friends and the next I can barely get out of bed cos I've got a raging temperature and I'm trying to breathe through treacle- I really cant express how frustrating this is and how angry it makes me.
Crocheting and sewing gives me some semblance of control back, I can still do these things, the way I want and and my CF can just sod off!  This gives me a great deal of satisfaction, however simple and small the project may be, its still mine.   When everyday tasks feel like insurmountable problems, actually making something from start to finish really does help prevent the feelings of  being out of control, of inadequacy and uselessness that having CF can create.  I frequently feel that I am just a huge burden on Mr EB and my family and friends.  They have never given me any reason to think that, but it's hard not to feel that way when you need so much help to do things that everyone else takes for granted.  To try and help asuage these feelings I have been searching online for articles and books that might help me learn to deal with these difficulties in a more proactive way.  One book that I absolutely adore is Ruby Wax's Sane New World.  Not only is it hilariously funny in its explanation of Wax's own metal health problems, but it includes lots of exercises based upon mindfullness, that are easy and simple to do.

Another really interesting article that  found online is by Dr JoAnn LeMaistre, all about Coping with Chronic Illness. It's actually a shortened version of a book of the same title, which is sadly out of print, but despite its relatiely short length it is a really helpful read.  She talks in depth about setting realistic expectations of what you can achieve and trying to live in the present.  If you have a chronic illness I seriously recommend reading her article, as it really does cover loads of helpful ways to cope with your reduced health.  So until I either get listed for tranplant, or by some miracle a treatment does become available for my genotype I shall be crocheting and sewing myself into some sense of sanity!  If you'd like to see some of my crochet projects, do check out my projects page on Ravelry.

2014 Round-up and 2015 Plans

Well its a New Year, an obvious time to take stock of things and plan for the future.  2014 was a very mixed bag of a year.  ON the positive side I had some fabulous times with friends and family and totally the best day of my life so far, when I married my beloved Mr EB in June. I couldn't have asked for a better day, the weather was perfect, food was amazing and we are so lucky to have so many lovely people in our lives who came to share it all with us.  Sadly, the year also contained way, way too much crap!  I spent two weeks in Papworth in March/April plus a further three weeks at home on ivs being treated for Micobacterium Chelonae, I can honestly say that the treatment was utterly horrible-I have never been so sick in my life!  So that was hilarious fun,  then in October my health was the worse its ever been, i ended up back in Papworth and oxygen dependent for the first time in my life.  I don't think I really appreciated just how ill I was at the time, probably because going into denial was the only way I could cope with it.  I had another round of the micobacterium treatment (yay more ridiculous nausea!) and spent three weeks in Papworth and another two weeks on ivs at home.  It really was a horrible experience, I had one evening when I simply could not catch my breath, my O2 saturation plummeted and the nurses bunged me straight on oxygen.  In retrospect I was really scared, and it still scares me just how bad I got and how quickly, but at the time I was surprisingly calm, as I wasn't totally aware of what was going on.  The next ten days or so were spent pretty much on oxygen 24/7 which whilst it definitely made me feel better, meant I was also stuck in bed for pretty much the whole time-very dull!  I became very weak and lost a spectacular amount of weight during October and the only reason I didn't end up have to NG feed was that I had a total freak out about it and managed to persuade the dietitians I would start drinking the dreadful milkshake supplements (which I have and thank God the weight is slowly getting back to an acceptable level).

This health crash has forced me into having to reassess my life, yet again-bloody CF!  Trying to stick to my motto of 'adopt, adapt and improve', I'm attempting to view this as a positive thing, but mostly I'm just a bit confused as to what I am going to do.  Working to a deadline is just way too stressful when you can't tell if you may suddenly end up stuck in hospital unable to do anything for three weeks...So work is going to have change a lot, I'm just not quite sure how yet! More hats and embroidery seem one way to go, but I don't know how I'm going to sell anything-suggestions gratefully received...

We are also considering moving to a new house that will make my life a bit easier on the domestic front.  Stairs are definitely no longer my friend.  It's not that I can't do them, I can, but when I'm not feeling great (which is increasingly often), when I get to the top I either feel terribly faint or have a massive coughing fit-not ideal! Our house only has an upstairs bathroom which is a bit problematic; so we are on the look out for a bungalow- I feel so old!  I love George Street and really don't want to have to go through the stress of moving, but equally I am increasingly conscious that I cant keep up with the domestic side of life, not to mention the garden-I really do feel utterly useless at times! So, we are considering moving now before I get much worse and it becomes harder.  So it looks like there will be some big changes ahead in 2015.

Absence!

Oh dear, I've been a bad blogger again... Its mostly been down to my health being a total disaster area.  The doc's finally decided that I'd had enough positive cultures of a micro bacterium called Chelonae to actually warrant treating it. Given that they've been trying to decide this for about two years, you can see how few positive results I've had and also how serious the treatment is as they don't give it to you until they really think you need it.  The treatment is seriously, seriously crap- for me it was two weeks in Papworth on three IV drugs, two of which are very, very strong along with two nebbed antibiotics and four pill antibiotics!  This was followed by a slightly reduced IV regime of the two massively strong ones, as well as all the nebs and pills for another two weeks which, thank God, was at home and I am now on the maintenance regime of the two nebs and two pill antibiotics...its still a lot of drugs, but it is much more bearable than the IVs. They actually wanted me to do the IVs for longer but I'd lost so much weight (5kgs in about 10days) and was so knackered and weak that they let me stop at four.  They were really nasty drugs too; tigicycline (I think that's how you spell it!) makes you seriously sick-I spent the first 48 hours unable to eat anything and not even water was staying put. The docs eventually got a good anti-sickness regime going which at least let me keep food down, but one of the anti emetics I started with, was so strong it basically knocks you out; so whilst you aren't being sick anymore you are also mostly comatose-great! To give you an idea of quite how sick I was, they gave me the same drugs that they give cancer patients when they are on chemo-really no fun at all. So, that was pretty much all of April out of the window on massive loads of drugs, so I didn't have a chance to do anything interesting to blog about.

At least now I've had a bit of time to recover and even go on holiday with Mr EB and the massed Evans clan, I'm getting back to work on my wedding dress and doing some embroidery too. Hopefully, I'll be able to do some more interesting blogging soon when I will finally be able to blog all the pics I've been taking  of my dress and have some other work to post as well.  Life will finally get back to being sewing and fun based, rather than drug based!

Temporary reprive...

Well, I'm back on the 'normal' ivs, dull, dull, dull, but I am not to be hauled into Papworth for three weeks just yet... The consultants have consulted, and decided that at the moment they don't think it's worth subjecting me to the treatment regime for the micro bacterium as they want more evidence that I actually a colonised with it before they do that.    Now I am fairly pleased about this, but I am still getting a very large sense of deja vu, as I was told the exact same thing a couple of months ago.  However, I subsequently got another positive result and the whole saga started off again, so in this instance I am not holding my breath... It is fairly obvious that this situation could reverse itself as easily as falling off the proverbial log so until I've had a good few more negative cultures I will not be hanging out the bunting and opening the champagne.  I've also managed to grow another unheard of bug called Chrysomanes indologenes!!! (no idea if I have spelt that right).  It is apparently not something to worry about as it doesn't cause problems, but how on earth do I manage to pick these things up?  I'm seriously considering wearing a hazmat suit at all times as I just seem to be collecting weird bugs at a great rate and I am getting a bit fed up with it!

Going round in circles, crocheting as I go!

I must admit to an overwhelming sense of deja vu... I am pretty much exactly back to where I was in October (after I had my first rubbish sample of some sort of micro bacterium), waiting to get some other sort of result that would give enough evidence to justify me being incarcerated at Papworth for three weeks and starting a massive regime of drugs to treat said micro bacterium.  This time they have at least identified the type of micro bacterium, but the doctors still are very wary of starting me on this unpleasant roller-coaster of drugs.  I can see why its such a hard decision, I really don't want to have to do these extra drugs, but it does rather leave me back in limbo- again!  So, I am trying not to worry and fret myself into a total mental collapse and hoping that either I get a nice obvious reason to do all this stuff or that the various teams involved decide that I am not colonised and can still be assessed for transplant when I need it... Like I said in the last post, I'm not good at waiting...

I find that one of the best ways of distracting my troublesome brain is to keep my hands busy.  I've just had another two weeks of what might be called 'normal' IVs, to treat the pseudomonas that regularly upsets my lungs.  These drugs won't treat the micro bacterium, so they should not be affecting the results of the samples I am sending off.  Whilst I'm on them tho I do feel rather like I've been run over by a steam roller and am just knackered.  This gives me far too much time to brood and worry, so I've been keeping myself busy with more crochet and also more embroidery designing with the new software and machine I've got (more on that later when I've got the hang of it!).  I've been gradually crocheting a blanket made of hexagons for several years now... I do a few here and then stop for a bit to do other things, then I come back and do a few more.  Well this dose of IVs I decided to get it a to a point where I could stat putting it together but can can still add more hexagons on later.  I've now got at least 12 of each of the nine colours and will be starting to crochet them all together with white yarn as I've worked out a layout I am happy with.

Many, many hexagons to be joined together.

Because I tend to get bored with repeating the same shape and colours, I have also been working on a yarn-eater blanket, to try and use up some of the yarn scraps I've had hanging around taking up space.  I really like making granny squares so that was an obvious choice. I was rather inspired by a blanket made by my great-grandmother which is made in amazingly bright colours, in clashing combinations that I really love.  So I decided to do a version using slightly smaller squares, only three rounds in different colours.  So far I've done nearly 50 squares and as you can see it's very bright and over the top!  I like the fact that the individual motifs are so quick to make, so you can just knock one up whilst having a cup of tea and have something to show for it immediately.  I will carry on making loads of squares until I run out of colour combinations, then will join them altogether with black.  If I get stuck in Papworth for three weeks I think I could manage an awful lot of crochet...

The Waiting Game...

I hate waiting. I've never been particularly patient with anything, but where my health is concerned I'm fairly useless.   I like to know what is happening and what the plan is and why I am doing the treatment.  So having to wait whilst the docs decide if they think I should have the treatment for the micro bacterium is just hellish.  The treatment is seriously tough- three weeks in hospital  on four IVs and extra nebulisers. And ts not on the cf unit because of cross infection issues.  So whilst I will be in an en suite room (I'm not allowed on a ward thank God!) it won't be the super nice new ones on the unit and I will have to deal with non-cf unit staff; who with the best will in the world are not as good as the unit staff and do not have anywhere near as much experience in dealing with cf patients and our treatments.  Then once all that's done it's two years of an extra two nebulisers, maybe three and an extra two possibly three pills on top of what I already take! So whilst I can totally understand and agree with the docs not wanting to inflict that on me based on not much evidence, having that hanging over me is really doing my head in... If it was just obvious that I am definitely colonised with the micro bacterium then I would say fine lets get it over with and have the treatment, which Dr Barker calls 'Domestos for the lungs'. But it's not obvious.  Yes, I've had one clear positive and one sort of weak positive result but the bronchoscopy results have all been negative.  Usually bronch results trump sputum because it is much more certain that the bronch samples are from within the lung and not just something I breathed in from the environment and then breathed out. My CT scans don't have any clear changes indicative of micro bacterium and I've not lost significant lung function, all of which would be suggestive that it's really there.  With such small evidence its not surprising the consultants are having a hard time agreeing what to do with me!

The other problem of course, is the transplant aspect.  The Papworth transplant team are very hesitant about transplanting people who have this bug as the outcomes tend to be rather poor, well actually really poor.  The micro bacterium can lurk in your system in other places and then when you are imuno-suppressed to prevent the transplanted lungs being rejected  it can infect other major organs and cause abscesses-really not my idea of fun!  Being told that having a transplant with this bug present could end up with me having abscesses in your liver, kidneys or even brain was not a fun experience...  So the Papworth team seem very keen for me to have the treatment before they will consider listing me.  The consultants are asking around other transplant centres to see if I would still be eligible elsewhere or if it is a definite refusal all round.  If they all agree that it's a no-no, then that will at least make the decision for me.  I'm not prepared to give up on the opportunity of having a transplant one day cos of some stupid bug and if that means I've got to do this treatment then so be it.   The docs say its fortunate that delaying the decisions for a while won't impact on my health, but I would much prefer to know what I've got to do asap, rather than this uncertainty, I don't deal well with uncertainty. I'm far too good at fretting and arguing with myself and not sleeping- kind of like right now really!. But I'm just going to have to put up with it for a while longer and carry on waiting...

ARGH!!!!

I am so annoyed with my bloody lungs!  Sam, the specialist cf nurse from Papworth rang on Monday to tell me that I've grown a micro-bacterium in one of my last sputum samples....I am furious abut this!  I grew a very pathetic example of one at the end of last September, it was such a tiny sample that lab could not even identify its actual species and it died on the plate before they could! However, I was immediately segregated due to cross infection risks, and had to start sending  about a million more samples off and have a bronchoscopy. All the results came back negative and I was declared bug free.   This was such a relief as having a micro-bacterium is really very serious, they are not easy to treat and get rid of completely and some of them are an automatic disqualifying criteria for transplant.  I've got to the stage where transplant is being talked about more and I even went to see the transplant team in October to talk abut options.  Fortunately the transplant team don't think I am ill enough to be fully assessed and listed for transplant yet, so I do have some time to try and get bug free so when I need a transplant it is still an option - at least that is what I am telling myself to stop outright panic.Its not that I want a transplant now by any means, it is not a cure, but I really do not want to be told I can't have one because of a stupid bacterium.  When the time comes I want to make the decision as to whether I do have a transplant myself.

I didn't deal well with all this stress, not surprising really, it is all rather serious after all. With all the extra stress and annoyance at being segregated and ill, and the fear of not being eligible for a transplant I was rapidly descending into a big depressive spell.  I started seeing the CF Psychologist again (who has been just brilliant) to help me cope with it all, but when I got the all clear it was just such a relief. I could not stop smiling and laughing for several hours after being told and mentally I felt better than I had in months.  It was like a huge weight had been lifted off my head and I could see a future which if needed could include the benefits of a transplant.  Now I've had another positive sample all that weight is back again, and its even worse this time as I really can't pass this second result off as a possible false positive or just a small sample of bug that I breathed in and came out in the sample without it actually colonising my lungs- which was the prevailing view for why it turned up last time and was such a pathetic sample.  One positive result is not considered enough to decide if a patient is colonised with the bacterium, as the treatment is very heavy, arduous and long, so the docs really don't want to put you through it unless they are sure its worth it.  Now I have had two samples come back positive so it looks like I can't avoid the treatment.  I just can't believe I am going through all this rubbish again!  It always knew it was a possibility but I had hoped to have at least a few months off before the next health catastrophe came along...

Food and I

I have a bit of a funny relationship with food.  As a PWCF I have problems with digesting food, particularly with absorbing fat.  This means I have to eat as much food as I can, as often as I can, to maintain a healthy weight; its what I call the CF Diet. I can't remember a time when there wasn't a dietitian/doctor/nurse/parent telling me I needed to eat more-they still do! According to the health pros I should really be consuming one and a half times the recommended number of calories for an adult female- which I find practically impossible!  Added to this pwcf don't produce enough of the hormone ghrelin that makes the body feel hungry, so even tho I have to eat a lot I very rarely feel hungry.  People often say to me "oh you are so lucky you can eat whatever you want and not get fat."  Although I usually just smile at this remark, what I would really like to say is "b*ll*cks!  Getting past the obvious fact that being thin is never going to be any sort of compensation for having CF, this is simply not true.  I do not get to eat what I want, if I did I probably would not eat very much at all and would survive on tea and cake!  What I have to do is eat even when I don't want to, when I am feeling nauseous or when I have awful heartburn and quite frankly this is not fun.  If I don't eat enough the weight falls off me at an alarming rate and I can go from my okish BMI of 19 (the dietitian would prefer 20+, 20 being 'normal') to about 16 or even less, which is getting into dangerously low. malnourished territory.  For most women this would probably be fabulous-easy weigh lose, but for me it means no energy, lungs get rapidly worse and I end up on IVs or worse.  Without the high calorie intake I try and maintain, my health collapses frighteningly quickly, so I really don't have a choice as to whether I keep to my diet.

I would seriously contend that my CF diet is just as hard as any diet to loose weight. Frequently, I get to a point where just the thought of having to eat makes me utterly miserable and sometimes I even start feeling sick.  People often think that I must just 'be used to it', and yes, I suppose I am used to it but that doesn't make it any easier.  It also does not change the fact that its never going to get any better.  I have a target weight to get to and I have occasionally managed to get to it, but once I'm there the slightest cold can result in my falling straight off it again.  Also, maintaining this weight is really difficult, if I relax my intake down goes the weight again.  So, not only is this diet unpleasant it is unending. I am hopeful that a new study that is designed to see if injections of ghrelin could stimulate my appetite may make eating a bit easier if I am actually hungry sometimes. However, the study is still going and it takes a long time for these things to be approved-sigh.  In the meantime I will just have to keep eating...

Fantastic book!

Not really all the same size...

In a bid to make my cf diet a bit more easy to live with, I do tend to eat little and often rather than big meals which frequently get thrown up again... This is probably why I adore afternoon tea and small baked goods. They are much easier to eat and really help keep my intake up.  Also, as Dan Lepard says in his book Short and Sweet (pictured) sometimes 'we like to have our own cake rather than a piece of someone else's!"  I'm trying to widen my small things repertoire a bit and I found a recipe for Chocolate Whoopie pies in Dan's book that looked very promising.  They are two small cakey-biscuits sandwiched together with marshmallow frosting and finished with chocolate icing-nom.  I think I may have made mine a little bit big, and next time my inner pedant will definitely insist I get the piping bag out and make them more tidily! I dolloped these ones onto the baking try with a spoon and I think they were a bit big once put together to be described as bitesize...  I was feeling far too lazy to be more careful, but I think they could look really fantastic if made a bit more effort. I'm not totally convinced by the marshmallow frosting that sticks them together, as I do find marshmallow a bit too sweet even for me and it is so sticky that dealing with it is fairly annoying! However, the little cakey bits are delicious, so next time I may try using butter cream or possibly chocolate ganache. I also like the idea of experimenting with a lemony version and maybe a chocolate and cinnamon one...mmm...

 



Hmm

I've written and rewritten this post several times over the last couple of months but I'm not really sure what to write in this blog anymore.  I always wanted it to be about things I've made or done, shows I've done,  places I've visited and fun, cheerful (preferably shiny!) things, with maybe a bit of awareness raising about CF and encouraging people to sign up to the donor register and donate to the CF trust.  I don't want this blog to simply become a long guilt trip by me to make people give money and I definitely don't want people feeling sorry for me! It was never meant to be a litany of my treatments and health problems, as quite frankly I am fed up of having to put up with them myself, without boring everyone else and repeating it all online.

So, I don't know where this blog is going to go... I was feeling rather down about it all, I hate having to be sensible all the time and not do things cos of my health; it's very annoying, not to mention frustrating, irritating etc.  So I'm going to make a list of things I can still do and that may even be doable whilst on ivs, as they take up such a lot of my time these days. I definitely want to try and resurrect my hat a week project, which got totally scuppered by my health, however, it may have to become hat a month!  But I don't want all the lovely and rather expensive things I've got for hatmaking like my blocks and lots of feathers and materials, to just sit about gathering dust.  They were bought for a reason and they are darn well going to be used!  There must be more things that I can still do so my brain does not moulder and I loose all the skills I worked very hard for.  So on my list, I'll start with more crochet as I can already do the basics but might try some more complicated things. Then there is tatting which is a type of knotting my mum used to do, which I've always fancied having a go at.  More machine embroidery is also on the list as my machine is just sitting about too.... Although this is a bit on pause due to software problems- don't ask, it's very annoying!

Some culinary adventures may also feature in my new list of things to do.  I may finally write my definitive list of the best places to eat tiramisu that I've found! Any excuse to eat more tiramisu... Perhaps I shall embark on a challenge to make all the recipes from one of my many recipe books with my marvellous new Kitchenaid mixer- courtesy of Mr EB and my parents for my birthday.

It is quite ridiculous how much I love this machine! Not only is it a beautiful colour (Ice Blue), but it makes baking so much easier, as I was starting to find holding and using a hand whisk annoyingly tiring.  So now I can sit and let this do all the hard work.  It also has loads of extra tools and gadgets that you can add on, like an ice cream maker and a sausage stuffer so I feel this may feed my gadget hoarding gene too.   Watch this space for, hopefully, a bit more regular blogging...

Oh dear...

... I've not been a good blogger. No posts for over two months-opps. To be honest tho, I've not really had very much to blog about! Work wise its mostly been alterations- which are not exactly exciting! Otherwise, my life seems to revolve around far too many courses of IVs - including the last eleven days being incarcerated in Papworth's CF Unit.  My health really has gotten a bit pants. I've been having IV's every four weeks sometimes only every three, and its not exactly an exciting fun thing to blog about. I'm not one of those bloggers who want to blog every tiny aspect of their lives, as most of the time I find it very hard to believe that anyone would be interested in the banality of my medical regime!  I could go into great detail about my IVs and all the tests I've been having and the problems of being in hospital, but quite frankly it bores me so I doubt anyone else wants to know! All I really want to say about my health at the mo is that it is crap, I have to take too many drugs, but it is sooooooo good to be out of hospital! I was getting serious cabin fever in there!

Another consequence of all these damn drugs is that I have had to cut right back on work. Making sure I hit deadlines has resulted in my having to work when I am on IVs which is really not ideal. Not only am I tried but  my brain is all drug addled so even simple jobs take a lot longer. Worst of all it is very stress full! The last thing I need these days; the consequences to my health really are not worth the money I may earn... So once again, my health is forcing me into changing my life in big ways I don't want. I haven't quite worked out what I am going to do but I am going to have to 'Adopt, Adapt and Improve!'  Suggestions on a postcard....

Port Love!

It may have been a bit traumatic getting my port into me, but my God it is a marvellous thing! I've been having ivs for a week now in an attempt to regain some lung function and get me a good summertime, and it is soooo much easier than faffing with a long line. There was no digging about in my arms trying to find a vein that works and would take a line and I don't have to spend two weeks with one of my elbows basically immobile, as that was the only place that lines would work. It took two minutes to pop in a needle and hook me up!! Brilliant!!! It hurts a little when the needle is inserted but nowhere near as much as having a long line inserted. Also it stops hurting practically immediately- bonus! I am also taking ciprofloxicillin which I could not take through a long line as it makes my smaller veins stop working, so hopefully this will really help with the bugs as they have not been hit by this antibiotic for ages. It is also wonderful being able to bend my arm whilst taking the drugs. I can even play the piano whilst hooked up! Sadly the drugs have not dramatically improved my playing...! All in all I am a total port convert, so if anyone out there is thinking of having one I say- do it!

CF Week

From the 8th to the 14th of May is Cystic Fibrosis Week run by the CF Trust. As part of the week they have set a target of getting 10,000 more friends/followers on Facebook and Twitter in the hope of raising awareness about CF and reaching new people. They also want people with CF to post/blog/tweet about their life with CF, so this is my blog post.  Here are some basic facts about CF (people who have read my blog before will probably know them already but it doesn't hurt to read them again!)-

• Cystic Fibrosis is one of the UK's most common, life-threatening inherited diseases.
• Cystic Fibrosis causes the internal organs to become clogged with this sticky mucus attracting infection and making it difficult to breathe and digest food.
• People with Cystic Fibrosis have to undergo a tough daily treatment regime including taking dozens of pills, inhaled and intravenous drugs and physiotherapy.
• During Cystic Fibrosis Week, five babies will be born with CF and sadly, two lives will be claimed by Cystic Fibrosis.
• Only half of those living with Cystic Fibrosis are likely to live past their late 30s.
• There is no cure for Cystic Fibrosis.
•  Money raised during Cystic Fibrosis Week will help the Cystic Fibrosis Trust continue to fund medical research to fight the symptoms of, and treat the cause of Cystic Fibrosis. It will help the Cystic Fibrosis Trust improve the care of people with CF, and will help provide direct support for people with Cystic Fibrosis and their families.

On a more personal level, I thought I would post a copy of my repeat prescription, which runs to four pages these days.  From this rather long list can see just how many drugs I actually take or use every day, and this is on a good day...

Pills-
Creon 25000
These are enzymes to digest the fat in my food. As my pancreas is screwed I don't get them naturally. I take 6 pills with an average meal and 2 with snacks, so it totals about 24 a day.
Azithromycin 250mg
One pill a day, antibiotic and gunk reducer!
Citalopram 20mg
Antidepressant-pretty self explanatory, but without it I am an emotional wreck.
Itraconazole 100mg
Two pills twice a day. Antibiotic fungicide to combat Aspergillis (nasty fungus) growing in my lungs
Flucloxacillin 500mg
One pill twice a day. Antibiotic to damp down the bugs in my lungs.
Carbocisteine 375mg
Two pills twice a day. Not sure of the technical name for this but it thins the gunk in my lungs making it easier to cough up.
Omeprazole 40mg
one pill twice a day. Strong antacid for digestive problems caused partly by CF and partly by all the other drugs...

Inhalors and Nebulisors
Qvar 100micrograms
Two-four puffs twice a day depending how chest is. Steroid to combat inflammation of my lungs
Tiotropium 18micrograms
One puff a day.  Bronchiodialator acts on the small airways of my lungs to keep them open.
Serevent 25 Micrograms
Two puffs twice a day.  Brochiodialator (like ventolin but stronger)
Ventolin 100micrograms
As needed when I get wheezy.
Colistimethate Sodium 2 million units
Nebulisor solution twice a day. Inhaled antibiotic has to diluted by me with 2ml of sterile saline per vial. Used for a month in turn with-
Tobramycin Nebuliser Solution 300mg
Nebulised twice a day for a month-tastes awful but works.
Mucoclear Solution 6% hypertonic saline
Nebulised salt solution to thin lung mucus, once a day. This is just soooooo salty-but it does work so I do it...
Salbutamol Nebulisor solution 2.5mg
Nebulised ventolin used once a day to open up lung airways to allow the hypertonnic saline to penetrate lungs as much as possible.

Diabetes treatments
Novarapid Penfill cartridges
I take insulin with food, the amount I take is dependant on the carbohydrate content of what I am eating. This means I have to this out before I inject myself... this is annoying!
Aviva Test Strips
Strips for my blood sugar monitor
Multiclix lancets
Needle for the stabbing device so I can use said monitor.
Microfine needles 4mm
Needles for injecting insulin-they really are tiny so it doesn't hurt-unless you do it wrong and hit muscle...


So that's my everyday medical regime. If I want to go away for a weekend all this stuff and paraphernalia has to come with me... including the nebulisor and all its components-it all takes up a lot of suitcase space! Not to mention the fact that if I am ill then I will have to take intravenous drugs and that adds a whole new dimension to the regime, as most of the antibiotics come in powder form so have to be reconstituted by me. The number of needles, bottles of saline, water and syringes that fill my house during IVs is huge! And that is not including the antibiotics themselves and the hepsal flush (dilute heparin solution) that you have to do after each dose to keep the line open. I really am a walking pharmacy!

This regime is my life-every damn day, and I know that the regime will not get better, that my lungs will not get significantly better and that I will always have to take these drugs. The individual doses or pills may change from time to time but this is the way I have to live if I want to go on living for a reasonable length of time.  Please think about supporting CF Week -you can join on Facebook here. Or there is more info about it here.
(I think that this info is all correct and that I've got the reasons I take the various drugs right-if you know that I've spelt a drug name wrong or got the explanation of what it is wrong, don't make a smart arse comment please. I take them and that's what matters.)

Decisions

I've finally been forced to decide whether or not I need a port (permanent iv access) and in the end the decision was rather obvious. I've not been having a good time with my lungs since about September. I've needed IV drugs about every six to eight weeks, and getting access to my veins has not been easy. Last line took three attempts to get it in...not my idea of fun! So having finally agreed with the docs that actually I do need one I've bitten the bullet and said yes. Hopefully this Friday will be port day, assuming they can find me a bed. The proceedure will be followed by a couple of weeks of antibiotics, and also a new anti gunk drug (whose name is unpronounceable) that is designed to open up my airways and get all the muck out- let's hope it works! This drug is only used as an inpatient treatment as you have to have it as an infusion which runs continuously 24 hours a day. So sadly I will have to be incarcerated in Papworth for a few days at least.... How boring! However, the advantages of getting a port will hopefully out weigh the boredom and the discomfort of the operation- no more being a human pin cushion, no more not being able to use one arm for the length of an iv course and being able to use more drugs that my little veins could not handle. Hopefully this will all result in an improvement to my lungs and a much less grumpy Ros during IV time!

Edit
Port op postponed until friday the eleventh...sigh.

New year, new look, same old health.

As you may have noticed my blog has changed a lot recently. This is due to the redesign of my website by Mr EB and making my blog match the new design. I am so pleased with the new site, it's much sleeker and more elegant. Evan better it now has my hats on it, although I am still in the process of photographing some of them and doing their write up. If you would like to have a look at the new website it is here. There are still a few sections to add blurb too and I want to take some more photos of some of the hats, but it is such an improvement.

Sadly, the new year also started with a brief but very annoying stay at Papworth. I've had a nasty cold that descended and stuck on my lungs for a few weeks, but I had managed to get through Christmas and the new year with oral ciprofloxicillin to damp down my ongoing infections. Sadly, when I finished this course it was pretty obvious that I had not recovered particularly as I was so productive it felt like my lungs were full of glue. So I finally admitted that I needed the big strong iv drugs. Typically for me I managed to time this perfectly with the bank holiday so there were no regular clinics and they had to admit me to start me off on the ivs. Even more annoyingly the cf unit was full so I was on a general chest ward. I did have my own room thank god, but being outside the cf unit is so annoying. Te staff really don't seem to realise that vie been dealing with ivs for probably longer than they have and i don't need to be taught how to administer them, or assessed yet again! I actually realise whilst chatting to one of the non cf chest docs that I've been doing ivs on and off since I was 16, so rather depressingly that is practically half my life and certainly longer than the very nice but very young nurse who was looking after me. I could probably administer the ceftaz and colomycin in my sleep I've had them so many times. Also when they finally discharge you they give you loads of bits of paper saying what they've done to you over the admission for you and for your GP, I never get those at the unit they just send them automatically to the GP and they assume I can remember what happened!

It is also so annoying that as soon as you are admitted into hospital the nurses immediately take all your regular medication off you and shove it in a locked cupboard that you can't open. Clearly as soon as you are admitted you become far too dumb to carry on taking the meds that you've been on for years and have to be given them by a trained professional... they do this in the cf unit as well, but at least they have the decency to apologise for being forced to treat you like an idiot! Next time I get admitted please let me be on the CF unit!!!

Crashing and burning....

Well I can't say I am surprised, but I am back on the IV's.... Going by my annual review results and my CRP levels (the level on infection markers present in your blood) for the last few months it is pretty clear that I have been harbouring some nasty lurking infection for quite a long time and never quite completely squashed it with past antibiotics.  Last Wednesday was my annual review results and whilst some things were good-liver and bones are in particularly good shape, my lungs are definitely on the decline and Dr Barker suggested we recheck my CRP levels and then consider IV's this week so that I would not miss Rich and Josie's wedding.  My levels were indeed up to 33, which is not that high (below 15 is ok) but it has been at that level for ages and it is not a good idea to let it linger.  Sadly, my lung function today was down to the lowest it's been ever, which is not that surprising as I am feeling really rather rubbish at the mo.  Today my tests showed that I have less than 50% of what I should have (both the FVC and FEV1 tests). That's  sort of like saying I've only got one working lung!  This is really not good!!!

The Doc's seem to think that I should recover back to my usual 65%, but I am not happy at all about this drop-to put it mildly...  So now I have the dubious pleasure of trying to do two IV drugs, Tazocin which I've had before and Imipenum which is a new one for me, but has to be taken four times a day!!! This means every six hours...when am I going to sleep! Combined with the fact that tazocin is three times a day, so every eight hours...well you try making those two fit together without ending up permanently being attached to a drip stand! I'm going to have to cheat a bit and try and stretch the numbers to make it bearable and so that I get more than four hours sleep in one go-wish me luck!

National Transplant Week!

Today is the start of National Transplant week, and as this is a very important issue to me I thought that I would follow the example of several of my friends and do a blog post about it.  One day I may well need a double lung transplant due to my CF so I am always keen to raise awareness of the shortness of donor organs. To start with here are a few facts about organ donation:

• You are more likely to need a transplant than become a donor.
• You can donate kidneys, liver, lungs, heart, pancreas and small bowel - saving up to 9 lives
• Corneal tissue can give someone eyesight
• You can choose not to donate particular organs/tissues
• 94% people agree with donations, 96% would accept an organ - but only 28% are on the register
• 8000 people in the UK are waiting for transplants but less than 3000 are carried out each year

I've always found the figures about transplant rather depressing.  I know that so many people when asked say "yes I would donate my organs"  -so why are they not on the list???? I really get annoyed when people make daft excuses, like they've not got round to it yet...Well why not???? It is so easy to register and takes just a few seconds to register online. Here is a link if you have not already registered-

http://www.uktransplant.org.uk/ukt/

You could also consider donating blood, without which many operations, including transplants, would not be able to take place.  I have several friends who have received transplants and when you see just how much difference a new organ can make to someones life then you would not hesitate to join the register. Even tho some of my organs can't be used for transplant (for obvious reasons!) I'm still on the donor register as someone who needs them is welcome to the whichever of them can be used, when I've finished with them or course...

If you are wondering whether or not you should join the donor register then just ask yourself one question- Would you accept a transplant?  If the answer is yes, then you should join the register. It is not exactly ethical to accept someone else's gift if you are not prepared to be generous in return.

Bloody lungs!!!

Literally, sadly... I really do not get my stupid lungs.  I finished the IVs about three weeks ago and was feeling much better-hurray! Then last weekend I go and have a bleed. It was not a big one and I can at least understand why it happened-vaguely... I had been working quite hard and maybe I'd gone a little nuts in the cleaning of Mr EB's house and had probably overdone in general and so my lungs reacted.  So, I took my usual action, iced water (helps clot the heamorrhage) tranixamic acid (a coagulant) and onto the Ciprofloxavioin pills just in case the bleed is a sign of underlying infection.  Now in this instance, I don't think I had got an infection; I wasn't showing any of the symptoms (increased sputum, temperature, achy joints etc.), so I really thought the antibiotics were just precautionary. However, this evening pop, lung goes again! This time I really don't get it, I've had a bit of a cough but frankly what's new! I've not been feeling ill and I've been being remarkably sensible and not overdoing it, so clearly my lungs are just trying to ruin my weekend and stop me having a life. Grrrr!!!! Thankfully the bleeding has subsided now, so on Monday I shall be ringing up Papworth and demanding explanations...

Back on the Big Drugs

Well, it was inevitable that at some point I was going to end up back on the strong IV drugs, but I had been hoping to last longer than three and a half months.  Once again it's back to the good old rather too tried and tested Colomycin and Ceftazadime three times a day for at least two weeks. I make no apology for mis-spelling any of the drug names in this post as to be honest they all seem to be deliberately complicated!  Being back on IV's is very annoying and dull, but it has to be done as the oral Ciprofloxacilin was just not working and I've been in a lot of pain from my damn lungs not to mention coughing up gunk that resmbles toxic waste-nice! 

One slightly worrying thing is the rather large number of drugs that I can't take intra-veinously as I am allergic to them. I can't take Astreonam or Fossfomycin cos they make me projectile vomit, Meropenum affects my white blood count, Tobramycin IV affects my hearing and balance, etc etc etc.... I'm really down to these two I am on now plus Tazocin, if I want to do the drugs at home.  If I were to try Imipenum then I would probably have to be admitted as it can make you very sick and they like to monitor you whilst you are on it.  Now I am not the kind of person who likes being admitted for 2 weeks, to be honest I don't like have to spend the best part of a day at Papwroth just for a checkup... so I am not keen on this option. Another option is to get a port fitted (ie permanent access) which would mean I might tolerate some of the drugs better, particularly the Cipro as the main problem I have with that is that it inflames my veins and then they stop working. Although I am not keen on having a permanent reminder of my CF and I don't really have IV's enough to justify it yet.  However, by having a port the drug would be injected into a much bigger vessel so get diluted much more quickly and hopefully not irritate my veins.  In fact, this did work quite well when I had  PICC line (peripherally inserted central cannula-I think!) which like a port goes in a much bigger vessel but is only temporary like a line.  Thing is the only time I had one of those it sodding hurt to have it inserted so this is not a pleasing idea either!  In any case, I am just hoping that some clever doctor comes up with a new wonder drug that has no side effects and makes me feel loads better really quickly... fingers crossed I suppose!

Bah Humbug!

I'm back on the IV's again..... How very, very dull!  I've had this really annoying cold since before Christmas, which despite Ciprofloxicilin pills, would not go away and had started my lungs bleeding again, not very much just somewhere in there is weeping gently and it was not showing signs of stopping.  So I've given in and decided to be sensible before the bleeding gets worse and more serious, and took the Doc's advice, and have started on the big strong drugs.  Sadly the stupid end of the IV line which I think is called a BioConnector (it's the bit you shove the syringe into) broke this morning.... Instead of resealing when you remove the syringe it left a small hole and this resulted in the line leaking! Not a lot but enough to be not very helpful and a risk of infection.  So we tried to get a replacement from local GP's but we had to goto Papworth in the end- 45 mins there and back to change a small piece of plastic that took 5mins to replace and that if I'd had one I could have done....grrr! I've never had this happen to me before and I've been doing IV's ever few months since I was 16, so that is quite a lot or experience! 

One good thing that has come of this IV course is that I've finally managed to see WALL.E :-) I've wanted to see this for ages, and the lovely Simon came to cheer me up and brought DVD's including my new favorite film! (Lots of brownie points for Mr EB) I know it is incredibly cutezy, but its also so funny and I love the fact that he is obsessed with Hello Dolly as that is another of my favorite films! Every cloud has a silver lining....

Important please read!!!!

As I write this a wonderful girl called Jess Wales desperately needs your help. Like me she has CF but she is in the end stages of the disease and needs a double lung transplant to survive. Her friend Emily Thackary, herself the recipient of a double lung transplant and chair of Live Life then Give Life a charity to raise awareness of organ donation, has started an online campaign to increase awareness of organ donation in the hope that this will help Jess-see the story on Sky News here-

http://news.sky.com/skynews/Home/UK-News/Jess-Wales-Fights-For-Life-Organ-Donation-Supporters-Launch-SaveJess-Twitter-Campaign/Article/200909415386045?lpos=UK_News_First_Home_Page_Feature_Teaser_Region_0&lid=ARTICLE_15386045_Jess_Wales_Fights_For_Life%3A_Organ_Donation_Supporters_Launch_%23SaveJess_Twitter_Campaign

If you are not on the organ donor register then please sign up and help save someones life. It is very easy and can be done online here-http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/how_to_become_a_donor.jsp