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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Annual review

Annual review. Two words I loathe! The thought of loads of blood tests, tiring lung functions, long arse fasting, gross drinks, exhaustion... Never a day you look forward to!

This was my first annual review at Frimley. I'd been told what the day entails and had been worrying about it a bit. Alex was all like "it will be fine! It won't be as bad as at Brompton. You have nothing to worry about", but it wasn't helping.

I should have listened to him though.

The day was so relaxed; I almost enjoyed it- which is a very odd thing to say! As I'm not diabetic, I had to fast for my glucose tolerance test, which is when you have a blood test, drink a really sugary drink, then in Frimley's case, have a blood test after 1 hour and another one after another hour. I dread bloodtests, but thankfully they went super smoothly :D

I also had my lung function. I'm used to having to do 30-60 mins of blowing out hard and sucking in fast. It's exhausting! Frimley do it differently, and just do a regular lung function where you just do 2 or 3. It may not be as thorough, but when you've not eaten and have no energy, you are certainly grateful for it!! Miraculously my lung function has gone UP to 58%!! May only be by 2% but up is up. I literally cannot believe it. I haven't had IVs since May and haven't had orals in about a month. This hasn't happened to me in at least 4 or 5 years. I was so so sooooo happy! Who knows the reason why: perhaps because I am just creeping out of the age range where girls seem to have a really hard time with CF; perhaps it's because I've changed hosps; perhaps it's because I've changed drugs. Maybe a combination of the 3. I'm just so thankful :)

To top off my sickening-glee haha, I am the heaviest I have ever been in my life- 49.9KG!!!!!!!!!!!!!!!!!!!!!!!!!! I thought the scales must have been faulty- and so did the dietician- but she got on and said they were working. All the hard work is paying off :D :D :D :D :D

Also had an exercise test, talks with dietician, physio, pharmacy, nurses, had my port flushed and was given a new compressor (sad to see my old boy go but they said he's so old he needs to be condemned!). My follow up app is booked for 6 weeks when I will get the results of the tests and see one of the consultants :)

An update on my friend George who received her new lungs when I last posted. From what her husband and mum have posted on her facebook, I understand she has had a lot of stomach issues but has started her road to recovery and even got out of the hosp for a little bit in her wheelchair for some fresh air! I can't imagine how amazing it must be for her and her family. To be able to actually take a breath! That's how severe the poor girl's CF had become. Her mum has just written a blog post, which you can find it to the right hand side of my page if you're interested in a read.

So other than CF stuff, this week my brother graduated from Hertfordshire University studying physiotherapy and has now started his career in our local hospital. On the same day, my sister also received a call to say she had got her first paying job. She's so excited, bless her. She starts in just over a week. Very proud older sister moments!

I also have my birthday to look forward to now in 5 days time :D No doubt will blog about that after.
Until then! xoxo

P.S. Sorry about the overuse of exclamation marks(!) Miss Ford, my old english teacher, will not be impressed hahahaha ;)

SHE GOT HER LUNGS!!!!!

SHE'S GOT HER LUNGS!!!!

For anyone who has been following my friend George's journey, she finally received the lungs she so desperately needed last week. Such amazing news. A family, in the middle of the heartbreak of loosing a loved one, said "yes" to organ donation and saved George's and probably many other lives too. It's incredible! I've known George ever since I moved to adult care, about 8 years ago. She was the first friend I made at the Brompton and now to be able to read and see her go through this tough tough journey and stay as strong and determined as ever has been humbling. George still has a way to go with recovery and getting herself as physically strong as possible, but there is no hint doubt that she will carry on being the incredible person she is. YOU CAN DO IT GEORGE!! There is a link so the right hand side of my blog to her blog, if you'd like to have a read.

My health is doing alright at the moment. Finished oral tabs, when I next get ill I will probably have IVs to give myself an extra boost. Hopefully I can stay well enough for my birthday next month. I did a trial of a nebuliser I used to be on and that went well, so just waiting for the parts I need for my neb to be delivered so I can use it. Next month is also my annual review- first one at Frimley. I know they do it differently to Brompton, but still not looking forward to it haha.

Have been looking after two doggies for 2 weeks for a friend. Barney has been loving the company of other playmates. Sleeping has been a nightmare though with the three of them, 2 cats and me and Al trying a share a double bed!

Last weekend my mum, dad, sister and me went to meet some of our family who were holidaying in the New Forest. Was a nice break and really funny!

Deer spotting with mama

My ingenious plan to put binoculars infront of the camera- it worked!

 Me and daddy

Weight gain :)

I've managed to avoid IVs for a bit longer! For me, this is great news as I was becoming pretty dependent on them whilst at Brompton because they wouldn't offer anything else. However, at Frimley they are giving me oral meds when I feel I need a little boost, instead of bringing out the big guns (IVs), which I could become resistant to if I have them too often.

At clinic the other day I had put on weight too :D Up to 47.5kg. I have been having a new supplement called Skandishake, as well as the Calogen I have been taking for years. Glad to see it's actually working. Just need to keep it up and I might FINALLY become the 50kg I've been trying to achieve for about 8 years haha.

Next appointment I will be having a trial for a nebuliser I used to be on a few years ago. The hope is that by restarting this I might not need antibiotics so frequently.

In the last month we've Alex's cousin's wedding- which they were very lucky to have such beautiful weather for! The amazing Ed Sheeran's concert at Wembley, my belly dancing show and a beach trip.

Wedding

Barney at the beach

Hopefully the weather picks up again soon! Can't be dealing with a wet August.

On the grooming front, I've now dabbled a bit in creative grooming. It's a relatively new part of grooming that has made it's way over to English grooming over the last few years. A client of mine asked for one of her pups to have pink feet, tail and ears; and the other to be made to look like a panda! 

There was a great documentary series on Great Ormand Street Children's Hospital (GOSH). I think it was a 3-parter. I managed to catch up on the second episode, thanks to a friend recommending it. It was about lung transplants. 3 of the children had CF and it was very informative. The children were so brave and the hospital team was outstanding! Great awareness for organ donation and showed how it can change someone's life completely. If you have a chance and are interested in that sort of thing, it's a good watch. Was on BBC 2 9pm, I think a couple of Mondays ago.

xo

Long time no see

I've not posted in a while, a fair bit to catch up on! So, last blog I'd ended up in Frimley as an inpatient. I stayed in for a few days then was allowed to continue my IVs at home. The main reason I wanted to come out early was for my cousin's surprise spa weekend for her 16th birthday. All the girl cousins were going and I HAD to be there too. It was an amazing weekend up in Yorkshire and I loved spending time with my family.

My IVs came to an end and I went back to Frimley to have my needle removed and final bloods, lung function, chat with doc etc etc. Lung function hadn't moved at all, but doc Alex said that she was mainly concerned with the bleeding (there is an actual word for this but I can never remember it or spell it- something like heomotopsis??), so wasn't too worried that my lung function hadn't changed. Had a huge bag of supplements given to me and off I went.

Then the usual happened where I lived my life happy as larry and totes forgot about this blog haha. It always happens! I don't ever really sit down and go on my laptop anymore until I get ill, so that's when I remember about the blog. Can you see what direction my health has gone atm... but we'll get there later.

So while I was carefree and well I had a blast :P

My sister had her birthday...

And party...

Vernoica, who I dog sit for, got a new puppy, Charlie...

Went to see my cousin's architecture uni exhibition (he got a 1st in it!)

Went to good old Epsom Derby! First time in 5 years I haven't been in hosp for it :D

Had Alex's cousin's hen do...

 Have had a few bbqssss! The boys keep burning it all though hahaha

Went to see the sound of music at Woking theatre with my family

And my fur babies are all well <3

 Love summer so much! Can't wait for the rest of it :D


If you watch Eastenders, you'll know there's a new character called Jade who has CF- great awareness. Plus the BBC have been working with the CF Trust to make the portrayal of CF as realistic as possible, which is great. Lets hope they do us proud :)

So, as I was saying before, my health now isn't the best. I noticed it getting worse again, but thought I'd last at least another couple of weeks. Then in the bath the bleeding started again. Not as bad as it has been, but still not the most fun thing in the world. I decided not to wait till I could speak to the hosp, and just start some oral antibiotics that I had in the cupboard. Spoke to them this morning and they agreed and asked me to let them know if I bled anymore. So lets just hope I can nip it in the bud, keep my weight up and carry on enjoying summer!

xoxo

Frimley appointment

It's Tuesday! Therefore had my appointment at Frimley. I needed to be there for 9.30 so it was an early start. Usually mornings are better for me, but of course on this one particular morning I would feel like crap- sod's law!

I managed to get there though (first time driving myself) and the appointment was going swimmingly. Lung function had surprisingly gone up- might have only been by 1%, but up is UP! Weight had gone down to 46.something, but I'd expected that. So the doctor suggested oral Septrin for two weeks and Tria-something acid if needed. Tria-something acid (will find out the proper name) is to make your blood more sticky, so that if I were to bleed again I would take this for 3 days and it would help my blood to clot and hopefully prevent further bleeding.

Then I walked to pharmacy, waited for my meds and walked to my car. I was so happy, I got to go home to my Alex, Barney and my cats. As I was pulling out of my car parking space, I needed to cough. I had tissue and a plastic bag in the car, which I use if I'm driving. As soon as I started coughing I knew. It had happened again! I looked at the tissue and saw blood. I re-put the car into gear and parked again; got my things and hurried back to the CF unit. I told them that it had started again and the next thing I knew I was admitted. I was so upset! Purely because I thought I'd escaped admission and thought I'd be back in my own bed with my Alex cuddling me and my animals by my side. It was just a shock.

Whenever I get admitted I just worry about Alex and my animals. I'm not usually so sad about myself being in, I just wish I could be at home for my family. Alex and I are a team and if one of us isn't there or is unwell or feels down, the other doesn't function correctly. I wish I could be there to make his packed lunches and write him his little love note to go with it (soppy I know) or sit with him on the sofa, or the best part of the day- cuddling in bed and falling asleep with him. And my babies, especially my Barney bear; I know he changes when I'm not there. He isn't playful and he's always looking out the window for me to walk up to the door. Cats are more independent, I'm sure they notice I'm not around but I think they cope better than me, Alex and Barney put together hahaha!

So anyway, I've had my bloods done, an x-ray, my first dose of meds, lunch, dinner, my parent's and Abi have visited and now I'm getting ready for bedtime :) This place is lovely! Not saying that Brompton isn't, they are just two very different hospitals. Being in this room feels more like a hotel room if I'm honest. There is laminate flooring and a posh Dyson fan. The staff are also so caring, they can't do enough for you! When the team who were with me today were clocking off, they all came to say goodbye, which was so kind of them. Checking I was OK with everything and settled in.

 Dyson fan

Laminate flooring

... Was just about to end this post, and then this came in......!!!

The "snack trolley"! Full of crisps, chocolates and lollipops!

Might stay up an extra few mins to eat all this :D

xoxo