Well hello there!
So a little update on moi... my lung function last week was 45% and my weight is *drum roll please*..... 57kg! I swear it must be muscle I am putting on or all just on my bum which is looking bigger and bootylicious, as my waist is not getting any bigger thank goodness. Guess my strength training at the gym is doing the trick! Just call me muscle lady from now on please.... needless to say I feel quite proud of myself at the moment and may even feel a little smirk making its way on to my face.
I did start to feel run down towards the end of last week, I suspect I picked something up when I had my hospital appointment. Hospitals are the worse place for sick people to go! I started to get chest pains, coughing more, more tired and I was needing to do more insulin to keep my blood sugars down. From what I've gathered, diabetes causes a circle of sugar misery. You get high sugars because your chest infection is worsening and then the high sugars feed your infection. So I started on some Ciprofloxacin, upped my hypertonic saline and I'm starting to feel better, although I suspect I may end up having IVs but for now i'm happy to coast along (the bank holiday is coming up after all and who wants to be hooked to IVs if it can be put off?!). I'm at the in between stage: not my normal self and not ill enough to be begging for IVs just yet. I finish my last dose of Azli tonight and then it's my month off, I suspect this may be my downfall....
I only had 10 days worth of Cipro in my cupboard so asked for a prescription for four days worth to make it a two week course. Well the SHO Doctor (junior doctor) I spoke to was not happy I had started Cipro without asking anyone or telling anyone. How long have you been taking it? Who prescribed it? Is it in date? What dose are you taking? In future can you let us know so we can make a decision as how to treat you? Obviously she is new and I didn't want to be nasty, we all have to learn after all, so I was an obedient patient and answered her questions:
'I've been taking it since last Friday',
'I'm not sure who prescribed it, I get it prescribed a lot, it was in my cupboard along which lots of other medications I have as back ups',
'yes I checked the expiry date, I think I'm capable of that',
'I'm think it's the higher dose since I'm an adult and have two types of chronic Pseudomonas',
'yes in future I'll call the busy CF ward and ask to speak to a busy doctor to see if I have permission to take a tablet that they have specifically prescribed to use for this given situation so I don't have to wait for it to arrive in the post'
I didn't really say all that, like I say, they need to learn. Quickly if possible. Learn I've had CF for 28 years and know the protocol better than them or what works for me and I know how my body is feeling..... as you can tell, I'm not too keen on cocky junior doctors. Just write the prescription please.
Showing posts with label oral antibiotics. Show all posts
Showing posts with label oral antibiotics. Show all posts
Wednesday, 21 August 2013
Friday, 8 March 2013
Naughty Blogger!
Oh dear naughty blogger! *smacks hand*
In my defence I've had a rough start to the year with our first IVF cycle with our surrogate ending with a chemical pregnancy (see surrogacy blog for more details). So my head has been all over the place, one minute I thought I was going to be a mummy and the next minute I wasn't. Anyway we are going to be trying again very soon and I hope to have better news on that front next time!
So it has been my birthday and I'm very quickly heading towards the 30 marker! At least I'm an even number now, I'm slightly strange I know...!
Pete and I went for a short trip to the lakes after our bad news regarding the pregnancy, to spend some quality time together, alone and away from everything. I know i really needed it, I'm not sure about Pete. Amongst other things, one thing I hate about not working is the loneliness and troubles it brings. Sat in the same building day after day with only a dog and your thoughts for company. It's dangerous and I really, really want it to start getting warmer so I have the ability and will to get out of the house more often! It's simply too cold to venture out very often, its not worth it with the coughing and breathlessness it brings.
Last Monday I went to see Girls Aloud, yep, fourth time! I think I may possibly have seen them every time they have done a tour. I also booked tickets with my friends last night to go see The Big Reunion tour in May. If you haven't heard about this, it is bands from the 90's reuniting like 5ive, 911 and Atomic Kitten and putting on a massive cheesy concert, it's going to be great!
In CF news I have been told I need insulin treatment and then been told actually I might not do. It's all slightly confusing and annoying and has been dragging on since October! My gluclose tolerance test last October came back saying I have mild diabetes, so I monitored my blood sugars for a week and the dietician decided she wanted me to wear a constant monitor for five days. A small catheter is put in your stomach by using some kind of stapler device (really small needle) and then a small probe is attached which constantly monitors your sugars. You still have to prick your finger four times a day to check the monitor was working properly. You can still shower and even go swimming with this device attached to you so it's not too bad to have attached. I then removed it on my own and posted the probe back to the hospital. Here it is
I then caught a cold and as usual started to get chest pains, was sleeping lots and had very little energy, after taking oral Ciprofloxacin for a week I went to the hospital for a check up. My lung function was slightly down to 40% so nothing major and the consultant decided to have a good look at my medical history and test results whilst I was there. He decided I could need insulin looking at my results and he wants to try me on a new nebulised antibiotic called Azli (nebulised Aztreonam) rather than having Tobi (nebulised or inhaled Tobramycin). He said I needed to be admitted to start the insulin and he wanted me to have IVs on the ward rather than home IVs to get some rest as I looked stressed (I was). So I was put in the waiting list and said to wait for them to call me.
After a week of waiting I felt much better and decided I didn't actually need IVs afterall, looks like two weeks of Ciprofloxacin had done the trick for once, seriously, its a miracle! So I called to let them know and turns out my name wasn't even on the board, someone had forgotten to put me on!
The dietician said I still needed to come in to start insulin as I needed to be monitored. Fast forward two more weeks and several phone calls later and I still didn't have a bed due to lots of emergency admittances and I was getting rather annoyed as I wanted to start the damn insulin and also the nebulised Azli.
The main CF dietician who was now back from her holidays decided she wants to retest me as the probe didn't collaborate very well with my own monitoring. She was very apologetic and explained it seems there has been a lack of communication and misunderstanding with what was happening with me. So yesterday I went for the monitor fitting again and to try the new Azli nebuliser.
She explained everything to me and I will try to explain in how I understood it however I do find the whole blood sugars thing very confusing..... I do get high sugars (over 10) but not really high and not in any clear pattern, I also get low sugars (under 4) so she is worried if I had insulin I would get even lower sugars which is dangerous. If I do need treatment they need to work out what type of insulin I'd need, I didn't even know you could get different types! My HbA1c (a measurement taken from your blood) is 48 which is above normal but a good number for someone with diabetes (apparently the aim is between 48-58). So once they get the results from this monitor they are going to decide what to do with me.
Diabetes is something that many people with CF develop and is called CF related diabetes (surprisingly!). From what I've read it's a combination of type 1 and type 2 diabetes. Mucus in the pancreas damages the cells that produce insulin over time and the body becomes insulin resistant due to chronic infection.
So I go back in two weeks to get my results and pick up the Azli they have ordered for me as I tolerated it fine (I can't get if from the GP as it's too expensive).
In my defence I've had a rough start to the year with our first IVF cycle with our surrogate ending with a chemical pregnancy (see surrogacy blog for more details). So my head has been all over the place, one minute I thought I was going to be a mummy and the next minute I wasn't. Anyway we are going to be trying again very soon and I hope to have better news on that front next time!
So it has been my birthday and I'm very quickly heading towards the 30 marker! At least I'm an even number now, I'm slightly strange I know...!
Pete and I went for a short trip to the lakes after our bad news regarding the pregnancy, to spend some quality time together, alone and away from everything. I know i really needed it, I'm not sure about Pete. Amongst other things, one thing I hate about not working is the loneliness and troubles it brings. Sat in the same building day after day with only a dog and your thoughts for company. It's dangerous and I really, really want it to start getting warmer so I have the ability and will to get out of the house more often! It's simply too cold to venture out very often, its not worth it with the coughing and breathlessness it brings.
Last Monday I went to see Girls Aloud, yep, fourth time! I think I may possibly have seen them every time they have done a tour. I also booked tickets with my friends last night to go see The Big Reunion tour in May. If you haven't heard about this, it is bands from the 90's reuniting like 5ive, 911 and Atomic Kitten and putting on a massive cheesy concert, it's going to be great!
In CF news I have been told I need insulin treatment and then been told actually I might not do. It's all slightly confusing and annoying and has been dragging on since October! My gluclose tolerance test last October came back saying I have mild diabetes, so I monitored my blood sugars for a week and the dietician decided she wanted me to wear a constant monitor for five days. A small catheter is put in your stomach by using some kind of stapler device (really small needle) and then a small probe is attached which constantly monitors your sugars. You still have to prick your finger four times a day to check the monitor was working properly. You can still shower and even go swimming with this device attached to you so it's not too bad to have attached. I then removed it on my own and posted the probe back to the hospital. Here it is
I then caught a cold and as usual started to get chest pains, was sleeping lots and had very little energy, after taking oral Ciprofloxacin for a week I went to the hospital for a check up. My lung function was slightly down to 40% so nothing major and the consultant decided to have a good look at my medical history and test results whilst I was there. He decided I could need insulin looking at my results and he wants to try me on a new nebulised antibiotic called Azli (nebulised Aztreonam) rather than having Tobi (nebulised or inhaled Tobramycin). He said I needed to be admitted to start the insulin and he wanted me to have IVs on the ward rather than home IVs to get some rest as I looked stressed (I was). So I was put in the waiting list and said to wait for them to call me.
After a week of waiting I felt much better and decided I didn't actually need IVs afterall, looks like two weeks of Ciprofloxacin had done the trick for once, seriously, its a miracle! So I called to let them know and turns out my name wasn't even on the board, someone had forgotten to put me on!
The dietician said I still needed to come in to start insulin as I needed to be monitored. Fast forward two more weeks and several phone calls later and I still didn't have a bed due to lots of emergency admittances and I was getting rather annoyed as I wanted to start the damn insulin and also the nebulised Azli.
The main CF dietician who was now back from her holidays decided she wants to retest me as the probe didn't collaborate very well with my own monitoring. She was very apologetic and explained it seems there has been a lack of communication and misunderstanding with what was happening with me. So yesterday I went for the monitor fitting again and to try the new Azli nebuliser.
She explained everything to me and I will try to explain in how I understood it however I do find the whole blood sugars thing very confusing..... I do get high sugars (over 10) but not really high and not in any clear pattern, I also get low sugars (under 4) so she is worried if I had insulin I would get even lower sugars which is dangerous. If I do need treatment they need to work out what type of insulin I'd need, I didn't even know you could get different types! My HbA1c (a measurement taken from your blood) is 48 which is above normal but a good number for someone with diabetes (apparently the aim is between 48-58). So once they get the results from this monitor they are going to decide what to do with me.
Diabetes is something that many people with CF develop and is called CF related diabetes (surprisingly!). From what I've read it's a combination of type 1 and type 2 diabetes. Mucus in the pancreas damages the cells that produce insulin over time and the body becomes insulin resistant due to chronic infection.
So I go back in two weeks to get my results and pick up the Azli they have ordered for me as I tolerated it fine (I can't get if from the GP as it's too expensive).
Thursday, 5 July 2012
Holiday Tips
When
you have CF and you go on holiday, there is so much more to think
about. I absolutely hate packing/planning for holidays because of
this reason! Here are some hints and tips for holidays I have picked
up over the years.....
Take
all medication/physio stuff/nebs in your hand luggage, your suitcase
might get lost! I have never been questioned about medication in my
bag. They once looked at my I-neb as it looks abit like a bomb on the
scanner and they once put my nebuliser stuff through a vapour machine
as they are liquid, I was informed I should bring the pharmacy labels
with me for the nebuliser stuff due to them being liquid but that was
it.
I'm
managing OK with my weight at the moment and I always eat loads on
holiday anyway so I didn't bother taking any supplements with me. I
think if I was on overnight feeds etc i'd probably just manage
without them for week or take oral supplements instead, but even that
would cause packing/weight problems
Remember
to take a clear bag to put your liquids in for the airport checks
Make
sure you get a letter from your CF team that says you are fit to fly
with/without oxygen and a letter asking customs to let you through
with your medication
I
use a Frio bag to keep my
tobi and pulmozyme nebs cool whilst travelling, I got mine off Amazon
and I think its an extra large size. This won't be good enough for
the whole holiday, you need to make sure your hotel room has a
fridge! However it's OK for a 1-2 days travelling
If
you need oxygen on your flight keep checking they know you need
oxygen when you check in, when you get on the plane, because I'm
telling you, these airlines seem to be useless!
Remember
to take some washing up liquid to wash your nebs with after use! I
have yet to write to Fairy and suggest they make a travel sized
washing up liquid...! What I tend to do is try to not end up taking a
full bottle of washing up liquid that will bump the weight of my
suitcase up!
Unless
your hotel room has a cooker or kettle I have yet to find a way to
sterilise my nebs whilst on holiday. I don't really fancy taking a
steriliser with me so I just make sure they have a good boil before
we go away and as soon as we get back
Always
take lots of your food enzymes, god forbid you should lose them or
run out, talk about spoiling your holiday!
For
travel insurance quotes call JD
Travel they have always managed to find me a reasonable-ish
quote...!
I
always try to remember to take a list of all the medication I am on,
just in case I end up in hospital etc!
Unless
you have a kettle to boil water and then let cool down, doing your
nasal rinse can be a pain too. I used bottled water and just put up
with cold water shooting up my sinuses! Not the best but when options
are limited what can you do?!
To
mix up my movicol I saved a water bottle and shock it up in the
bottle, due to lack of spoons.
Take
spare movicols/sennas (or whatever you use for constipation), you
don't want to get blocked up due to dehydration/travel. I had such
bad problems with this on holiday and nearly ran out of supplies even
with my spares! Also, this goes without saying but drink lots
of water, this will help with your chest and bowels
Remember
to take salt tablets, you can get a prescription from your CF team.
People with CF loose lots of salt when they sweat and it needs
replacing, otherwise you can feel ill
Take
an emergency supple of antibiotics/steroids in case your
chest is naughty, I also like to take some spare ventolin and
hypertonic saline nebs.
Doing
physio whilst travelling is a right pain in the arse. It's not
exactly something you can do in public. On the way home I had to miss
my evening physio session as we checked out of our room at 11am but
didn't fly until 9pm, I did my tobi on the plane but not my
hypertonic saline as I knew this would make me cough up sputum which
I am not willing to do on a plane in front of strangers. I knew i'd
have to miss my evening physio so did my pulmozyme in the morning an
hour before my morning session (I usually do it in the evening), I
don't like to do my pulmozyme without doing some physio afterwards as
it loosens everything up but then you are not coughing it up!When we
went to Thailand for out honeymoon I managed to do physio in a
medical room at Dubai airport, that's the only way I can see getting
around not missing it.
I
don't go on two week holidays, not only is it too much to pack/plan
medication wise, I don't like going away for that long! 10 days max
for me! Last time we went for 2 weeks was our honeymoon and I didn't
take enough disks for my I-neb!
Which
leads to my last tip. if you have an I-neb, remember to take enough
disks with you....!!!! And don't forget your I-neb charger!! Also
make sure you will have enough disks when you get home, those disks
can take forever to arrive in the post, trust me!
If
anyone else has any more tips feel fee to leave them in the comments!
Thursday, 1 December 2011
Love on the Transplant List
I'm sorry I haven't blogged much, i'm feeling really rough at the moment. I woke up with a cold last Tuesday and started Amoxicillin straight away to try stop it going any further however I don't think it has worked. Sunday was the worst day, I haven't felt so ill for a long time.
I'm at outpatients tomorrow so will find out if my chest has worsened but I'm almost sure it has, I am getting breathless lying down, talking and just walking around the house. I am coughing thick green sputum up all the time and taking a sputum pot with me everywhere, my chest aches and I've taken to not wearing a bra when possible as it feels too tight and restricts me. I am sleeping better than I was which is a positive, I'm not waking in pools of sweat but freezing anymore and I'm coughing less during the night. I'm just so pissed off (excuse my language!) I don't need this now, its December and I have lots coming up which I have been looking forward to. My appetite is poor although slightly improved today (I actually had some breakfast and attempting some lunch) and my skandishakes are a year out of date, they do not taste good!
I am so bored of just lying around and not doing much in order to try rest! I really do hate this time of the month!
There was an excellent programme on Monday called 'Love on the Transplant List' it is about a CF friend of mine called Kirstie and her journey to receive a transplant with her husband Stuart. It was really well put together and I think it reflects brilliantly how difficult every day tasks can be and how difficult it is to watch your other half dying in front of you. It makes me realise how amazing Pete is to know this could happen to me and not be fazed by it. Obviously my CF is not at this stage and hopefully will not be for a long, long time but it raises awareness of CF and makes people realise how important becoming an organ donor is. Please take the time to watch it on BBC IPlayer if you have not seen it. Kirstie and Stuart were great to let this difficult time be filmed and shared, I think they did a fantastic job! Below is a trailer and the link to watch the whole programme
Link for BBC IPlayer - click here
I'm at outpatients tomorrow so will find out if my chest has worsened but I'm almost sure it has, I am getting breathless lying down, talking and just walking around the house. I am coughing thick green sputum up all the time and taking a sputum pot with me everywhere, my chest aches and I've taken to not wearing a bra when possible as it feels too tight and restricts me. I am sleeping better than I was which is a positive, I'm not waking in pools of sweat but freezing anymore and I'm coughing less during the night. I'm just so pissed off (excuse my language!) I don't need this now, its December and I have lots coming up which I have been looking forward to. My appetite is poor although slightly improved today (I actually had some breakfast and attempting some lunch) and my skandishakes are a year out of date, they do not taste good!
I am so bored of just lying around and not doing much in order to try rest! I really do hate this time of the month!
There was an excellent programme on Monday called 'Love on the Transplant List' it is about a CF friend of mine called Kirstie and her journey to receive a transplant with her husband Stuart. It was really well put together and I think it reflects brilliantly how difficult every day tasks can be and how difficult it is to watch your other half dying in front of you. It makes me realise how amazing Pete is to know this could happen to me and not be fazed by it. Obviously my CF is not at this stage and hopefully will not be for a long, long time but it raises awareness of CF and makes people realise how important becoming an organ donor is. Please take the time to watch it on BBC IPlayer if you have not seen it. Kirstie and Stuart were great to let this difficult time be filmed and shared, I think they did a fantastic job! Below is a trailer and the link to watch the whole programme
Link for BBC IPlayer - click here
Wednesday, 12 October 2011
Keeping Cool
I finished the cipro on Monday and I can't say I'm feeling any better, worse if anything as I had forgotten that cipro has nasty side effects like all over body aching!
I'm not extremely ill or anything I just feel like I'm in trance all the time. You know when you drive somewhere but you turn off and wonder how you got there without crashing, that how I feel all the time. I'd doing the motions but my mind isn't contributing as much as normal, its like I'm outside of my body so I can't feel how exhausted I am. I think this can give a false perception of how I feel as I'm still doing everything I need to so from the outside I seem OK, and if I really need to I can switch my brain back in to gear to have a short conversation etc. I think it's some kind of technique I've established to get on with life, if you turn your mind off it uses less energy I suppose! I have less battery power so I reserve it for daily tasks. I don't feel like this all the time so i know it's not normal.
I also keep getting a sharp pain in my right lung that passes after a few seconds. However when its there it's not nice and it's usually when I need to cough and it hurts so much to take a deep breath, which you need to do to cough. It happens more when I lay down, no idea why!
In addition to this I know my chest is struggling as I'm breathless easier and my shoulders and neck ache constantly. I can tell my posture has worsened and this is because when you struggle to breathe your body makes you hunch and lift your shoulders as this makes it easier somehow. I don't even realise I'm doing it, I'm trying to sit up straight but it makes it ache more and if I try to relax my shoulders and move them away from my ears, they go back up as soon as I stop thinking about it. I could do with a really good massage by someone qualified but I don't think I could afford it as I think sports therapists are quite expensive and I don't know if it would help really.
So I called up yesterday to start some IV's, I'm fed up and just want to feel less like a robot and faster than a slug!
I'm starting my IVs next Wednesday, they couldn't fit me in this week, a sign that they are busy! I have to cancel my flu jab as can't have it whilst on my IVs, thankfully the CF ward have started doing them again though so I don't have to try book another through my GPs, it's a total nightmare! The CF ward stopped doing them for a few years to save money, however I think they may have realised lots of patients don't get them if they have to go through their GP and it ended up costing them more due to increasing numbers of inpatients during winter and patients requiring home IVs! That's my theory anyway!
IVs create a problem for me as we are staying in a hotel for 2 nights whilst I will be on the IVs. The hotel is paid for with no refund and we have bought the tickets for the surrogacy UK AGM already, plus I really want to go. The hotel rooms don't have fridges but thankfully have baths and I've requested a room near reception to make things easier for me. I looked at buying a portable mini fridge however the minimum temperature they reach is 18 degrees, how can that be classed as a fridge?! So I've borrowed a cool box off my dad and going to test it out to see how cool it stays over 1-2 days, the drugs need to be kept at 2-9 degrees so failing that I'll have to see if I can keep my IVs in a staff fridge! I'm slightly nervous about everyone at surrogacy UK seeing my needle etc but to be honest I'm sure it will be covered anyway by a cardigan as it's not exactly warm is it?!
I'm not extremely ill or anything I just feel like I'm in trance all the time. You know when you drive somewhere but you turn off and wonder how you got there without crashing, that how I feel all the time. I'd doing the motions but my mind isn't contributing as much as normal, its like I'm outside of my body so I can't feel how exhausted I am. I think this can give a false perception of how I feel as I'm still doing everything I need to so from the outside I seem OK, and if I really need to I can switch my brain back in to gear to have a short conversation etc. I think it's some kind of technique I've established to get on with life, if you turn your mind off it uses less energy I suppose! I have less battery power so I reserve it for daily tasks. I don't feel like this all the time so i know it's not normal.
I also keep getting a sharp pain in my right lung that passes after a few seconds. However when its there it's not nice and it's usually when I need to cough and it hurts so much to take a deep breath, which you need to do to cough. It happens more when I lay down, no idea why!
In addition to this I know my chest is struggling as I'm breathless easier and my shoulders and neck ache constantly. I can tell my posture has worsened and this is because when you struggle to breathe your body makes you hunch and lift your shoulders as this makes it easier somehow. I don't even realise I'm doing it, I'm trying to sit up straight but it makes it ache more and if I try to relax my shoulders and move them away from my ears, they go back up as soon as I stop thinking about it. I could do with a really good massage by someone qualified but I don't think I could afford it as I think sports therapists are quite expensive and I don't know if it would help really.
So I called up yesterday to start some IV's, I'm fed up and just want to feel less like a robot and faster than a slug!
I'm starting my IVs next Wednesday, they couldn't fit me in this week, a sign that they are busy! I have to cancel my flu jab as can't have it whilst on my IVs, thankfully the CF ward have started doing them again though so I don't have to try book another through my GPs, it's a total nightmare! The CF ward stopped doing them for a few years to save money, however I think they may have realised lots of patients don't get them if they have to go through their GP and it ended up costing them more due to increasing numbers of inpatients during winter and patients requiring home IVs! That's my theory anyway!
IVs create a problem for me as we are staying in a hotel for 2 nights whilst I will be on the IVs. The hotel is paid for with no refund and we have bought the tickets for the surrogacy UK AGM already, plus I really want to go. The hotel rooms don't have fridges but thankfully have baths and I've requested a room near reception to make things easier for me. I looked at buying a portable mini fridge however the minimum temperature they reach is 18 degrees, how can that be classed as a fridge?! So I've borrowed a cool box off my dad and going to test it out to see how cool it stays over 1-2 days, the drugs need to be kept at 2-9 degrees so failing that I'll have to see if I can keep my IVs in a staff fridge! I'm slightly nervous about everyone at surrogacy UK seeing my needle etc but to be honest I'm sure it will be covered anyway by a cardigan as it's not exactly warm is it?!
Wednesday, 28 September 2011
All Clear
Well I relieved to say my constipation problem has finally seemed to sort itself out. The day before Pete did the Great North Run I felt terribly blocked and bloated so after emailing a CF friend for advice I took 6 movicol together and 2 senna. Then the next morning I took another senna. I was slightly worried I could have a problem since we would be outside all day with only port-a-loos! But nothing seemed to happen. Then that night I took 2 senna and 4 movicols. This seemed to get things going and then I have gradually reduced the number of movicols, I'm now down to 1 movicol and 2 senna each night. I'm going to try have the senna alternate nights but we'll see how it goes. The Doctor says this is fine and to do whatever I want really as long as things are moving along.
So my suggestion is to take up to 8 movicols in one go if you are blocked up ( take at night), slowly increasing the dose doesn't seem to help. Just give it a blast and then slowly reduce the sachets.
Last week I did a presentation at Scope, I did it about 2 years ago and was asked to do it again for new mentors. I just used the same slide show but updated a few things, mainly the bits about people I know with CF as some have sadly passed away and others have had transplants. I managed to print the handouts in the office from the usb stick but then the usb stick would not work in the projector laptop, so we tried it in 2 other laptops including the one in the office I had just used and it wouldn't work in any! Nightmare! So I had to do the presentation from the handout which was disappointing since some of the pictures were not very clear on it. It always amazes me how little people know about CF, one guy said he didn't realise it was so serious, nearly everyone had no idea how much treatment is involved. So I'm glad that I can help try educate people.
Pete and I took Alfie for some behavioural training on Sunday which was interesting. Alfie can be funny with strangers, children and other dogs and we were thinking of having him neutered to try help with the problem. The vet told us we would need to incorporate it with some behavioural training so I contacted the place were we took him for his dog training classes and they referred to the behavioural specialist. She says not to get him neutered until she has assessed him as it could make him worse. We had an hour with her on Sunday and then we get 3 follow up sessions, which will involve her bringing in a dog to teach Alfie how to behave with them, also we will use a doll that makes baby noises to get him used to children and teach him how to behave around strangers. The good news is that he is not classed as aggressive, he doesn't just go around attacking people, I think she used the term 'highly reactive' haha. People who have met Alfie will laugh reading this because he can be a little bugger and has a reputation, but I've always argued he isn't aggressive, once he knows people he is fine and so loving and gentle with them and eager to please. Anyway we have some tasks we need to do before our next session, so fingers crossed it helps Alfie become a less stressed out doggie!
I had an Outpatients appointment yesterday and have started some oral ciprofloxacin as I think I have picked up a virus. I'm waking with a headache every day, sweating loads in the night, feeling tired, getting breathless more easy and my sputum is thicker. You can tell winter is coming, I hate winter because I catch every damn cold going and need IVs! Fingers crossed that isn't the case this time.
My lung function is slightly down to 41% from 43% which apparently is stable (it annoys me when they say that, a small decrease in % means more for me as it never moves too dramatically), I weigh 57kg (yikes, fattie!) and all my annual blood results came back OK. From what I recall they test all vitamin levels, iron levels, if I'm anemic, my crp which is your infection level (mine is 17, it should be below 10 but mine never gets below 10 apparently), my aspergillus levels (fungus) both of which are higher than they like but mine never get to those levels (why am I not surprised), my thyroid hormone level, calcium level (slightly low) and blood sugars. That's all I can remember! I have been given permission to come off Voriconazole for good now until my symptoms start to reappear so that's good news as the side effects were getting worse with each course of treatment!
By the way, we still have a hole in our bedroom ceiling and so still sleeping in the spare room. The insurance company are taking forever!!
So my suggestion is to take up to 8 movicols in one go if you are blocked up ( take at night), slowly increasing the dose doesn't seem to help. Just give it a blast and then slowly reduce the sachets.
Last week I did a presentation at Scope, I did it about 2 years ago and was asked to do it again for new mentors. I just used the same slide show but updated a few things, mainly the bits about people I know with CF as some have sadly passed away and others have had transplants. I managed to print the handouts in the office from the usb stick but then the usb stick would not work in the projector laptop, so we tried it in 2 other laptops including the one in the office I had just used and it wouldn't work in any! Nightmare! So I had to do the presentation from the handout which was disappointing since some of the pictures were not very clear on it. It always amazes me how little people know about CF, one guy said he didn't realise it was so serious, nearly everyone had no idea how much treatment is involved. So I'm glad that I can help try educate people.
Pete and I took Alfie for some behavioural training on Sunday which was interesting. Alfie can be funny with strangers, children and other dogs and we were thinking of having him neutered to try help with the problem. The vet told us we would need to incorporate it with some behavioural training so I contacted the place were we took him for his dog training classes and they referred to the behavioural specialist. She says not to get him neutered until she has assessed him as it could make him worse. We had an hour with her on Sunday and then we get 3 follow up sessions, which will involve her bringing in a dog to teach Alfie how to behave with them, also we will use a doll that makes baby noises to get him used to children and teach him how to behave around strangers. The good news is that he is not classed as aggressive, he doesn't just go around attacking people, I think she used the term 'highly reactive' haha. People who have met Alfie will laugh reading this because he can be a little bugger and has a reputation, but I've always argued he isn't aggressive, once he knows people he is fine and so loving and gentle with them and eager to please. Anyway we have some tasks we need to do before our next session, so fingers crossed it helps Alfie become a less stressed out doggie!
I had an Outpatients appointment yesterday and have started some oral ciprofloxacin as I think I have picked up a virus. I'm waking with a headache every day, sweating loads in the night, feeling tired, getting breathless more easy and my sputum is thicker. You can tell winter is coming, I hate winter because I catch every damn cold going and need IVs! Fingers crossed that isn't the case this time.
My lung function is slightly down to 41% from 43% which apparently is stable (it annoys me when they say that, a small decrease in % means more for me as it never moves too dramatically), I weigh 57kg (yikes, fattie!) and all my annual blood results came back OK. From what I recall they test all vitamin levels, iron levels, if I'm anemic, my crp which is your infection level (mine is 17, it should be below 10 but mine never gets below 10 apparently), my aspergillus levels (fungus) both of which are higher than they like but mine never get to those levels (why am I not surprised), my thyroid hormone level, calcium level (slightly low) and blood sugars. That's all I can remember! I have been given permission to come off Voriconazole for good now until my symptoms start to reappear so that's good news as the side effects were getting worse with each course of treatment!
By the way, we still have a hole in our bedroom ceiling and so still sleeping in the spare room. The insurance company are taking forever!!
Thursday, 21 July 2011
4 Months Lucky
Oh dear, how can things go wrong so quickly?!
Last Thursday I started with a headache that decided it was going to stay until Sunday, so I was taking pain killers religiously to keep it under control. We took our nephew to LegoLand at the Trafford Centre on the Friday and had a great time, here are some pictures:
Last Thursday I started with a headache that decided it was going to stay until Sunday, so I was taking pain killers religiously to keep it under control. We took our nephew to LegoLand at the Trafford Centre on the Friday and had a great time, here are some pictures:
On Saturday night we went out for a meal with some friends we have made at Surrogacy UK which was really nice, we haven't seen anyone for awhile due to a lack of socials so it was nice to have a catch up. Then on Sunday Pete was as the cricket all day and I just had a relaxing day as I'd had a busy week and just wanted to get some rest!
On Monday morning I woke up and felt like someone had punched my face, my whole face was throbbing, my nose, around my eyes, the top of my head, it was horrible! I called the hospital and told the Doctor I thought it was my sinuses as I'd had a headache for 4 days and now my face was throbbing. He agreed to post me a prescription for Amoxicillin since my chest was OK for the minute but to call if my chest started to become a problem.
By Wednesday (prescription still hadn't arrived, they send them 2nd class!) I was not feeling good at all, chest aching, lack of energy, runny nose, coughing lots, sweating during the night, having problems sleeping, I've had to sleep propped up the last two nights just so that I can breathe properly and I've taken kalms to help me sleep. On Monday night I was hallucinating and hardly got any sleep, it was so scary! I saw a big dog on the bed, a spider dangling from the ceiling onto the bed, at one point I thought Pete was just laid there starring at me, he wasn't at all, he had his back to me! Another time I thought he had all rags in his hair, then I saw the room was full of leaves and at one point the light in the room was flashing. I've never experienced anything like it! I think its the Voriconazole, as I started that on Sunday and it says it is one of the side effects, I've never had it like that before though!
So surprise surprise I am starting IVs on Monday, its the earliest they could fit me in, wish I was starting earlier to be honest, Monday seems ages away! I've had to cancel my mentoring session this week that I volunteer as at Scope and I also had to cancel my meeting to start up the Scope Mentoring blog again. I'm just sat around not doing much, yesterday I had a bath instead of a shower as I felt too tired to shower, I wore my tracksuit bottoms, a sure sign I'm feeling bad! I had to go to Tesco to get some food and it was raining very heavily, no surprises that the disabled spaces were taken by people without stickers, always happens when it rains! Coughed my guts up walking around the shop, at least people get out of my way... was drenched by the time I got home. Bet I looked a right sight, never mind....!!
I've gone 4 months without needing IVs, so I've done well, my average is 3 months. So I can't complain, bring on the IVs!
PS - I have been having problems leaving comments on other peoples blogs, so if you are having the same problem, try unticking the 'save my details' box
On Monday morning I woke up and felt like someone had punched my face, my whole face was throbbing, my nose, around my eyes, the top of my head, it was horrible! I called the hospital and told the Doctor I thought it was my sinuses as I'd had a headache for 4 days and now my face was throbbing. He agreed to post me a prescription for Amoxicillin since my chest was OK for the minute but to call if my chest started to become a problem.
By Wednesday (prescription still hadn't arrived, they send them 2nd class!) I was not feeling good at all, chest aching, lack of energy, runny nose, coughing lots, sweating during the night, having problems sleeping, I've had to sleep propped up the last two nights just so that I can breathe properly and I've taken kalms to help me sleep. On Monday night I was hallucinating and hardly got any sleep, it was so scary! I saw a big dog on the bed, a spider dangling from the ceiling onto the bed, at one point I thought Pete was just laid there starring at me, he wasn't at all, he had his back to me! Another time I thought he had all rags in his hair, then I saw the room was full of leaves and at one point the light in the room was flashing. I've never experienced anything like it! I think its the Voriconazole, as I started that on Sunday and it says it is one of the side effects, I've never had it like that before though!
So surprise surprise I am starting IVs on Monday, its the earliest they could fit me in, wish I was starting earlier to be honest, Monday seems ages away! I've had to cancel my mentoring session this week that I volunteer as at Scope and I also had to cancel my meeting to start up the Scope Mentoring blog again. I'm just sat around not doing much, yesterday I had a bath instead of a shower as I felt too tired to shower, I wore my tracksuit bottoms, a sure sign I'm feeling bad! I had to go to Tesco to get some food and it was raining very heavily, no surprises that the disabled spaces were taken by people without stickers, always happens when it rains! Coughed my guts up walking around the shop, at least people get out of my way... was drenched by the time I got home. Bet I looked a right sight, never mind....!!
I've gone 4 months without needing IVs, so I've done well, my average is 3 months. So I can't complain, bring on the IVs!
PS - I have been having problems leaving comments on other peoples blogs, so if you are having the same problem, try unticking the 'save my details' box
Monday, 28 February 2011
Lost Battle
Well I'm afraid the cold won.
I started IV's today, I'm quite fed up if I'm honest. It's only about 4 or 5 weeks since my last set of IV's.
After my last post I developed a terrible productive cough and by the Friday I was coughing up about 2 sputum pots worth of sputum a day, I usually cough up about half a pot in a day. I'm not sure how much one sputum pot holds, maybe 60mls? I literally had to have a pot with me at all times as every time I coughed, sputum came up and it was large and thick. I was also coughing sputum up in the night which I don't usually do and waking up covered in sweat.
So I called the hospital on Thursday and asked if I could start oral ciprofloxacin, I was told by a Doctor I don't know that I needed to come to outpatients on the next day. So I went to outpatients the next day which was a pain as the fridge man was coming anytime before 1pm and my appointment was at 1.10pm, so Pete had to finish work at lunchtime as the guy still hadn't arrived by 12 and I didn't know how long he would take when he arrived. In the end he arrived at 12.15 and was gone by 12.30, but Pete had set off by then. Never mind!
At outpatients I was informed that in future to ask for one of the main CF doctors as they would have just put me straight on IVs or just told me to take cipro without seeing me, how frustrating!! Anyway my lung function was actually up to 44%, my weight was stable and my sats were 'acceptable' so I was sent home on cipro and told to phone back on Monday to update them.
Saturday was a horrible day, I think the cipro made my whole body ache and was coughing so much it was hurting my back and shoulders. I had to cancel the night out for my friends birthday and my friend wanted me to at least go around to see them before they went into town, but I couldn't face having to cough in to a pot in front of my friends and their friends who I don't even know. I hate seeing people cough up sputum and I have CF, so I can imagine how much it freaks other people out and it's just so embarrassing!
On Sunday afternoon I started to feel better, I was coughing less and even though I was still coughing loads of sputum up, it was less then previously. So on Monday I called the hospital and said I was improving, so I was told to give it a few more days on the cipro.
By Thursday I'd had enough, I am still coughing, there is just sputum sat constantly in my throat and in my chest, when I breath I can hear it bubbling and I'm starting to get headaches from the coughing. However now I am also getting breathless easily, for example I cleaned the table last night after tea and couldn't catch my breath to shout Alfie to come in from outside. When I do my physio it's like my chest tightens up and even though I know there is sputum there I can't get it up. So I've started IV's today, tobramycin and ceftazidime, I asked for tobramycin as I think it's better than colomycin, plus it's once day so easier to organise around!
My lung function today was fev1 39% fvc 54%, weight is still stable but my sats are 94% which seems low for me. Nobody seems concerned about it though, I suppose it just backs up the fact I'm feeling breathless.
I have been up to other things, my like doesn't revolve around CF even though you might think so reading this blog at times! When you have CF you soon learn that the world carries on and so must you. Pete and I went for Tapas last night, I watched Come Dine with Me on Saturday and she made Tapas and I just had an urge for it so we went the next day. My knitting project is coming on well and I can now cast on and cast off, wahoo! I've also been doing my voluntary work and meeting my new mentee this week and I'm going for a massage session/training which should be good!
I started IV's today, I'm quite fed up if I'm honest. It's only about 4 or 5 weeks since my last set of IV's.
After my last post I developed a terrible productive cough and by the Friday I was coughing up about 2 sputum pots worth of sputum a day, I usually cough up about half a pot in a day. I'm not sure how much one sputum pot holds, maybe 60mls? I literally had to have a pot with me at all times as every time I coughed, sputum came up and it was large and thick. I was also coughing sputum up in the night which I don't usually do and waking up covered in sweat.
So I called the hospital on Thursday and asked if I could start oral ciprofloxacin, I was told by a Doctor I don't know that I needed to come to outpatients on the next day. So I went to outpatients the next day which was a pain as the fridge man was coming anytime before 1pm and my appointment was at 1.10pm, so Pete had to finish work at lunchtime as the guy still hadn't arrived by 12 and I didn't know how long he would take when he arrived. In the end he arrived at 12.15 and was gone by 12.30, but Pete had set off by then. Never mind!
At outpatients I was informed that in future to ask for one of the main CF doctors as they would have just put me straight on IVs or just told me to take cipro without seeing me, how frustrating!! Anyway my lung function was actually up to 44%, my weight was stable and my sats were 'acceptable' so I was sent home on cipro and told to phone back on Monday to update them.
Saturday was a horrible day, I think the cipro made my whole body ache and was coughing so much it was hurting my back and shoulders. I had to cancel the night out for my friends birthday and my friend wanted me to at least go around to see them before they went into town, but I couldn't face having to cough in to a pot in front of my friends and their friends who I don't even know. I hate seeing people cough up sputum and I have CF, so I can imagine how much it freaks other people out and it's just so embarrassing!
On Sunday afternoon I started to feel better, I was coughing less and even though I was still coughing loads of sputum up, it was less then previously. So on Monday I called the hospital and said I was improving, so I was told to give it a few more days on the cipro.
By Thursday I'd had enough, I am still coughing, there is just sputum sat constantly in my throat and in my chest, when I breath I can hear it bubbling and I'm starting to get headaches from the coughing. However now I am also getting breathless easily, for example I cleaned the table last night after tea and couldn't catch my breath to shout Alfie to come in from outside. When I do my physio it's like my chest tightens up and even though I know there is sputum there I can't get it up. So I've started IV's today, tobramycin and ceftazidime, I asked for tobramycin as I think it's better than colomycin, plus it's once day so easier to organise around!
My lung function today was fev1 39% fvc 54%, weight is still stable but my sats are 94% which seems low for me. Nobody seems concerned about it though, I suppose it just backs up the fact I'm feeling breathless.
I have been up to other things, my like doesn't revolve around CF even though you might think so reading this blog at times! When you have CF you soon learn that the world carries on and so must you. Pete and I went for Tapas last night, I watched Come Dine with Me on Saturday and she made Tapas and I just had an urge for it so we went the next day. My knitting project is coming on well and I can now cast on and cast off, wahoo! I've also been doing my voluntary work and meeting my new mentee this week and I'm going for a massage session/training which should be good!
Wednesday, 27 October 2010
Random Events
I went out on Saturday and had a really good night, I'm very sensible on nights out and take a coat and scarf with me when it starts to get cold. You will notice alot of girls are not so sensible, apparently it is a northern thing but I don't know really.
Something random happened that night when I went to sleep. I woke up the next morning and saw Alfie's collar was on my bedside table. Alfie had slept in the bed with us that night as a treat but I have no recollection of taking off his collar! I know I had alot to drink but I don't do weird stuff when I'm drunk and I certainly don't forget things that I do, do! So I think I must have removed it in my sleep! Or Pete removed it and is playing with my mind! I asked Alfie what happened but he is staying quiet on the matter...
It gets more random...
Sunday my face was hurting and I just assumed it was due to dry skin from drinking too much. However on Monday my nose really started to hurt, not the nostrils but the actual bone and by Tuesday I had a small swollen area and it was very painful. I was finding it difficult to do my physio as the pep mask hurt when it pressed on my nose and my nose also hurt when I coughed! So today I went to the GP's thinking I would be informed I must have punched myself in my sleep (I wouldn't be surprised after the collar incident). But the GP thinks I have the start of an infection, he said it looked red and felt hot. So he has put me on a weeks worth of flucloxacillin to help calm it. How random is that?! He has no idea what has caused it and neither do I really! The only thing I can think of, is that I could have used water by mistake that hadn't been boiled when I did one of my sinus rinses at the weekend!
The good news is that I still don't have diabetes, my glucose tolerance test came back fine. So that's a relief like it is every year!
Something random happened that night when I went to sleep. I woke up the next morning and saw Alfie's collar was on my bedside table. Alfie had slept in the bed with us that night as a treat but I have no recollection of taking off his collar! I know I had alot to drink but I don't do weird stuff when I'm drunk and I certainly don't forget things that I do, do! So I think I must have removed it in my sleep! Or Pete removed it and is playing with my mind! I asked Alfie what happened but he is staying quiet on the matter...
It gets more random...
Sunday my face was hurting and I just assumed it was due to dry skin from drinking too much. However on Monday my nose really started to hurt, not the nostrils but the actual bone and by Tuesday I had a small swollen area and it was very painful. I was finding it difficult to do my physio as the pep mask hurt when it pressed on my nose and my nose also hurt when I coughed! So today I went to the GP's thinking I would be informed I must have punched myself in my sleep (I wouldn't be surprised after the collar incident). But the GP thinks I have the start of an infection, he said it looked red and felt hot. So he has put me on a weeks worth of flucloxacillin to help calm it. How random is that?! He has no idea what has caused it and neither do I really! The only thing I can think of, is that I could have used water by mistake that hadn't been boiled when I did one of my sinus rinses at the weekend!
The good news is that I still don't have diabetes, my glucose tolerance test came back fine. So that's a relief like it is every year!
Monday, 2 August 2010
The Common Cold
Somehow over the weekend I have managed to develop a cold! It only dawned on my last night that it could be a cold, I already mentioned I was achy and tired last week. Then on Saturday I developed a headache which I thought was a tension headache because of the surrogacy social event. Then yesterday I realised my nose felt bunged up, not blocked as I can still breathe through it, but kind of throbbing between my eyes because it feels like there is extra mucus squeezed in up there. So I thought about it all, as my chest has being quite productive the past week and the mucus has been lighter in colour which would indicate to me its not sputum from the depths of my lungs, but more like snot (yes lovely I know!) and I have come to the conclusion I have a cold. I don't seem to get colds very often, however when I woke up this morning I am convinced its what it is. My head feels crammed and the pressure is not nice and my chest feels heavy because I'm having to think about breathing more then usual if that makes any sense.
I'm not very happy about this as it is Pete and I's trip to London next week and I don't want it to make my chest all horrible and ruin the trip. So I have called the hospital and they are writing me a prescription for some Amoxicillin which I'm going to go and collect later. This should hopefully keep me going and give my body a fighting chance! I know antibiotics don't work against viruses, however I think the reason a cold makes my chest worse is because it makes my body weaker? So the infections get stronger? So the antibiotics help me with the fight. That's my theory anyway! The doctor agreed that I probably needed some too, I probably wouldn't have bothered to call them if I wasn't going away next week.
I also started voriconazole on Sunday as its my month on again, so that should help keep the nasty fungus' in order!
The social event on Saturday was great! It's weird, because I want them to see me as well enough to look after a child so I was trying to hide my CF to some extent i.e. trying not to cough, discreetly taking my tablets, made out I work part time when in reality its not really part time atall! Not that I lied or anything, I just find it interesting how in different situations I make myself come across differently depending on the situation and what I want them to think of me! I hate it when people ask me what my job is, its not really an area I want to get into with some people I have just met! I hate the thought of people thinking that I'm either lazy or that I'm this really sick person! We all know how the media portray people who don't work and receive state benefits, it's not in a positive way!
You can read more on the social event on my surrogacy blog, it really was nice to meet others in our situation and learn more about the 'surrogacy' world. I was so tired afterwards, socialising can be such hard work, especially when its with new people so you are on your guard more. I had a kip on the way back and also when I got home!
I'm not very happy about this as it is Pete and I's trip to London next week and I don't want it to make my chest all horrible and ruin the trip. So I have called the hospital and they are writing me a prescription for some Amoxicillin which I'm going to go and collect later. This should hopefully keep me going and give my body a fighting chance! I know antibiotics don't work against viruses, however I think the reason a cold makes my chest worse is because it makes my body weaker? So the infections get stronger? So the antibiotics help me with the fight. That's my theory anyway! The doctor agreed that I probably needed some too, I probably wouldn't have bothered to call them if I wasn't going away next week.
I also started voriconazole on Sunday as its my month on again, so that should help keep the nasty fungus' in order!
The social event on Saturday was great! It's weird, because I want them to see me as well enough to look after a child so I was trying to hide my CF to some extent i.e. trying not to cough, discreetly taking my tablets, made out I work part time when in reality its not really part time atall! Not that I lied or anything, I just find it interesting how in different situations I make myself come across differently depending on the situation and what I want them to think of me! I hate it when people ask me what my job is, its not really an area I want to get into with some people I have just met! I hate the thought of people thinking that I'm either lazy or that I'm this really sick person! We all know how the media portray people who don't work and receive state benefits, it's not in a positive way!
You can read more on the social event on my surrogacy blog, it really was nice to meet others in our situation and learn more about the 'surrogacy' world. I was so tired afterwards, socialising can be such hard work, especially when its with new people so you are on your guard more. I had a kip on the way back and also when I got home!
Wednesday, 28 April 2010
Ancient Nebulisers
I had outpatients today and had to have my annual bloods done. This meant I had to fast from 9pm last night (not really sure why I have to do this!). They then took 15 tubes of blood from me, I have no idea what they are all for, I know one is to check for clotting and some are to check vitamin levels etc. It took her three attempts to get blood from me, they can't be taken from my port, again not sure why! First she tried in the crook of my arm, then in my right wrist and then my left wrist where she was successful. She said often when people have fasted it makes it harder to take blood, she thinks it might be because they are dehydrated. Anyway we got there in the end!
I also had an ultrasound to check on my liver etc, I have one of these about every 2 years. I had to wear a gown which I have never been made to do before, but it turned out better as no jelly then got on my top or bra. The stuff gets everywhere because she moves the scan thingy over your ribs and back and you end up covered! It doesn't hurt, infact it tickled when she was doing it over my ribs. The only time it hurt abit was when she was ramming it under my ribs to try to get a picture of something, but it wasn't exactly painful.
My fev1 is down to 36%, I can't believe it! My stats are 97% which is good and my weight is down abit at 53.3kg, not surprised really, my appetite has been abit poor lately. I have come to the conclusion that my appetite just goes whenever I am stressed or excited. Because I don't feel unwell the doctor said to just see me in 4 weeks and to call them in the meantime if I start to go downhill. I might just be having a bad day or it could be because I have missed two days of nebs...
Yes you read it right! I-neb nebulisers require disks for them to work. The disk has so many cycles on it and each time you use it, it goes down one, when you get to zero you need another disk otherwise it won't work. I use 5 cycles a day, 4 for my tobi (each tobi dose requires two cycles on the I-neb) and 1 for my Dnase. So a disk with 120 cycles lasts me just over 3 weeks. I have to call the company when I need new disks, can you see where this is going....? In all the moving house madness I didn't realise I had gotten very low and on Saturday I noticed I had 2 cycles left. Whoops! I left the company a message to pick up on Monday and some more disks arrived on Tuesday. But that left me the weekend and Monday with only a Porta-neb to use and one chamber when Tobi and Dnase should be done through different chambers as one stops the other working.
This is me not looking very impressed using the stupid porta-neb to do my Dnase, it took about 20 minutes. I then gave the chamber a good wash and used it to do my Tobi the next day. When you do tobi through this ancient machine, you have to sit with a tube going out of the window which isn't very long, so other people do not breathe it in. Well it took over half an hour to go through, I got bored of sitting right next to the window looking like I was smoking a bong and turned it off in the end. You don't get these problems with the I-Neb! Anyway I decided I wasn't doing it anymore, it takes the mick, no wonder people never used to be compliant with their nebulisers! So I threw the thing back in the cupboard and I hope it never makes a re-appearance anytime soon!
I went out on Saturday night and had a great time. Then went to my Nana's for lunch on Sunday, I was so tired, I just wanted to sleep! Pete's cough is not going, infact it seems to be getting worse, I am terrified of catching it. I have a weeks worth of Amoxicillin in 'Gemma's pharmacy' cupboard which he is taking. When I was on it I had 1g (1000mg) three times a day, I've given it to Pete and even though the instructions say the average dose it 250mg a day with severe infections at 500mg (what the heck are my infections then?!), since the tablets are in 500mg that is what Pete is having three times a day. If it is an infection it should hopefully clear it up and before anyone lectures me on giving someone else my medication, Pete was put on amoxicillin for a manky toenail he had and my dad was put on it for sore tooth, they give it out for anything and everything! Just call me Doctor Gleave..!
We are having a house warming party on Sunday! I hope I don't get too stressed! If it goes OK we might have one for family towards the end of May, this one is for our friends.
Wednesday, 14 October 2009
RIP Mobile Phone
Since I got back from our Honeymoon I have had a headache every day, not necessarily a full blown one but a definite ache there constantly. As you can imagine this is not very nice and I am getting annoyed at it. It's mainly on a morning and it gets worse when I have a coughing episode, for example last night I was doing my physio and the right side of my head felt like it was going to pop everytime I coughed.
I took some books back to the library the other day and the two second walk it took from the car to the library made me cough alot and then voila I got a splitting headache, all from retuning a few books!
Enough is enough, when 2 cocodamol and 2 ibuprofen are not shifting the pain, intervention is required! So I called the hospital on Monday, I had been putting it off as I don't want to end up on IV's which is my dread everytime I dial that number! I spoke to the nurse and asked her if she could send me a prescription for doxy... whatever its called (my medical vocabulary is amazing I tell you...!), surprisingly she said if the doctor said it was OK then that was fine. Wahoo! I didn't even have to go see them! So I am just waiting to receive that and then hopefully it will help stop the headaches as I am assuming it is infection and inflammation in my sinuses.
I have had to buy a new mobile phone as mine decided to start dying on Saturday. It was teasing me and flashing on and off, my poor mobile, I'd hoped it would survive forever but alas its days are over. I had hoped I could buy the same one. This is a sign of me getting old! I can't be bothering learning new functions on a new mobile and my lovely Samsung D800 does everything I require of it. But no, they don't seem to do it anymore and somehow I have ended up buying a touchscreen mobile which I swore I wouldn't do as Pete has one and I can't use it! I know exactly what happened, it was pink, what more can I say...? So since last night I am the owner of a pink Samsung (I kept with the same make to make my transition easier) tocco lite. We will see how it goes, I can see it been a love - hate relationship!
Does anyone else hate having to transfer all your numbers, photos etc to the new phone? I do! I spent all last night doing it, this is part of the reason I put off getting a new phone for so long!
Alfie started his dog training classes again last week, he did very well. There are some massive dogs in this class, like one of those Akita's and a very bouncy Labrador. Despite been surrounded by giants... Alfie did well for his first session, we are starting clicker training this week. Apparently Chihuahua's don't always take to it (why am I not surprised), so we will see how it goes!
Alfie hurt his back leg again on Monday so I was the owner of a hopping, three legged dog for the day. I was going to video it but felt cruel! He is much improved now, he is not screaming anymore when I try touch the offending leg and he is walking normally again, so I think he just pulled or twisted a muscle. I did spend most of Monday holding one of those heat up rice bag thingys to his leg, that dog doesn't realise how lucky he is to have such a caring owner!
I've started back at the gym after a month of not going! I am planning to join yoga as someone on the CF forum said it can help with your lungs. So my plan is... gym on a Monday, swimming on a Wednesday and yoga on a Friday. We will see how I go!
I took some books back to the library the other day and the two second walk it took from the car to the library made me cough alot and then voila I got a splitting headache, all from retuning a few books!
Enough is enough, when 2 cocodamol and 2 ibuprofen are not shifting the pain, intervention is required! So I called the hospital on Monday, I had been putting it off as I don't want to end up on IV's which is my dread everytime I dial that number! I spoke to the nurse and asked her if she could send me a prescription for doxy... whatever its called (my medical vocabulary is amazing I tell you...!), surprisingly she said if the doctor said it was OK then that was fine. Wahoo! I didn't even have to go see them! So I am just waiting to receive that and then hopefully it will help stop the headaches as I am assuming it is infection and inflammation in my sinuses.
I have had to buy a new mobile phone as mine decided to start dying on Saturday. It was teasing me and flashing on and off, my poor mobile, I'd hoped it would survive forever but alas its days are over. I had hoped I could buy the same one. This is a sign of me getting old! I can't be bothering learning new functions on a new mobile and my lovely Samsung D800 does everything I require of it. But no, they don't seem to do it anymore and somehow I have ended up buying a touchscreen mobile which I swore I wouldn't do as Pete has one and I can't use it! I know exactly what happened, it was pink, what more can I say...? So since last night I am the owner of a pink Samsung (I kept with the same make to make my transition easier) tocco lite. We will see how it goes, I can see it been a love - hate relationship!
Does anyone else hate having to transfer all your numbers, photos etc to the new phone? I do! I spent all last night doing it, this is part of the reason I put off getting a new phone for so long!
Alfie started his dog training classes again last week, he did very well. There are some massive dogs in this class, like one of those Akita's and a very bouncy Labrador. Despite been surrounded by giants... Alfie did well for his first session, we are starting clicker training this week. Apparently Chihuahua's don't always take to it (why am I not surprised), so we will see how it goes!
Alfie hurt his back leg again on Monday so I was the owner of a hopping, three legged dog for the day. I was going to video it but felt cruel! He is much improved now, he is not screaming anymore when I try touch the offending leg and he is walking normally again, so I think he just pulled or twisted a muscle. I did spend most of Monday holding one of those heat up rice bag thingys to his leg, that dog doesn't realise how lucky he is to have such a caring owner!
I've started back at the gym after a month of not going! I am planning to join yoga as someone on the CF forum said it can help with your lungs. So my plan is... gym on a Monday, swimming on a Wednesday and yoga on a Friday. We will see how I go!
Monday, 7 September 2009
Housewife Gemma.....!
Had outpatients today, my last one as a single lady may I add!
My fev1 has increased abit to 46% which is promising and my weight is stable (as usual). Apparently my last bloods showed I had a slightly elevated crp level of 39, I love the way they tell me these things and then don't really elaborate on what the implications of this are. I go 'oh right' and they go onto the next thing. Today I saw a registrar who I have never met before but he seemed ok, although he went and got a nurse to watch whilst he listened to my chest. No other doctors do that so don't know what that was about...!
I keep having really vivid and nasty dreams again (mainly wedding related), I assumed this was to due with pre wedding nerves. However then I recalled this happened last time I was on voriconazole so I think it is definitely a side effect. I did ask the doctor about this and he looked at the side effects, there is hallucinations, anxiety, delusions but no mention of nightmares/sleep disturbance so guess it's just me then!
He has given me some ciprofloxin and steroids to take on the honeymoon just incase I start to go downhill or get really wheezy whilst away. I also got a prescription for some salt tablets and some letters to take with saying I am fit to fly with oxygen on long haul and without on short haul flights and another letter saying 'please let Gemma through with all her drugs because she needs them' (not the exact wording!). So I am all ready to go!
My next outpatients appointment isn't until the 23rd October which feels ages away! I'll need a port flush before then though so that will keep my withdrawl symptoms at bay. No seriously, if I don't go to the hospital for many weeks I feel abit panicky, it kind of makes me feel safe been checked up on every few weeks! It might sound stupid but going to hospital and knowing everything is ok is part of my routine in life, so a long break feels weird....!
Alfie and Murphy had a practise run at the dog sitters today, the lady is a performer and was practising singing Abba songs with her friend (who used to be in Emmerdale, trust Alfie to get to hang out with people off the tv!), apparently the dogs sat and watched them which I found quite funny. I took Alfie for walk beforehand to try tire him out abit, he's getting extremely good off his lead now.
This evening I made a fish pie from scratch, I skinned the fish, made the white sauce and the mash potato. It was very nice, quite proud of myself! Getting the hang of this housewife thing hahaha!
My fev1 has increased abit to 46% which is promising and my weight is stable (as usual). Apparently my last bloods showed I had a slightly elevated crp level of 39, I love the way they tell me these things and then don't really elaborate on what the implications of this are. I go 'oh right' and they go onto the next thing. Today I saw a registrar who I have never met before but he seemed ok, although he went and got a nurse to watch whilst he listened to my chest. No other doctors do that so don't know what that was about...!
I keep having really vivid and nasty dreams again (mainly wedding related), I assumed this was to due with pre wedding nerves. However then I recalled this happened last time I was on voriconazole so I think it is definitely a side effect. I did ask the doctor about this and he looked at the side effects, there is hallucinations, anxiety, delusions but no mention of nightmares/sleep disturbance so guess it's just me then!
He has given me some ciprofloxin and steroids to take on the honeymoon just incase I start to go downhill or get really wheezy whilst away. I also got a prescription for some salt tablets and some letters to take with saying I am fit to fly with oxygen on long haul and without on short haul flights and another letter saying 'please let Gemma through with all her drugs because she needs them' (not the exact wording!). So I am all ready to go!
My next outpatients appointment isn't until the 23rd October which feels ages away! I'll need a port flush before then though so that will keep my withdrawl symptoms at bay. No seriously, if I don't go to the hospital for many weeks I feel abit panicky, it kind of makes me feel safe been checked up on every few weeks! It might sound stupid but going to hospital and knowing everything is ok is part of my routine in life, so a long break feels weird....!
Alfie and Murphy had a practise run at the dog sitters today, the lady is a performer and was practising singing Abba songs with her friend (who used to be in Emmerdale, trust Alfie to get to hang out with people off the tv!), apparently the dogs sat and watched them which I found quite funny. I took Alfie for walk beforehand to try tire him out abit, he's getting extremely good off his lead now.
This evening I made a fish pie from scratch, I skinned the fish, made the white sauce and the mash potato. It was very nice, quite proud of myself! Getting the hang of this housewife thing hahaha!
Saturday, 27 June 2009
Wahoo!
Had outpatients today. my weight is down slightly at 55.4kg but nothing major, sats 96% and my fev1 is still 46%! Also my fvc is slightly up!
The last time I had IV's was in March so I am doing really well. I've actually booked myself to have some IV's in August if this good period continues (fingers crossed). The reason I have booked them is so I am well for my wedding and honeymoon but I need to make sure I leave a few weeks before the wedding for my arm to heal if it goes manky, I don't want a red arm for my wedding! Aug is only 6 weeks away so I don't need to go for an outpatients appointment in between. When I was arranging this I was surprised at how close the wedding is! So now I'm panicking abit! Its 11 weeks! Yikes!
I told the physio I had broken my acapella mouthpiece (abit of plastic snapped off so now its really sharp) and asked her for a replacement. She gave me a whole new acapella, apparently noone has ever asked for a replacement mouthpiece. Must just be me then that bites it! I also asked her to call respironics about my I-neb as I am sick of having to ring them for replacement disks, they are supposed to send me a supply every month but they never do! I run out and then have to use the old school porta neb and the tobi takes over half an hour to go through. She said respironics are been abit funny about patients not having promixin through the i-neb (they make promixin or something) and using tobi so they make no money. Well they shouldn't have agreed in the first place then!
The doctor filled in my form to have oxygen on the plane and I told her about my headaches. She isn't referring me to and ENT specialist as the headaches aren't all the time, they just come every so often. She said some antibiotics should reduce the pain as its infection building up and is common if you have psuedomonas especially in this type of weather. She has given me Doxycycline to take which is apparently good for the sinuses. I've never had it before so we shall see. I have finally finished Ciprofloxcin and Voriconazole and now I'm on this and guess what it says on the front 'AVOID THE SUN'! Grrr!!!!!
Pete and I are going to London tomorrow on our Henry VIII trip, can't wait! Just put some fake tan on my legs so I can wear a dress since it's going to be warm!
Here are pictures of the invites. The first one is for the whole day, second one for the evening reception and the final is the inside of an evening reception invite (I had to hide some bits, don't want everyone to know my address!)
Monday, 22 June 2009
Happy Birthday Alfie!
Alfie is two years old today! Happy Birthday Alfie! He got a little squeaky toy from us :o) Although he seems to more interested in what the builders behind us are doing!
This headache is starting to get me down, I have a feeling it might be stress although I don't feel that stressed. The trouble with me is that I think about things over and over again in my head and worry about stupid little things, I could never survive having a stressful job! I have no idea how I survived at university! The reason I think it is stress is it is constant but not really bad, just there all the time. It feels like pressure pushing on my head, its almost as if all my thoughts are wanting to burst out of my brain, I really need to learn how to chill out. Its stopping me wanting to cough which isn't good and I dread everytime I have to do my physio as it makes it worse. The pain is also behind my eyes which makes me think it might be the new contact lenses I have been given as I started wearing them last Wednesday and that's when the headaches seemed to start, I'm going for an eye test today so might mention it.
Here is a picture of Alfie and I next to a sculpture at the park, we thought this sculpture was rather rude! Or is that just us been dirty minded....?! Also see the woman with the child? About 1 minute later she gave me the dirtiest look because I told her child not to stroke my dog, not my fault Alfie doesn't like strangers poking him! She must want her child to lose a finger! Nah just kidding Alfie's not that bad!
This headache is starting to get me down, I have a feeling it might be stress although I don't feel that stressed. The trouble with me is that I think about things over and over again in my head and worry about stupid little things, I could never survive having a stressful job! I have no idea how I survived at university! The reason I think it is stress is it is constant but not really bad, just there all the time. It feels like pressure pushing on my head, its almost as if all my thoughts are wanting to burst out of my brain, I really need to learn how to chill out. Its stopping me wanting to cough which isn't good and I dread everytime I have to do my physio as it makes it worse. The pain is also behind my eyes which makes me think it might be the new contact lenses I have been given as I started wearing them last Wednesday and that's when the headaches seemed to start, I'm going for an eye test today so might mention it.
I have been rather stressed over the wedding invitations. Loads of people have been getting notes from the post office saying they have to pay £1.17 and go and collect it. I can't understand this as some people are getting them delivered fine and I have measured and weighed the invitations and they fit within the measurements they state on the royal mail website for one stamp to be required. I'm worried people won't go and collect them and people are going to be annoyed they had to go and collect it. I am seriously not impressed with Royal Mail for messing up my perfect invitations!
I watched the film The Curious Case of Benjamin Button on Saturday, it was OK, I got abit upset at the end but the first hour dragged if I'm honest. I may have only got upset because it was about 11pm and I was tired and I become emotional when I'm tired!
On Sunday Pete, my brother and I took the dogs for a walk around the Yorkshire Sculpture Park. Luckily I don't seem to have got burnt, I did wear a jacket most of the time and my big sunglasses. I finished my course of ciprofloxin on Saturday, it seems to have helped my chest abit so will see how I do at outpatients on Friday. Sunday evening Pete and I went to the cinema to see Transformers Revenge of the Fallen, it was really good! I remember I was impressed with the first one, although I couldn't really remember what happened. I think the second one is better, the main guy is really funny. I have a question though, why do they have to make the main female character behave and look like she is featuring in soft porn? Oh thats right, because young boys like Transformers ... hehe. Before anyone says it, no I am not jealous of her, I don't want to look like a porn star thank you very much lol! I enjoyed it and there is plenty of action and some bits when they kill other transformers are bit gross, yes I know they are not people dying but still, its not nice to say it's a 12A.
Here is a picture of Alfie and I next to a sculpture at the park, we thought this sculpture was rather rude! Or is that just us been dirty minded....?! Also see the woman with the child? About 1 minute later she gave me the dirtiest look because I told her child not to stroke my dog, not my fault Alfie doesn't like strangers poking him! She must want her child to lose a finger! Nah just kidding Alfie's not that bad!
Monday, 15 June 2009
I'm a Vampire
I have spent most of the weekend doing our wedding invitations, also is it worrying that I cannot for the life in me remember what I did on Friday?! The lady has sent us the invitations for the daytime but we haven't received the evening ones yet. So on Saturday night we spent all night printing off instructions to go with the invites, filling in the gift list cards and printing off the inserts for the invitations with the actual wording on. This took forever as getting the margins right etc was difficult and after lots of practice prints we finally were finished by about 9.30pm, it doesn't help when your printer has a mind of it's own! I think if I hadn't been drinking some wine alongside this task I could have become quite stressed!
Then on Sunday we snuck into Pete's work to use the guillotine to cut the paper inserts to the right size. I then spent the afternoon gluing them into the invitations, putting everything in envelopes and writing the envelopes. By the end of the day I was sick of folding, gluing and writing! There was stuff all over the floor surrounding this poor girl feeling rather flustered and warm! Pete got off lightly as he went to watch the rugby, don't worry I left him some to do when he got back but I ended up helping him anyway!
I will post a picture of my invitations but I haven't sent them yet and so don't want to spoil the surprise for people who will be receiving one and read this blog!
I also took the dogs for a walk with my mum and brother who is back from university for the summer now and my mum is back from her holiday. My mums suitcase got lost and my Twilight book was in there! Luckily they found the suitcase and returned it on Saturday, panic over!!
Talking of brothers, my other brother decided to book a club 18-30's holiday with all his mates. He came around for tea on Wednesday with my dad and told us he was going on the 7th September for a week, Pete, my dad and I just looked at him. Our wedding is on the 11th September!! Can you believe it?! Luckily they had only paid the deposit and they have managed to rearrange it over the weekend, this is typical behaviour of my brother, he is so slack sometimes!!!
Alfie has had a funny tummy again, when I was at the dog training the trainer suggested natural yogurt so we bought him some which luckily he agreed to eat and it worked a treat. Within half an hour he was in the garden barking and running around like a nutcase!
This warm weather is abit depressing, because I'm on ciprofloxcin and voriconazole I will burn really easily, infact my hands are looking horrible at the moment, they are all leathery like an old woman's, also my ears are peeling and are sore. Therefore I am like a vampire, staying out of the sun. I am not moaning about the sun, just that I can't go in it....!
Then on Sunday we snuck into Pete's work to use the guillotine to cut the paper inserts to the right size. I then spent the afternoon gluing them into the invitations, putting everything in envelopes and writing the envelopes. By the end of the day I was sick of folding, gluing and writing! There was stuff all over the floor surrounding this poor girl feeling rather flustered and warm! Pete got off lightly as he went to watch the rugby, don't worry I left him some to do when he got back but I ended up helping him anyway!
I will post a picture of my invitations but I haven't sent them yet and so don't want to spoil the surprise for people who will be receiving one and read this blog!
I also took the dogs for a walk with my mum and brother who is back from university for the summer now and my mum is back from her holiday. My mums suitcase got lost and my Twilight book was in there! Luckily they found the suitcase and returned it on Saturday, panic over!!
Talking of brothers, my other brother decided to book a club 18-30's holiday with all his mates. He came around for tea on Wednesday with my dad and told us he was going on the 7th September for a week, Pete, my dad and I just looked at him. Our wedding is on the 11th September!! Can you believe it?! Luckily they had only paid the deposit and they have managed to rearrange it over the weekend, this is typical behaviour of my brother, he is so slack sometimes!!!
Alfie has had a funny tummy again, when I was at the dog training the trainer suggested natural yogurt so we bought him some which luckily he agreed to eat and it worked a treat. Within half an hour he was in the garden barking and running around like a nutcase!
This warm weather is abit depressing, because I'm on ciprofloxcin and voriconazole I will burn really easily, infact my hands are looking horrible at the moment, they are all leathery like an old woman's, also my ears are peeling and are sore. Therefore I am like a vampire, staying out of the sun. I am not moaning about the sun, just that I can't go in it....!
Saturday, 6 June 2009
Nice Dream!!!
I would like to announce that I have had my first nice dream for months! wahoo!!! Although I am abit concerned by it.... I dreamt Thomas Cromwell from the series The Tudors was in love with me. So slightly weird but nice, I'm not going to be picky! It's a start! And now I am strangely in love with James Frain!! Shame he got beheaded at the end of series 3, woops sorry spoiler! Its history though so you knew it was coming!
Pete and I went to see Terminator Salvation last night, it was blumming fantastic!!! Best film I have seen in ages (apart from Twilight obviously...!!!)
Other news - I still have my stupid coldsores. They are all yellow and bleeding, my Nana thought they might be infected so she gave me some sudacream (I have no idea how to spell it) and it seems to helping to dry them out. I have started the ciprofloxicin as I still don't feel 100%, I've been sleeping an awful lot and since the coldsores are not budging I thought this was an indication my body is suffering.
My mum is on holiday at the moment so Murphy is living with us, oh the joys of having two chihuahuas treating you as a climbing frame! They both finished their dog training on Wednesday, Pete and I took them instead of my mum and I. They both managed to graduate (haha) and we have certificates and photographs! I think I'm going to take Alfie to the next level of training since he is so clever! Need to save up abit of cash first!
Friday, 29 May 2009
Avoided IV's!
I had Outpatients today, I was expecting to be put on IV's but I have managed to escape!
I discussed how I think I may have picked up a virus. I've been sweating buckets during the night, waking up with soaked hair, since we got back from the lakes I have been sleeping nearly all the time and I have a pain in my throat/ear. In addition to this I have developed about four cold sores on my bottom lip which is an indication I'm not feeling great.
My lung function was has stayed stable and my exercise tolerance is fine as displayed when I went to the lakes, the cough I had also seems to have calmed down. I was coughing some thick, dark green mucus up when we were at the lakes but now it is bright green and thinner but increased in volume, not sure what this means. My weight is stable at 56.3 kg, my appetite has been abit funny the last few days so good to see I have lost no weight atall.
The doctor felt my throat and he says it feels swollen, he has put me on aciclovir which is an anti viral for cold sores i.e. herpes as he thinks that is what may be making me feel ill. If I don't feel better in a few days I have to start some ciprofloxcin (and make sure I stay out of the sun!), if still no improvement then IV's will be the way to go. He doubts it will get to that though and thinks I will get rid of the virus myself. I also had my port flushed and they took some blood from it to measure my crp levels.
It's my mum's birthday today so my brother and I are taking her out for a meal later, we got her a vintage mannequin for her birthday present. She wanted one to hang her clothes on and they look good in your room if you're lucky enough to have the space!
My bridal shoes arrived today, they are beautiful! They are champagne colour, lace, peep toe with a bow at the front. I'm getting so excited now!
On the CF forum we wanted to make some videos to put on youtube that were positive about CF for parents of children with CF and younger people with CF. Here's mine I put together
I discussed how I think I may have picked up a virus. I've been sweating buckets during the night, waking up with soaked hair, since we got back from the lakes I have been sleeping nearly all the time and I have a pain in my throat/ear. In addition to this I have developed about four cold sores on my bottom lip which is an indication I'm not feeling great.
My lung function was has stayed stable and my exercise tolerance is fine as displayed when I went to the lakes, the cough I had also seems to have calmed down. I was coughing some thick, dark green mucus up when we were at the lakes but now it is bright green and thinner but increased in volume, not sure what this means. My weight is stable at 56.3 kg, my appetite has been abit funny the last few days so good to see I have lost no weight atall.
The doctor felt my throat and he says it feels swollen, he has put me on aciclovir which is an anti viral for cold sores i.e. herpes as he thinks that is what may be making me feel ill. If I don't feel better in a few days I have to start some ciprofloxcin (and make sure I stay out of the sun!), if still no improvement then IV's will be the way to go. He doubts it will get to that though and thinks I will get rid of the virus myself. I also had my port flushed and they took some blood from it to measure my crp levels.
It's my mum's birthday today so my brother and I are taking her out for a meal later, we got her a vintage mannequin for her birthday present. She wanted one to hang her clothes on and they look good in your room if you're lucky enough to have the space!
My bridal shoes arrived today, they are beautiful! They are champagne colour, lace, peep toe with a bow at the front. I'm getting so excited now!
On the CF forum we wanted to make some videos to put on youtube that were positive about CF for parents of children with CF and younger people with CF. Here's mine I put together
Thursday, 21 May 2009
Blurgh!
Well hello there! I've been feeling abit blurgh so haven't been bothered to post for a few days!
Alfie hasn't been too great either, his gut keeps making some freaky noises that are really loud, I also listened to his gut with my handy stethoscope and there is some weird bubbling and popping sounds going on. No wonder the poor fella has been mopping around, shivering and not eating. It always seems to happen on a morning and then it goes by the afternoon. I have thought of several reasons for this
A) he is hungry, but he won't eat once the sounds start to freak him out
B) he has constipation
C) he has some kind of indigestion problem
D) he has some foam trapped inside him
I shall elaborate on D.... Alfie has been staying in the kitchen on a night die to extreme whining which has been keeping us awake. To keep him in the kitchen we have been using my physio table propped on its side as a wall. Alfie decided to open one of the cushions on the table and pull all the foam out. Result, Pete goes into the kitchen in the morning and it's covered in green bits of foam and I am left with a rather flat cushion! Luckily I had a spare at my mum and dads!
Anyway I took him for a long walk yesterday as exercise can help with tummy problems (me been the expert here...) and he was sick. Not great but at least something is happening! On our walk we were nearly attacked by some protective geese parents, the hissing sent us on our way needless to say.
Alfie was very quiet at the dog training and kept not eating his treats which doesn't help when you are trying to train them! He also didn't eat his tea until just before we went to bed which is very strange for him!
This morning I gave him some weetabix, a good source of fibre! Then he went to see Murphy for a while when I went shopping. He is drinking again and seems fine, so hopefully it has done the trick! I think I shall start feeding him two small meals a day rather than one big one and might carry on with the weetabix.
So enough of Alfie, sometimes I think he should have his own blog or something!
As I said I've not been feeling great, on Tuesday I felt terrible and started crying in the evening, it didn't help that Pete was been nasty to me in my time of need! I think he gets sick of me been whiny but I can't help it!
My prescription for my amoxicillin didn't arrive until Wednesday, luckily the pharmacist agreed to lend me some until the prescription arrived. I think its helping abit, I've been on it just under a week now. My cough is less dry but more productive, is this a good thing? I'm not sure! I'm still very tired though.
Yesterday I got my haircut to try make me feel better, it didn't work... as already mentioned i went for a walk too which was nice. Today I went to Meadowhall with my friend to look for bridesmaid shoes, I HATE shopping. After been there about 10 minutes I felt hungry and tired, luckily we found some shoes in Next which was about the 3rd shop we went into. I didn't find any bridal shoes, going to have look somewhere else, there were some OK ones in bhs but they didn't have my size.
This afternoon Alfie and I went to see my Nana and then I came home and had a little afternoon sleep!
I haven't done my voluntary work for ages, I keep putting it off. Its because it involves doing a social activity and I just can't face it at the moment. I feel bad but theres nothing I can do really. I feel like I've been really busy this week but really I haven't done that much, that's what its like when you don't feel well. Everything is such hard work when in reality it's just a small chore to other people.
I received the newsletter today from Scope who I volunteer for and my piece is in it on cf, there is also a note about the training I'm going to do! Argh! Abit scared now! By the way thanks to everyone who has helped me with that! xxx
Alfie hasn't been too great either, his gut keeps making some freaky noises that are really loud, I also listened to his gut with my handy stethoscope and there is some weird bubbling and popping sounds going on. No wonder the poor fella has been mopping around, shivering and not eating. It always seems to happen on a morning and then it goes by the afternoon. I have thought of several reasons for this
A) he is hungry, but he won't eat once the sounds start to freak him out
B) he has constipation
C) he has some kind of indigestion problem
D) he has some foam trapped inside him
I shall elaborate on D.... Alfie has been staying in the kitchen on a night die to extreme whining which has been keeping us awake. To keep him in the kitchen we have been using my physio table propped on its side as a wall. Alfie decided to open one of the cushions on the table and pull all the foam out. Result, Pete goes into the kitchen in the morning and it's covered in green bits of foam and I am left with a rather flat cushion! Luckily I had a spare at my mum and dads!
Anyway I took him for a long walk yesterday as exercise can help with tummy problems (me been the expert here...) and he was sick. Not great but at least something is happening! On our walk we were nearly attacked by some protective geese parents, the hissing sent us on our way needless to say.
Alfie was very quiet at the dog training and kept not eating his treats which doesn't help when you are trying to train them! He also didn't eat his tea until just before we went to bed which is very strange for him!
This morning I gave him some weetabix, a good source of fibre! Then he went to see Murphy for a while when I went shopping. He is drinking again and seems fine, so hopefully it has done the trick! I think I shall start feeding him two small meals a day rather than one big one and might carry on with the weetabix.
So enough of Alfie, sometimes I think he should have his own blog or something!
As I said I've not been feeling great, on Tuesday I felt terrible and started crying in the evening, it didn't help that Pete was been nasty to me in my time of need! I think he gets sick of me been whiny but I can't help it!
My prescription for my amoxicillin didn't arrive until Wednesday, luckily the pharmacist agreed to lend me some until the prescription arrived. I think its helping abit, I've been on it just under a week now. My cough is less dry but more productive, is this a good thing? I'm not sure! I'm still very tired though.
Yesterday I got my haircut to try make me feel better, it didn't work... as already mentioned i went for a walk too which was nice. Today I went to Meadowhall with my friend to look for bridesmaid shoes, I HATE shopping. After been there about 10 minutes I felt hungry and tired, luckily we found some shoes in Next which was about the 3rd shop we went into. I didn't find any bridal shoes, going to have look somewhere else, there were some OK ones in bhs but they didn't have my size.
This afternoon Alfie and I went to see my Nana and then I came home and had a little afternoon sleep!
I haven't done my voluntary work for ages, I keep putting it off. Its because it involves doing a social activity and I just can't face it at the moment. I feel bad but theres nothing I can do really. I feel like I've been really busy this week but really I haven't done that much, that's what its like when you don't feel well. Everything is such hard work when in reality it's just a small chore to other people.
I received the newsletter today from Scope who I volunteer for and my piece is in it on cf, there is also a note about the training I'm going to do! Argh! Abit scared now! By the way thanks to everyone who has helped me with that! xxx
Thursday, 14 May 2009
Dodging game!
I called the hospital today to ask for some oral antibiotics as I am going to dodge IV's until at least my outpatient appointment. I'm getting a dull pain in the bottom of my chest and my cough is becoming ever more annoying. I'm getting tired so easily, like yesterday I went to the gym and I felt flattened for the rest of the day.
Today I went to order our wedding cake with my mum (Pete had little say in the cake) and then I went to the bridal shop to order my veil. This meant I had to try my wedding dress on again, oh what shame....!! It's still as beautiful as ever, I am going to look amazing on our wedding day if I might say so myself! Then my mum and I went for some lunch then onto JTF to look for vases and ribbons of which they had none suitable. I ended up buying some cleaning stuff for the bathroom, how exciting!
So then I came home and fell asleep, I felt so tired I couldn't focus properly. I've just woken up as the doctor called me back and the pain in my chest is even worse but I'm not in agony or anything, its kind of a dull stabbing, I don't think I'll be going swimming as planned, just too tired. The doctor is sending me a prescription for amoxicillin, he was going to put me on ciprofloxcin but I am going to the lake district next weekend and cipro makes you burn in the sun and so does voriconazole so together i think I will be a walking lobster. He said amoxicillin doesn't actually fight psuedomonas but it will fight everything else and i'm on my nebbed antibiotic so it should keep me going for abit (it's like i'm a car or something!). If I still feel rough he will give me a prescription for cipro if necessary. However I remember the amoxicillin worked quite well at Christmas. Apparently my last sputum sample showed up 'psuedomonas, psuedomonas, psuedomonas, psuedomonas', alright how many times does it need to say it!??!! I get the point! Damn psuedomonas, one day I shall have my revenge!
On another note, Alfie is doing very well at the dog training. He even went up to another dog (the trainers very well behaved dog) and got really close and sniffed it without growling which is kind of a big thing for Alf. When we were practising 'leave', the trainer said Alfie was making it look easy. Well you know I do have a super dog. I shall have him jumping through hoops of fire next!!
Today I went to order our wedding cake with my mum (Pete had little say in the cake) and then I went to the bridal shop to order my veil. This meant I had to try my wedding dress on again, oh what shame....!! It's still as beautiful as ever, I am going to look amazing on our wedding day if I might say so myself! Then my mum and I went for some lunch then onto JTF to look for vases and ribbons of which they had none suitable. I ended up buying some cleaning stuff for the bathroom, how exciting!
So then I came home and fell asleep, I felt so tired I couldn't focus properly. I've just woken up as the doctor called me back and the pain in my chest is even worse but I'm not in agony or anything, its kind of a dull stabbing, I don't think I'll be going swimming as planned, just too tired. The doctor is sending me a prescription for amoxicillin, he was going to put me on ciprofloxcin but I am going to the lake district next weekend and cipro makes you burn in the sun and so does voriconazole so together i think I will be a walking lobster. He said amoxicillin doesn't actually fight psuedomonas but it will fight everything else and i'm on my nebbed antibiotic so it should keep me going for abit (it's like i'm a car or something!). If I still feel rough he will give me a prescription for cipro if necessary. However I remember the amoxicillin worked quite well at Christmas. Apparently my last sputum sample showed up 'psuedomonas, psuedomonas, psuedomonas, psuedomonas', alright how many times does it need to say it!??!! I get the point! Damn psuedomonas, one day I shall have my revenge!
On another note, Alfie is doing very well at the dog training. He even went up to another dog (the trainers very well behaved dog) and got really close and sniffed it without growling which is kind of a big thing for Alf. When we were practising 'leave', the trainer said Alfie was making it look easy. Well you know I do have a super dog. I shall have him jumping through hoops of fire next!!
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