65 Roses?....A beautiful way of saying Cystic Fibrosis, however does not make CF any more beautiful. My wish is to be standing untarnished, unbreakable, breathing easily.... A blog that is about my day to day life, as well as trying to cope with my illness Cystic Fibrosis. There will be no hold backs just me...out in the open, hope you enjoy! xXx

Friday, 23 December 2011

Burger Eye

'Burger eye'
Something my sister says if i have been crying as my eyes get so puffy the top lid looks like a hamburger bun.
I have a serious case of burger eye today!!
I cried for 2 hours solid this morning, just a few silent tears at first that lead up to great big sobs, most unattractive. A snotty nosed, coughing, spluttering mess.
I cant really even pinpoint what started me off. I was just sitting drawing up my IV's, my ears started tingling with the pressure of holding back the tears then they fell so heavy that i couldn't see what i was doing. I cant really even tell you why i was crying, even now?!
I think it was a build up of worry, fear, frustration, exhaustion, sickness and stress that just somehow needed to be released , it came over me really quickly, its like my sub conscious mind had opened its gates and let my thoughts fill my conscious mind.

I realised how close it was to christmas and how some of my gifts hadn't been delivered and how some people may go without as i left it to late to order presents online.
As most of you know i was in hospital on the lead up to Christmas so had no time to go to the shops. Before i knew it, it was the 20th of December and i hadn't even gotten round to ordering anything online. Its like the last few weeks had been slept away in illness. Christmas totally being forgotten about in the haze of ill health, Antibiotics, lung function, x-rays, blood tests, feeding, physio, Drs and psychologists meetings, plans for my future health and most of all my own worry!!

I'm usually very festive, i love making gifts. Cookies, Cakes, Crackers, Shopping for the perfect gifts, spending hours wrapping, tying ribbons bows and bells are just a few things i spent all of December doing. I love to see peoples faces when they get there gift i love personalizing things, but this year was so different. I hate the fact that i have to hand people a present that i have ordered online, not something i have touched or smelt and picked. There is something different for me picking it from a shop , just seeing a picture on line to me isn't what Christmas is about i love searching for the perfect presents.
I know my family understand why i haven't put as much time in to Christmas this year and to be honest they probably dont even care, but there is a small part of me that thinks when Christmas is all over someone may have a quick thought that i just didn't care about them as much this year. I really am worried. It makes matters so much worse that some of the gifts have not been delivered yet and id be heartbroken to turn up with nothing on the day, instead just a promise something is coming.
I have no food treats for anybody not even a card. Tomorrow is Christmas eve and i have so much to do. I dont even have wrapping paper to wrap what presents have turned up. So between 3 lots of IV's and family visits i need to find the time to get to the shop to get cards and paper and try to salvage my lack of effort :/

Of course all of this is down to my deteriorating health and there is not much i can do about it. The whole prospect of my poor health is still overwhelming me and im happy to leave it locked in the back of my mind for now until Christmas is over. I want to enjoy Christmas and my health worries are just something i cant yet deal with or talk about. Not without getting upset and in a muddle. I dont know how to put it in to words so for now i will leave that chapter closed, at least until my mind works out what to do with it all.

I hate that this is not a happy blog what with it being 2 days before Christmas, i wish it could be saying how well i am and how great i feel. Not only do i wish i could say it i wish i could actually feel it.
I hope you do all have a wonderful Christmas and i hope my moaning hasn't pee'd all over your festivity.
I'm sure my Christmas will be just fine and all my worrying will be shown to be pointless. Christmas is about family. I will be with them all at home, instead of being visited in a hospital bed by them so for that i am grateful.

Hoping you all get what you wish for......

Thursday, 22 December 2011

What to say

I've not blogged in a few days, i am now home from hospital but continuing on iv's until Christmas eve.
I'm feeling very overwhelmed at the moment, my head is full of confusion over how things are with my health at the moment.
I will blog soon when my mind is clear enough to think how to put words together.

Saturday, 17 December 2011

IVAB's, Ports and a little update on moi...

I have spoken before about having IVAB's and my portacafe and always said i would explain what they were so i thought why im bored sat in hospital i would teach you all haha :)

A portacafe is made of metal and has a cork like center. It is a small dome shape that is inserted to my chest surgically, a wire comes off of the back of the which is fed through the soft tissues up to my neck where it then runs along side my artery ending near my heart.
None of this is visible to the eye as it is under the skin, all you can see are scars on my chest and neck where they make the incisions.
When i need IVAB's a needle is pushed through my skin in the softer part of the port where it meets the inside tube at the back of the port, this is when a tube that hangs outside my skin is visible. This 'outside tube' enables IVAB's to be administered straight in too my blood stream resulting in a much quicker delivery of drugs than if i was to swallow tablets, It combats the infection much quicker.
Ports are fitted in people who need extensive rounds of IVAB's. It eliminates the needs for cannula/venflons/long lines which are placed temporarily in a vein in the arm, if your veins are used to often they will collapse and no longer be any good or strong enough to have tubes placed in them.
Cf and cancer patients will often have ports as its a much longer term solution as ports last from around 5-10 years.
I am on my 3rd port. The first 2 lasted for about 8 years and im on my 4th year with this port and touch wood its still going strong :)

IVAB's or IV's are intravenous antibiotics, meaning antibiotics in to the vain, (through my port)
IV's are usually given as a general rule for 14 days however some people may have 10 day courses, but some people need much longer courses depending on the severity of infection. Unfortunately i fall in to this category and i often have a minimum of 3 weeks sometimes 4.
There is the option of doing home IV's bt you need to be trained on how to administer the drugs, now how to act in an emergency and most of all have the energy to take on the job as it takes a minimum of half an hour to administer 3-4 times a day. This is only an option if you are well enough to do yourself.
I am trained in home iv's but would usually come in to hospital for 2-3 weeks then when i feel better will finish the final week or 2 at home. IV's are very strong potent drugs and can often leave you feeling very tired as a side effect so this always has to be taken in to consideration.

The 1st dose of IVAB's will ALWAYS be given in hospital with your cf team as this is the highest risk time that you will have an allergic reaction to the medication, anything from a rash or sickness to a full blown Anaphalactic Shock, resulting in needing adrenalin injections, oxygen and blood pressure monitoring. Anaphalactic shock is very dangerous and can result in death if not treated. People have theses shocks to bee stings and peanuts most commonly and antibiotics are also a common cause of these shocks.
Luckily and i do mean luckily i have no drug allergies as if you shock to a drug you can not have it again, this is very difficult in cf as if this happens it narrows the essential medications you can have and there is smaller options of antibiotics available to you... so fingers crossed i keep my drug allergy's at zero :)

I am on day 7 now of my IVAB's and am feeling slight improvement. I had an exercise test yesterday. I can walk at normal speed for 6 minutes before my heart rate reached 140 beats per minute. Most people wouldn't reach this level until they had run at speed for 10-15 minutes. With a heart rate of 140 i was advised to sit down as anything over 130 is classed as training at intensity, although it worried me that i cant walk far i did have to laugh that atfer a 6 minute walk i had to sit down when most people can walk for hours without even reaching 100 beats p/m. My little walk had the same effect on my body as an athlete training :/ My poor little lungs :(
But with my lungs functioning at only 32% what did i expect the results to be?

I am meeting again with my consultant on Monday to discuss 'options' for my health and how to maintain it. I cant afford to lose much more lung function or my life will be limited even more than what it is....
So for now im concentrating on physio so i can walk for 10 minutes (that's my aim) and of course to get out of here for Christmas

Oh and just quickly my carbon dioxide test came back as normal yipeeeeeeee!!! But my overnight oxygen levels need to be repeated as i was awake most of the night so they didn't actually get readings of me being asleep, whoopsie! So that will be done tomorrow night...and i have gained another 3 pound so im happy today
Of to walk the corridors now lets aim for 7 minutes.......x

Friday, 16 December 2011

First of todays posts...

Today is Friday, so im on day 6 of my hospital stay.
I saw my consultant yesterday and after our chat i was feeling quite positive. My lung function has improved slightly, its gone from 32% to 36% which is what is was in clinic 2 weeks ago so i was pleased with that.

We discussed my fatigue and how we think it isn't entirely down to the infection.
The first thing to look at was the gas exchanges. Retaining carbon dioxide is very common in cf, it can make you sleepy and give you severe headaches which i also experience, so this morning at 6am the Dr came round and took a blood test from my wrist. Unlike normal blood tests that are taken from the vein, blood gases are taken from the artery (arterial blood) the needle has to go quite a lot deeper and its sometimes difficult to get a sample as the artery can be difficult to find, however i was quite lucky this morning and had an experienced Dr who managed to get the sample first time so not to much digging around :)
I also had a oximeter test over night to measure my oxygen levels when im asleep as it is common also for the oxygen levels to drop when asleep which would result in needing overnight oxygen. Its a simple test, just a probe on my finger attached to a small machine strapped around my wrist whilst i sleep. My physio is due to see me soon so will discuss the results with me, i am slightly worried as when i turned over in the night a few times i looked at the machine and it was only reading 89% was 86% at one point eeek :(

I am also waiting for another round of bloods to be taken. I am anemic and take iron supplements but they want to check im on the right dose as anemia is a main cause of fatigue. They will also test my thyroid function, then the normal kind of tests like infection levels, full blood count and a load of other stuff that i cant remember at the minute but basically a lot of blood is being taken

I have been feeding every night( a bag of what is like a milkshake is hung up, and dripped in to my stomach over 8 hours via a tube that goes up my nose, to the back of my throat and in to my stomach giving me vital calories firstly to gain weight and secondly to give me the energy to fight the infection) the feed im having is 2000 calories, on top of that im also on a sip feed (meaning i drink it instead of having it through an NG tube) which is 1200 calories and i need to make sure i drink all of it throughout the day, they are also encouraging me to eat which i am finding really difficult as i just have no appetite, im managing fruit and biscuits but struggle to eat a full meal once a day let alone 3, dad has been bringing me a hamburger most nights which i eat with bit of a struggle, but i have gained a kilo in 6 days so the feeding regime is defiantly working well.

I'm also having a liter of fluid at night, again for 8 hours and this is dripped in to a vein to keep me hydrated as im not managing to drink very much in the day either. Although its sometimes a pain feeding and being hydrated artificially it does take the pressure of to consume so many calories when i feel to poorly to eat.

Well my physio is here now so i will continue this post when she has left to tell you about the antibiotics im on, and 'the plan of action' to get my chest feeling better
Till then....x

Monday, 12 December 2011

Just Quickly

I got a bed in hospital Saturday, feeling very poorly and sleeping pretty much throughout the day as well as the night.
Lung Function as expected is down its 32% I have also lost 4kg in weight, so on a nice mix of antibiotics, high calorie tube feeding regime and lots and lots of intense physio.
Feeling far to exhausted physically and mentally to update properly but as soon as im feeling better i will update you all.
Till next time............x

Tuesday, 6 December 2011

Nose-Lung Its all the same here...

Following my last post i have been trying daily to add in at least 1 more physio session a day...the verdict is exhaustion!!

My sleep pattern is all over the place at the moment, i am again getting very little solid sleep, so i just doze throughout the day and night. Between sleeping im focusing my attention on Physio...I'm going to try and explain how it feels so excuse me if its just rambling on....

Most people are more likely suffered with a cold or flu instead of a full blown chest infection..so imagine the last cold you had, or watch the cold and flu remedy adverts. You will always see the peson with a red sore nose which they are trying to blow.
Do you remember that feeling of not getting any air through the nasal passage and getting more and more frustrated with each blow as it becomes harder, tenser, sorer through the pressure inside building?
Transfer these feeling to your lungs. You can feel they are full to the brim with gunk, you can feel it on your hand when you hold your chest. Its bubbling away gurgling against your hand almost like a baby kicking in the womb feels. As you breath in it sounds like you are blowing through a straw in to fluid, a loud bubbling sound.
At the end of the bubbling there is a crackle like the old sweet stardust popping on your tongue. I'm taking short sharp breaths as the air will not move past the mucus to the lower airways, I'm trying to pull some air in to my lungs as the force of air will rattle the mucus off the lungs lining making it easier to move.
Only its not moving i dont have enough strength to get a good enough flow of air so im only breathing in to the top part of my lungs so the mucus below it is just stuck solid.
The nebulisers im taking designed to thin the mucus aren't doing the job properly because i cant breath it deep enough in to the airways. I'm just coughing and coughing where my airways are inflamed and sore like the guys nose in the adverts.
My back and shoulders are tense and the muscles are aching. My stomach feels raw from the retching i cant be sick though as my stomach is empty iv not eaten anything yet.

Its so hard to do this over and over each day, and it feels there is no end in sight when your team are telling you they are full and have no bed for you, they cant even give a rough idea on how long the wait will be, will it be later today, tomorrow, next week, i dont know how long i can 'just cope'? im so tired after one session i sleep then food and exercise gets forgotten about. Its just a daily cycle until they get a bed.

I'm going out for dinner with my friend tonight so im going to stop physio now and have a sleep so i feel energized for dinner tonight, im very much looking forward to seeing Jennie and stuffing a steak down my mouth :D Lets just hope im not to breathless to eat again as im so hungry.....

Sunday, 4 December 2011

Exercise Exercise and a Little Learning ....

I went to sleep last night at 10.00pm. I woke up today at 12.45pm this afternoon....And i do meant slept!!!
Its not uncommon for me to be in bed for that many hours but to actually be asleep for that amount of time is shocking, im usually woken up 3-4 times a night by an angry chest, I'll wake up coughing, or in pain and twitch myself awake, or wheeze loudly or just to pee.
Each time i wake im usually up for a good half hour coughing and trying to get in a comfortable pain free position.
But last night i well and truly had a much deserved SLEEP!! Still exhausted from Fridays clinic followed by a restless nights sleep Friday, questions still filling my head i think my body was well and truly exhausted. I felt amazing for the sleep!!!

After the usual routine of morning medications, physio and a nice hot bath to soothe my muscles i met Clare in Starbucks for a lovely much needed caramel macchiatto, when id got there she had already ordered my drink and managed to get the comfy sofa :) She always manages to get it, she just stands over the people on it and they eventually leave, shes a sofa bully lol :) It was bloody freezing out so i got comfy with my legs tucked under me while i snuggled in to the heat of the coffee...Mmmm was yummy!!!

My lovely clarebear really cheered me up today and she probably doesn't even know it. We sat for hours in Starbucks discussing our health, how hers has come on leaps and bounds as she has doubled her lung function over the last 2 years through sheer hard work and determination.
She was my 'sick' friend for a long time, i was the one with great lung function with an active social life while she struggled day to day to do minor jobs just as i do now. We were laughing at the complete role reversal between us as she now has my lung function and i have hers.
It was fun reminiscing but a part of me felt sad for my past health, i felt like the girl i was 2 years ago was long gone and buried, like i would never have her smile, her zest for life, her social life, her bright eyes. I almost mourn her as i do feel sometimes i will never be her again and the ghost of my former self is slipping further and further from my memories.

As we were sitting there we spoke of clares blog which she has kept for 3 years now, i sat and read from the first one she ever wrote last night, to the current day. I cried and laughed throughout. It was horrible remembering how she was so ill, spending weeks in intensive care but it was the 'norm' for her and although every time she went there it was horrible to deal with, it was never a shock to me it was expected. I never expected her to be alive now, i prepared myself many times for her death but each time she managed to claw back some strength to fight.

I look at her today and she makes me so proud, i love this girl more than i can explain, she is my best friend, the kind of friend who knows me in and out she doesn't need to ask how i am she just knows, shes caring and is always there for me, shes like another sister to me..shes my hero and my inspiration....
Inspiration really being the key word, i watch her strength day to day and admire how she has turned her life around, she makes me feel i can do it to.
So as i sat mourning for the healthy girl i once was i almost started to mourn for the sick girl i am now, mourning in a good way because i know i have the strength to somehow try and make a better life for myself too.

I would love my lung function to stay at 48% which is what it normally is after iv's.
A lot of cardiovascular work will help the elasticity in my lungs which in turn will mean they are stronger so when infection does hit it may mean my lung function may drop to early 40S not 30's

I have never been afraid of admitting i am a complete gym-a-phobe!! i hate the gym with a passion so cardiovascular exercise is quite hard to do...i love to swim and i love yoga, i love going out on my bike (in the summer) and walking with my dogs so i need to find a way of getting my heart pumping more with the exercise i do enjoy, then maybe once my overall strength has improved i will tolerate the gym better. Its a small step towards the right path but i am positive.

In clinic Friday, as i said, i felt quite bullied. My Dr was saying she is happy with the way i respond to treatments in hospitals but worries at how quickly i decline at home.
At first i felt she was questioning my compliance which upset me so much as a few years ago i was very neglectful with my treatments and was very honest with my team about that fact, but my lungs were in better condition then and infections wouldn't affect me as much as they do now.
As most of you know cf is a degenerative condition, meaning that over time your lungs will inevitably get worse resulting in lung transplantation. You can never stop that process as it is the nature of cf and cf is incurable. However there are ways to slow the decline. Exercise and compliance with all treatments being just 2 of those factors.
So as i can honestly say my compliance is nigh on 99% of the time i feel that exercise and a more structured daily physio therapy plan is the only way for me to go now if im to avoid a transplant in the next few years.

Now for a little CF lesson.....

Getting sputum off of my lungs is so important, as my lungs and airways do not shift mucus naturally from the airways. This is due to an imbalance in the bodies natural salt and sodium movements.
The mucus gets trapped in the airways allowing a perfect breeding ground for them germs to feed and bread.
So basically if the sputum in the lungs is moved out and along the airways to the mouth where it is swallowed or coughed out the less there is for the bugs to breed on.
In a 'normal' or healthy body this happens effortlessly and mucus is moved perfectly from the lungs by the CILIA (small hairs that move in a wafting like motion inside the lungs and airways) in to the mouth where it is then swallowed without you noticing.
This process in cf does not work hence the build up of mucus in the lungs resulting in infections, which in tern create scar tissue which is concrete like.
Once it reaches this stage it is irreversible. Lung function will drop and the lungs shut down where the scarring is making the lungs smaller and smaller...so you can see why clearance of the chest is so important.
Anti biotics kill a lot of the bugs but alone will not work and has to work hand in hand with clearing mucus to be most effective.

As i am on maximum doses of the drugs i take, i know the only thing that will help me now is more physio to clear my chest.
This responsability falls down solely to me. I can get support and advise from my team on how best to do this but really it is only me that can do it.... so i know this is where i need to focus my attention now.

When i am admitted next week i am sure to spend enough time with the physios to help me with a structured but manageable plan for me to continue at home.
The physio regime you have in hospital is not realistic at home, as you do not have all day to do 3-4 sessions a day.

Physio and exercise in the hospitals gym is the thing that works amazingly well for me in hospital, so i know it is the thing lacking at home which is resulting in such fast declines.
Proving that medication alone is not enough.
Its the thing i need to work on most.
I have faith in my physiotherapy team and know we can come up with something viable once home.

I'm willing to try anything to help get me back to the girl of 2 years ago..i miss her!!

Saturday, 3 December 2011


So as you know i met with my team at the LCH (London Chest Hospital) yesterday, it was probably one of the longest days i have had in weeks...physically and mentally draining and tiring!!

First one of the team i saw was sajel, the psychologist, over the years i have built up a very strong relationship with sajel. I trust and rely on her very much she really is a lovely person to be able to talk to. She simply asked me how things were, i said not to good and instantly burst in to tears, i was so overcome with emotion at having to now talk about and deal with my fears with somebody, i spoke about my growing concern for my health.
Keith the pharmacist was also sitting in on our session. He works extremely closely with sajel and patients to help find ways to make treatments easier even if it is suggesting a different form of medication if you struggle with taking it. They are there to help with everything you need even if it is just that you dont like the taste of a certain medicine, they will offer an alternative where possible to help you adhere to the medication regime.
We discussed the steroid based inhalers i was on and made a few changes that he thinks will help me. After speaking with Keith and sajel for half an hour i felt like a bit of the burden had been lifted already.

Next to see me was Charlotte the physio, i expressed to her the difficulty in clearing my chest and she tried to help me with more physiotherapy options and how best to keep my energy levels high enough to be able to do a good 2-3 sessions of physio a day, however we didn't hold out much hope of my energy levels improving why this infection is lurking.
She is going to speak to a colleague who specializes in extreme fatigue to see if they have anything that may help me.
Whilst talking to Charlotte i couldn't stop looking at the lung function machine she had wheeled in with her, i was dreading doing it a part of me just didn't want to know the results but i knew it had to be done...36% Absolute crap!!!! She took a sputum sample and next up to see me was the SHO (Senior house officer)....

Well the meet with her didn't go to well at all. When she came in she first remarked on how tired and drained i looked, i simply said i was! the day had already been long, crying with sajel and coughing so hard from lung function with Charlotte i was about ready for my bed, i felt deliriously tired i couldn't think straight and find answers for what she was asking me.
She was firing so many questions at me so quickly, not giving me a chance to answer between questions then was left feeling confused when i tried to answer the 1st question why remembering the rest, she was slurping away on a can of lilt which i found so annoying, i dont know why?! i was just irritable and the sound of her slurps was doing my head in.
Trying to find answers to her questions, questions like, so how do you know when your ill? what tests do you do? do you know you have deteriorated? why are you so tired? this isn't normal, do you feel normal? spilling out of her mouth at 100x an hour was making me feel like i was on question time and there was a clock ticking and i had to answer them as quick as i could before she moved on to something else, my head felt fuzzy by this point.
She was then basically saying i needed to go in to hospital and it needed to be soon but until they had a bed then i had to do home ivs 3x a day, i tried to explain to her that i was just to exhausted to take on the extra burden of more treatments when i felt poorly. She couldn't understand why i couldn't do it and proceeded to tell me that the drop in my lung function, and the way i appeared at clinic was worrying...so how did she expect me to be drawing up and injecting up to 20 syringe fulls of medication a day?!!
I felt bullied by her, like i wasn't willing to help myself and that i was being a pain, again i tried to explain to her that i COULD NOT do this without the support from the team at home on my own but she wasn't grasping what i was saying and felt she was getting more and more annoyed with me, i cracked and started to cry and started shouting saying to her 'you are telling me how ill i look and present, you are telling me my lung function is a worry, you are telling me how exhausted i am needs help,... but you are telling me, not asking me to take on more medication that will exhaust me more, that i was in need of rest and support. She left the room in quite a huff and come back a few minutes later with my consultant and the cf nurse specialist mark. They agreed i wasn't well enough to do ivs myself but were adamant i needed them before Christmas but as it was the weekend they could not get me a bed so admission is now planned for next week.

SHO's move around from hospital to hospital, unit to unit for years until they decide what field of medicine they want to specialize and become a registrar in, so they only get a short time in one area of medicine and with the patients. I felt yesterday the SHO who saw me did not understand cf to well, maybe she didn't understand how tiring it can get and how often patients get ill and rely on their team. I truly felt bullied and belittled by her.
I'm sorry i shouted at her and got upset on the way home about it but i felt i had to get my point across to her to make her understand i wasn't being difficult i just couldn't cope!!
It can take years to build a rep-or with your team and they really do get to know you, they know how you are feeling and what you are capable of dong by just looking at you, im glad Dr Watson and mark did come in to see me as i was getting more and more frustrated.

So the plan for now i manage at home over the weekend to hopefully have a bed Monday where i will be admitted for IV (Intravenous anti-biotics) an Aminophylline infusion, which will help to dilate my airways. I will have overnight feeding and fluids to improve my weight and nutrition, a CT scan on my lungs is planned as it gives better images than a standard x-ray and a Broncoscopy ( A camera tube in to the lungs to get a better look at the damage inside the lung) may follow depending on the results of the CT.
So im hopefull things will improve... hopefully just before the new year so i can start the new year with a fresh bill of health and do the things i have planned