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 Azli. Show all posts
Showing posts with label Azli. Show all posts
Wednesday, 21 August 2013
Wednesday, 17 July 2013
Everything is OK in this neck of the woods
Oh my gosh, how is it July and I haven't done a blog post since April...! Apologies!
I must say that insulin and Azli (Cayston) seem to agree with me, I think I am the healthiest I have been in a long time! My lung function at clinic last week was 44% and my weight 56.5kg (yes i'm getting fat!) and I'm on my month off Azli!
I've dropped the insulin at lunchtime on advice of the Doctor as I was having quite a lot of hypos (low blood sugar) even with just one unit of insulin as lunchtime. I monitored my blood sugars last week and was getting some high readings after some lunchtime meals but not others so the CF team are going to decide whether they want me to start having insulin at lunch again or not.
Our second round of IVF surrogacy did not work which was heartbreaking as we really thought it would this time as things went so well leading up to it. The good news is we have six frozen embryos so are due to do a frozen embryo transfer in the upcoming weeks.
I have ordered my new mobility car as believe it or not it's nearly three years since I got my Astra, so also three years since I gave back the love of my life, the Yellow Peril Mini! The good news is I will soon be the proud driver of another Mini! That's right folks I'm getting another one, but a Mini Cooper Countryman this time. She is going to be beautiful! Dark red with a black roof and black tyres, I can't wait to go cruising in her. We are even discussing the possibility of a road trip to France next year in her! I can't decide on her name, either Rollin Roz or Ruby Roz, I guess it's a case of deciding when I see her in the flesh!
In other good news... I was awarded ESA! The relief is amazing, to know I don't have to worry about been forced to work or go through a medical which I've heard are horrible. I had some problems receiving the new payments which I had to get Mummy to sort out as the people on the phone are horrible, but that's nothing compared to what could have happened.
Alfie has a new friend called Jasper, he is about 16 weeks old and half Jack Russell and half Chihuahua. he is my brothers puppy and we had to get the dog trainer out to show us how to introduce Jasper to Alfie as Alfie does not like dogs apart from his buddy Murphy. They are getting on OKish now but it's taken a lot of time and energy. Jasper is a mental dog, he never stops moving, he never seems to sleep, he digs, chews and eats everything and he likes to wind Alfie up by runnning around him and sometimes even biting his tail. Alfie being a more mature dog these days (he is now 6!) is not impressed as he just wants to lie back and relax whereas Jasper wants to play. Therefore these differences cause Alfie to tell Jasper off quite often and also me tell Jasper off quite often as he always seems to be running off with something of mine like a shoe or a charger, if you leave anything on the floor he will have it and he is fast! The joys of puppies! Here is a photo of the troublesome trio, from the left: Murphy, Alfie, Jasper - good boys sitting for treats!
Here are a few pictures from the past few weeks
First night out in months as actually felt well enough!
Trip to Bridlington (weather was horrible!)
Trip to the Lakes after failed surrogacy attempt to cheer ourselves up! (weather was beautiful!)
One problem with Azli... you have to do it three times a day so end up doing it in very random locations!
We were followed by a herd of young cows, it was quite scary! Like the Cravendale advert!
I must admit, things are hard for me at the moment with our second surrogacy attempt failing. I might be doing well CF wise but psychologically I'm struggling, however I'll save that for my surrogacy blog! I do know something though, that after everything we have gone through this year I know I love Pete with all my heart and know we can get through anything together! I am so grateful everyday I have such an amazing person in my life! Hope everyone is well, I will try update again before three months has passed!
I must say that insulin and Azli (Cayston) seem to agree with me, I think I am the healthiest I have been in a long time! My lung function at clinic last week was 44% and my weight 56.5kg (yes i'm getting fat!) and I'm on my month off Azli!
I've dropped the insulin at lunchtime on advice of the Doctor as I was having quite a lot of hypos (low blood sugar) even with just one unit of insulin as lunchtime. I monitored my blood sugars last week and was getting some high readings after some lunchtime meals but not others so the CF team are going to decide whether they want me to start having insulin at lunch again or not.
Our second round of IVF surrogacy did not work which was heartbreaking as we really thought it would this time as things went so well leading up to it. The good news is we have six frozen embryos so are due to do a frozen embryo transfer in the upcoming weeks.
I have ordered my new mobility car as believe it or not it's nearly three years since I got my Astra, so also three years since I gave back the love of my life, the Yellow Peril Mini! The good news is I will soon be the proud driver of another Mini! That's right folks I'm getting another one, but a Mini Cooper Countryman this time. She is going to be beautiful! Dark red with a black roof and black tyres, I can't wait to go cruising in her. We are even discussing the possibility of a road trip to France next year in her! I can't decide on her name, either Rollin Roz or Ruby Roz, I guess it's a case of deciding when I see her in the flesh!
In other good news... I was awarded ESA! The relief is amazing, to know I don't have to worry about been forced to work or go through a medical which I've heard are horrible. I had some problems receiving the new payments which I had to get Mummy to sort out as the people on the phone are horrible, but that's nothing compared to what could have happened.
Alfie has a new friend called Jasper, he is about 16 weeks old and half Jack Russell and half Chihuahua. he is my brothers puppy and we had to get the dog trainer out to show us how to introduce Jasper to Alfie as Alfie does not like dogs apart from his buddy Murphy. They are getting on OKish now but it's taken a lot of time and energy. Jasper is a mental dog, he never stops moving, he never seems to sleep, he digs, chews and eats everything and he likes to wind Alfie up by runnning around him and sometimes even biting his tail. Alfie being a more mature dog these days (he is now 6!) is not impressed as he just wants to lie back and relax whereas Jasper wants to play. Therefore these differences cause Alfie to tell Jasper off quite often and also me tell Jasper off quite often as he always seems to be running off with something of mine like a shoe or a charger, if you leave anything on the floor he will have it and he is fast! The joys of puppies! Here is a photo of the troublesome trio, from the left: Murphy, Alfie, Jasper - good boys sitting for treats!
Here are a few pictures from the past few weeks
First night out in months as actually felt well enough!
Trip to Bridlington (weather was horrible!)
Trip to the Lakes after failed surrogacy attempt to cheer ourselves up! (weather was beautiful!)
I must admit, things are hard for me at the moment with our second surrogacy attempt failing. I might be doing well CF wise but psychologically I'm struggling, however I'll save that for my surrogacy blog! I do know something though, that after everything we have gone through this year I know I love Pete with all my heart and know we can get through anything together! I am so grateful everyday I have such an amazing person in my life! Hope everyone is well, I will try update again before three months has passed!
Friday, 12 April 2013
Glowing Report!
I'm really happy to say that yesterday my lung function was 49%, my weight 55.8kg and my oxygen saturation (sats) levels were 99%! I can't remember the last time I saw figures like that, for months and months now my sats have sat at 93-95% and that was just normal for me, sometimes getting even lower when I felt unwell. So to see them at a normal number is great and for my lung function to be almost hitting 50% is amazing. My weight is back to pre pneumonia 2011 weight, it just shows how long it can take to put that weight back on once you lose it. I have started a 10 day course of IVs which sounds stupid given the numbers, but I have felt a bit iffy the past week or so with my energy levels and I started to develop a tickly cough and chest pains so decided I wanted to have some before we start fertility treatment again, rather than possibly end up needing them half way through.
So what I have been doing differently? Well I believe the main contributor is my new nebulised antibiotic Azli, also known as Cayston, also known as nebulised Aztreonam. I had high hopes for this nebuliser as lots of people have said how amazing it is and I believe them now! At first it made me really wheezy however that went after about 10 days, it does re appear every so often though. Then I started to be able to exercise more than usual and before I knew it I was going to the gym 3 times a week and doing 40 minute sessions involving about 25 minutes cardio and the rest doing weights. I'm feeling I can really push myself at the gym at the moment and I've noticed my heart rate has decreased too, my pulse at rest is in the 80s at the moment, I pretty sure it used to be about 100. I am still very breathless when exercising however I do have less mucus which is what the physio believes has helped bring my sats up and why I think I a finding the gym less hard work.
Then I have also started having insulin with lunch and tea and although I still need to learn how many units I need and not getting it right all the time, I'm getting there slowly. I'm having 2 units with lunch and 3-5 units with tea. I'm having lots of hypos (low sugars) which is not nice, basically every time I exercise and if I have breakfast early or tea late. It's easy to say, well eat your tea earlier or have breakfast later, but that isn't always possible!
So health wise I am doing well at the moment which makes me realise how important it is to be compliant with treatment and to be involved in your CF care. I know for a fact if I worked this would not be possible, I haven't worked for about 5 years now and I'm finally starting to feel I understand my CF and know what my body needs and I'm getting the balance right of rest and treatment. Some days I am so bored and fed up, I feel so useless and pathetic that all my day consists of is CF related activities and attempting to do household chores which mostly Pete ends up finishing off anyway!
I look back to when I first joined the CF community, my health was worsening and I was facing giving up work. I made lots of friends on-line who I felt understood me better than people around me, it was also when I started to take an interest in my health and ways to improve/stabilise it, can you believe I didn't even used to wash my nebuliser equipment?!
Lots of my friends have now either had lung transplants, need lung transplants, have passed away or their health has deteriorated. People that had the same lung function and health as me are now needing lung transplants which scares me but also makes me feel proud that I have managed to avoid this so far. CF is unforgiving, I work really hard to stay stable. I'm not admired or called brave, nobody calls me an inspiration, because in order to be those things you have to push yourself to work a full time job or go above and beyond what your body is capable of and I'm not willing to do that in order to end up dead or dying like lots of people with CF do. Lots of people probably think I'm lazy or one of those scrounges you read about in paper, on benefits, didn't you know the whole country hates people like me at the moment? Sometimes I feel guilty if I go out for a meal out as the papers make me feel like I shouldn't be able to afford my electricity and gas, never mind a meal out, because I am in receipt of benefits. However then I remember my husband does work, so we are not complete scrounges...!
Having CF at my level of CF is a job in itself, I have to do a hell of a lot to stay alive, some people with CF don't, they manage to get on OK with minimal extra effort. I'm not implying that people with CF who did push themselves are in the wrong, or that everyone who needs a lung transplant brought it on themselves. It's such a fine balance between having a life and looking after yourself, nobody gets it right and even if they do sometimes there is nothing anyone can do to prevent that downward spiral, I'm sure it will happen to me eventually. I just feel lucky that so far I'm doing OKish, I have a supportive husband to help me and I'm in a situation for the time being where I can concentrate on my health and not have to run myself in to the ground with work. This might all change through if I don't qualify for ESA though and that is why I am really scared of what may happen in the next few weeks. I really wish the government and society as a whole understood long term conditions more accurately.
So what I have been doing differently? Well I believe the main contributor is my new nebulised antibiotic Azli, also known as Cayston, also known as nebulised Aztreonam. I had high hopes for this nebuliser as lots of people have said how amazing it is and I believe them now! At first it made me really wheezy however that went after about 10 days, it does re appear every so often though. Then I started to be able to exercise more than usual and before I knew it I was going to the gym 3 times a week and doing 40 minute sessions involving about 25 minutes cardio and the rest doing weights. I'm feeling I can really push myself at the gym at the moment and I've noticed my heart rate has decreased too, my pulse at rest is in the 80s at the moment, I pretty sure it used to be about 100. I am still very breathless when exercising however I do have less mucus which is what the physio believes has helped bring my sats up and why I think I a finding the gym less hard work.
Then I have also started having insulin with lunch and tea and although I still need to learn how many units I need and not getting it right all the time, I'm getting there slowly. I'm having 2 units with lunch and 3-5 units with tea. I'm having lots of hypos (low sugars) which is not nice, basically every time I exercise and if I have breakfast early or tea late. It's easy to say, well eat your tea earlier or have breakfast later, but that isn't always possible!
So health wise I am doing well at the moment which makes me realise how important it is to be compliant with treatment and to be involved in your CF care. I know for a fact if I worked this would not be possible, I haven't worked for about 5 years now and I'm finally starting to feel I understand my CF and know what my body needs and I'm getting the balance right of rest and treatment. Some days I am so bored and fed up, I feel so useless and pathetic that all my day consists of is CF related activities and attempting to do household chores which mostly Pete ends up finishing off anyway!
I look back to when I first joined the CF community, my health was worsening and I was facing giving up work. I made lots of friends on-line who I felt understood me better than people around me, it was also when I started to take an interest in my health and ways to improve/stabilise it, can you believe I didn't even used to wash my nebuliser equipment?!
Lots of my friends have now either had lung transplants, need lung transplants, have passed away or their health has deteriorated. People that had the same lung function and health as me are now needing lung transplants which scares me but also makes me feel proud that I have managed to avoid this so far. CF is unforgiving, I work really hard to stay stable. I'm not admired or called brave, nobody calls me an inspiration, because in order to be those things you have to push yourself to work a full time job or go above and beyond what your body is capable of and I'm not willing to do that in order to end up dead or dying like lots of people with CF do. Lots of people probably think I'm lazy or one of those scrounges you read about in paper, on benefits, didn't you know the whole country hates people like me at the moment? Sometimes I feel guilty if I go out for a meal out as the papers make me feel like I shouldn't be able to afford my electricity and gas, never mind a meal out, because I am in receipt of benefits. However then I remember my husband does work, so we are not complete scrounges...!
Having CF at my level of CF is a job in itself, I have to do a hell of a lot to stay alive, some people with CF don't, they manage to get on OK with minimal extra effort. I'm not implying that people with CF who did push themselves are in the wrong, or that everyone who needs a lung transplant brought it on themselves. It's such a fine balance between having a life and looking after yourself, nobody gets it right and even if they do sometimes there is nothing anyone can do to prevent that downward spiral, I'm sure it will happen to me eventually. I just feel lucky that so far I'm doing OKish, I have a supportive husband to help me and I'm in a situation for the time being where I can concentrate on my health and not have to run myself in to the ground with work. This might all change through if I don't qualify for ESA though and that is why I am really scared of what may happen in the next few weeks. I really wish the government and society as a whole understood long term conditions more accurately.
Friday, 5 April 2013
The Dreaded Diabetes
I officially have CF related diabetes, lucky me! I was admitted in to hospital last Wednesday to start insulin treatment and stayed in just the one night which was long enough, I swear its enough to make you go crazy. I don't want to be nasty about my CF team as they are brilliant but staying in hospital is hard work as your routine is totally ruined and you are constantly waiting for people to come see you and do not have any idea when they may come in which makes it difficult to do your treatment or get a shower or get breakfast etc. I woke up at about 7.30am and nobody came to see me until at least 10am, I had no idea if I should get my own breakfast or if I was going to be offered a fry up (they do provide fry ups), if I needed my blood sugars checking, if a physio was going to come and see me since I wasn't in because of my chest etc, its just difficult for someone like me who likes routine and to plan the day ahead. Then when someone came to see me she asked me if I wanted breakfast, (erm no its 10.15am I went and got myself some ages ago...) I got in trouble for not having my blood sugar tested beforehand which nobody had told me I needed to do!
So I'm home now and doing OK with the insulin. The needle is 5mm so small compared to the fertility injections I've done in the past and I'm alternating between injecting in my thigh and my stomach. At the moment I'm having insulin with my lunch and tea. I started at two units for both which is a small dose but I've now upped it to three or four units with my tea. I'm having to take my blood sugars before every meal and an hour and a half afterwards plus any time I think I'm having a hypo (where your blood sugar goes too low) which is quite often. For example on Tuesday I had three hypos! I have to learn to recognise hypos as you are not allowed to drive when having one and they can be dangerous if not treated. It's quite easily really since I can't see, concentrate or think properly when having one and I feel shaky and dizzy, so I wouldn't want to drive when having one anyway! I've had to contact the DVLA to let them know I have diabetes and have filled in a form for them regarding my treatment etc.
I remember not understanding why people with diabetes have hypos as isn't diabetes when your blood sugar goes too high (which is called a hyper)?! Well diabetics get both, the aim is to try have blood sugars between 4-7. Hypos can be caused by the insulin injected and then also my body creates insulin at stupid times when it shouldn't, like 2 hours after I've eaten. Also exercise (which can be just walking or rushing around) can cause hypos and not eating for long periods of time. I seem to always get them when I have breakfast really early, for example I had breakfast at 6am yesterday and by 8.45am I was having a hypo, it's totally stupid and so annoying especially when I'd had porridge which is supposed to release carbs slowly!
I'm not enjoying have to do blood sugars and insulin when eating out, I seem to have so much stuff to pack when ever I go anywhere. My bag is just full of tablets and snacks (to treat hypos) and needles etc. Then if I have a dress on I have to go to the toilet to do the insulin as I don't really want to be pulling my dress up in front of everyone!
I'm also doing Azli (Cayston) nebulisers in replacement of Tobi, which is three times a day and I've started doing my hypertonic saline three times a day when I can, as my chest is always really full of mucus by the afternoon. So I have to plan for that as obviously they have to be spaced apart and I'm starting to get really frustrated with how much I have to plan and prepare to do anything at all! My whole day seems to be CF related and I'm really feeling fed up.
So in a day I am doing nine nebulisers, two lots of physio, insulin and at least six blood sugar readings, all my daily tablets plus tablets whenever I eat, having to treat regular hypos and trying to go to the gym at least three times a week. Thankfully my weight is great at the moment (55.5kg) so I'm off supplements for now!
I am also having to apply for ESA (employment and support allowance) which is the replacement for Incapacity benefit which is the benefit you received if you are unable to work due to a medical condition/disability. So instead of just moving me over they are making me apply for ESA and I am terrified I'm going to lose this benefit as I've heard the assessments are unfair and they just assume you can do something on a regular basis if you don't mention it or do it once. Examples of some are the questions are 'can you lift your arms above your head', 'can you pick up a penny', 'can you cut up your food', 'can you learn new tasks' there doesn't seem to be anything about having low levels of energy or having a heavy treatment regime to fit in your day however there is a section on walking which seems more appropriate for my condition. Anyway I've done my best to tailor the answers to the questions to cover my illness and will have to hope its enough.
I asked the doctor I saw two weeks ago to write me a letter of support and she referred it to the social worker who I never see so not sure why she did that, so she wrote me a letter which if I'm honest was pretty poor, I think it was just a standard letter, after all she doesn't know me. She put I did my treatment 'most days' and I go to the hospital to be reviewed every 6-8 weeks which is totally untrue, at the moment it's once a week! So I have asked a different doctor who knows me better to write me a letter which I haven't seen yet but I'm hoping it's more helpful. I need to post the form today as they only give you three weeks to get it all filled in and get your support letter and it needs to be there on Monday, so Pete is having to drive to the hospital to pick up the doctors letter. So I've been rather stressed by it all!
So I'm home now and doing OK with the insulin. The needle is 5mm so small compared to the fertility injections I've done in the past and I'm alternating between injecting in my thigh and my stomach. At the moment I'm having insulin with my lunch and tea. I started at two units for both which is a small dose but I've now upped it to three or four units with my tea. I'm having to take my blood sugars before every meal and an hour and a half afterwards plus any time I think I'm having a hypo (where your blood sugar goes too low) which is quite often. For example on Tuesday I had three hypos! I have to learn to recognise hypos as you are not allowed to drive when having one and they can be dangerous if not treated. It's quite easily really since I can't see, concentrate or think properly when having one and I feel shaky and dizzy, so I wouldn't want to drive when having one anyway! I've had to contact the DVLA to let them know I have diabetes and have filled in a form for them regarding my treatment etc.
I remember not understanding why people with diabetes have hypos as isn't diabetes when your blood sugar goes too high (which is called a hyper)?! Well diabetics get both, the aim is to try have blood sugars between 4-7. Hypos can be caused by the insulin injected and then also my body creates insulin at stupid times when it shouldn't, like 2 hours after I've eaten. Also exercise (which can be just walking or rushing around) can cause hypos and not eating for long periods of time. I seem to always get them when I have breakfast really early, for example I had breakfast at 6am yesterday and by 8.45am I was having a hypo, it's totally stupid and so annoying especially when I'd had porridge which is supposed to release carbs slowly!
I'm not enjoying have to do blood sugars and insulin when eating out, I seem to have so much stuff to pack when ever I go anywhere. My bag is just full of tablets and snacks (to treat hypos) and needles etc. Then if I have a dress on I have to go to the toilet to do the insulin as I don't really want to be pulling my dress up in front of everyone!
I'm also doing Azli (Cayston) nebulisers in replacement of Tobi, which is three times a day and I've started doing my hypertonic saline three times a day when I can, as my chest is always really full of mucus by the afternoon. So I have to plan for that as obviously they have to be spaced apart and I'm starting to get really frustrated with how much I have to plan and prepare to do anything at all! My whole day seems to be CF related and I'm really feeling fed up.
So in a day I am doing nine nebulisers, two lots of physio, insulin and at least six blood sugar readings, all my daily tablets plus tablets whenever I eat, having to treat regular hypos and trying to go to the gym at least three times a week. Thankfully my weight is great at the moment (55.5kg) so I'm off supplements for now!
I am also having to apply for ESA (employment and support allowance) which is the replacement for Incapacity benefit which is the benefit you received if you are unable to work due to a medical condition/disability. So instead of just moving me over they are making me apply for ESA and I am terrified I'm going to lose this benefit as I've heard the assessments are unfair and they just assume you can do something on a regular basis if you don't mention it or do it once. Examples of some are the questions are 'can you lift your arms above your head', 'can you pick up a penny', 'can you cut up your food', 'can you learn new tasks' there doesn't seem to be anything about having low levels of energy or having a heavy treatment regime to fit in your day however there is a section on walking which seems more appropriate for my condition. Anyway I've done my best to tailor the answers to the questions to cover my illness and will have to hope its enough.
I asked the doctor I saw two weeks ago to write me a letter of support and she referred it to the social worker who I never see so not sure why she did that, so she wrote me a letter which if I'm honest was pretty poor, I think it was just a standard letter, after all she doesn't know me. She put I did my treatment 'most days' and I go to the hospital to be reviewed every 6-8 weeks which is totally untrue, at the moment it's once a week! So I have asked a different doctor who knows me better to write me a letter which I haven't seen yet but I'm hoping it's more helpful. I need to post the form today as they only give you three weeks to get it all filled in and get your support letter and it needs to be there on Monday, so Pete is having to drive to the hospital to pick up the doctors letter. So I've been rather stressed by it all!
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).
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