Where to start, i dont know?....
Less than 3 weeks off of IV'S and im feeling poorly.....again same s*** different day.
I feel the time to talk about transplant with my team is near. The more i speak to my CF Friends the more im convinced i am that the time to discuss my options seriously with the team is upon me.
I used to have IV'S twice maximum 3 times a year and i would feel amazing once the course was finished, but now i am having more and more admissions and the amount of time out of hospital between courses is getting shorter and shorter.
There are so many things i can no longer do, just to be able to stand for long enough to cook a meal or do the ironing or not need 3-4 hour naps if i go out for an hour or 2. My life is very limited at the moment and i have never been more aware of cf. It used to be such a small part of me now it dictates every single thing i can or cant do.
I am supposed to be going to the theatre to see war horse on the 26th and i am trying to prepare my body for such a long day, the traveling and the mere task of sitting upright for hours is something i need to train for...its crazy :/
I dont feel i can plan a future, not in any way at all. I do not know how i will be overnight or in the morning let alone next week or in a few months so booking anything in advance is now a possibility.
And if i do have an event coming up i need to make sure im fully rested before doing it. Everything is a compromise.
If i want to go shopping i need a lay in.
If the housework needs doing and i want to go and see a friend i have to choose which one i want to do.
I need to priorities, plan, think ahead and judge how long i will be out of the house and how long i will need to be awake.
Believe it or not i can only manage 4-5 hours at a time before my body craves rest.I know i shouldn't but i do truly envy girls of my age whose biggest question in their head tonight is what outfit they will be wearing to the pub tomorrow, or what pub they will be going to to get pissed, or how they will cope when they are so 'ill' the next morning with their hangovers. I remember when my 'ill' was a hangover...oh those were the days, oh to be 'normal'
I know i shouldn't envy or be angry but i am and i cant help it. Im angry at life, im angry at the questions i have to ask compared to others.
But then i hate myself for being oh poor me when there are people out there who have been dealt such harder cards than i have. I should shut up and just play my cards and accept them but i sometimes just cant help this anger especially when i see people running around planning their lives with there partners, booking holidays, trips, days out, motherhood, anniversaries when im not even sure i can do any of that again.
I should be happy for those who can and be grateful my loved ones will never a day in their life feel how ill i feel daily.
BITCH...I'm sure that will be some reactions i get to this post, ill accept that as i am a bitch who is jealous, an angry little person sat in her bed frowning at the world.
The green eyed monster is a terrible thing!
Will a transplant make me smile? The affects daily medication is doing certainly does not cut it. Will Transplant give me the certainty in life most people have or will it all go horribly wrong?
Life is such a precious thing, most people will never realise that and its such a shame as they do not realise just how amazing it is to make plans for the years, months, weeks or even days ahead.
Death will be a part of us all, that much is a given but when your fate is constantly thrust in your face it can be very daunting.
Many people who have had near death experiences will say they never knew how amazing life was and they will now embrace it with both hands.
I want to grasp life and embrace it too but unfortunately its not always that easy, dont get me wrong i DO try and live the best i can everyday but i wish there wasn't so many compromises and so much uncertainty....
I dont know what else i really can do to feel better each day....
CF is evil. It takes young lives everyday from people who fought everyday of their lives to breathe. Through no fought of their own they are faced with a daily concoction of medication just to live another year or to stop the decline in lung function.
No one can understand my anger, no one can understand my frustration, my fear, my panic and my plea with my own insides to make me feel OK, just OK...... just for a while
Is that to much to ask? am i justified in my anger? Should i even be angry? Should i just 'keep calm and carry on?......
Thursday, 12 January 2012
Tuesday, 10 January 2012
Daydream believer?....
38 per cent is my average lung function. It can peak to the 40's but only ever after IV'S and quite often plummets to 32%
I have been seeing my psychologist sajel for around 3-4 years now at my cf unit.
My last admission she came in to my room and asked me how i would feel should the conversation of a referral to the transplant center be bought up.
This took me by complete surprise at her asking me and my instant question was why? i wanted to know why she was asking me and if she had been sent in by my Dr to breach the subject sensitively. Her answer was no and that she simply wanted to know how all her patients feel about transplant as early on as possible, she said she would ask children the same if she worked in pediatrics. My reply was why are you asking me now then? if you like to know 'just in general' why was it not spoke about when we first met and over every meeting we have ever had.
I was and still am sure this is the way referral is breached. She explained to me that they sometimes refer people much earlier nowdays to give patients a better chance to come to terms with what is coming and to get all questions, fears and worries answered before they got so poorly they would need a transplant sooner resulting in not much time to have these questions answers.
Im not sure how i feel about transplant as its never been something i have truly thought about in detail or ever really see it has something i would need.
However over the last 6-8 months have found my mind wondering to the possibilities of having a transplant and what the outcomes of it are, the percentage of it being successful, am i ill enough to warrant even being listed.
To get listed is a very long drawn out, mentally draining process. It starts with an initial referrel from your cf team to the local transplant centre, mine would be the harefield. Once the referral has been sent you meet with the assessors who perform multipal tests to see if you are a good candidate for transplant, as to what the tests are im not entirely sure as this is all new to me but im guessing the main tets would be lung function, bloods, gas exchange, weight, quality of life and prognossis of life without transplant.
The whole process is very daunting. I know people who have had both good and bad experiences and outcomes following transplant but quite honestly its something that petrifies me. I cant sleep at night with nightmares of how it could go terribly wrong. Quite honestly i am a mess through the worry, i dont sleep, i dont go out, i cant socialize as i would like to. I feel locked away in my own fear with nobody to talk to. I shut the world out but equally i want to pull friends and family closer for help and support but wouldn't know what to say as my mind is still in a mess with all the fear and questions.
I'm very lost at the moment i keep thinking i will be fine and the whole transplant thing will just never be an issue, i day dream at night of how my life will be, i imagine i will wake up the next day jump out of bed make some coffee, get washed and leave the house as a normal person would do. I imagine me running the hoover round, doing some gardening, putting a load of washing on, walking the dogs, cleaning the car..... living. I believe it will happen and its the only thing i seem to smile about..my dreams..A daydream believer i guess!
But once im asleep my mind takes on a different persona and i picture me hooked up to wires gasping for breath or agony having being cut the length of my sternum to get these rotten lungs out of me, trying to talk through a Traci as im recovering, will i be strong enough, will i cope? do i want to? will the pain of recovery be worth it? will i breathe easily after? or will i die anyway?
I wake up in cold sweats and am then awake for hours panicking. Then in the morning im to tired for pancakes, im to tired to live. The daily regime of treatments and pain is my reality.
No dog walking, no basic day to day living like most people, to tired to get out of bed, to tired to get fresh air. When i do go outside i feel like a tiny person in such a big world its noisy and busy and quite daunting. I dont know where to go, I dont know where i belong... so i go and hide in the safety of my bed again, the same bed that is also my prison. I dont know where i want to be or what i want to do.
The idea of living normally is just a daydream. To get up in the morning, go to work, go food shopping, mix in the outside world is like a foreign world to me i dont feel part of life anymore.
I have nothing to talk about with anyone as not much happens in my bedroom and what goes on in my sub conscious mind is to daunting to speak about so i say nothingWould a transplant solve any of this, would it give me the strength and the health to function, to go outside, to get a job or go shopping without feeling worried and scared. Will it solve my fear of what may happen, will it give me a lease of life to go to college and do the things i want to do?
Or will the transplant not work, will i die on the table, will my body reject the new lungs, will things be no better even after i put myself through such major surgery..
Will i even get listed if i go for a referral? Do i want to be listed?
I have said in my last few posts my mind is scrambled and i think by reading back on the post i have just written it is still very scrambled. I dont know how to start to unscramble it. I dont know who to talk to, or what to say, being opposite someone speaking words seems so much harder and all the more real than thumping at the keyboard as my feelings come spilling out through my finger tips.
I'm just so lost....I dont know what else to say
I have been seeing my psychologist sajel for around 3-4 years now at my cf unit.
My last admission she came in to my room and asked me how i would feel should the conversation of a referral to the transplant center be bought up.
This took me by complete surprise at her asking me and my instant question was why? i wanted to know why she was asking me and if she had been sent in by my Dr to breach the subject sensitively. Her answer was no and that she simply wanted to know how all her patients feel about transplant as early on as possible, she said she would ask children the same if she worked in pediatrics. My reply was why are you asking me now then? if you like to know 'just in general' why was it not spoke about when we first met and over every meeting we have ever had.
I was and still am sure this is the way referral is breached. She explained to me that they sometimes refer people much earlier nowdays to give patients a better chance to come to terms with what is coming and to get all questions, fears and worries answered before they got so poorly they would need a transplant sooner resulting in not much time to have these questions answers.
Im not sure how i feel about transplant as its never been something i have truly thought about in detail or ever really see it has something i would need.
However over the last 6-8 months have found my mind wondering to the possibilities of having a transplant and what the outcomes of it are, the percentage of it being successful, am i ill enough to warrant even being listed.
To get listed is a very long drawn out, mentally draining process. It starts with an initial referrel from your cf team to the local transplant centre, mine would be the harefield. Once the referral has been sent you meet with the assessors who perform multipal tests to see if you are a good candidate for transplant, as to what the tests are im not entirely sure as this is all new to me but im guessing the main tets would be lung function, bloods, gas exchange, weight, quality of life and prognossis of life without transplant.
The whole process is very daunting. I know people who have had both good and bad experiences and outcomes following transplant but quite honestly its something that petrifies me. I cant sleep at night with nightmares of how it could go terribly wrong. Quite honestly i am a mess through the worry, i dont sleep, i dont go out, i cant socialize as i would like to. I feel locked away in my own fear with nobody to talk to. I shut the world out but equally i want to pull friends and family closer for help and support but wouldn't know what to say as my mind is still in a mess with all the fear and questions.
I'm very lost at the moment i keep thinking i will be fine and the whole transplant thing will just never be an issue, i day dream at night of how my life will be, i imagine i will wake up the next day jump out of bed make some coffee, get washed and leave the house as a normal person would do. I imagine me running the hoover round, doing some gardening, putting a load of washing on, walking the dogs, cleaning the car..... living. I believe it will happen and its the only thing i seem to smile about..my dreams..A daydream believer i guess!
But once im asleep my mind takes on a different persona and i picture me hooked up to wires gasping for breath or agony having being cut the length of my sternum to get these rotten lungs out of me, trying to talk through a Traci as im recovering, will i be strong enough, will i cope? do i want to? will the pain of recovery be worth it? will i breathe easily after? or will i die anyway?
I wake up in cold sweats and am then awake for hours panicking. Then in the morning im to tired for pancakes, im to tired to live. The daily regime of treatments and pain is my reality.
No dog walking, no basic day to day living like most people, to tired to get out of bed, to tired to get fresh air. When i do go outside i feel like a tiny person in such a big world its noisy and busy and quite daunting. I dont know where to go, I dont know where i belong... so i go and hide in the safety of my bed again, the same bed that is also my prison. I dont know where i want to be or what i want to do.
The idea of living normally is just a daydream. To get up in the morning, go to work, go food shopping, mix in the outside world is like a foreign world to me i dont feel part of life anymore.
I have nothing to talk about with anyone as not much happens in my bedroom and what goes on in my sub conscious mind is to daunting to speak about so i say nothingWould a transplant solve any of this, would it give me the strength and the health to function, to go outside, to get a job or go shopping without feeling worried and scared. Will it solve my fear of what may happen, will it give me a lease of life to go to college and do the things i want to do?
Or will the transplant not work, will i die on the table, will my body reject the new lungs, will things be no better even after i put myself through such major surgery..
Will i even get listed if i go for a referral? Do i want to be listed?
I have said in my last few posts my mind is scrambled and i think by reading back on the post i have just written it is still very scrambled. I dont know how to start to unscramble it. I dont know who to talk to, or what to say, being opposite someone speaking words seems so much harder and all the more real than thumping at the keyboard as my feelings come spilling out through my finger tips.
I'm just so lost....I dont know what else to say
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......
MERRY CHRISTMAS
xxxxx
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......
MERRY CHRISTMAS
xxxxx
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.
x
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.
x
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
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
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
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
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