I want a salad!

I am currently at the Brompton hospital, just starting some home IVs as after my amazing holiday to Rhodes, I became very ill. The usual symptoms of coughing, exhaustion, painful joints but this time it seemed much worse and I the pain just wouldn't budge. I also couldn't keep much food down so have lost weight again :( 44.8kg at the moment. 

All my life I have needed to eat very fatty/high calorie foods to try and gain weight. Sounds good to most people: as much chocolate, crisps, cakes, fry ups, mc donalds as I can eat! But living with the reality isn't as tasty. I would LOVE to be able to have a salad for lunch or a bowl of fruit for dessert. I have only had one salad (as a meal) in my life and it was sooo yummy! But without drenching it in salad cream/dressings, there isn't much fat or calories in it. Therefore, it isn't much good to me to be eating it regularly. The dietician tells me I need at least 3000 calories a day, every day to put on weight. It is a continuous struggle and can be very stressful when you're not feeling well and don't have an appetite. 

So, after trying exceptionally hard over the last 6 years and still haven't put on and kept on any weight, despite trying many supplements too; I have now pleaded with the dietitians and doctors to consider me for having a PEG fitted. I was close to having one a few years a go, but we decided then to give it another year or so of trying to manage my weight more naturally. A PEG is like a little tube that goes from your stomach out to the surface of your skin. You then attach "feeds" (high calorie liquid) at night so that as you sleep, you are taking in more calories! I only remember a few details of the PEG and the operation from the talks a few years ago, so will ask docs at my next clinic app in Sept. 

I am very excited at the possibility of having this op done, if it is a success and I am able to gain weight from it, my lungs will benefit as my body will be stronger to fight off infections. Plus, I might be able to eat a salad every now and then! ;)

Annual review follow up appointment

Today was my annual review follow up appointment. Had my actual annual review like a month or 2 ago, but today was when I'd see the doctor and go through the results of the tests.

So firstly, weight was down to 45.4 kg. I had a feeling it had gone down due to the hot weather making me less hungry and my chest getting worse; so using more energy to cough, therefore loosing weight. The plan now is to try more supplements and to aim for 3000-3500 calories a day. That's going to be hard, but I'm determined to do it. If anyone knows any super calorie food, let me know what they are!

Also, I need to do some blood sugar monitoring to check I'm not showing signs of diabetes. It's common for people with CF to develop it at some stage, so the docs like to check every now and then.

Lung function today was surprisingly good! I had been feeling pretty bad over the last week, but today I managed to do a good blow of fev1 68% and fvc 99%.

My chest xray, in comparison to last years, hasn't changed too much. This is great news as I was fearing that I had gone down hill a lot. My lungs still aren't amazing, but the fact that they haven't declined dramatically has really reassured me that all the hard work is paying off and things seem to be going well.

I've been referred to a specialist about my painful and swollen joints- mainly my ankles and knees.

Overall my appointment went better then I expected. I am now starting a course of Septrin to try and increase my lung function and keep me well for my holiday in a few weeks. I am going to rest a lot this week and do loads of physio and stuff my face to try and get my health as good as possible.

This is all great news for me, but whilst at hospital I saw one of my CF friends who isn't doing as well at the moment. Seeing him in a wheelchair and struggling to talk through lack of oxygen was upsetting and I wish I could have given him some of my luck today to make him feel better. He seems to not be having much of it at the moment. Thankfully he is in the best place and I hope that he will recover super quick and be able to go home soon :)

Other than CF stuff... Alex and I rescued two kittens! We've called them Ethal and Arthur. Barney's been brought up knowing cats so they are getting along well so far :) Here's a little pic...

Arthur on the left, Ethal on the right

Barney, Arthur and Ethal- happy families <3

Quick update

Just a quick update.. After 3 weeks on IVs I came off them. I was supposed to go up to the hosp for a lung function, weight check, sats check etc but when I got up there I couldn't find a parking place anywhere. Was extremely frustrating, so I had to cancel and go home. In the end, Alex did my final flush and took out my port needle, my mum did my lung function and I just emailed the hospital my results.

Sadly, my lung function hadn't come up much, if at all. The results were 64% and 98%. The 98% obviously is amazing for me, but that one isn't as important as the other one (the 64%).

So I have my follow up appointment for my annual review on 29th, so I will finally see a doctor other than Barbara- who is the person I see every time I go to Lind Ward to get IVs. It will be good to get someone else's opinion on what I should be doing.

Catch up

Today is my HUSBAND Alex's bday! We celebrated it this weekend with a BBQ with family and friends. Alex's isn't one for clubbing, he prefers to just relax with friends and famoo chatting away (he never shuts up!) However, his older brother Julian, without fail, will try every year to get him out clubbing afterwards haha.

I had still been resting the weeks previous so hadn't gone shopping to get anything nice to wear. So I got one of Alex's t-shirts and made it into a dress. Worked quite well I think :) And then when I wanted to go on the trampoline with his sister, I could just transform it back into a t-shirt and chuck on some leggings- versatile!

Also at the weekend was Barney's dog show. I entered him into 5 different events (I was determined to come home with a rosette, so gave us as much chance as possible!) They were: waggiest tail; best puppy; leave the sausage; fluffiest dog and this other one which was just like most healthy dog basically.

He won fluffiest dog!! When I went to show family and friends our rosette, I tried to blag that he won most obidient dog- not many people believed me haha! ;)

Health wise... I went to hosp on Friday which was 2 weeks after starting IVs. Usually I stop IVs after 2 weeks, but this time my lung function had only increased 10%- from 50% to 60% and I wasn't pleased or feeling well. So we agreed that I would carry on with the same IV meds for one more week and see what I'm like after that.

I asked again about the Serratia bug that is in my lungs and the docs said even though basically no one in the hospital has it, they aren't too worried about it. Obviously they don't want it spreading to other patients (so I stay quarantined when I go to hosp), but they feel that they can keep it under control with meds at the moment. I asked if there was any way I could get rid of it for good and prevent it coming back but apparently I can't, so it's just another bug to contend with and try and keep control of.

I knew that one day there would be more bugs in my chest than psuedamonus (can't spell it). It's just the nature of CF and I know people with 3, 4 or even 5 different bugs in their chest! So I'm still doing pretty well in comparison. Just going to increase my physio and overall effort to try and keep myself well :)

Scared!

It's been a while since I last blogged, but I just haven't had the energy. After I came back from my lovely honeymoon, I just slept and slept and slept. I think it was partly a come down from the wedding, I needed to rest for weeks.

Then I had the dreaded annual review last week. It's a day where you go hospital for lots of different tests to see how your body has changed in the last year. I couldn't eat as I was having a blood glucose test to check if I'm diabetic; other blood tests; x-ray; very detailed lung function and chatted to the physio and cf nurses.

Overall, I said to them that this year I have felt like I've had a lot less energy and my weight hasn't increased sadly. The blood glucose levels came back to show that I was borderline for being diabetic, so I need to do blood sugar monitoring at home to see if I need any meds for it or not. This happened a few years ago too, but in the end I didn't need any meds- so hopefully it'll be the same this time.

My lung function had dropped to mid 50's and my CRP (infection level in blood test) was quite high, so they put me on an oral antibiotic called Septrin to see if that helped.

So that was last week, but this week I had to go up to get my port flushed. I went up to the day unit and they like quarantined me in a separate room from everyone else, which was very odd. When I saw the doc I asked why and she said that in my lungs there is a new bug growing called Serratia. I still didn't understand why I was separated, until she told me that I'm the only person in the hospital and that the docs know of who has it. Obviously, they don't want it spreading so I need to be in quarantine when I go to hosp until it's gone.

I'm quite worried though because the head doctor- along with all the others- doesn't really know much about this bug or where it came from or how to get rid of it. They need to do some research on it. I'm hoping it's not a really bad or dangerous bug. However, maybe this could be the answer to why I have no energy ever, or why I get these horrible pains in my legs...?

Also, my lung function had dropped again, I think it's the lowest it's ever been 49-52% FEV1. So I'm on home IV's for 2 weeks. Hoping so badly that I start to feel good again soon!

Other than health stuff, Barney had the snip this week and I'm entering him into a puppy competition in June! :P

A married woman!

Well, it's been 2 weeks since I last blogged, and it's been such an exciting, unforgettable 2 weeks- the best 2 weeks of my life!

My wedding to Alex was definitely the best day of my life! I woke up at like 5.30am so excited, like a child at Christmas. I was at my mum's and there was a house full: me, mum, dad, brother, sister, 7 bridesmaids, al's mum, aunties, uncles, cousins, make up artists, photographer, hair stylist, florists... thankfully it wasn't stressful though and we could all enjoy the morning together :)

Then as we were getting into the cars to leave for the church, it started pouring with rain! However, the rain made some great photos of all the family helping to keep me and the bridesmaids dry, all giggling away! :)

The service was lovely, my little mama did some readings and it all went smoothly. The last wedding to be held in Ruxley Church.

Then Alex drove us to our reception at Glenmore House in our car that he'd put tin cans and ribbons and bows on.

We did the photos before the meal. Luckily it had stopped raining so we didn't get all wet.

Then we had a lovely meal and had the speeches.

After that, the evening guests arrived and Alex and I cut the cake and had our first dance, with my cousin Jessie singing it for us- "a thousand years".

Then everyone was dancing and drinking lol :D

On the Monday, Alex and I jetted off to Tenerife for our honeymoon :) We missed our puppy Barney so much! We called him everyday to hear his little bark haha. It was lovely to relax and spend time just me and Al, but we realised that we really are home-birds- we missed our friends and family so much!

My health for the wedding was beyond miraculous! For that one day I honestly felt like I didn't have CF. It was like God let me have a day off to enjoy myself fully and not have to stop every 5 mins to catch my breath or cough. Obviously, I did still cough every now and then, but I felt like I had all the energy in the world and could dance forever. I loved it so much!!!

I've been back from Tenerife for nearly a week now, and for the most part of that time I have been asleep! I'm not sure if it's because I'm ill or if it's just a come down from all the excitement and hard work of organising the wedding. I'm hoping it's the latter! Time will tell...

So what's next?! Back to reality now and sorting out everyday odd jobs. I'm looking forward to all my friends coming back from uni for the summer and have a few dogs booked in to groom :)

Finally...

My dad, his brother and their best friend are game designers in their spare time. They have just designed a new game and are fundraising to produce it. Take a look :) They are nearly at their goal amount! The video tells you about the game- also it's funny watching them trying to act ;)

http://www.kickstarter.com/projects/2061897488/promised-land-1250-587-bc-a-new-game-design

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2 days to go!

Just 2 days to go until my wedding! So excited :D And the best news (for me) is that my chest is sooo much better! This combo of steroids and Septrin (oral antibiotic) has made such a difference. I am hungry, coughing a lot less and can actually stay awake for more than 4 hours. The docs really got it right this time, and I'm so thankful.

All the wedding prep is done so it's been a week of pampering ourselves, which is lovely :) The weather looks to be typically English haha, but oh well. We are getting married in my family church that we've been going to for like 20 years, and it's the last wedding before it's knocked down (they have built a new church next to it). So our local paper wants to do an article on it! We've had our little interview, just need to send them photos from the day. Can't believe it- that will be another thing crossed off my bucket list :)

The only thing I'm gutted about our big day is that our little Barney Bear won't be able to make it :( He's just too hyper- only being 5 months old- so it would be more hassle than it's worth lol. But he's going to have an amazing day with some friends from the church, running around and playing all day!

What has taken me back the most is the kindness of people during this time in my life. Friends are making such an effort for our wedding- booking in hair appointments, spray tans, buying new outfits, buying confetti and little things. I know it might sound weird, but I just couldn't really believe that people are making such an effort for my wedding. Like most of my friends are students or working so hard to keep themselves afloat during these hard times, and the fact that they'd spend their earnings on things for my wedding, instead of things they might actually really need just touches me so much! Not to mention a patient from my mum's work (who I have never met) has made a cake for us! The kindness of people really does make me appreciate all my friends, family and even random patients!

So if you're coming to my wedding and this applies to you, thank you so much. I'm sure I will never forget my wedding day and I promise I will never forget the kindness and generosity of you all. See you Saturday, I love you!