Can't believe that monday has rolled round again so sneakily and it's nearly the end sof the month again. But I'm loving all this springing in to action I seem to be doing, and actually feeling like I achieve something with my days! Earlyish awakening this not-so-fine morning as we were heading in to town to get a couple of kiddies birthday gifts and have a wander/ get stuff for dinrar. And also always manage to fit a starbucks in... ahem.
Fowl weather of course so no outsidey walkies expect for around Chichester high street, fighting the wind with an umbrella. Also I didn't have a morning sesh as my legs were frankly too tired and achey from yesterday and I figured I'd get a fastish walking session on Blacky the tread later on.
I got slightly paranoid that I woudn't be able to get anything done at all as my hips went quite clicky and a bit ouch just walking round town, so I figured the longer distanced walking every day since getting home probably warranted a break off the impact stuff. My luck arrived when Dad mentioned that he was playing squash at half 3 so I scooted over to the gym then. A perfect opportunity for a decent cardio and weighty session with no strain on my joints.
I stuck the tank on 3lpm and didn't go above that as I'd planned an easier day anyway. It ended up being just over 30 minutes cycling at about 10mph, 10 minutes elliptical at a fair rate, then some core stability and situps, then a couple of sets of weights for my shoulders/back and quads, and finally a good stretch.
My legs are dog tired still but not painful at all, so I think I'll be fine to get a 25 minute walk and a 15 minute intervals sesh tomorrow. That'll cover about 3 miles. I'm babysitting tomorrow night too which will be nice! As I've not sat for this family since last year.
I was quite chuffed that the continuous coughing untill recently has provided one benefit - strong abs! I manage 100 crunches without much difficulty at all today and I have a 4 pack going... so now I'm not coughing my ring up, I'll have to stick with the old crunches to keep it there!
Also, I was ever so slightly nervous about going to the gym with the o2, but it was really silly when I think about it, as hardly anyone really looked or anything. Bottom line is never to worry about what you look like too much because actually everyone is probably more concerned with what they look like! And of course getting their workout done. Lol... one less thing to worry about.
Take it Kneesy. xxx
Monday 27 April 2009
Sunday 26 April 2009
Black is soo the new, er, black.
Heyhey,
No update lastnight as my laptop threw a hissyfit and was punished by being shut down for the night. However life went on and workouts were done and massages had (!).
Saturday, I had a morning sesh of walking for 25 minutes, a couple of km, with just one little jog for a minute. Which felt pretty good, then in the afternoon I did 2 miles outside at a good pace, just on 2litres 02. Such a nice day, I'm loving being able to do loads outside at the moment!
I had planned to go straight on Blacky for 10 minutes whilst I was warmed up and in my kit, a do my 5 minutes of intervals then, but as we got back, some friends, who I haven't see for an absolute age, popped in for a cup of tea untill early evening. After they headed off though, I did go back out (dinner was only just going on anyway), it just meant I had to warm up again! I did 1 x 3 minute interval and 2 x 1 minutes on the 10 litres. It felt a bit hard but I wasn't surprised given that I hadn't done any jogging really since leaving LCH. Over a week, so no wonder it took some getting used to!
THEN, I could hardly believe my luck when some other friends came for the evening, one of who is a fantastic physio and has sorted me out soo well when I thought I was permanently seized up and decrepped. I thought they were just over to watch the telly and have some drinks but Physio, true to form, had bought her new folding bench contraption, and despite a full day of pummelling clients was raring to go! Mum and Dads room was transformed into a make-do studio with massage table and away we went... I had over an hour of upper body massage and also going over some exercises to keep my posture in line, and as ever, felt so much better afterwards.
She could really tell the difference from last time I went to see her when I was still pretty bad and totally knotted up from the violent coughing, so that was really encouraging.
All refreshed and de-kinked, I had my first session after watching some of the marathon (with green eyes!)outside at midday, walking 3 miles in about 50 minutes, which felt pretty good.
Blacky was awoken early evening for 8 minutes total of jogging and nearly 10 in and around that of walking to recover. It definately felt easier than the day before, so I think my lungs and legs were opened up a bit.
Since the last two days have been 4 milers, I'll ease off a little tomorrow as the legs feel tired, and probably cover just 2 miles walking, and 1 during the more intense session.
Night! xxx
No update lastnight as my laptop threw a hissyfit and was punished by being shut down for the night. However life went on and workouts were done and massages had (!).
Saturday, I had a morning sesh of walking for 25 minutes, a couple of km, with just one little jog for a minute. Which felt pretty good, then in the afternoon I did 2 miles outside at a good pace, just on 2litres 02. Such a nice day, I'm loving being able to do loads outside at the moment!
I had planned to go straight on Blacky for 10 minutes whilst I was warmed up and in my kit, a do my 5 minutes of intervals then, but as we got back, some friends, who I haven't see for an absolute age, popped in for a cup of tea untill early evening. After they headed off though, I did go back out (dinner was only just going on anyway), it just meant I had to warm up again! I did 1 x 3 minute interval and 2 x 1 minutes on the 10 litres. It felt a bit hard but I wasn't surprised given that I hadn't done any jogging really since leaving LCH. Over a week, so no wonder it took some getting used to!
THEN, I could hardly believe my luck when some other friends came for the evening, one of who is a fantastic physio and has sorted me out soo well when I thought I was permanently seized up and decrepped. I thought they were just over to watch the telly and have some drinks but Physio, true to form, had bought her new folding bench contraption, and despite a full day of pummelling clients was raring to go! Mum and Dads room was transformed into a make-do studio with massage table and away we went... I had over an hour of upper body massage and also going over some exercises to keep my posture in line, and as ever, felt so much better afterwards.
She could really tell the difference from last time I went to see her when I was still pretty bad and totally knotted up from the violent coughing, so that was really encouraging.
All refreshed and de-kinked, I had my first session after watching some of the marathon (with green eyes!)outside at midday, walking 3 miles in about 50 minutes, which felt pretty good.
Blacky was awoken early evening for 8 minutes total of jogging and nearly 10 in and around that of walking to recover. It definately felt easier than the day before, so I think my lungs and legs were opened up a bit.
Since the last two days have been 4 milers, I'll ease off a little tomorrow as the legs feel tired, and probably cover just 2 miles walking, and 1 during the more intense session.
Night! xxx
Friday 24 April 2009
I make 4.30 pimms o'clock, but NOT budweiser o'clock.
Hi,
So er, apparently train carriage refreshment trolleys now keep a substantial quantity of lager cans in stock for any fine fellow who may want to wet his whistle of a sunny London afternoon. Thankyou, Southern rail, for coming up with yet another way of providing the city's substance dependant, overworked, weekend centered, violent, rude and alcohol fuelled nation with booze.
Call me a right snob, but I don't think it's that acceptable to be draining can after can of lager on the 4.30pm train on the way back from london, especially in your work clothes, when it's standing room only and everyone around you is forced to smell your breath, and when you're a bit of an oddball at the best of times... But anyway, it appears that's okay these days. Nice.
Anyway, I'll move on to the more pressing issue of LCH clinic in all it's glory. It was alright!! Many sighs of relief from the team who'd obviously thought I'd do a 'Michelle' and be in again within the week - and then I turned up all healthy looking and non-breathless (ish!). That showed them, hahaha.
My spirometry was 85%, so brilliant (up 24% from February) and I didn't do a gas transfer. Weight stable but predictably they want more kgs on for next time, physio well happy and chest clear, blood gases borderline but acceptable for me. PaO2 was 8 I think... normal's over 10 or something. But meh... we knew all that.
I didn't start back on any more meds yet, so life is still pretty easy without the colomycin nebbing. All I have to neb is pulmozyme once a day at the moment, then the rest is all pills and inhalers hehe. I'm now free for another 2 weeks, then I'll go and have the steroid jab, reassess o2 levels with exercise, and another check up. And then two weeks after that, then I'm hoping we'll go down to monthly or longer.
So all in all, very good! I'm pretty chuffed with that, so the plan is to carry on with what I'm doing for now, with the hope that in 2 weeks, I can get those oxygen requirements down!
Tomorrow I want to get a proper go on Blacky, so I'm aiming to get a morning session around 8.30, with 10 minutes at 3.5 mph, then 4 x 1 minute at 5mph, with 1-2 minutes walking recovery, then another 5 minutes at 3.5. All on a slight incline of course ;-) That'll be roughly 1.5 miles, so then in the afternoon, get another 2 in. Probably 30 minutes at 4mph. I'll probably be knackered!
xxx
So er, apparently train carriage refreshment trolleys now keep a substantial quantity of lager cans in stock for any fine fellow who may want to wet his whistle of a sunny London afternoon. Thankyou, Southern rail, for coming up with yet another way of providing the city's substance dependant, overworked, weekend centered, violent, rude and alcohol fuelled nation with booze.
Call me a right snob, but I don't think it's that acceptable to be draining can after can of lager on the 4.30pm train on the way back from london, especially in your work clothes, when it's standing room only and everyone around you is forced to smell your breath, and when you're a bit of an oddball at the best of times... But anyway, it appears that's okay these days. Nice.
Anyway, I'll move on to the more pressing issue of LCH clinic in all it's glory. It was alright!! Many sighs of relief from the team who'd obviously thought I'd do a 'Michelle' and be in again within the week - and then I turned up all healthy looking and non-breathless (ish!). That showed them, hahaha.
My spirometry was 85%, so brilliant (up 24% from February) and I didn't do a gas transfer. Weight stable but predictably they want more kgs on for next time, physio well happy and chest clear, blood gases borderline but acceptable for me. PaO2 was 8 I think... normal's over 10 or something. But meh... we knew all that.
I didn't start back on any more meds yet, so life is still pretty easy without the colomycin nebbing. All I have to neb is pulmozyme once a day at the moment, then the rest is all pills and inhalers hehe. I'm now free for another 2 weeks, then I'll go and have the steroid jab, reassess o2 levels with exercise, and another check up. And then two weeks after that, then I'm hoping we'll go down to monthly or longer.
So all in all, very good! I'm pretty chuffed with that, so the plan is to carry on with what I'm doing for now, with the hope that in 2 weeks, I can get those oxygen requirements down!
Tomorrow I want to get a proper go on Blacky, so I'm aiming to get a morning session around 8.30, with 10 minutes at 3.5 mph, then 4 x 1 minute at 5mph, with 1-2 minutes walking recovery, then another 5 minutes at 3.5. All on a slight incline of course ;-) That'll be roughly 1.5 miles, so then in the afternoon, get another 2 in. Probably 30 minutes at 4mph. I'll probably be knackered!
xxx
Thursday 23 April 2009
Sure it's big enough, but take a look at the location...
Alrighty,
Today was the big jour, we mosied over to Hampshire to pick up the treadmill. All went smoothly until we were shown in to the (obviously congenitally redundant) 'home gym', with a rather slim looking doorway and a pre-folded treadmill beckoning us sweetly.
Hands on Dad gets right in there and sets to work turning treaders on it's side for us to then lift through the (ever narrowing, indiana jones style) doorframe... and reveals the first, and hopefully only, major design flaw of the machine. The foldable front stand which has been kept in check by the weight of the rest of the machine now springs out, trapping Dads fingers between itself and the other bit of frame. Very, very ouch and it clapped on fast enough to break the skin so there we were, christening the treadmill with blood before we'd even known it five minutes. Now all it needs are some sweat and tears, which will probably be mine.
We did eventually manage to form a human straight jacket on it before shoving it in the the boot, with a small panic that the boot wouldn't close even though we'd measured it, and then said our goodbyes.
Blacky the treadmill (it's a Roger Black model) has now set up camp in the garage, at least for the time being for my extreme usage to commence.
Not much sooner had we got over the excitement of all this, but the oxygen man paid a surprise visit with six high flow portable cylinders and a trendy carrybag for them when I'm out and about... I had no idea that portable had been sorted as I was told that it'd just be another machine, so frankly it was like christmas had come early. Now I've got the option of doing faster walks outside (which of course I did to try it out today) and also using the gym. And not having two honking big machines running for the sessions.
Each cylinder holds 430 litres (!) of compressed O2, so would last for a couple of hours worth of brisk walking, or about 40 minutes of jogging. Good stuff. Today was a lighter day, just a couple of moderate paced miles outside, on 2litres. I think my legs felt the benefit as they weren't as tired during and after.
In the morrow I'm heading up to LCH for a quick check up, and I'm still feeling okay about it, should be no hassle. Just that journey... yawn.
Righto, I'll chatter tomorrow XXX
Today was the big jour, we mosied over to Hampshire to pick up the treadmill. All went smoothly until we were shown in to the (obviously congenitally redundant) 'home gym', with a rather slim looking doorway and a pre-folded treadmill beckoning us sweetly.
Hands on Dad gets right in there and sets to work turning treaders on it's side for us to then lift through the (ever narrowing, indiana jones style) doorframe... and reveals the first, and hopefully only, major design flaw of the machine. The foldable front stand which has been kept in check by the weight of the rest of the machine now springs out, trapping Dads fingers between itself and the other bit of frame. Very, very ouch and it clapped on fast enough to break the skin so there we were, christening the treadmill with blood before we'd even known it five minutes. Now all it needs are some sweat and tears, which will probably be mine.
We did eventually manage to form a human straight jacket on it before shoving it in the the boot, with a small panic that the boot wouldn't close even though we'd measured it, and then said our goodbyes.
Blacky the treadmill (it's a Roger Black model) has now set up camp in the garage, at least for the time being for my extreme usage to commence.
Not much sooner had we got over the excitement of all this, but the oxygen man paid a surprise visit with six high flow portable cylinders and a trendy carrybag for them when I'm out and about... I had no idea that portable had been sorted as I was told that it'd just be another machine, so frankly it was like christmas had come early. Now I've got the option of doing faster walks outside (which of course I did to try it out today) and also using the gym. And not having two honking big machines running for the sessions.
Each cylinder holds 430 litres (!) of compressed O2, so would last for a couple of hours worth of brisk walking, or about 40 minutes of jogging. Good stuff. Today was a lighter day, just a couple of moderate paced miles outside, on 2litres. I think my legs felt the benefit as they weren't as tired during and after.
In the morrow I'm heading up to LCH for a quick check up, and I'm still feeling okay about it, should be no hassle. Just that journey... yawn.
Righto, I'll chatter tomorrow XXX
Wednesday 22 April 2009
Gone are my LCH hobo-age days, I remain firmly put at my family abode
I nearly went all cringey and disbelieving when I saw that my last post was the 11th of this month. SH-HAME-FULL.
The last post was written from l'hopital shortly before I accidently reached my maximum dongle-download limit and thus was internetless. At the same time as the tellies in LCH bummed out and so there was nowt to do. Which all seems irrelevant now that I am smugly at home enjoying all the luxury homey goodies that come with.
I escaped on thursday, so it's nearly a week now, and I've felt perfectly well, not even a HINT of the cruddy chest or temperatures! That bronch was thankfully worth it as it grew some other bacteria that wasn't in my sputum samples and was resistant to the IVs I was on, so I went on a different antibiotic (pill) and so far, so good -I've hardly coughed at all, and have been walking about 3-4 miles every day outside (very slowly as no o2). This has been my exercise 'allowance' untill I pick up my treadmill tomorrow, how exciting, and get a 2nd machine delivered allowing me to have the 10lpm of o2 for jogging.
Basically the decision seems to have been made that I won't be having the portable o2 even for a little portion of my exercise, I'm guessing because of the amount I take and the expense of liquid cyclinders. So since I was going to have to get a treadmill for the jogging anyway, I'll be able to use the concentrator I've had since December, which goes up to 5lpm, plus another which will be delivered next week, hooked up to the same driveline. Phew. Thankfully I'll be able to start straight back with the brisk walking on an incline, because I'll only need 2-3 litres for that. Bring on tomorrow I say!
The escape itself was less than smooth, if all's taken in to account... I was told in the morning by my consultant that as long as I had had the steroid injection done by that evening, I could go. That was already somewhat vague as Dad needed to know whether to come from work that evening to pick me up or not! So I asked someone to make sure that pharmacy had the drug in (they don't normally stock it as it's not normally used for treating chest conditions) and got on with packing!
Pharmacy man came early afternoon to check what meds I needed and that seemed fine. Then 5pm came and since pharmacy would have been closing soon and I was expecting Dad at 6pm, I started getting worried that I hadn't had this fricking jab yet, so there's me, going round and asking them for a bum injection like a nutter!! The nurse is like "Good job you asked again now because 10 minutes later and I wouldn't have been able to get it from pharmacy!!" So I would have had to stay another night just for that. Then I realise that the meds I've been given for home have no metronidazole (new antibiotic)!! Which is bad news as I'd only started it 2 days ago... so basically the registrar has to come and ask why I'm on it, why it was stopped on my drug chart (No idea) and then get someone to re-prescribe it! I was fuming tbh, that I would have been sent home with the bug and no abs to treat it. I was like "What if I'm back tomorrow with a 40 degree temperature like last time!!" Maddening.
Anyway, move on Michelle... I did eventually get out after much stress, and waved sweet goodbyes. Since being home I've not stopped!! Dentist, GPs to sort out prescription woes, Friends houses for teas, we had a dinner party, family for roast dinner, one to two walks daily, driving lesson booking, ordering a car (!!!), shopping, cooking, going with Mum to her herceptin session, treadmill buying and tomorrow picking up hehehe... endless! And then where has the week gone, I'll be up at LCH for a check up on Friday. Just a check up! It's never as bad when you know you're walking outa there in a couple of hours. I'll just be doing lung functions, weight, quick chat and eye over from Dr, and possibly gas transfer but we'll see. In a way I'm looking forward to it because I think they'll be really pleased with things - you can see how much better I am than 1 month ago and how clear my chest is now. Plus hopefully once that's out of the way they'll only want me up there every couple of months or something.
I'll update you on the treadmill situation tomorrow night when I've had a good old play!! xxx
The last post was written from l'hopital shortly before I accidently reached my maximum dongle-download limit and thus was internetless. At the same time as the tellies in LCH bummed out and so there was nowt to do. Which all seems irrelevant now that I am smugly at home enjoying all the luxury homey goodies that come with.
I escaped on thursday, so it's nearly a week now, and I've felt perfectly well, not even a HINT of the cruddy chest or temperatures! That bronch was thankfully worth it as it grew some other bacteria that wasn't in my sputum samples and was resistant to the IVs I was on, so I went on a different antibiotic (pill) and so far, so good -I've hardly coughed at all, and have been walking about 3-4 miles every day outside (very slowly as no o2). This has been my exercise 'allowance' untill I pick up my treadmill tomorrow, how exciting, and get a 2nd machine delivered allowing me to have the 10lpm of o2 for jogging.
Basically the decision seems to have been made that I won't be having the portable o2 even for a little portion of my exercise, I'm guessing because of the amount I take and the expense of liquid cyclinders. So since I was going to have to get a treadmill for the jogging anyway, I'll be able to use the concentrator I've had since December, which goes up to 5lpm, plus another which will be delivered next week, hooked up to the same driveline. Phew. Thankfully I'll be able to start straight back with the brisk walking on an incline, because I'll only need 2-3 litres for that. Bring on tomorrow I say!
The escape itself was less than smooth, if all's taken in to account... I was told in the morning by my consultant that as long as I had had the steroid injection done by that evening, I could go. That was already somewhat vague as Dad needed to know whether to come from work that evening to pick me up or not! So I asked someone to make sure that pharmacy had the drug in (they don't normally stock it as it's not normally used for treating chest conditions) and got on with packing!
Pharmacy man came early afternoon to check what meds I needed and that seemed fine. Then 5pm came and since pharmacy would have been closing soon and I was expecting Dad at 6pm, I started getting worried that I hadn't had this fricking jab yet, so there's me, going round and asking them for a bum injection like a nutter!! The nurse is like "Good job you asked again now because 10 minutes later and I wouldn't have been able to get it from pharmacy!!" So I would have had to stay another night just for that. Then I realise that the meds I've been given for home have no metronidazole (new antibiotic)!! Which is bad news as I'd only started it 2 days ago... so basically the registrar has to come and ask why I'm on it, why it was stopped on my drug chart (No idea) and then get someone to re-prescribe it! I was fuming tbh, that I would have been sent home with the bug and no abs to treat it. I was like "What if I'm back tomorrow with a 40 degree temperature like last time!!" Maddening.
Anyway, move on Michelle... I did eventually get out after much stress, and waved sweet goodbyes. Since being home I've not stopped!! Dentist, GPs to sort out prescription woes, Friends houses for teas, we had a dinner party, family for roast dinner, one to two walks daily, driving lesson booking, ordering a car (!!!), shopping, cooking, going with Mum to her herceptin session, treadmill buying and tomorrow picking up hehehe... endless! And then where has the week gone, I'll be up at LCH for a check up on Friday. Just a check up! It's never as bad when you know you're walking outa there in a couple of hours. I'll just be doing lung functions, weight, quick chat and eye over from Dr, and possibly gas transfer but we'll see. In a way I'm looking forward to it because I think they'll be really pleased with things - you can see how much better I am than 1 month ago and how clear my chest is now. Plus hopefully once that's out of the way they'll only want me up there every couple of months or something.
I'll update you on the treadmill situation tomorrow night when I've had a good old play!! xxx
Saturday 11 April 2009
On the up (silent mouth so I don't jinx it)
Awite crew,
Apologies for the long moan last time, unfortunately it was indeed quite an upsetting and difficult few days. But it's all history now, I'll draw a big fat line under it I think!
The pain from the biopsy is much better now, and also I've been off paracetamol since yesterday afternoon and my temperatures has stayed very normal! Sooo, the treadmill was calling for me today (as well as the physio basically picking me up and shoving me on it lol) I was slightly apprehensive of getting out of breath since big deep breaths are still somewhat tender, but actually, it turned out to be the best exercise I've done in here since readmission! I covered 2.2km in 24 minutes which isn't amazing compared to what I'd got up to a few weeks back, but I'm feeling more positive about it all now since I did that with relative ease, on just 2l oxygen, and felt pretty springy ect. Yesterday I did no treadmill but did have a good stroll in the park for half an hour or so with Mum and Dad.
It was pretty awesome seeing them again even though it's only been a few days and we talk twice a day (at least lol). They cheered me up no end even though I was once again creamed at scrabble... harrumph. There was also cake involved at our favorite local cafe The wild Cherry. To be honest though, anything to get out of these four walls for a bit is good... I think you can let yourself get down pretty easily if you're alone with your thoughts and stuck in the unit alot.
I'm planning on going to the park for a lap after IVs this afternoon, which will be another 1.5 km roughly, then I also need to go to Tescos (about 15 minutes away) to pick up some foodstuffs (getting so very bored of the meals in here) so all in all it'll be quite a big step up exercise wise.
If I tolerate today well, then I'll aim for two sessions again tomorrow, and try to cover 5km in total. I really want to get my endurance back first and foremost then I'll worry about the speed, and aim to be back to at least 4 minutes jogging intervals by the end of this admission... whenever that is. Hopefully not more than another week I reckon, if all stays well.
Anywhom, that'll be it for the minute, and I'll let you know how the increased walkage went today.
Take it cheesy xxx
Apologies for the long moan last time, unfortunately it was indeed quite an upsetting and difficult few days. But it's all history now, I'll draw a big fat line under it I think!
The pain from the biopsy is much better now, and also I've been off paracetamol since yesterday afternoon and my temperatures has stayed very normal! Sooo, the treadmill was calling for me today (as well as the physio basically picking me up and shoving me on it lol) I was slightly apprehensive of getting out of breath since big deep breaths are still somewhat tender, but actually, it turned out to be the best exercise I've done in here since readmission! I covered 2.2km in 24 minutes which isn't amazing compared to what I'd got up to a few weeks back, but I'm feeling more positive about it all now since I did that with relative ease, on just 2l oxygen, and felt pretty springy ect. Yesterday I did no treadmill but did have a good stroll in the park for half an hour or so with Mum and Dad.
It was pretty awesome seeing them again even though it's only been a few days and we talk twice a day (at least lol). They cheered me up no end even though I was once again creamed at scrabble... harrumph. There was also cake involved at our favorite local cafe The wild Cherry. To be honest though, anything to get out of these four walls for a bit is good... I think you can let yourself get down pretty easily if you're alone with your thoughts and stuck in the unit alot.
I'm planning on going to the park for a lap after IVs this afternoon, which will be another 1.5 km roughly, then I also need to go to Tescos (about 15 minutes away) to pick up some foodstuffs (getting so very bored of the meals in here) so all in all it'll be quite a big step up exercise wise.
If I tolerate today well, then I'll aim for two sessions again tomorrow, and try to cover 5km in total. I really want to get my endurance back first and foremost then I'll worry about the speed, and aim to be back to at least 4 minutes jogging intervals by the end of this admission... whenever that is. Hopefully not more than another week I reckon, if all stays well.
Anywhom, that'll be it for the minute, and I'll let you know how the increased walkage went today.
Take it cheesy xxx
Thursday 9 April 2009
Me sowee for no bloggy. I've been busy wading through treacle.
Heya,
As you might have guessed, my severe lack of postage has been due to parking my butt back in LCH. In a record time of 22 hours after discharge. Lemme fill you in... (room goes hazy)...
So I leave LCH on the Friday at about 8pm, Daddio picked me up and we sped off in to the depths of homeland sussex, relaxing with a cup of tea by 10.30, then bounced upstairs to unpack ALL my things, neb and snuggle in to my lovely big bed. Slept on and off but mostly that was because I was excited to be home and yet also couldn't stop thinking about Louis and his family. I woke up quite abruptly at about 6am and thought "my god I'm warm in here"... thought it was the oxygen concentrator heating up the room/thick duvet ect, but for some reason I decided to check my temperature anyway even though I felt fine.
I was QUITE surprised when it read 39.9, and got mum to check it on herself to make sure it was working! Which it was... so here I am thinking WTF, how do I not feel awful with this fever? I guess the shivery part happened when I was half asleep so I didn't realise the crap feeling and had simply arrived at the burning hot stage without any warning. I took paracetamol to get it down and it went down to the mid 37s a few hours later, but I was still so confused as to why it would shoot up like that when temps hadn't been an issue during the admission when on IVs.
When it started heading back up again despite more paracetamol, and I also felt a teeny bit off, we had to give in and call the ward for advice, to check whether it could be the kenalog (steroid) injection that I had before I left LCH.
Doctor on call phoned back and pretty much had dobbed me in to my consultant, who demanded we go in straight away for blood cultures and an x-ray. I felt well enough to get the train up so we did, and there you have it, by 8pm Saturday night, I was back.
The next four daysish were a blur as I continued to spike 40 degree temps all the time and this time actually did feel awful. My xray on sunday morning confirmed that the pneumonia had sprung back overnight, this time worse in the right lung, and at first it was like no-one had a clue where to go. On sunday morning we stopped ALL my CF drugs in the remote chance that they could have been causing a reaction. And by late sunday we restarted IVs as they realised it was probably infection. Tazocin and Tobramycin again, and thankfully a long line was put in and lasted till today.
Due to the Tazocin being stopped for 48 hours then restarted, I developed a rash all over and now am allergic to it, so it's been switched to aztreonam, with the tobra.
The temperatures have reduced a bit but still spike up to 39 at times and as this was happening after a week of IVs, and my x-ray hadn't improved, they decided that I'd have a bronchoscopy with a biopsy today. It's the third one I've had and unfortunately despite sedation I had remembered everything and felt everything so knew what was coming. They promised that this time I'd have more sedation so I'd not remember/be aware of much at all, but for some reason I was given the highest standard dose, and was wide awake for it. It's effing horrible and I hope I never have one again. They had three snips at a biopsy and I was in so much pain I cried the whole time (I NEVER cry with pain) and then continued to sob all afternoon like an idiot. I couldn't help it to be honest, I felt so... let down by it all. No-ones fault but just.. not nice.
Even though apparently I'm a hardened benzodiazapene user and it did NOTHING for me during the procedure, it did help me to feel like a drunk all afternoon so basically if I wasn't sleeping I was crying in pain and vica versa. Eventually I was given something for the pain although I never got my 2pm IVs, and due to my beloved long line being raped by the midazolam, not flushed afterwards, and then not being clamped and filling up with blood, it's now irreversably blocked and when I asked why I'd not had my IVs at about 7pm, and they came round to give them (!), unusable. And so here we are, nearly 9pm, me waiting for doctor to come and put a venflon in... so familiar, and I've missed a dose of antibiotics. Retards.
Well, I didn't say it was gonna be pretty, and it wasn't. That's roughly everything that's gone on bar a few things, so I'll update tomorrow. No exercise today for obvious reasons.... xxx
As you might have guessed, my severe lack of postage has been due to parking my butt back in LCH. In a record time of 22 hours after discharge. Lemme fill you in... (room goes hazy)...
So I leave LCH on the Friday at about 8pm, Daddio picked me up and we sped off in to the depths of homeland sussex, relaxing with a cup of tea by 10.30, then bounced upstairs to unpack ALL my things, neb and snuggle in to my lovely big bed. Slept on and off but mostly that was because I was excited to be home and yet also couldn't stop thinking about Louis and his family. I woke up quite abruptly at about 6am and thought "my god I'm warm in here"... thought it was the oxygen concentrator heating up the room/thick duvet ect, but for some reason I decided to check my temperature anyway even though I felt fine.
I was QUITE surprised when it read 39.9, and got mum to check it on herself to make sure it was working! Which it was... so here I am thinking WTF, how do I not feel awful with this fever? I guess the shivery part happened when I was half asleep so I didn't realise the crap feeling and had simply arrived at the burning hot stage without any warning. I took paracetamol to get it down and it went down to the mid 37s a few hours later, but I was still so confused as to why it would shoot up like that when temps hadn't been an issue during the admission when on IVs.
When it started heading back up again despite more paracetamol, and I also felt a teeny bit off, we had to give in and call the ward for advice, to check whether it could be the kenalog (steroid) injection that I had before I left LCH.
Doctor on call phoned back and pretty much had dobbed me in to my consultant, who demanded we go in straight away for blood cultures and an x-ray. I felt well enough to get the train up so we did, and there you have it, by 8pm Saturday night, I was back.
The next four daysish were a blur as I continued to spike 40 degree temps all the time and this time actually did feel awful. My xray on sunday morning confirmed that the pneumonia had sprung back overnight, this time worse in the right lung, and at first it was like no-one had a clue where to go. On sunday morning we stopped ALL my CF drugs in the remote chance that they could have been causing a reaction. And by late sunday we restarted IVs as they realised it was probably infection. Tazocin and Tobramycin again, and thankfully a long line was put in and lasted till today.
Due to the Tazocin being stopped for 48 hours then restarted, I developed a rash all over and now am allergic to it, so it's been switched to aztreonam, with the tobra.
The temperatures have reduced a bit but still spike up to 39 at times and as this was happening after a week of IVs, and my x-ray hadn't improved, they decided that I'd have a bronchoscopy with a biopsy today. It's the third one I've had and unfortunately despite sedation I had remembered everything and felt everything so knew what was coming. They promised that this time I'd have more sedation so I'd not remember/be aware of much at all, but for some reason I was given the highest standard dose, and was wide awake for it. It's effing horrible and I hope I never have one again. They had three snips at a biopsy and I was in so much pain I cried the whole time (I NEVER cry with pain) and then continued to sob all afternoon like an idiot. I couldn't help it to be honest, I felt so... let down by it all. No-ones fault but just.. not nice.
Even though apparently I'm a hardened benzodiazapene user and it did NOTHING for me during the procedure, it did help me to feel like a drunk all afternoon so basically if I wasn't sleeping I was crying in pain and vica versa. Eventually I was given something for the pain although I never got my 2pm IVs, and due to my beloved long line being raped by the midazolam, not flushed afterwards, and then not being clamped and filling up with blood, it's now irreversably blocked and when I asked why I'd not had my IVs at about 7pm, and they came round to give them (!), unusable. And so here we are, nearly 9pm, me waiting for doctor to come and put a venflon in... so familiar, and I've missed a dose of antibiotics. Retards.
Well, I didn't say it was gonna be pretty, and it wasn't. That's roughly everything that's gone on bar a few things, so I'll update tomorrow. No exercise today for obvious reasons.... xxx
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