I had some great news at the hospital today; I've put on weight! I went from 45.6kg to 47.2kg in 6 weeks. I'm so happy it's unreal. I've been eating 5-6 meals a day and taking the supplement Calogen. At first it was hard to force down 6 meals a day, but now my stomach has stretched and I have a routine, I actually look forward to them... a bit ;) In a few more months I will repeat the measurements and photos I took of myself to see if I have gained any inches!
I have also been going to the gym for a month now. My friend Darmen is training me up; we do "arm day" and "leg day". It's all very blokey, but it's fun and I feel so good after. Of course, I'm only lifting like the baby-est weights and I still get out of breath and cough a lot, but I feel like it is doing my body good.
This showed in my lung function today too, my FEV1 had only dropped by 2% (now 59%)! I couldn't believe it; this is the second outpatients appointment in a row now where I haven't come home on IVs. I'm so so soooo grateful that Dr Bilton, the head doctor, decided to put me of those Tiger IVs, it was the best thing that has happened to me in terms of my health and given me my life back. I can actually go out with friends now, climb a flight of stairs unaided and walk most of the way round a supermarket. Lets just hope that the Serratia bug doesn't come back any time soon!
So now I can look forward to Easter, seeing friends and family back from uni. Quite a few birthdays coming up too, glad I will be able to make them this year! :D <3
Monday, 31 March 2014
Tuesday, 25 February 2014
Exercise
Exercise is important for everyone, as we all know. For people with CF it is beneficial in a few ways.
1. Weight gain- muscle weighs more than fat and it is harder to loose muscle than fat. By having a stable weight/not be under weight you have a better chance at fighting off infections as your body is stronger. If you do get ill and lose your appetite, your body won't loose as much weight if it is stored as muscle.
2. Circulation- People with CF often have cold hands and feet and have clubbed fingers. All this is due to poor circulation. By exercising you are getting your heart to pump more blood round your body, making your circulation better.
3. Physio- Doing exercise will make us cough, clearing our lungs :)
4. Arthritis- I have found that, personally, doing exercise helps my arthritis in my knees and ankles. Of course if you wake up in the morning in pain, you don't feel like getting out of bed let alone doing exercise! But once you've got started, I find that it eases the pain (maybe because somewhere else in my body is hurting haha).
There are probably other benefits for CFers from exercise, but these 4 are what I'm hoping for for me.
I used to be very active and do a lot of exercise. I did gymnastics, cheerleading and horseriding but stopped all of these in during my teens. At the same time my health declined... coincidence? I think not lol.
So now I'm looking into what exercise I can do. I want something that I am going to enjoy and not see as a chore. I went to my first pole dancing class last week; 2 of my friends already go so it was nice to know someone there. It was good because you didn't realise you were even exercising, it was really fun. The next few days though I was aching! Hadn't realised I'd even used my muscles so much. I found it super painful to do any physio as coughing uses stomach muscles- all of which were painful. I am also going into a gym on Saturday to find out membership prices and stuff. I will probably do one or the other as both will likely cost too much. But I'm excited to start exercising again!
Food wise, I have stocked up on double cream, nutella, cream eggs and anything else with high calories. I am waiting for my supplement Calogen to be put on my prescription.
I have taken measurements of my arms, legs, stomach etc and taken photos of what I look like now. In like 6 - 12 months I will repeat this and see if my hard work has paid off :)
1. Weight gain- muscle weighs more than fat and it is harder to loose muscle than fat. By having a stable weight/not be under weight you have a better chance at fighting off infections as your body is stronger. If you do get ill and lose your appetite, your body won't loose as much weight if it is stored as muscle.
2. Circulation- People with CF often have cold hands and feet and have clubbed fingers. All this is due to poor circulation. By exercising you are getting your heart to pump more blood round your body, making your circulation better.
3. Physio- Doing exercise will make us cough, clearing our lungs :)
4. Arthritis- I have found that, personally, doing exercise helps my arthritis in my knees and ankles. Of course if you wake up in the morning in pain, you don't feel like getting out of bed let alone doing exercise! But once you've got started, I find that it eases the pain (maybe because somewhere else in my body is hurting haha).
There are probably other benefits for CFers from exercise, but these 4 are what I'm hoping for for me.
I used to be very active and do a lot of exercise. I did gymnastics, cheerleading and horseriding but stopped all of these in during my teens. At the same time my health declined... coincidence? I think not lol.
So now I'm looking into what exercise I can do. I want something that I am going to enjoy and not see as a chore. I went to my first pole dancing class last week; 2 of my friends already go so it was nice to know someone there. It was good because you didn't realise you were even exercising, it was really fun. The next few days though I was aching! Hadn't realised I'd even used my muscles so much. I found it super painful to do any physio as coughing uses stomach muscles- all of which were painful. I am also going into a gym on Saturday to find out membership prices and stuff. I will probably do one or the other as both will likely cost too much. But I'm excited to start exercising again!
Food wise, I have stocked up on double cream, nutella, cream eggs and anything else with high calories. I am waiting for my supplement Calogen to be put on my prescription.
I have taken measurements of my arms, legs, stomach etc and taken photos of what I look like now. In like 6 - 12 months I will repeat this and see if my hard work has paid off :)
Monday, 17 February 2014
Unexpected good news!
Since my rant the other week, I've been way more positive. I feel like I have accepted what is happening with my body now and I'm focused on trying to maintain what I already have.
Today I went to hospital for a check up and had some unexpected good news (no I'm not pregnant lol). For the first time in years my lung function has gone up after being discharged from hospital. Today was FEV1 62% and FVC 92%! I know the FEV1 has only gone up up by 3% but every little helps plus I am in the 60's, which is way better than being in the 50's!! My oxygen levels were 97% too, which is high for me :D
Also I was so surprised to hear that the new bug that I had, Serratia has gone! When I first got told I had it, back in 2012, the docs thought I would be stuck with it for life like with the pseudomonas. Thanks to those tiger IVs (never learnt the actual name lol) it has been defeated! Of course there is a big chance it will come back, but for now at least it has gone and it is reassuring to know that it CAN be eradicated from my lungs.
Now the PEG... I felt soooooo awful telling the doctor this seeing as I had been nagging on at them for years to let me have one... but ever since the chat with the surgeon I have been having second thoughts. Having the PEG is quite a big decision as it is there for life and I will permanently have a tube coming out of me. I know that it will probably be a necessity eventually, but I knew that if I didn't give all the supplements just one more go I'd regret it forever! So that's what I'm going to do, along with actually doing some proper exercise, I'm hoping I will put on weight and bulk up a bit lol.
xxx
Today I went to hospital for a check up and had some unexpected good news (no I'm not pregnant lol). For the first time in years my lung function has gone up after being discharged from hospital. Today was FEV1 62% and FVC 92%! I know the FEV1 has only gone up up by 3% but every little helps plus I am in the 60's, which is way better than being in the 50's!! My oxygen levels were 97% too, which is high for me :D
Also I was so surprised to hear that the new bug that I had, Serratia has gone! When I first got told I had it, back in 2012, the docs thought I would be stuck with it for life like with the pseudomonas. Thanks to those tiger IVs (never learnt the actual name lol) it has been defeated! Of course there is a big chance it will come back, but for now at least it has gone and it is reassuring to know that it CAN be eradicated from my lungs.
Now the PEG... I felt soooooo awful telling the doctor this seeing as I had been nagging on at them for years to let me have one... but ever since the chat with the surgeon I have been having second thoughts. Having the PEG is quite a big decision as it is there for life and I will permanently have a tube coming out of me. I know that it will probably be a necessity eventually, but I knew that if I didn't give all the supplements just one more go I'd regret it forever! So that's what I'm going to do, along with actually doing some proper exercise, I'm hoping I will put on weight and bulk up a bit lol.
xxx
Thursday, 6 February 2014
There's got to be more to life than this...
This is probably going to be a negative post, but I don't even care, I need to vent! It's been 2 and half weeks and I have already plummeted back down to how I was pre-admission. I know I will try to go for a few more weeks without IVs, but it's going to be torturous weeks of pain, exhaustion and frustration. Then 2-4 weeks of IVs to get myself back up to the 50's percentage of lung function. So that's basically around 6 weeks of the pain etc for just 2 weeks of "healthy" living. It's just not fair! And during those 2 weeks, it's not as if it's like a holiday from CF, you still have to do the endless routines of physio, nebs, force-feeding, exercise, tablets etc. I just want a break.
When you're feeling this low, looking to the future seems gloomy too. Unless a cure, or miracle medicine is found, what does the future hold? Most likely, more frequent admissions, decline of lung function, less independence, transplant list, early death. As negative as it sounds, that's the realistic conclusion.
So obviously, I and anyone else I know with CF or any other kind of illness, try to live the life we've been given to the full. That in itself can be difficult. I want to do so much, but my body just doesn't agree with me. Alex and I would love to live independently again, but we have so much against us now it just doesn't seem to be happening for us. Landlords won't accept housing benefit because they think you are unreliable or can't be bothered to work or are a benefit fraud; they won't accept "caring for wife" as a good enough "excuse" as to why Alex isn't able to work a full time job- even though it would be more expensive for us if Alex were to work and I hired a private carer. Plus we have a dog, which we know if our own "fault", but when having a family is pretty much out of the equation, having a pet or two REALLY makes a difference and sort of soothes a woman's maternal ache.
My family, friends, husband and pets are what get me through these low moments. I would be nowhere without them all and I am so thankful to know everyone I know. I wish I still had the energy to be the person I was back when I was 15/16! I feel like I'm not "me" anymore. But somehow my friends and family still stick by me and keep me company even if all I want to do is sleep. They all have so much patience and time for me, they probably don't know how much it means to me. I love you all so much and I'm so grateful to have you in my life xxxxxxxxxxxxxx
When you're feeling this low, looking to the future seems gloomy too. Unless a cure, or miracle medicine is found, what does the future hold? Most likely, more frequent admissions, decline of lung function, less independence, transplant list, early death. As negative as it sounds, that's the realistic conclusion.
So obviously, I and anyone else I know with CF or any other kind of illness, try to live the life we've been given to the full. That in itself can be difficult. I want to do so much, but my body just doesn't agree with me. Alex and I would love to live independently again, but we have so much against us now it just doesn't seem to be happening for us. Landlords won't accept housing benefit because they think you are unreliable or can't be bothered to work or are a benefit fraud; they won't accept "caring for wife" as a good enough "excuse" as to why Alex isn't able to work a full time job- even though it would be more expensive for us if Alex were to work and I hired a private carer. Plus we have a dog, which we know if our own "fault", but when having a family is pretty much out of the equation, having a pet or two REALLY makes a difference and sort of soothes a woman's maternal ache.
My family, friends, husband and pets are what get me through these low moments. I would be nowhere without them all and I am so thankful to know everyone I know. I wish I still had the energy to be the person I was back when I was 15/16! I feel like I'm not "me" anymore. But somehow my friends and family still stick by me and keep me company even if all I want to do is sleep. They all have so much patience and time for me, they probably don't know how much it means to me. I love you all so much and I'm so grateful to have you in my life xxxxxxxxxxxxxx
Thursday, 30 January 2014
Post hospital and PEG appointment
I came out of hospital just over a week ago. Seems like ages ago now! Been so busy :) When I left, my lung function had improved but still isn't back to where it was this time last year (70%). When I went into hosp it was around 44% and when I came out I managed to get it up to 59%. It's scary seeing it decline year after year and I can feel the effect it's having on my body. I get so exhausted so easily now. It's also worrying to know that if my lung function drops another 10% and stays that low I won't be able to have children naturally at all. Of course there are always other options, which we may have to turn to anyway, but I want to try and keep every percent of my lungs!
Good news, I finally had my meeting with the surgeon regarding the PEG (the tube to help me gain weight by feeding me extra calories at night). Of course the appointment wasn't without it's glitches as always, but I was so glad to actually get the process started. I asked all my questions and feel confident in having it. I just need to choose which type of PEG I want now. There are a few options: if I eventually want to have a "button" then I need to have a wider tube fitted for now. The button is less obvious as it sits close to my skin, but it has a higher risk of falling out because it is only secured by water filled balloon on the inside of my stomach. The other option is a thiner tube which is less likely to fall out but it means that I won't have the option to have a button fitted in the future. So need to think this through.
Since being out of hospital, Alex and I have still been trying to find somewhere to live and I have been doing a lot of dog grooming, which I love! Been seeing friends and trying to fit in as much as I can while I'm well. Just need to make sure I don't overdo it and make myself ill again!
Good news, I finally had my meeting with the surgeon regarding the PEG (the tube to help me gain weight by feeding me extra calories at night). Of course the appointment wasn't without it's glitches as always, but I was so glad to actually get the process started. I asked all my questions and feel confident in having it. I just need to choose which type of PEG I want now. There are a few options: if I eventually want to have a "button" then I need to have a wider tube fitted for now. The button is less obvious as it sits close to my skin, but it has a higher risk of falling out because it is only secured by water filled balloon on the inside of my stomach. The other option is a thiner tube which is less likely to fall out but it means that I won't have the option to have a button fitted in the future. So need to think this through.
Since being out of hospital, Alex and I have still been trying to find somewhere to live and I have been doing a lot of dog grooming, which I love! Been seeing friends and trying to fit in as much as I can while I'm well. Just need to make sure I don't overdo it and make myself ill again!
Friday, 10 January 2014
What happened next...
So in my last blog, I mentioned I was about to come up to Brompton to get some home IVs. Well my lung function was down a lot- only 44%- so I had to stay in. Alex and my mum came up for New Years Eve, but it wasn't the same lol!
The plan was to start the IVs off here and then continue at home as we were moving house (would have been today), so I obviously needed to be out to help with the move. Then disaster struck again and the house fell through 2 days ago :( The current tenants are refusing to move out and want the estate agents to take them to court. However, it meant that I could continue my IVs here instead.
I hadn't improved at all after about a week and a half, so last night the docs changed my IV to a new one. I can't remember what it is called, but I know it has the word "tiger" in it, so I will call it Tiger IV :) Hopefully this one does the trick. It has a very strong nauseating side effect, so much so that they have to give you an anti-sickness that they use for patients having high dose chemo! Should all be worth it in the end though.
Alex is frantically trying to find us a place to live, there's not much on the market within our budget at the moment.
Not the greatest start to the year BUT... everything happens for a reason I suppose!
That's the depressing health stuff done... other than that... Barney and the kittens are still happy as Larry- I went home for a few hours last night and saw them, was so great. And I saw some of my friends down the pub :D I've been really lucky as I've had so many people visit me this admission! Definitely makes it easier being in here. And I've been phone pranking Alex's mum and nan haha. It's so funny! Passes the time during the day ;)
The plan was to start the IVs off here and then continue at home as we were moving house (would have been today), so I obviously needed to be out to help with the move. Then disaster struck again and the house fell through 2 days ago :( The current tenants are refusing to move out and want the estate agents to take them to court. However, it meant that I could continue my IVs here instead.
I hadn't improved at all after about a week and a half, so last night the docs changed my IV to a new one. I can't remember what it is called, but I know it has the word "tiger" in it, so I will call it Tiger IV :) Hopefully this one does the trick. It has a very strong nauseating side effect, so much so that they have to give you an anti-sickness that they use for patients having high dose chemo! Should all be worth it in the end though.
Alex is frantically trying to find us a place to live, there's not much on the market within our budget at the moment.
Not the greatest start to the year BUT... everything happens for a reason I suppose!
That's the depressing health stuff done... other than that... Barney and the kittens are still happy as Larry- I went home for a few hours last night and saw them, was so great. And I saw some of my friends down the pub :D I've been really lucky as I've had so many people visit me this admission! Definitely makes it easier being in here. And I've been phone pranking Alex's mum and nan haha. It's so funny! Passes the time during the day ;)
Monday, 30 December 2013
Rest In Peace Paul x
It's been a weird few weeks, some highs and some extreme lows. Firstly, the lowest low was hearing that my friend Paul had passed away on Christmas morning. I knew Paul from the Brompton and he was my closest friend with CF. We only knew each other for a few years but he was so funny and unlike anyone else I'd ever met with CF. Sadly, he had had a rough few months battling against this illness and it was eventually decided that he would go onto the transplant list. The last time I spoke to him he told me he was having the transplant talks with the doctors, so I'm not sure how far along the process he was before he passed away. He may not have made it onto the list, but even so, it makes me think of all the other thousands of people waiting for a transplant of any kind.
Make it your New Years resolution to sign up for organ donation, if you agree with it! If you needed a new heart, kidney, lung... would you take one? If you would, then you should give one when you're gone. It takes 2 minutes to sign up and you could save up to 7 lives!
Here's a link of an interview on Daybreak this morning, of two girls who have had lung transplants. You may recognise one of them, Kirstie, who made a documentary a year or two ago.
http://www.itv.com/daybreak/health/two-friends-saved-by-lung-transplant/#.UsE0roT--qg.facebook
This is the organ donation link, for if you want to sign up:
http://www.organdonation.nhs.uk/
The highs of the last few weeks were obviously CHRISTMAS, seeing family and friends! I love this time of the year and all the merriment that goes with it :P I went to Winter Wonderland with some of my friends, a few parties and get-togethers and had lots of yummy food!
My health has declined a lot and I've just literally got off the phone with Alan at the hospital and I will be going up later today to start home IVs :) Bed rest and munch for me for the next few weeks. Then early Jan, Alex and I will be moving again- getting fed up of moving around!
So fingers crossed for a smooth and quick-ish run at the hospital today. Speak soon xxx
See you again one day Paul, but until then breathe easy and rest in painless peace friend xxx
Here's a link of an interview on Daybreak this morning, of two girls who have had lung transplants. You may recognise one of them, Kirstie, who made a documentary a year or two ago.
http://www.itv.com/daybreak/health/two-friends-saved-by-lung-transplant/#.UsE0roT--qg.facebook
This is the organ donation link, for if you want to sign up:
http://www.organdonation.nhs.uk/
The highs of the last few weeks were obviously CHRISTMAS, seeing family and friends! I love this time of the year and all the merriment that goes with it :P I went to Winter Wonderland with some of my friends, a few parties and get-togethers and had lots of yummy food!
My health has declined a lot and I've just literally got off the phone with Alan at the hospital and I will be going up later today to start home IVs :) Bed rest and munch for me for the next few weeks. Then early Jan, Alex and I will be moving again- getting fed up of moving around!
So fingers crossed for a smooth and quick-ish run at the hospital today. Speak soon xxx
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