Pegson In The Present . Com

Living in the Present…Aware of the Future…

New Drugs for Cystic Fibrosis – inhalable aztreonam lysine

New Drugs for Cystic Fibrosis – inhalable aztreonam lysine

A Gilead Sciences Inc. investigational antibiotic for cystic fibrosis patients with deadly infections will be reviewed by an FDA panel Dec. 10.

The Foster City-based drug developer (NASDAQ: GILD) said that inhalable aztreonam lysine would be reviewed by the Food and Drug Administration’s Anti-Infective Drugs Advisory Committee. The drug is an antibiotic against the bacteria Pseudomonas aeruginosa, the single greatest cause of death for cystic fibrosis patients.

FDA reviewers in September 2008 recommended that the agency not approve the drug, saying that Gilead needed to do more clinical testing. Gilead last week said that a head-to-head study of the drug versus Novartis AG’s tobramycin inhalation solution, or TOBI, will be fully enrolled by the end of this year and data from the study will be available in mid-2010.

Inhalable aztreonam lysine has won conditional approval in Canada and, in September, Europe under the trade name Cayston. The product will be available in Germany and the United Kingdom in early 2010, Gilead has said.

Gilead also is seeking approval from drug regulators in Australia, Switzerland and Turkey.

The drug has “orphan” status in the United States and Europe, granted to products that treat disorders that affect less than 200,000 people. The designation gives the product seven years of market exclusivity and possible tax breaks while under development.

Source – http://sanfrancisco.bizjournals.com/sanfrancisco/stories/2009/10/26/daily31.html

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Injection solution I use in Nebuliser

PeGsOn’s Response

So I have been using typical Aztreonam for Injection in the my nebuliser for about 18 months now on and off, interchanging between Aztreonam and Coliston as the drug on choice during the month between tobi doeses…So I guess this Azstreonam they are testing ( aztreonam lysine ) and waiting for approval is a sepcialised form of Aztreonam directed at being most suited for the Lung..

I remember when Coliston went through this stage I was using the typical Coliston for injection in my nebuliser before they bought out Colistimethate which I believe is called Tadim here in Australia and the main differences I felt was how much easier it was to breath the stuff.
I Personally find the Azstreonam for Injection slightly difficult to breath and I feel very tight in the chest for quite sometime afterwards which I a huge downside because you almost feel worst during the short term by taking the stuff…So I’m personally hoping the new Specialised Nebulised Solution Astreonam lysine is much easier on the lungs..as for the Lysine word I believe it is an α-amino acid that when used in cancer treatment has the ability destroy cancer cells but leaving healthy cells alone..But like I said I’m not exactly sure what its use with cystic fibrosis is.

As for infectiveness like I said I can only speak for the Azstreonam for injection done via nebulised…I would put it below coliston and Tobi in treating MY exacerbations but its much easier to breath than all forms of Coliston but Tobi in all forms still takes the prize for me…

If you have tried the new drugs send me a comment or email…Its great to see a few new drugs come out helping Cystic Fibrosis over the last few years…We need more..

As for the moment this is a wait and see…

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PeGsOn

pegson1986@hotmail.com

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October 27, 2009 Posted by | All Posts, Treatments | , , , | 2 Comments

Honey The Super Bug Destroyer ?

Honey The Super Bug Destroyer ?

Now I get a lot of emails asking a wide range of questions but one of the most common questions I get usually tacked on towards the end of the email is about what little tips, tricks and alternatives I use..

So It got me thinking, and there is so much that I do and I know other CF’ers do, that could be classed as alternatives that we give a go in addition to our everyday medications that we swear by but don’t have much scientific proof if any except out very own personal experiences to back it up…

So one of the so Called Alternative things I do/use that I believe has given me some improvement is Honey..

Now its an old wives yarn that Honey helps with colds, however there is a specific type of honey called Medical Grade Honey that scientists have discovered kills every type of bacteria thrown at it, including the antibiotic-resistant “Super Bugs” plaguing most hospitals and killing patients around the world.

Over time most bacteria have become resistant to the everyday common prescribed antibacterial treatments. But scientists have found that Manuka honey, as it is known in New Zealand, or jelly bush honey, as it is known in Australia, has the ability to kill every bacteria or pathogen it was tested on.

What’s more intriguing the bacteria researchers used to test the honey, including super bugs such as flesh-eating bacteria, none built up any immunity to the honey.

Now these studies have been carried out on external infections of the skin, so not exactly relating to the lungs or Cystic Fibrosis..

But this was enough to get me interested and I did further research and came across studies where Wounds infected with Pseudomonas, not responding to other treatment, were been rapidly cleared of infection using honey, allowing for successful skin grafting..

It was the Words “Pseudomonas” which made me really take these findings serious…So I looked up how Pseudomonas Infections of the skin are generally treated and what I realised is that the same drugs used to treat Pseudomonas of the Lungs are used to treat Pseudomonas infections of the skin.

So I purchased some Medical Grade Honey and Began using it. Believing that if drugs work in treating Pseudomonas in both the lungs and skin and since Medical Grade Honey had been proven to kill Pseudomonas in skin infections than its not a far jump to believe that the Medical Grade Honey may have some positive effects in treating Pseudomonas of the lungs…

So I have been using the Medical Grade Honey (Manuka) for about 6 months now and I believe I have seen some positives….In terms of more stable health, a recent sputum came back as scanty where I have always come back as profuse for the last 5 years….and my Lung bleeds have eased somewhat (knock on wood), and my overal Lung Function increased by 2 percent months after my last treatment (Extra Exercise also Involved)

Now all those positives I mentioned could be coincidences or maybe not, but Personally I believe someday in the future…maybe 10 years from now there will be nebulised solutions available that uses properties from this special honey.

So at this stage its not a magic fix, But I personally will keep using it…Medical Grade Honey tastes just like normal honey….The only difference is that it costs about $18 (AU) a jar in comparison to $6 for a regular jar of honey…Not that bad if you ask me.

So if your forever looking for additional ways to help your health than this may be something you can give a shot and if you feel it works like I do that’s great. But if not, Well at least you can say you eat Honey fit for a King.

Note: These suggestions are my own personal opinions that I formulated from personal experiences of myself, others and through research conducted using the internet..No suggestions I make should be used over your personal Doctors opinion…And normal medications should never been stopped in order to try alternatives…Alternatives in my opinion should be used as an addition to normal medications not instead of…
PeGsOn
pegson1986@hotmail.com

October 4, 2009 Posted by | All Posts, Daily Rants, Other, Treatments | , , , , , , , , , | 9 Comments

The Real Story of Dressings and PICC LINES by PeGsOn

The Real Story of Dressings and PICC LINES Exposed
Acting the goat during a hospital admission

Acting the goat during a hospital admission

I have since had a Port-o-Cath but had my fair share of PICC LINES over 30 PICC LINES before I made the Switch to a Port.

In this post I want to try and give you an insight to what a PICC LINE and DRESSING CHANGE is like for a person for Cystic Fibrosis.

So below is a not so brief scenario that I personally have faced many times during the PICC LINE years and even now though with a Port.

So I thought since I have been writing a lot about old times giving people a perspective that gives better understanding into the person I am now and also creating awareness about little issues that CF’ers face each day. This one is a small issue but a Very prominent issue/scenario that’s needs to be addressed as constant annoyances during times of treatment can grind you down making the important stuff that matters a lot more difficult.

Ever since I was 12 years old I have been having regular PICC LINES (up to 17 when I got a Port, but that’s another story for another time)…Now having a PICC line takes it toll in many more ways than a simple Cannula. It depends great on what you can deal, with the circumstances its been place in under but for more me I was young and hated needles of any sort so unless you can deal with someone thread a 1 metre line up through your arm and into your chest for a good half hour, it requires to go into surgery which is a nightmare even for the simplest procedures…you also can barely move that arm. I have seen the odd CF’er move their arm around freely like normal but in my case, I can’t extend it past a constant 45 degree bend in my elbow…

Once you have had the PICC LINE placed into your arm…its given a quick and nasty dressing in the operating and sometimes stitched down to help prevent it being accidentally pulled out. Your arm is dressed, and the right angle is found for your IV line so it doesn’t dangle in everything…And it does.

So you get over surgery of having the PICC LINE inserted and if your lucky they did a good enough job on the dressing that the nurses won’t require to dress it for a week or so.

The next agenda is to go to the loo now even if your PICC LINE is in your non wiping hand it still makes going to the toilet a laborious task….Each bit of toilet roll has to be used to maximum capacity otherwise you would be there all day….Once going to the loo is mastered its time to wash your hands….So you have a fully functioning arm and than the arm with the PICC line, which I usually have bandaged to give extra protection, so after a hand wash you have a partially soaked bandage that you kind of hope didn’t get partially used as toilet paper….if you know what I mean. Or you end up going down the track of the self hand-hand wash where you have the lather you’re the hand, wash the hand all with the one hand if that makes sense…If you have had a PICC LINE or a Cannula for that matter it will make sense.

You’ve got through a week in hospital on bad food, annoying foreign doctors that can’t speak proper English and physios that are super hot and have great personalities and you love but happen to be lesbians…grrrrr….( I’m not speaking of personal Experience .lol) Week one is done and its time for the mandatory Dressing change, your arm has seized up from not bending it enough and is in a constant dull ache so your not to happy….your complaints of this aliment go unheard because its seen as your fault for not listening to the advice of “just bend your arm“….the initial slight bruising is barely visible to the naked eye, only a slight yellow tinge of bruise is left on the surface but the inside is another story..its sore, aching and feeling a tad horrible….just a tad . lol

So being a big strong manly man like myself, my arms are hairy so the Dressing is quite an unpleasant experience all round…and let it be known to anyone out there like a nurse, doctor or even a mum sitting beside their kid as they are whinging about how annoying and painful the dressing is….don’t ever think a simple dressing change is simple, its quite painful its like when you have a full blown flu and hurt all over…imagine someone poking at you while your in your delirious state…Lets just make that clear…oh and if I ever hear someone say “you would should be use to this by now” I will get up disconnect my IV line and If I need oxygen too bad…I will go to the lift…..hit 0.…go to the maintenance level….find a crowbar….re-enter the lift back to level 2.…into my ward….beat you with a crowbar….say arh I’m sorry I did my best! Than I will beat you again and again and one more time for good measure and calmly say are you use to this now…would you like another governor?  Haha sorry I just had an Anger Issue arise.

Ok so onto removing the dressing we would go..So after using the citrus scented dressing remover and agonisingly pulling the hair from the sticky plastic, and facing the constant chirp of the nurse criticising me about how other CF’ers don’t take this long. The dressing is almost off and I‘m tired and annoyed but we are getting there and I keep thinking once its done I don‘t have to do this again for a whole week..*BLISS*….until you hit a snag……what do I mean……well when a PICC LINE is inserted and than the dressing is put on, some slight bleeding occurs, which is quite normal but a few days to a week on it become crusty (not infected)  and is slightly stuck to your skin, the PICC LINE itself and the dressing….so now your real stressed. Your holding your arm to your chest not wanting to continue but you know you have no real choice, the nurse is trying to get it back to continue with the dressing removal since she has done this 100 times and her coffee break is coming up and she wants to catch the last 20 mins of the Bold and the Beautiful.…(lame arse show where they always stand still in poorly lit rooms, never leaving to go outside”

So the nurse has a quick pick at the dry blood and you can feel it, and its an awkward feeling that makes you want to close your open elbow to business…she than realises the dried blood is a little more difficult than expected…so she leaves the room meanwhile your mum, girlfriend, husband , wife or whoever is looking at you, and you kind of now they are thinking stop being so difficult its not like you had your chest split open….

So the nurse walks back in after yelling down the corridor to another nurse she will be with her in 5 mins for a cup of Joe (Coffee), so you know its all going to happen quick…really quick…Like the 12 seconds between two love birds after Prom night…my case 17 seconds because I’m a champ. And just plain AwEsOmE

The nurse enter with a yellow pair of disposable tweezers holding wet gauze…she starts dragging it over the entry of the PICC LINE. The thought of the awkwardness is playing on your mind.. The Nurse not trying to delicately separate the dried blood from the 3 different surfaces stuck to, is going at it like a rabbit. just drying to rub it off in one go. Meanwhile you have given up on keeping control and are looking away just hoping this situation is close to being over..and fairly soon the dried bloods gone and you think to your self the actual pain wasn’t bad but the process was tiresome.

So by this stage your tired and feel emotionally drained, you can’t go with much more of this and you want to get back to playing the Nintendo 64 or sitting in the dark with the blinds drawn to avoid the amazing day outside….trying to kid yourself its overcast. lol

So its just your bare arm with a PICC LINE hanging out….It needs a quick sterilize before the new dressing is placed, just to give a bit of added protection from infection a small fresh packet of gauze is opened and the nurses changes her gloves from clean gloves to special sterilized ones….she grabs the gauzes and dips it in a bluey alcohol substance…you make a joke that no one finds funny about having a alcohol soaked piece of gauze to suck on, which subsequently gets written in your notes and the liver specialist turns up the next day drilling the message in that drinking will make your condition worse…Joke PPL you scream..
Ok back on track so the nurse is about to clean your arm ready to be redressed she says “don’t worry this will be just cold“….at this moment your starting to think about what to do afterwards and in my case looking at mum discussing skittles and coca cola for lunch….you look back to your arm and than the nurse drags the gauze drenched in alcohol over the PICC LINE entry…Sure its clean now but it stung like hell.. you quickly forget the skittles and want Endone (Oral Morphine)….

Now for the new dressing….Now you have had many dressings before and have learnt over time what works best for you….You know that you need your arm as straight as possible otherwise if the dressing is placed on a bent arm, its going to make it near impossible to bend at all…So you tell the nurse how you want your dressing she pretends to listens but continues to believe she is the top dog and proudly states she has done these everyday….and your thinking that’s fine but you don’t do mine every day….You stupid F#ck…..(sorry about the use of words but its true, this is how I think…I don’t say this stuff just think it)

So the IV 1000 dressing with the thick orange border is pulled out but the nurse buggers the first one because its so sticky and it sticks to her gloves and quickly becomes unusable….so now the nurse is a little frustrated, the bold and the beautiful has finished and her coffee is cold…so its you and her and you both really wants to get this done…so you think to yourself that there is no point in making any other suggestions on how you would like your dressing done as they are going to be greeted with even more frustration which inturn makes you feel helpless and you end up going along for the ride hiding your opinion and displeasure at the job being done my gritting your teeth and holding your oxygen tubing closed so your barely conscious and the result is the PICC LINE dressing just plane sucks..and you feel raped ….PICC LINE RAPED. Haha Anger Issues again..

Ok so lets back on track to this current situation. So the nurse has a second IV 1000 dressing and this time she has taken the gloves off and is trying to avoid touching your clean arm as to keep it fully sterile….I personally could never straighten my arm with a PICC LINE the best I could manage was to slightly straighten it, maybe a 45 degree angle at most….

So the nurse has the iv 1000 out she places it over your arm and PICC LINE entry and all looks good…She tapes the bung hanging out the end to give it some added strength and leaves the tape on your dresser so you can modify it at your pleasing….

In a sarcastic and belittling voice you get the response from the nurse “Are we happy now???? that wasn’t to bad was it!! “ and I just sit there with a slight smile of shear happenings and slowly nod all in the knowledge that the nurse of painful dressing changes is about to leave….my mum walks the nurse out of the room constantly thanking her for being so patient with her son and saying she knows how difficult and particular I can be which inturns makes me feel likes my preferences were unreasonable….Mum walks back in proclaiming what a wonderful nurse “she’s really nice Arron”

All the meanwhile your sitting thinking yep that’s great mum…You look around and ask your mum to go to the vending machine for some skittles and coke, mum says “I have to get going soon as I have work early tomorrow…do you need anything else”  you think about what lame movie you might borrow from the hospital library later that night and decide that a mars bar will fit the occasion…

So you grabs the TV remote with your good hand and turn the Tele on, Blues Clues is on so your not that interested…The remote has one yellow button that cycles through the channels so you start cycling through….you see CSI which you think looks promising but you accidentally pushed the yellow button again and the next channel pops up, you can’t be bothered cycling through 100 channels to get back to CSI so in your world CSI season 5, Episode 6 never exists….

So you check your IV pole and realise its not running…..since the nurse has forgotten to turn it back on after the dressing change, so you turn on the IV machine, put in on a slow drip of 20 mls saline over and hour and quietly hope your line didn’t‘ become blocked…

You than not knowingly bend your PICC LINE arm a bit and the dressing pulls and with out looking you sigh “Arh F#ck” you take a look and the dressing is going up passed the side of your arm on to your elbow where it bends so every time you bend your arm its pulls the dressing….

You think about calling the nurse but you decide you’ve had enough of her for the day so you start picking at the top of your dressing and getting it below the bend of your arm,,, you grab the tape the nurse left and than tape the top of the dressing to the point that not even a microscopic alien virus could fit between your arm and the tape…You feel accomplished that once again you have fixed your PICC LINE dressing up and all in the word seems good….lol.

Mum returns with your goodies…You think about telling her but can’t be bothered doing the whole explanation ritual…you give your mum a hug and say good bye and start to watch the hospitals newest release VHS tape…Home Alone…proudly donated by Blockbuster after 9 years of being on the rental shelf….Amongst the slow motion and flickering video you think to yourself not a bad day… but it could have been much worse.

The next morning a new nurse comes in and does the once over, she looks at the conglomerate of tape on your arm…..and you quietly whisper in her ear….That the nurse who did the dressing last night was sucking on alcohol wipes…You role back over and have a quite laugh and try to get a quick nap in before physio comes around ready to pound the living sh#t out of you…Huff…..Huff…Huff…Huff…..Cough….you can do better than that….Cough…..Good Boy…

Here is a video from Runsickboyrun. It shows his line being changed….Not the best example to go with my horrendous account as Sickboy seems to lap it up.

PeGsOn
Pegson1986@hotmail.com
www.twitter.com/pegson

I’m sure all your CF’ers and CF parents can relate somewhat to this little scenario we face so often on a day to day struggle so leave me some comments about your experience and such

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September 8, 2009 Posted by | All Posts, Daily Rants, Treatments | 2 Comments

PeGsOn’s Blog – Clinic Appointment, Anxiety and more

PeGsOn’s Blog – Clinic Appointment, Anxiety and more

Well today was my monthly clinic and I turned up ready to discuss a few issues that had been bothering me for the last few months, but had gone on the way side.

PeGsOn waiting for the many drugs

PeGsOn waiting for the many drugs

But first I had my Dermatology follow up from 3 months prior. So 3 months ago I had my skin cancer check and that was all clear, but I wanted to discuss a kind of dry sometimes pimply rash I developed after I stopped taking Cortisone, which is strange as usually if you are to develope a skin condition from Cortisone, which isn’t that uncommon. Usually you develop it while on the drug, but my body has never played by the rules. So anyway they said it was likely an immune response to everything in my system. They explained it like a pimple but without the infection aspect so they gave me a few ointments but 3 months on nothing has really changed….They are very hesitant to give me anything too strong since skin complaints on the big scale of things are fairly small when it comes to my issues. So they prescribed me a scrub that is meant to refresh the skin and help reduce inflammation.

It was now time to have my port accessed, now I’m a pussy. So when I have the stuff on hand I like to put EMLA http://www.emla.com.au/ on my port. it’s a dermal anaesthetic cream
that numbs the port site, allowing for a painless needle insertion. I say if you can avoid the pain why not. So the port access went great…good blood flow and HEP saline locked for a months time.. Just on this note I would be interested to here about the maintenance your CF team does on your port…how often its flushed etc etc..

So now it was time for my spirometry and I wasn’t expecting much. I usually don’t do a lung function test as I feel the results usually depress me.. I operate under the motto If I feel alright than I am alright, but since I was sick all last week with the Fosamax reaction John one of the CF nurses was able to twist my arm and get a lung function out of me…

Now my last lung function was 6 months ago….I know a long time…they ask me for them each month but like I said I refuse…So 6 months ago fresh out of Hospital after 3 weeks of IV’s I blew 42 percent, well today feeling crook and not well at all I blew 44 percent..Both me and John were pleasantly surprised…and I can only imagine what it would have been two weeks ago before I got crook maybe 46 -48 percent…I guess this is huge evidence that shows Pulmonary Rehab does actually work.

So it was time for my visit with the CF doctor (Work), So I had a few issues to discuss.

I like to put my hand in this and look for toys like a kinder suprise

I like to put my hand in this and look for toys like a kinder suprise

The First Issue:

Fosamax: We decided that I should stop taking Fosamax for the meantime, however since Osteoporosis won’t just disappear I have been referred to a Endocrinologist who will deal in trying to find a suitable way to help my body tolerate the Fosamax or something similar. This is the first time I will have seen a Endocrinologist so I’m not entirely sure how they work.  . If you have seen one let me know what to expect.

My next point of call was to discuss the anxiety, well least that’s what I think it is I have begun to feel over the last couple of years. I have always been very sceptical about physiological issues regarding chronic illness but I started to realise they actually did exist after having a few beers one night. A few beers you might say. Well I remember feeling really tight in the chest and in a constant panic about having a bleed (haemoptysis). I could hardly move around, after 2 beers I completely forgot about my issue and that made me realise that a lot of it is in my mind.

So at clinic today I spoke to my Doctor about how I just feel on edge all the time and need to mellow out a bit, I than asked about medication and he was very hesitant about giving me anything, which surprises me since I know numerous people without health conditions who complain of feeling stressed at uni (college) and they get whacked on all sorts of anxiety meds and here I am with 50 issues and I feel like I’m having to jump through hoops. After a bit of a discussion by Doc wrote me a prescription for something that will just take the edge off things on the terms I see the local CF psychologist as a long term plan needs to be put in place as a tablet isn’t always the best option..So that should be interesting. I love listening to someone who is in perfect health tell me how I should simply forget about the rapid growing colonization of my lungs and simply skip around like a happy Bambi..  “Anger issue”

I than ran through all my current medications, so we could basically do a stock take of what I should keep taking or maybe ditch from the PeGsOn PhArMaCy. We decided that during my month on month off regimen I will swap Coliston for Azstreonam this month just to see how I respond to it.

So That basically sums my day up, I was happy to get out of there since My Doc seemed to have a cold…or I’m hoping hay fever. Because we had a really long, almost an hour consultation, so if It was a cold I’m doomed…Done like a dinner….Grrr my throat does feel chalky ooops there’s that anxiety…but seriously it does feel itchy lol.

Thanks to my loyal readers jim, jonas, bartrim, jobe, jerrald, jayson and norbit.

PeGsOn

pegson1986@hotmail.com

September 1, 2009 Posted by | All Posts, Daily Rants, Media Posts, Treatments | , , , , , , , , | 2 Comments

Pegson’s Blog Saturday 15.9.09 – I need to pull myself into line and get back on track

Hey Guys, Gals and Hybrid humans..

Its realy early and Im insane
Its really early and I’m partially insane

It’s a bitter Saturday morning (15.0.09) around 5.40 am and I have just woken up from a short but very deep sleep. I’m currently having my morning hit of Coca-Cola before I get started on my schedule of Treatments…

So firstly how do I feel health wise and where is my state of mind at???Well without sounding like a whiner… I feel pretty ordinary.

I have woken up very congested this morning and not feeling crash hot at all…The instant I opened my eyes I thought “arh sh#t” I was so full of thick mucus… sorry for the vivid description… that I knew my first movements out of bed were going to send me in to a huge old coughing fit and I didn’t feel like I had the energy to complete a “GOOD COUGH”

So where am I at….I have been on Nebulized Antibiotics Tobramycin, Ceftazadime, Oral Ciprofloxacin and azithromycin for about 9 days now, this is separate to my usual month on month off of tobramycin and Azstreonam.

So I’m in a bit of confused state as to where I am with my health. I didn’t feel that crook before starting on the nebs. but we decided to start the antibiotic nebs to err on the side of caution as we thought a chest infection was about to rear its ugly head.

Since I was still feeling pretty ‘ok’ and still being fairly active we came to the decision to treat with nebs rather than in hospital on IV’s as avoiding the hospital at the moment which is full of flu and other winter respiratory illness is priority.

Ok. So I have been very active over the past couple of weeks and I don’t believe I have really hammered and given this treatment my full attention.. In hindsight I have been burning the candle at both ends by staying up late…sleeping late…not eating proper foods and I have found myself due to these erratic patterns missing a couple of treatments which I usually try to avoid as much as possible…

This seems to be a problem with my way of doing things..I have a character flaw that when I’m doing ok I sometimes prioritize incorrectly an due in part because I’m feeling ok and my want to keep active and out there while I can  I sometimes skip/miss a treatment where as if I was sick as a dog I would be on top of things and I guess it may come down to the fact if your that unwell nothing comes into your mind as a distraction…

One of the the tell tale signs that I’m running myself into the ground on a non CF level is pimples…when I’m doing to much and being a bit careless and my body is screaming out that I’m about to crash I get signs and one of them is a pimple break out and that’s something I feel this morning so that’s another sign that I need to knuckle down and get things back on track..

So really I only have one option and that is…I’m going to have a weekend to myself doing my treatments 120 percent…on time…eat correctly…get some extra sleep and get back into somewhat of a reasonable sleep pattern so I’m not walking around like a zombie

I will then revaluate my decision come Monday morning when I go to rehab as it will give me a good indication of where I’m at. And if things haven’t improved I may just have to bite the bullet and organise to continue my Treatment in hospital which I have been not been in for around 9 months.

So usually I consider myself as someone who is usually on top of my health and really think of myself as a Responsible CF’er and even I have fallen victim to complacency ..so I’m glad I have been able to identify the problem and reign myself in and hopefully pull this old wagon back on the road to good health..but if not, have the ability to say right I need help and go into hospital….

I will try to keep you updated..On a side note here are two photos I took yesterday after my aunties funeral.

PeGsOn
Pegson1986@hotmail.com

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August 14, 2009 Posted by | All Posts, Daily Rants, Media Posts, Treatments | , , , , , , , , , , , , , , , , , , | 2 Comments

My Experience with Hemoptysis and How I deal (in response to runsickboyrun)

After reading the runsickboyrun’s post on his experience (You need to read his blog. His view CF could can give you insight to your own situation with CF) I thought I may as well share my experiences with hemoptysis ( bleeding of the lungs) since its a daily occurrence for me just like taking enzymes.

First a quick definition

Hemoptysis or haemoptysis is the expectoration (coughing up) of blood or of blood-stained sputum from the bronchi, larynx, trachea, or lungs .

I had my first experience of hemoptysis when I turned around 16 years of age. I still remember it quite clearly I was having physiotherapy a couple of days into IV antibiotics on the out-and-about program (a program where you go home on iv’s) Now at this time I wasn’t really aware of the dangers but became extremely scared when the nurse refused to answer any of my questions while constantly repeating that’s for the doctor to talk to you about..Ironically the doctor came 45 minutes later and I had fallen asleep.

Over the next couple of years I had small bleeds and everytime I would research it for a few days afterwards.

My first big bleed occurred after diving under water on a summer afternoon. Anyone that has experienced bleeds knows the instance they occur, it is a feeling that can’t really be explained. It does not usually hurt, it feels like a warm wheeze or slight vibration and in my case a sensation that something is dripping inside my lungs..

The bleed that occurred on this summer afternoon scared me to the degree that I still get a feeling of dread thinking about it..The feeling that you have no say in when the bleeding stops is horrifying and all you can do is stay calm and sit tight..

In my instance there was no need to cough the blood up as it was so pressured it was spraying. I can still see the stainless steal laundry sink sprayed with blood and the mass that was filling the bowl was clotting before it could drain away.

Its funny but I was so naive with this new experience once the bleeding had stopped I simply walked back to the pool area and sat down..I remember my mates commenting on how pale I looked. (These days I would call the Ambulance quick smart)

What I have learnt since that first massive bleed is priceless in terms of staying calm which helps alleviate the bleeding and the general aftermath where you hopeless and out of control..

In the situation of a Lung Bleed one is always going to panic somewhat If you don’t your not fully aware of the danger or are simply new to this horrendous part of the Cystic Fibrosis disease.

But a few things can be done to help reduce your panic and hopefully stop the bleed or at least slow it down allowing for you to get yourself to hospital or an Ambulance to arrive.

Firstly I have plastic cups around I use them to drink from so I have heaps..The average plastic cup is 200 mls so when a bleed of substance occurs I start coughing up into the cup..Now my mum finds this scary as you can clearly see how much has actually come up,  but in my case knowing this calms me. I can see exactly how much is coming up which is good because you know your not going to die from 200 mls which in this situation is reassuring. I have a rule anything over 30 Ml of pure blood (not mixed in with mucus) I call the ambulance. This is something I have discussed and made a plan with my doctors.

Another practise I implement in times of massive bleeds is to make my mum aware of what naturally calms me..That being a bottle of water, a cool towel over my shoulders and a small bedside fan blowing directly on to my face..There is something I find reassuring and calming about having air blowing over my face..

In terms of coughing the blood up..I only cough once I feel it filling up..I’m under the belief through my own experiences aggressively coughing up the blood while its actively bleeding is only going to prolong the process as a vital clot may be forming and if your aggressive coughing like one would during physiotherapy your likely going to cough it up causing the bleeding to continue.

The reason why I call the ambulance rather than getting someone to drive me to the hospital which could possibly be much quicker is the fact that patients arriving in the ambulance get seen straight away and you don’t want to be sitting in emergency having a lung period whilst catching someone’s hybrid swine/bird/camel flu.

The catheter in the lung

The catheter in the lung

Once I see a doctor I make sure they start a saline drip and order a lung X-Ray as bare minimums, you would be surprised how long it can take them to come to that decision but having several million degrees in CF they usually listen to me and order my X-Ray..

Now if the bleed is constant they may offer the option of having a pulmonary Angiogram Embolization (what they d0 with me)..It’s a procedure where they thread like a picc line or to be more precise a catheter up through your artery in your leg through to your lungs..The hope is that they can inject a radioactive dye and see where the dye is leaking out of the lung hence directing them to where the procedure is required, where a medication or synthetic material called embolic agents is placed through the catheter into the blood vessel they believe is bleeding to prevent further blood flow to the area. Thus hopefully preventing further bleeding.

Typically Ambolization should last at least 18 months as the vain’s do regrow.

There are certain risk factors that go with all procedures however that is something for you to discuss with your Doctor, however Pulmonary Angiograms are the standard treatment for  Hemoptysis from the lungs. There are other treatments used to treat lung bleed including drugs to slow bleeding. A few years back I tried Tranexamic Acid it seem to help with constant slow dripping bleeds in my case.

Are there things I can to do to prevent or reduce to the chance of future Hemoptysis?

Yes there is..It sounds so simply but we know it’s not..Stay healthy as possible..And when you start getting a chest infection act on it straight away..In the past when I was much healthier as a young child, I would feel a chest infection coming on but I would say to myself “I will just wait until I see my doctor in a couple of weeks”. Well these days I have learnt through natural maturing to get an appointment straight away and even have some meds on hand as in my clinic they know I’m experienced and mature with my health so if its a Friday afternoon and I ring up stating I have a chest infection brewing they usually give me the go ahead to start nebs and oral cipro and to come see them the first thing the following monday..These few days of getting to infection earlier than you would can greatly help in reducing the damage the chest infection does to your lungs and ultimately reducing the the chance of hemoptysis.

Its been 20 months since my last Pulmonary Angiogram so I’m constant weary about future bleeds..

Which brings me to the point about how hemoptysis plays tricks with your mind or at least it does with mine..

After every bout of bleeding (no matter how big or small)  I go into a shell and pull back from things depending on how serious the bleed is, it can be anything from a day or two to a couple months (Months in a shell is not fun)..

It always seems to be the case when I get my confidence back I have another bleed..Now I have read and heard many opinions about this factor of losing your confidence in regard to hemoptysis so I’m going to share my own opinion formulated from 6 years of constant lung period.

I believe that no matter who you are bleeding from a place your not suppose to and can’t see is going to cause some psychological issues..Depending on what type of person you are they are going to differ..I believe its normal to go into your shell after a bleed and its a smart thing to do,  because it allows your body to relax, settle and repair however you must after a short while continue on with your life, being weary knowing your signs and knowing when you should just rest for a moment and settle..You can’t let Lung Bleeds rule your life buts silly and naive to say they don’t play some role in the direction we take. For instance you won’t see me playing contact sport..So all in all…You own your body…You know that body..You know your cough..You know the tickle in the back of your throat..So you will know your Lung Bleeds and know what’s best for you.

PeGsOn

Living in the Present…Aware of the Future

Sources:

Pulmonary Angiogram on Wikipedia

Hemoptysis/lung bleeds

I hope this blog was helpful..if you found me confusing and slightly rambly I’m sorry but I like to write as if I’m in a conversation..and talk to your doctor…I am the bestest in da world…. but my Doctor status is only valid in the state of Pegomania.


August 11, 2009 Posted by | All Posts, Media Posts, Treatments | , , , , , , , , , , , , , , , , , , , , , , | 3 Comments

What to Do if you can’t make it to the gym – this is what I do

August 10, 2009 Posted by | All Posts, Media Posts, Treatments | , , , , , , , , , , , , , , , , , , , | 2 Comments

Slide show of me doing my Nebs

Was board while watching the cricket and doing my nebs early in the morning so thought I would upload and share some pics with ya…..


Got me plasma covered just to prevent any tobra attacking the screen

View the Gallery of Flickr click here

August 8, 2009 Posted by | All Posts, Media Posts, Treatments | , , , , , , , , , , , , , | Leave a comment

Pegson’s Vlog – my health, how I organise my Cystic Firbosis treatment when on Nebs

Just an update and I also talk about making things easier when your unwell and doing nebulised antibiotics.

August 8, 2009 Posted by | All Posts, Daily Rants, Media Posts, Treatments | , , , , , , , , , , , | Leave a comment

After Reading your Blogs I have been Motivated again.

After reading my fellow CF’ers blogs I thought I was dedicated and had it down with all my treatments and schedules which I abide to fairly religiously, I have my slips and days off though ( I am great but not that great 🙂 ).

I decided to really knuckle down and get all medications sorted into a tablet container and maybe take a list of medications and Ideas I have read online to my doctor and see what he thinks..as I’m also looking for something to add another 20 minutes to my treatment schedule a day but also another 2 months to life.

So yeah I just thought I would let you guys know that reading your blogs..even for a CF’er like myself that is pretty on top of things your blogs and ideas that your’ve posted have given me a new incentive to try even harder.

Haha now to pay you for your suffering for reading my excuse of a post which only achieved me getting my head around what i need to do I decided to post this video of the Insanity this song causes me…..lol

Thanks Guys

PeGsOn

pegson1986@hotmail.com

August 5, 2009 Posted by | All Posts, Daily Rants, Treatments | , , , , | Leave a comment