CHRISTMAS TIME!

2 days to go! :D Love this time of the year!

Been elfing at the garden centre again this year, which has been great again. My sister, Abi, has been doing it too this year so it's been nice to occasionally work with her.

My friend with CF, Darren, couldn't work there this year though, as he has been too ill with chest infections, low energy and oxygen levels etc :( So, as I was up the hospital anyway yesterday for my annual review follow up appointment, I went to visit him in my elfing gear with a little gift. Was great to see him, just as chatty and cheeky as ever even though he's not 100% at the moment. Get well soon Darren!! xx

So, as I said, I was up the hosp yesterday for my follow up appointment. Overall, it was a brilliant review for me! The doc said my lung function hadn't changed much at all since last year, which is amazing news. It seems as though I'm coming out of the period where girls seem to decline a lot, and I'm now stabilising. All the blood tests were fine, as were my bone density scans.

I had been asked to do blood sugar monitoring for 2 weeks because my glucose test came back as I was borderline diabetic. However, the 2 weeks testings were fine, so the doc thinks that the original glucose test results were more worrying because I never usually have that much sugar and fizzy drink in one go in my normal diet and having it all in one might have just shocked my system a bit and my body couldn't deal with it all in one go.

We then spoke about the trials that are happening in the CF world. There are different gene types in CF, which just means different variations of it really. You get 1 from each parent. There is already a good drug for one of the gene types and they are currently trialling a new one for the gene type DF508. I have one copy of that gene type, but sadly for me you need to have 2 copies of it to eventually get that drug. However, the next trial should be one for people with different copies of genes, which means that I could get that one :) It won't be for probably another 5 years, but at least there is hope!

Anyway, about to do my final dog groom before Christmas :) Have a magical Christmas and a happy and healthy New Year! xoxoxo

Needing IVs

Last Weds the plan was to start home IVs as I wasn't feeling too good and wanted to have a boost before the Christmas elfing starts. So the usual routine was done: weight, lung function, sats etc etc and Barbara decided to try a different combination of IVs; Meropenum and Colomycen. I had only had Colomycen as a nebuliser not as an IV drug before, so a nurse sat with me when I was giving it to make sure I was ok. All was fine until about 5 mins after I'd finished and I felt my throat closing up. The nurse had left at this point so I rang the buzzer and ran out to the other ward where she was. It's so important yet so hard not to panic during these situations as it can make it so much worse. I found if I coughed it opened my throat up a bit and if I breathed through my nose it was less tight. The whole thing only lasted about 5 minutes but we all agreed I shouldn't be sent home on that medicine.

So went back the next day to start my usual IVs and they went through fine. Been on them about 5 days now and think I'm doing OK :)

I've also started a new supplement to try and put on more weight. There are lots of different flavours, which I am trying in a starter pack. So far I have tried Forest Fruits, and it was about 4/10. It's like a milk based supplement so it's a bit like Forest Fruits milkshake. Not my thing lol.

I heard back from the dietician about my annual review blood glucose test.. Wasn't great so I need to do blood sugar monitoring for a while to make sure I'm not diabetic.

Been to fireworks at my cousin's this weekend, an annual event at their house! Was lot of fun. Next is CHRISTMAS!!! :D

Annual Review

Last week I visited the hospital twice; once for an appointment, which turned out I didn't need, as I also had my annual review three days later.

An annual review is exactly how it sounds.. a review of your health which happens once a year. To prepare for it I can't eat, take any vitamins or drink anything other than water from 12 the night before. Then I go to the hospital for tests.

I have a blood glucose test, which is what the fasting is for. They do a blood test, then give me some lucozade to drink, then repeat the blood test 2 hours later to see how well my body deals with the sugar. It's to test whether I am diabetic or not. They say no news is good news, and I haven't heard back yet so I'm hoping I'm diabetes-free for another year! :D

Blood test room

They take about 13 bottles of blood in the day to test for different things. I also have an xray, bone density scan and a more thorough lung function test than they do at the regular appointments. I haven't seen my xray yet, but the bone density scan man said my bones look stronger than last year, but still a bit on the low side and the lung function came back pretty similar to last year, which is great news.

I get to see the physio, dietician, pharmacist and someone from the CF homecare team too, to talk through everything I'm doing at home.

All in all, it's quite a long and tiring day- especially when you haven't eaten! It seemed to go relatively smoothly though, thankfully.


Asides from that, I'm being a Halloween witch at the garden centre, before the elfing re-starts. It's been nice seeing the children all dressed up in their costumes with their faces painted. My good friend Emily has designed the Christmas grotto this year and during this week I've helped out with painting some of the scenery for it. All ready for Christmas :D

Making the most of being well

In my last blog I wrote about something exciting that I was about to do... Well I think I can say it now as my aunty has told pretty much all of the family now. I was asked if I'd like to go with my aunty to her baby scan- the one where you find out the sex of the baby. It was amazing! It's unbelievable how detailed the ultrasound is. You could see baby's individual toes, every bone in their spine, even their heart beating! And the most exciting part, finding out the sex. It's a.... GIRL!!!! I'm so happy, on that side of the family we haven't had a girl in 18 YEARS! Since my little sister. It's about time for a bit of pink ;) So a huge congratulations to my uncle Mark, aunty Lorraine and big brothers Jack and Toby xxx

Alex's nan and I went a bit crazy once we found out it was going to be a girl....

Mummy-to-be

This weekend it was my cousin's eldest's 3rd birthday. Little Krillin had a great party with his ride-on tractor and big bouncy castle slide thingy. So nice to see all the family too.

It's nearly October, and for me that only springs to mind one thing. Flu jab. I usually put it off as long as I can, but this year I felt super brave and asked for it as soon as possible just to get it out the way. Lots of people are entitled to it: children, the elderly, people with breathing problems and other illnesses, people who live with or care for anyone in those categories... It's totally worth having it as, yes you will probably still get a cold over winter, but you are much less likely to get the flu, which can be deadly! If you're not in those categories, you can also pay to have a flu jab at a lot of places such as boots. It only costs like £7 I think. Might be worth thinking about, or reminding people who are entitled :)

xo

Finishing IVs and my birthday!

It was my birthday last Tuesday and I had a lovely, relaxing day. I spent the morning with Alex and my pets, dog sat/slept during the afternoon and went to my parent's for dinner in the evening. I had such nice gifts from my friends and family, was truly spoilt! One of my gifts was a pink scooter, my plan is to ride this around instead of using my wheelchair when I'm ill. I just need to train Barney to pull me along ;)

On Thursday Alex and I went up to hospital to see if I could end my course of IVs. Everything had improved except my weight, which usually goes down when I'm on IVs as I struggle with nausea. My O2 levels went from 92% to 97% and lung function from 49% and 82% to 60% and 80-something (can't remember now).

So they let me off IVs, just in time for my party...

On the Friday I had my friends round for a party and then we went off to a club. I probably had a bit too much to drink..! Was hanging so bad on Saturday.

Now getting back into post-IV routine again. Eating super loads to get that weight back on, loads of physio and nebs to keep myself well and carrying on enjoying life! :D

I have something amazingly exciting to look forward to today... can't say anything yet though...

Until next time, much love
xxx

The last few days

So I managed to get an appointment for yesterday to check me over at the hospital. My friend Katie generously came with me. It can be a long process getting home IVs so it's nice to have some company! My O2 levels were quite low between 91% and 93%, which mirrored how I was feeling; so exhausted and breathless. My lung function had dropped from 61% and 92% to 49% and 82%; IVs are obviously needed. On the up side, my weight had improved and gone up to 48.4kg!

Katie having a blast at hosp ;)

I've started the course of home IVs and going to try and rest for the next few weeks- easier said then done! There's always something that crops up that needs dealing with haha. And it's always the way, the second I start to decline with my health I become booked up with dogs ;) But I just can't say no to hanging out with cuties like these two...

Humpfrey and Jeffrey the miniature wirehair dachshunds 

And poor old Harry, the English Bull Terrier that I dog sit, has been very poorly with his cancer lately. He's just had an operation to remove some of the tumors. He's doing well but it just breaks my heart when he's crying in pain :( After the weekend he shouldn't be in any more discomfort though, thankfully. 

Little Harry after his op

Onwards and upwards for both me and Hazza! xo

Summer

I've had a great summer! We've actually had a hot summer this year in England, which has made a pleasant change. I've just come home from a family holiday to France. Was so nice to get away for a bit and just be with my family. I laughed so much on that holiday! Thankfully my health held out for it too.

Now I'm back I've noticed I'm not so well: poor appetite, less energy, coughing more... the usual signs. So I emailed the hospital tonight to see if they can fit me in to start some home IVs this week. Hopefully I'll just need 2 or 3 weeks. My birthday is in a couple of weeks and I want to be feeling at least half decent for it :) I've got a weeks worth of TV recordings to keep me entertained while I rest, at least.

The house is going well Barney and the cats have happily settled in. Tomorrow Alex and I are going to do our ALS Ice Bucket challenges.

Hope you've all had a great summer!

xo

Catch up

Been a while since I posted anything! The last post was when I had just started home IVs. I ended up on them for 3 weeks and afterwards my lung function was in the 60's which was great. Since then Alex and I have been busy moving house, and I've been trying to put weight on again. The docs kept me on one sachet of the laxative a day and since then I haven't had any other problems with that thankfully!

So whilst I'm still ok health wise, we're getting on with sorting the house out and enjoying the heat wave! Alex had a really good 21st too :D

Me painting.. well posed for the photo then put down the brush ;)

Alex's 21st

Before going to an open air cinema

Me and Barney Bear on one of our first nights in the house

Lets get back to how I was!

So it's been just over a week since I came out of hospital following the worst admission of my life! I've been working hard with my physio and eating but I know I'm still no where near well. I've been sleeping so much. I wake up thinking when the next time I can go to bed is!

I went to the hospital on Thursday to start home IVs. I think the docs knew that the admission was a disaster, so they agreed for me do it myself at home. By some pure miracle I'd put on weight! I'm now 46.2kg from 45.6 when I left. Also, my lung function had only dropped 1% to 49%, which meant even though my physio hadn't made me any better, it had kept me stable thankfully :) My oxygen levels were the lowest they've ever been at 91%. Hopefully with the IVs all these things should improve again and I can re-start all the effort to get my weight back up. This should also be easier as I now start to wean myself off the laxatives :)

It's been a couple of days now since I started the home IVs. I think already I feel an improvement in my chest! Weight wise, probably not as I've been feeling very sick and throwing up a lot. If it carries on I'll ask for some anti-sickness tablets. Overall, things seem to be going in the right direction!

Other than health stuff, it's nearly Alex's 21st birthday so I'm busy planning his party with his mum and sorting out his gifts. Also seeing friends who have broken up from uni for the year- I'm seeing that new film The Fault in our Stars on Tuesday. I've heard that it's quite relatable for people with CF. Me and my friend Ashley will be taking a box of tissues ;)

I'm hoping in a few weeks time I can be back where I was about a month ago- feeling amazing and looking forward to summer! xo

I've escaped!

After 2 weeks and one day I'd had ENOUGH! Enough of the intense, constant heat; enough of loosing all the weight I'd struggled to put on; enough of waiting for answers from the doctors. Overall I have probably come out in worse health than I went in lol, BUT I have managed to shift the Serratia again, which was the reason for going in.

My weight has gone from 48.6kg down to 45kg, lung function from 57% and 91% down to 50% and 89%. My stomach blockage went after a week and then came back, but not so severely so I have gone home on weaker laxatives and can wean off them as I get healthier. I think the main causes of the blockage are the hot hot hot hospital room and lack of mobility. The doctors wanted me to stay in longer to try and get my lung function up but I just needed to get out of there. I needed FRESH air and a cooler environment and more than just a room and bathroom to walk around in. I honestly think that I will put on weight quicker and my lungs will get better if I'm at home getting back into a good routine. The doctors doubted that, so I have an appointment next week to see hoe I'm getting on- pressure much haha ;)

So now I am FREEEEE!!!! I've had a good old McDonalds, a great night's sleep, walked up and down the stairs a few times and walked my Barney Bear (well Alex pushed me in the chair but still!). I'm still quite weak and just taking things slowly until I've built up my strength and stamina again, but I'm loving it!!!

A spot of bother

If you have me on Facebook, you may have read my status yesterday about the pain I'd been getting. Basically this is what's happened...

Saturday night I was feeling a bit sick and bloated. I'd put the sickness down to the IVs I'm on. Then I started to get a bad stomach ache, which I thought might just be period pains. 2 hours later and then pain hadn't eased at all, just got worse. So the on-call doctor came to see me and prescribed some laxatives as he thought it could be trapped gas or something.

I only managed to get about 3 or 4 hours of sleep that night as I was in such agonising pain. I just couldn't get comfortable. In the morning Alex came up early and another doctor came to see me. I had an x-ray to see what was going on. Turned out my bowel was completely blocked and nothing was moving, leading to my stomach being overstretched with everything I'd eaten and drank the last day or so and being very swollen. I had about 6 laxative drinks and then got prepped for a CT scan.

As it was Sunday they didn't have any normal hospital transport so I had to get an ambulance to drive me literally to the next road. They won't let you just walk or get a wheelchair. But they gave me gas and air and it was so much fun! :D

All high from the gas and air haha

CT scan showed that the 6 laxative drinks were starting to take effect, which was a great sign. When I came back I had to have another sort of laxative. This time the poor nurse had to pour it in my actual bum! It was just a horrendous experience. Thankfully it worked and I don't think I'm going to need another one.

So a million laxatives inside me, the docs then decide to try and drain my stomach of the food, drink and any air that's in it. This was to try and make me more comfortable. They used an NG tube, which goes through my nose, down my throat and into my stomach. I'd never had one before so was nervous. I had to snort some gel which numbed my nose and throat and then once the nurses pushed the tube up I had to swallow loads of water so that it went into my stomach and not my lungs.

It went in and they attached a bag to collect anything that came out. The feeling of the tube at the back of my throat kept making me gag.

NG tube- ignore my face, I was exhausted lol

So Sunday night I had to wear a giant nappy, just incase I couldn't control myself or get to the toilet in time. I went to the loo loads, which was a good sign that everything was working. The NG tube wasn't really doing much though. The bag they attached was still empty so they took it out (YAY!)

The nappy- surprisingly comfy!

Today, Monday, I've just had another load of laxatives and an x-ray. I'm hoping that it all looks ok and that I'll be able to start eating again. I haven't eaten since Saturday night, starving!

So that's that! Pretty long ramble, but I know my family and some of my friends will want to know exactly what's happened, so now I don't have to explain it a hundred times ;)

Since being in hospital, I also started a Vlog- like a video blog/diary. It is on Youtube and I have been sharing it with my family each day. If you're interested in watching it, my channel is:

https://www.youtube.com/channel/UChpWXvHVa8rC5F1KlEuNy0Q

Feel free to subscribe :) I'm still kind of new to it all so bear with me haha :P I upload a new vid every day. It shows me living my life with CF, the highs and the lows; the complications and the enjoyment of doing things I want to do with my life. Hope you enjoy them.

Thank you to everyone who wished me well the last few days, it meant a lot and was lovely to read your comments! Lots of love, Jo xxx

Treatment

I'm in hospital following the plan that the doctor had last time he saw me. Luckily there wasn't too much of a wait and we can start kicking this Serratia in the butt again.

I'm on day 4 now of the Tiger IV (I finally know the actual name of it.. Tiggercyclin) and another one called Collomicyn. The Tiger IV is known to make people very sick but I thought I was avoiding it until today. It's suddenly come on my like a pile of bricks. It's more annoying then anything else to be honest; it doesn't actually make me throw up, it's just the constant feeling of it. Luckily the reflexologist at the hospital has shown me pressure points to press to make the sickness go away for a bit- it really works!

It's back.

I finished my IV course last Thursday and the CF team emailed me to see how I was feeling. I told them I was definitely feeling better, but still not 100%. I had an appointment on Monday, which would tell me if the IVs had done their job. Amazingly I had put on weight- I'm now at 48.1kg! Due to this they decided to skip the dietician with me as things are going in the right direction. My lung function was next, and that had improved too- 65% and 94%- the highest they've been in a long time, such good news.

So I was on a high until the doctor came in. He said that the horrible bug Serratia was found again in my lungs. I couldn't believe it, so devastating.

Then I thought back over how I had been feeling and acting over the last few weeks. I was silly to miss the signs really. I was back to sleeping most of the day and waking up feeling no more refreshed, my cough was no better and I'm not sure if this can be related to an infection, but my horrible horrible nightmares are back. Everything I had all of last year.

The doctors are going to discus what to do about it again. I hope they just tell me to go on Tiger IVs. They work. The only thing is that I have to go into hospital for them, they don't allow you to do these antibiotics at home. But it'll be worth it!

The thing that's made me so upset though is that this is a pretty good indicator that, like pseudomonas, this Serratia is probably going to stay in my lungs forever now. Another bug to constantly battle. I, personally, find Serratia worse though. It completely stops you doing anything and everything you want to do. All I can think about is closing my eyes and sleeping all day and all night. It's so frustrating, I just want to get on with my life! 

... Rant over..!

Everything happens for a reason, so just have to trust that everything will be ok. We'll see what news next week brings. Everything will be ok :)

xo

IV time

My course of oral antibiotics came to an end and I went back up to hospital with the hope of starting home IVs, as I wasn't really feeling any different. Thankfully my appetite is still pretty good, but I've been coughing a lot and slept through the majority of Easter!

So Barbara did my lung function again and the FEV1 had gone up a bit :D I'm now up to 58%. We still agreed that I should go on IVs though. So I'm on Tobramicyn and Meropenum for a couple of weeks now. I've worked out that I haven't had IVs for nearly 3 and a half months! That's the longest I'e gone without them for God knows how long, so happy :D

I'm going to rest more over the next few weeks so that the medicines can work to their full potential; but I will still keep up with going to the gym. I had my 6-week review thing the other day with one of the hot instructors ;) We did loads of workouts and my muscles are killing me right now- I can barely move haha. No pain, no gain though!

Needing a boost

At my last clinic app, I mentioned to the docs that I was starting to feel as if my chest was going downhill, so they said to come back in a week if there was no improvement following switching my nebulised antibiotics. I decided to go back and get some orals as I needed to go up to have my port flushed anyway. Good Lord did it take forever- 5 hours I was in there! It takes literally 10 mins to flush my port, but waiting to Barbara, one of the docs, just took soooooo long! I was so frustrated but eventually I came out with some oral meds for 2 weeks.

The meds I'm on instruct you can't take them with calcium, iron or zinc. I am literally addicted to milk lol and I just can't give it up, so I'm waking myself up in the middle of the night and very early in the morning to take them so I can still have my lovely milk haha. Corr the sacrifices you have you make 'ey ;)

Fingers crossed these orals will do the trick, much more likely now that I no longer have Serratia. If not then I'll probably end up on a course of IVs. So far I have been 3 months without them! So if I do need them, I won't feel disappointed in myself.

Finally, Easter is here :D Which means loads of birthdays, friends back from uni and the sun is out! Love this time of year when you know summer is just round the corner; fun fun fun! xo

So grateful!

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

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 :)

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

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

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!

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 ;)