The trial begins

Yesterday was the end of my 2 week course of IVs. I feel a lot better in myself- more energy, sleeping better, coughing less, more of an appetite etc etc. My lovely friend Donna from belly dancing took me to my hosp appointment to check lung function, weight, have a blood test, take out port needle, get nebuliser meds and start the trial.

Disappointingly, my lung function hadn't shifted at all. Not even 1% up! After two weeks of IVs and all the physio and resting I'd been doing, don't get why it hadn't moved. The consultant wasn't available to see me though, so I couldn't try any other meds or anything so I had to have the needle taken out and see how I get on at home. Hopefully I can get it up through exercise. If not though, they said to just call up and they will get me an appointment.

In my last post, I spoke about a trial involving a smartphone app and recording data to try and keep patients out of hosp and notice if they need treatments earlier on before the symptoms get worse. I started this trial this morning after receiving all the equipment yesterday at the appointment. All the gadgets are quite fun to use and it's so clever how the app just picks up all the data. It's very straight forward for me as the patient. I need to do my weight, lung function, 02 and heart rate levels, activity level, give a score out of 10 of how I'm feeling and how my cough is and give a sample everyday for 6 months. I hope at the end of this my data is useful for the researchers and they can put this app in place for all CF patients- and maybe patients with other conditions. I'm sure this is the way forward!

Here are some pics of the gadgets. Just waiting for my freezer to arrive. I get to keep all the equipment after the trial finishes- including the freezer haha.

 Rucksack to keep everything in 

 02 and heart monitor:
The top number is the % of oxygen in the blood. 100% is the best- most healthy people sit at 99-100%. The bottom number is heart rate. A healthy resting heart rate is between 60 and 100 beats per minute. 

 Phone and the app:
Once I've done each part, the right part turns green

FitBit type thing:

Looks like I'm on tag haha. I press the centre and it tells me how much of the recommended daily exercise I have done for the day. I think it's pretty much a pedometer. 

Mini lung function kit:

I blow into this machine as hard and fast as I can. after the first second or 2, I slow down and continue to breathe out until my lungs are empty.

Scales

So that's that! 

Now to focus on exercising more and putting on weight to try and get these lungs better. Need to be well for summer. Can't wait :D 

xo

On the mend

A beautifully sunny morning will always improve your day.

Quick update from the last blog: the orals didn't do much for me this time so I asked for an appointment to see the doc and see if I can start some IVs. For some reason the clinic has been overly  busy these past couple of months and I wasn't able to get a sooner app than what I already had booked in. Soooo, 5 weeks of being unwell has obviously had quite a knock on my health. My lung function has dropped by 15% to 43%, I have lost 2KG putting me at 50KG, sats have dropped to 92% and I just generally haven't been in a good state.

The good news is, I have finally started home IVs :D I'm on day 4 and I usually get worse before I get better, but I will soon be back to my usual self- busy, eating loads, managing grooming, housework, socialising.... Cannot wait!!!

The last few days I've been feeling so low. It's not like me. I can only put it down to that after a much longer than usual wait for some meds, my body is just so exhausted and I'm getting ratty because of that. My plan today is to just stay in bed and rest; hopefully that'll do me some good. Plus the sun is out, and that always makes me happy :) can't wait for summer!

I probably should reschedule all my grooming, but I just hate doing that. I hate letting people down, and I enjoy seeing the dogs. They're all good dogs that I have booked in though, so I reckon I'll be alright. Plus, I can always ask Alex or my sister to bath them- that's the most exhausting part.

When I went to hosp, I saw a poster about a new trial-type-thing. It's a bit different from the usual medicine trials. It's a smartphone based trial. The aim is to try and keep patients out of hosp for longer- always a good thing! So the patient will be given a smartphone, set of scales, mini lung function kit, mini sats and heart monitor kit, FitBit type thing, mini freezer and a cool bag. Everyday for 6 months you need to measure your weight, lung function, heart rate, 02 levels, activity levels and give a sputum sample and send it via bluetooth to the smartphone (take the samples to clinic when you go). This will upload onto the trial database place. The researchers are looking for patterns in patient's results to see if they can detect when they are going have an infection, before it takes hold. Therefore, starting treatment earlier and not spending so much time in hosp. So I've said I'm interested and hopefully can start this trial soon.

Will let you know how it goes!

xo

Mind set.

Eurghhh, sick of being sick! I get so bored and there's always a million and one things I need/want to be doing but just can't. I started to get usual symptoms: loss of appetite, coughing more, sleeping more, exhaustion... So thought I'd rest up in bed for a few days and see if that healed me- it didn't. So last Friday I started some orals. I'm on day 3, so not much improvement yet.

When my health is down, my mood usually is too. I'm never really bothered about having CF most of the time; not really one of those "why me?!" type of people. I'd rather I had it than my brother or sister. During this weekend though, I felt a rare feeling of jealousy toward healthier people!

I went to my first grooming competition on Sunday. I was due to take part but had to pull out due to my health. I'm so grateful to my friend Justine who drove me all the way there and back to spectate instead. It was an amazing experience, we loved every second of it! But that evening I just felt frustrated. There were groomers there with years and years and years of experience, way more than me, and they have built an empire- one woman has 5 salons, one of my friends has 10 poodles, my old tutor will do up to 35 dogs a day at her salon! And no matter how hard I try, how much experience or qualifications I get, how much money I put into it, my health is never gong to be stable enough that I can do all of those things. I'll always have to "take it steady" or "not overdo myself" blah blah blah. Boring!

I'm proud of how much I do groom and the business I have created, but I'm the kind of person who always wants to better myself and keep going up. I don't want to be "steady" and not push myself. For instance, if you take a job at a shop as a shelf stacker, or in an office as an errand runner, you will probably want to work yourself up as you gain experience and stuff. I just feel, if anything, I'll end up working my way down as I get older and my CF gets worse. Of course, theres always the option of transplant at that point and the amazing results that can have, but of course, you have to go through the darkest, hardest time in your life to get there!

I can say all this, but I'm never going to stop pushing and trying to better my business and myself. It's just not in me to sit back and slouch through life not trying. Even as I'm typing this, I'm rebooking all the dogs I had to cancel last week due to health. CF will not have me in chains, strapped to my bed. I will fight harder because of this and try to be proud of what I can accomplish. I'll probably always want more! ;)

xo

What a difference a year makes!

Happy New Year! We're a few weeks into it, but better late than never eh! I haven't blogged in over a month; I have been so busy with dogs, Christmas, life etc haha. It's been a great month for me and I hope you've all had a great Christmas and New Year.

My family Christmas dinner

Christmas jumpers!

The drawing of our pets I got for Alex

Posh night out!

I use this blog as a sort of diary and I am so glad I started it.. wow 4 years ago now! It's documented my lung functions, weight, feelings, photos, decisions etc throughout the years and is interesting to see how I compare to that now. I have been reading back over the last year's posts and wow, what a difference a year makes!!

This time last year I was very unwell. I was quite frail from being so underweight, a plummeting lung function, bleeding lungs regularly, I felt very alone and had very little hope. I was throwing up a lot due to being so ill and on IVs pretty much every 6-8 weeks. Hospital trips were a 5 hour nightmare, not to mention the days of stress leading up them. Overbooked clinics, understaffed wards.... eurgh :(

I also mentioned this time last year, of enrolling at belly dancing classes.

Now, I'm the heaviest I think I've ever been at 52.1KG, a HEALTHY BMI of 20.1! Finally :D :D pretty soon they will be asking me to go on a diet haha ;) I found an old photo of me from a few years ago. It's shocking to see how skinny I was. My legs especially. Ew I think I look awful here!! I must have been about 44KG here, if that.

My infections have been so much less recurrent and with a lot of hard work I have managed to keep creeping up my lung function percentages and I'm currently at 58%. I'm hoping I can get it into the 60's again one day. Since joining Frimley Park (will be a year in March), I've only had 2 or 3 courses of IVs, which is incredible!! Chris, the doctor couldn't believe it when I saw him the other day. I have the whole team there to thank for this vast vast improvement. They truly have saved my life and I dread to think where I'd be if I hadn't moved. For me, it was 100% the right decision.

I'm nearly a year into my belly dancing now. I really enjoy it; it's such fun and the loveliest group of women you could wish for. I feel very comfortable doing it and know that I can go at my own pace. It's great to do an exercise you love and have fun doing, then you don't even realise it's exercising! :) In December we did a show to family and friends.

Some of the belly dancing girls

Well that's about it for now! Glad I've had time to reflect on things, sometimes you need to to keep your head in the right place. I'm currently half way through a course of oral antibiotics, which I feel are working well. I plan to keep putting on weight an improve my fitness, posture and diabetes control this year. Here's to 2016! xoxo

Just call me Diabeto

I have finished my 2 week course of IVs today. I was booked into the diabetic clinic (which is where the CF and diabetes docs team up basically), due to the high blood sugars. I saw the diabetic doc and nurse and they told me I have Cystic Fibrosis related diabetes (CFRD).

I'm going to try and explain CFRD, I'm very new to it all so I don't know everything about it!
So you have the most commonly known diabetes: type 1 and type 2. Type 1 is something to do with the body not producing insulin or not enough and is commonly detected in young people, who may be struggling to put on weight. Type 2 is more commonly detected in overweight middle aged people when there isn't enough insulin for the amount they are eating. CFRD, I'm told, is closest in similarity to type 1. With CFRD, we have insulin in our bodies but due to the thicker mucus around our body, the cells (I think) get clogged up and the insulin can't penetrate through.

The risk with CFRD is if it's not controlled, the bugs in our lungs will be living in paradise. Along with the warm, wet conditions in there, they will have all the sugary blood they want and reproduce quicker, causing more infections. Also, as you know I'm forever trying to put on weight; with high blood sugars your body can't absorb all the calories. Once your blood sugars go above the normal range, you will just wee out the rest of the sugar that could help to put on weight. Plus insulin can have a side effect of weight gain :D

So all in all, it's super beneficial that my CFRD has been picked up and I can start daily insulin to manage my sugars. The diabetic nurse then came in with a dummy insulin pen for me to try. Any close family and friends will know how I've struggled with my needle phobia in the past. I let the nurse do it on me first. She squeezed the fat in my stomach and pushed the needle in. It really didn't hurt at all, thank God! Once it came to me doing it I started freaking out. Getting all sweaty and crying and all the old drama I used to get. The nurse, Alex and Charissa, my dietician, were so calm and patient. I literally was shaking but I couldn't believe it when I DID IT! Probably the slowest anyone has ever done it haha, but I did it! :D :D :D So now I just need to get it put on my repeat prescription, pick it up and then I'm on my way.

Al and I love family guy, there's this kid in it called Diabeto and he has diabetes. He cracks me up! I said to Al, just call me Diabeto :'D

I need to let DVLA know that I have CFRD and check my sugars before I drive. 5 and above it fine, but 4 and below is not and I'd need to have a sugary snack or drink before so that I don't have a hypo. A hypo is when your sugars go too low. There's different symptoms, but mine are when I get hot and sweaty, my vision blurs, I can't concentrate, get really hungry and need to sit down. So obviously, it would be unsafe for me to drive when I'm like this. Diabetic people also need some special eye, foot and urine tests once a year to check different things.

Anywho, I'm now off IVs and can't wait to have my energy back! IVs take it out of me and I sleep so much when I'm on them. Got girlie catch ups planned and a cocktail making class :) Also, my weight has finally just scraped into the healthy BMI range by 0.1 hahaa :D

Jo
xo

Hosp and Harrods!

After my follow up for my annual review appointment, I'd planned to go onto IVs for a boost mid November. My chest didn't agree with this plan though, so I went on them a couple of days ago instead. My lovely friend Ashley took me up as I hadn't had much energy the last few days and my husband Alex has been diagnosed with epilepsy so can't drive at the moment. The whole starting IVs ordeal is so much quicker at Frimley than Brompton was, makes for an easier day, especially when all you want to do is snuggle up in bed and sleep! As with any trip that Ashley goes on, it was full of hilarious disasters!!! It was so funny! :'D

While I was there I saw the dietician and gave her my blood sugar results that I'd been doing for the last 2 weeks. I knew they weren't good lol. There's a range which is "normal" to be in before eating and 2 hours post. The most worry was on the 2 hours post as sometimes they were about 16/17, when they should be no higher than 8- I thinkkk...? Anyway, yeah they were too high but I asked if it could be due to my chest getting worse and she said that's a possibility. I'm to carry on testing while I'm on IVs and I need to see the diabetic nurse in a few weeks. They may decide to do what is called a continuous glucose test, which is where they put a device in your stomach- a bit like piercing your ear, they will put it in using a needle of some sort and then it will stay there. I think it's only for a few days but it continuously monitors your sugar levels in your blood and keeps a record of them. Very clever! Then if it concludes that I do have Cystic Fibrosis related diabetes (CFRD) I will probably start some insulin. It's all those Angel Delights I've been eating all my life hahahaaa.

So thennnn, the dietician came onto my bone density results. She'd got the detailed report back and, again there is like a normal range etc etc. They test the bone density in your hip and your spine and mine have dropped. It's common in people with CF because of our digestive systems not working properly and with being ill and sometimes not going outside enough due to hosp admissions, being in bed etc, we don't absorb enough vitamin D. You need vitamin D to absorb calcium- something I have more than enough of in my diet! The main way of getting vit D is through the sun, but you can also get some from food or vit D supplements. I've started an extra vit D tablet, which is soooo pretty! Really weird thing to say about a tablet but the colour is just so beautiful. Reminds me of the ocean. Here's a pic- you'll see what I mean!

Another thing I can do to improve my bones is jump 20 times a day. Super strange request but apparently the low bearing pressure will help strengthen my bones more. As we develop our bones mostly through our teenage years, there isn't a huge difference that I can make by doing these things. It's unlikely I will bounce back to the "normal" range. I will probably have osteoporosis in the next few years, but as I said, it's pretty common in CF people. Just have to do all I can to slow it down :)

Sooooo, now I'm on IVs. Had a blood test today, and have another one next week and just have to get these lungs back into gear.

For Ashley's birthday, she was given a gift certificate for cream tea at Harrods and she asked me to join her! I hadn't been to Harrods in at least 10 years. It was amazing- if not exhausting haha. Such a lovely place and all the staff are so friendly. Of course we had a good look through Shoe Haven and tried on things worth more than all the contents of my house put together! The Chritstmas bit was lovely too.

Halloween's been, hoping to be well enough to go to my aunty and uncle's for fireworks evening.

For my doggy clients this year I'm making them little bags of treats to hang on the Christmas tree. My bags came through the post this afternoon!

Finally, hopefully some of you are watching the channel 5 series "Gift of Life" on Weds eves. If it has made you think about becoming a donor, please check this link out where you can sign up. It literally takes TWO minutes! Also, let your family know of your wishes. At the end of the day, they will have the final say.

https://www.organdonation.nhs.uk

xo

Follow up appointment

Can't believe it! I'm the heaviest I've EVER been in my life! 52.10KG, so happy :D Had my follow up appointment from my annual review yesterday. Lung function was alright at 55%, weight frickin amazing, ultrasound fine, vit levels a tad low. I'm border line diabetic again, which I always am when I do the big glucose test, so need to do 2 weeks of blood sugar monitoring at home with my kit. Also, my bone density scan came back as borderline osteoporosis, so I'm upping my vitamin D intake but don't think it's physically possible to drink any more milk haha; I go through at least 18 pints a week! Overall, the consultant was pretty happy with my progress these last 6 months. I've planned to have home IVs mid November to give me a boost before Christmas and before my belly dancing show!

I've been belly dancing for about 10 months, it's so much fun! It's a very laid back class and you just do what you can, which suits me well. We have a Christmas show coming up, which I've invited most people I know to haha. Probably will be regretting that...!

Also, to get me ready for winter, I've had my flu jab. Anyone who has CF, asthma, any other respiratory illness, pregnant, elderly or really young, or who has an illness that puts them more at risk of contracting flu is entitled to a free flu jab. It's not that bad, it's just a tiny needle and is painless and over in less than a second! You might get a dull ache for a couple of days in the spot you had it done, but other than that you will most likely feel fine! 100% better than if you had the flu! If you don't meet the criteria for a free flu jab, you can also pay for one at chemists and such. It doesn't cost too much, as far as I'm aware.

Tonight (21/10), on Channel 5 at 10pm, there is a new series starting on organ donation. It's a must watch! It features a young girl with CF, whose blog I follow, who had a lung transplant. I think there is a link to her blog to the right hand side of my page. Her name is Holly.

My last post was just before my birthday, I had an amazing day with Alex and my family and had a great party with my friends :D

I'm not elfing this year, think it's getting a bit too risky with my lung function to be standing in the cold all day long for 6 weeks, As fun as it was, I'd rather be in the warm this year!

Ooooh next Halloween, then bonfire night, then CHRISTMASSSSSSS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!