So much to say......sorry for delay in blogging! pt1

Firstly let me appologise for not updating this blog sooner. As you will see, i've had quite a bit on my plate recently.

I'll start with my good old friend, health. Had an appointment at the Brompton a couple of weeks ago and it went pretty well (considering how bad things had been at the beginning of the year). My lung function has stablised at 25% and my weight is beginning to go down (thanks to the reduction in steroid dose, so beginning to drop off some of the 3 stone of water i'm carrying!!). However, I had a bit of a scare last weekend when I become very lethargic, ached from head to foot and felt permanently sick. Hubby confined me to bed and called out the doc, worried that I may have picked up swine flu but I hadn't (no temperature, which apparently is THE major sign). I was diagnosed with exhaustion and stress and to take it easy over the next few days with plenty of bed rest (and when you read the rest of this blog, you'll understand why i'm a bit stressy).

So what has been stressing me out and causing me sleepless nights? Builders, for want of a better word. Hubby and I decided that rather than move house, we'd extend. So first of all we had to prep the area so that the builders could start with the ground works. This involved demolishing our conservatory and moving our hot-tub and gazebo.

All of a sudden our house seems very small.

Anyway week 1 of 14 begins.....GROUNDWORK!!!

First thing the groundworkers have to do is reposition a (broken) groundwater drain. Only issue was that not only was the original drain never made properly (water was draining into my foundations!), the wrong sized pipe was used AND it was capped off with a drain shaft and manhole cover that you would usually find at an industial site or motorway, not a residential home. This picture of me standing on something called a "buscuit" is what was surrounding the manhole under the ground. The groundworkers and building regs men were all absolutely astonished.

Just after this photo was taken is when all the fun and games begun, but i'll blog about that in the next part.

Blog more later

xxx

Missing posts

Can anyone see my last post titled Naughty naughty?

Everytime I click on it just to check on the spelling and that it makes sense, I end up with a blank page. It is probably my laptop having a giddy but I just want to make sure thats all it is.

Thanks peoples and will do another proper update shortly.

xxx

Naughty Naughty!!!

I've nearly allowed June to pass me by without blogging. Naughty me. I do have many good reasons, for instance my house now looks like a bomb site thanks to the builders digging up my garden (am having an extension put on my house - pics to follow soon) and having an allergic reaction to suntan lotion which basically covered me in a chemical burn - Ouch.

Health wise (excluding the allergy), i've been a bit up and down (mainly due to the humidity and heat) but for the main part i've not been too bad. Although i'm still carrying a lot of water (thanks to my friend Mr. Steroid) my outsides seem to be either drying out or falling out - oooo eerrr!!! lol My hair seems to be coming out by the handful and my skin and lips are sooo dry they're about to be classified as a desert region, as no amount of moisturiser and blistex seems to be helping.

To top it all off, I thought i'd treat myself to a nice new camera to get pictures throughout the 14 weeks that its allegedly going to take to build my extension. BUT, (don't you sometimes hate it when those 3 letters form together) the charlatan I paid my money to never sent me the camera. Thank god I purchased it through Amazon but it is just so slow to get the money back. Fingers crossed that will come back in the next week and i'll try again.

I've going to a horticultural show on Sunday and am hopefully going to submit a few of my items into the competitions (a Victoria sponge cake, cheese and onion quiche and some flowers and veggies from my greenhouse and veggie patch) and on top of all of this i've got a hospital appointment next Tuesday up in London (I really hope this humid weather will have broken by then as i'm not sure how well i'll do trying to walk around in the middle of London as well as sitting in a hot un-air conditioned hospital) and will be chatting about lung transplants again and when I will be assessed.

Well although this is short and sweet for now, I promise to blog a bit more frequently and hopefully with some fab pics when I finally get my new camera.

Blog more

Vix xxx

PS. just wanted to say RIP Farrah Fawcett and Michael Jackson, both influences in my childhood in the 70's and 80's. Hope they are both at peace now.

Puffy, Tired and Whingey!!!

Over the last few days I think everything has definitely caught up with me. My brain is still as active as it has ever been and I forget (or at least try to) that my body can't keep up with it.

One minute I can't sleep and am awake at 3 am, the next i'm sleeping all day and all night (except for the obligatory midnight run to the loo...lol)

I thought once I dropped to 5 mg of the steroids my swollen, bloated mass that masquerades as my body, would start to go down. It's been 4 weeks now since being told not to drop any further and staying at 5mg and I can't really see any difference at all. I know I shouldn't really whinge as at least on the steroids I can kinda breathe ok and am relatively mobile (to an extent) but i've gone from a size 10 to a 14/16, i've developed the most horrendous stretch marks and the appetite the size of a man twice my size (which i'm having to be really careful with so as not to spread my bulk any further). The only real positive is that I know have the most enormous boobs....lol I've gone from a 34A to a 38B....which hubby doesn't mind so much....lol

I just think it's not the best start to married life for my wonderful hubby, although he keeps telling me that i've never looked so beautiful......think i'll book him into Specsavers...lol

Anyway, my step dad has now finished playing and having a whale of a time redesigning my greenhouse and building a bench to potter on and we now have tomatoes, sweetcorn, lettuce and strawberries growing as well as a few plants that need starting off before being put into my garden (will try and get some pics for my next blog).

My sister and 2 of her mother and baby friends turned up today to go for a "swim" with the babies in my hot tub which has totally knackered me out but my sister has persuaded me to go out with her tomorrow (think i'll need my wheelchair though) to do a bit of baby clothes shopping followed by an evening with one of the other mummy's who's holding a candle party. Well it's a night out and a glass of wine.....which I think after the last few weeks I may treat myself to as I don't drink that often.

Well i'm off to start my evening round of meds. Just want to also say well done and big congrats to Jo for getting through the assessment process and being approved to go on the transplant list for some new lungs. I'm so happy for you Jo, hope you don't have to wait long babe.

Blog more later

xxx

Bank Holiday Blow Up

Well as usual I over did things over the bank holiday and am now paying for it.

I first started with organising and preparing for my brothers 30th birthday. Making trifle, blamange and banoffee pie as well as organising everyone else to bring the usual sarnies, sausage rolls, pasta salad, mini sausages and lots of other party foods was a huge feat. By the time everyone turned up with their plates and it was all put out I was ready for my bed....lol

Anyway a good time was had by all and even managed to get a reasonably early night.

Just as well as hubby and I decided to empty our garage and other junk we've been storing at a boot fayre on Sunday. This meant early morning, so 6am the alarms went off and by the time we got to the boot fayre it was already 3/4 full! What time some of these people got to the fayre I don't know but they must be mad. Anyway, according to the fayre people it was the biggest fayre ever with the rest of the field filling up with stalls after we arrived. Considering we got rid of a load of stuff that we were originally just going to junk at the tip we made approx £150.......all going into the extension fund. To top it all off, come midday we were done so headed home for a well earned rest in front of the box watching Jensen Button storm to victory in my most favorite place on earth, Monaco. (If you ever get the chance to go, it's a must....just an amazing place).

Monday was a completely do nothing day. My body had blown up again (thank you steroids) from over doing things over the last few days. I now look liked a cross between the Michelin man and Jabba the Hutt, and I just felt permanently tired. I pretty much napped all day and then slept all night.

Today i've still been pretty wiped out. My sister however, phoned and begged me to help her and take her to Canterbury, so she can buy a baby mattress, as little Isabella is not so little anymore and has pretty much out-grown her moses basket. So after running around after her (in the purely metaphorical sense) i'm now totally zonked out.

I still haven't heard from the Brompton yet about my assessment chat. Might give them a call in the next day or so.

Well that's me all up to date......time for some more meds, then and then an early night.

xxx

Naughty Me!!!

Sorry for not blogging sooner but life has been utter madness for the last few weeks.

Between cooking cakes and making party food for my sisters party, granddads party, as well as for my hubby's party, clearing out the house (going to do a boot fair this weekend) in readiness for our extension build, which hopefully should start next month, getting poorly and getting more antibiotics to try to stabilise AND a visit to the Brompton to discuss the possibility of transplant, things just haven't stopped.

I made the most enormous chocolate fudge cake for my hubbys and since then have been taking orders from friends and family to make cakes for them...lol My mum has even entered me into the local horticultural show next month so i'm doing lots of practice runs, much to hubby's delight.

Am holding a party for my brothers 30th this weekend and as well as cake, am making bannoffee pie as it's his favorite. The things you do for families eh...lol

Anyway, went to the Brompton on Tuesday and my lung function had dropped a little bit (25% from 27%) but i've also dropped my steroids from 12.5mg to 5mg so they were happy. I've put on a little more weight but they think that i'd put on a lot more and have begun to loose it from the steroid reduction. They confirmed i'm probably suffering from sleep apnoea, but that should ease as I loose the weight.....fingers crossed. They also think that by staying and maintaining on the 5mg of steroids the breathlessness should ease and I should hopefully stabilise.

We discussed the options of transplant and they think now is the time to go for assessment. So as the Brompton does assessment in house, i'm waiting for my cf nurse Mille to phone me with a date to go up for the 1st part of the assessment which is a 2 hour chat and "presentation" from her. Then it's onto the 4 day assessment of tests, hopefully in the next 6-8 weeks.

With all this going on i've also got my in-laws coming to stay for a weekend next month and the start of our extension happening, so it's still all go.


Anyway, I will leave it there as i've gotta go and take a couple of nebs before bed....the joys of cf...lol

Night all xxx

A long over due catch up

Where do I start.....well the outcome from the bank issue was another 3 phone calls and a letter and still the issue hasn't been fully resolved. I've now received my payment and they've admitted fault however i'm still awaiting an answer based upon my complaint as to where my original sick note (with all of my personal info on) has disappeared to. I should hear by the end of the week but i'm not holding my breath.

Breathing wise i've been a little up and down, mainly due to catching my little niece's cold. It mainly stayed as a head cold but a little of it has gone to my chest but I seem to be fighting it off (although having a few breathless moments every now and then).

My mum flew back from a month in Cyprus on Sunday and sis and I took her out for lunch yesterday for a big girly catch up and to celebrate her birthday.

Hubby and I have sorted out our wills now that we are married. A bit of a strange experience I have to admit. They even ask how you want to be "disposed" of and who do you want your estate to go to if you both bite the bullet.....lol Very surreal.

Hubby and I also appeared on TV on Sunday. It was a program all about our wedding day and included interviews with our friends and family. Was really funny watching ourselves back and I only blubbed once towards the end when my mum was talking about our 1st dance...lol Here's the link if you want to watch (torture yourself...lol) online:

http://www.weddingtv.com/player/watch:MCw0NTEsMDA6NDg6MDA=

I'm now in planning mode as it's my sisters birthday in a few days time and she's having a BBQ and I said i'd bring some salads and bits and bobs. Then it's my Grandpa's 88th birthday so have said i'll make a cake for his birthday tea. Then it's my hubby's birthday and we're having a retro kid's party theme for it, so lots of jelly and ice-cream and pineapple on sticks and things...lol

Lots of birthdays and cooking ahead....health permitting.

Also now stepped down to 7mg of steroids so i'm hoping the water retention is on its way out and will get "my" body back.

well that's me for now. Will blog more soon

xxx

Lovely Easter....but then.....

......the ineptitude of reality comes crashing back.

I'll start with the nice bits first.

Thank you for all of your lovely comments about my wedding pics. Hubby and I are finding it really difficult to sift through all of the pictures and choose which 80 shots we want for our album.

Hubby had last week off of work so we decided to try and be productive. So we visited loads of kitchen places and decided on the kitchen we want (very modern high gloss black with walnut worktops), sorted out our pensions, wills and mortgage with our financial advisor, did a major clean out of our hot tub and ordered and received a new laptop (12 inch screen HP is all I can tell you as not that tech minded...lol) as my old laptop was burning through power cables like they were going out of fashion. So far so good.

Friday evening my sister invited us over for dinner, roast beef and all the trimmings which was yummy and we had a lovely evening being entertained by baby Isabella giggling and playing with her toys. En route home we nipped into Tesco and bought everything we needed as we were cooking Easter dinner for my sister and her husband Sunday and then holding a BBQ for friends and family on bank holiday Monday too.

Saturday saw hubby and I have our 1st lazy day of the week which was lovely but we ended up being invited out for dinner to our best man and bridesmaids house. Well as what they were cooking sounded far more appetising (a lovely pasta dish with chorizo and Parmesan) we headed 20 miles up the road for dinner.

Sunday saw my mum phone from Cyprus to wish us all Happy Easter and my Grandma from London call to make sure we were all eating ok since my mum was away (i'm sure she thinks we're all still 10 years old bless her....lol).

Hubby made the best roast chicken dinner again (thank you Mr. Ramsey) and I made the most scrummy chocolate torte (thank you James Martin....lol). We had a lovely family day with my sister her hubby and baby Isabella. We did the family thing of playing Trivial Pursuit and several hands of cards before it was time for them to head home to put baby to bed.

Monday was BBQ day and all I can say is yummmm. Even my brother put in an appearance which is a rarity but as usual not only were we left with all the washing up (to be expected) but were also left with tones of left over food and bad indigestion.....lol

As hubby was back to work Tuesday we decided on an early night (and after the last few days, really needed it). Unfortunately the foxes decided that they wanted to play/fight/kill each other, so screamed most of the night.

This kind of set the scene for things coming crashing back down to reality from all the fluffy niceness of the weekend.

I received a letter from Barclays today. The history behind this is that I have an insurance claim with them so they take over paying my loan payments (well I pay the installments then claim it back each month). I've been doing this for the last 2 years without much issue but last month they said the 6 month sick note i sent didn't say 6 month sick note on it (i didn't take a copy so couldn't prove otherwise but would be bloody weird for my GP not to put it on the note as he's been doing the same several times previously) so I had to go back down to my GP's get another 6 month note and re-submit.

This time I photocopied it.

Back to today's letter. I received it to say that they still can't process my claim as I only sent 1 side of my sick note and they need the other page???? Other page???? It's all on one page. 2 sided single page. I called them and said what the hell are they playing at and they tried to say that sick notes are several pages long. Since when? When I kindly pointed out that not only have all my sick notes looked the same as the one I submitted, I also photocopied it due to the issues over the last one, they then had to admit that some inept idiot in their scanning room had only scanned in one side of my sick note. Fine I said, go back and look at the original and scan the other side, so it's in your computer, and then process my claim. Can't! Why? They scan it in London and they are in London. So? They just can't do it. Why, have you lost my sick note with all of my personal information on it? Don't know?

So it's been left with me having to fax them a copy of my photocopy and a rather large complaint going in and waiting for a phone call to explain themselves.

If they have lost my personal information i'm going to chat to my solicitor because it could be potentially harmful (identity fraud to name but a few potential issues).

And breathe......lol Will let you know what happens once they phone to apologise and grovel

xxx

Wedding Photo's!!!!

After months and months of waiting (we got married 20th December last year) our photographer has given us a load of photos from our big day to sift through for our wedding ablum and also a picture CD with music of some of their favorites in a story book format (which is amazing).

Here are a few shots of our amazing day (I have permission before anyone says anything, as these are from the CD)

Hubby and I just have to sift through the other 642 shots to decide which 80 goes in our album....eekkkk!!!!

On top of all of this, our photographer has entered our pics into a "bride of the year comp", our videographer has entered our wedding video into his national videographers competition and he also contacted Wedding TV who came and interviewed us and what was originally going to be a three minute piece on the Wedding Breakfast show is now going to be a whole hour in a series called Happy Ever After that airs in a couple of weeks time. Double Eeeekkkkk!!! lol

Will Blog more later when I can get my head around all this post wedding excitement...lol

xxx

Domestic Goddess or Food Glorious Food!

I don't quite know what's come over me. Since taking Spriva and finding my breath again (as well as having a very health appetite thanks to the steroids i'm on) I seem to have turned into a domestic goddess (hubby's term not mine....lol).

We've been shopping this weekend, to get lots of kitchen gadgets (like a mandolin and griddle pan) as well as lots of staple ingredients like herbs and spices......gone are all the pre-made sauces. Everything is cooked from scratch so we know exactly what we are eating and able to reduce our salt and fat intake. I have to say I feel wonderful for it.

I have to confess, not all of my cooking is totally without "sin" for want of a better word. I made some gorgeous chocolate and hazelnut crackle cookies that were all chewy in the centre. Needless to say, they haven't lasted long....lol

I've made some gorgeous chutney with half of the lovely tomatoes that I got from the farm shop yesterday, the other half i've turned into a pomodoro sauce that can form a base to a lot of dishes and it freezes well too.

Hubby, thanks to Gordon Ramsey, made the most delicious roast chicken dinner today. It was so juicy and flavourful, it was the best chicken i've eaten in ages.....but guess who got left with the tidying up? Hurumph....lol!!!!!

Anyway, in case anyones interested, here is my pomodoro recipe. It is fantastic to make up a huge batch and freeze in portion sized bags so you can just pull out what you need when you need it. It's yummy as is with spaghetti or can add to cooked mince and chicken or even add chilli's to pep it up a bit. It's such a great base.

2 cloves of garlic peeled and crushed
50ml olive oil
1tsp oregano leaves
1kg good flavoured tomatoes, peeled and roughly chopped
Salt and freshly ground black pepper
1 tsp of fresh basil,

Gently heat the garlic and oregano in the olive oil for 3-4 minutes until soft, without colouring. Add the tomatoes, bring to the boil, season and simmer gently for 40 minutes. Add basil and simmer for further 1-2 minutes.

Well that's my foodie blog for the day....lol

xxx

PS. Congrats Jo (Miss Twig) on getting your date at the Harefield. You'll have to let me know how everything goes. Hopefully I won't be too far behind you. Good luck x

Be a Hero

Just a quick blog to forward on this flyer for you all to have a look at. A lovely lady called Holly Shaw is holding a donor day and any support will be more than welcomed.

Well done for all your efforts Holly, I hope the 7th is a roaring success.

xxx

Bad taste and can't sleep.

Ever had one of those days?

I woke up yesterday with the most foul taste in my mouth and no matter how many times I brushed my teeth and gargled mouthwash it still there.

I even deliberately ate strong tasting foods, onion, chillies, strong cheese.....still taste this yucky taste.

Think it may have something to to with my goof old "friend" Aspergillis (ABPA)

On top of that I went to bed at 10.30 pm just to be woken up by my arse of a neighbour slamming car doors as he heads of into wherever at 3 am. Aaarrrggghhhhh!!!!!

If I don't get a good night's sleep I usually have such a pants day healthwise and i've got so much to do today (am visiting my grandparents who haven't been that well, who live 70 miles away and muggins here is doing the driving)

Oh well, i'm gonna take the bad taste and me off to bed and hope I can get another hour of sleep or so before getting hubby ready for work.

Night night

xxx

Cowboy builders....aaarrrggghhhh!!!!

Why don't people take pride in their work anymore? I wouldn't dream of doing a shonky job or leaving a job half finished. Surely it takes more effort to do this than to do a good job in the first place.

Ok the reasons behind this little rant is that hubby and I are looking at putting an extension on our house. So we went and got planning permission which we got approval for and am now completing all of the paperwork to adhere to building regs and the waterboard regs.

The latter is what's causing the issue. We have a large manhole cover in our garden and is causing a bit of a problem. Regulations say that you cannot build over the top or within 1 metre or a drain (in case it collapses). This manhole is within 1 metre, so we are having it looked at to be able to arrange to move it.

Our builder (who takes pride in his work and a good builder) pulled up this manhole to find all amount of horrors. The original builders had put in this drain (to drain away rainwater) but none of it's connected! There is a pipe from next door draining straight into the ground and a gully that's supposed to connect 2 other pipes (as well as next doors pipe) that has a section missing so again draining straight into the ground.

The builder said if this was left unchecked the water would eat away at our foundations!!! Aarrrgghhhhhhh!!!!

He said that when they dig for the new foundations they will check on the existing ones to ensure there isn't any damage but he is amazed that this drain passed inspection.

What does this mean......more money of course....what else.

Blooming shoddy builders, I wonder what other horrors we have waiting for us doing this build?

And breathe.....lol

Lung Transplant - Thoughts!!!

Ok since Tuesday, when I was given my lung transplant file, i've been reading through it and coming up with loads of questions and reflecting on my thoughts of what it means to me.

It's strange because I don't feel that sick, but as my hubby tells me, i'm so used to being at this level of fitness and sickness (for want of a better word) that my life will be so radically different post transplant (tx), all going well, that I won't believe how sick I was.

I'm not really anxious at the thought of a transplant...yet, although when the call comes (false call or real) i'm sure i'll be extremely anxious and nervous. This is probably because i've had some time to come to terms that transplant would probably be an inevitable part of my future. My main concerns are more post tx.

I'm quite a control freak and although my body is not in perfect health i'm still in control of it. This idea of a machine breathing for me and waking up after the op still being tubed is a little concerning to me. I'm not great waking up after anesthetic at the best of times, usually fighting the anesthetic and being quite sick, but i'm sure the wonderful docs and nurses know what they're doing.

I'm also worried about all the potential stresses the anti-rejection drugs put on the body causing issues in their own right. Will my kidneys hold up to the task? Am I going to develop cancer after getting my life back? Let alone worrying about infection and rejection.

Then there's what you can and can't eat. It looks pretty similar to that of the diet of a pregnant lady BUT it's just so grey. High risk and low risk as opposed to yes you can eat this or no you can't makes things so confusing?

Then my thoughts go to the actual donor and their family. How do you write and thank them for the gift of life. It must be one of the most difficult letters to write and feel you've got write.

Then there's the anxieties of going home and getting your life back. I've ensured that my inhaler and more recently i-neb, has been stuck to me like glue (in my handbag or pocket) and has been for probably the last 20 odd years. I would be so odd to be able to go out and not need it at all. It's almost like a security blanket.

I've written down loads of questions for the docs, physios, psyc's and dietitians so hopefully they'll be able to answer them all.

So really I guess the 1st hurdle and anxiety is that of the assessment. I can't think of anything worse than pinning your hopes and future on a transplant to be told that due to something about your blood or disease it's a no go. I don't see that that's going to happen to me and am keeping positive but I guess we'll see.

Just some thoughts and i'm sure i'll blog more on this subject.

xxx

PS. Thanks for your lovely comments ladies. It's nice to be able to discuss positive outcomes and for others to share the experience. Stay healthy ladies x

What a difference a day makes!!!!

What a turn around i've have over the space of a week. My life has gone from one extreme to another.

At clinic the docs gave me 2 drugs (to add to the pharmacy of meds i'm already taking) with the hope that they will help until they can get me in for my inpatient stay. They gave me some omeprazole for my reflux (had this before I had my gall bladder removed and I used to sell it when I was a drugs rep so I know it's a bloody good drug) and a new inhaler called Spriva.

Well on Wednesday morning during my usual routine of project vix I take the Spriva and within hours i'm walking around and my breathlessness has all but gone!!! Only hours before I couldn't even walk to the loo without being out of breath.

Through the rest of the week I just felt better and better. I even managed to cook in the kitchen and not have to leave because I couldn't breath due to the humidity or because i'd done too much and got puffy and tired. This Spriva is amazing.

Anyway we had a lovely mothers day dinner which hubby cooked and my sister and her hubby and baby came along too. We had my homemade chicken liver pate to start which was scrummy (even if I do say so myself..lol) then roast pork with all the trimmings and trifle for dessert.

Needless to say we were all pretty stuffed after that and didn't eat for the rest of the day....lol

On Monday my mum and sister suggested going for a walk in town and as I was feeling so strong I said ok. I had the wheelchair in the back of the car so if needed we could always swing back and get it BUT I didn't need it.

I did get a little puffy and tired a couple of times but we'd just stop for a few mins for me to get my breath or stop for a coffee but it was nowhere near as bad as I had been. I really felt that I didn't need to go in for the inpatient appointment but Tuesday was supposed to be the day I go in so hopefully they'd see I was better and not keep me in for long.

Well Tuesday comes and i'm all packed up ready to go in and have gone into work with hubby (as his work is 1 hour closer to the hospital than our house and saves time travelling all the way back to collect me)

10 o'clock comes and no phone call from the bed manager to confirm me coming in. 10.30 comes, still no word (they've had a week to try and get me in and have spoken to the bed manager a couple of times and he thought there wouldn't be any problems). 10.45 comes and the bed manager calls. As I have to have a separate room there is an issue. Although there are not that many admissions all the patients that are in at the mo all need separate rooms so there isn't any room.

I'm kind of relieved as I don't feel unwell. I decide to chat to the doc about just popping up as an emergency outpatient so that she can see how well I am then maybe I wouldn't need the inpatient bed so problem solved.

She said ok so up to London we trundled again only this time I walked into clinic. Everyone instantly noticed this as I went to register and they were all surprised and pleased for me.

So through the rounds of dietitian, physio and docs we started. Now I am so swollen now from the steroids that I can't get on half of my shoes, I can't wear socks and it's not just my legs but my back, bum, tummy and face that seem to be carrying all this extra fluid. I got weighed (different scales again) but in the space of a week have gained another 3 kgs!!!! AAARRRGGGHHHHHH I'm vast. I'm now nearly 3 stone heavier than my normal weight. The dietitian puts in big letters on my notes "MUST GET FLUID OFF".

Thank god, as it is so difficult to walk with all this fluid and its disgusting that you can grip my legs and leave finger marks that last 10 mins...yuck!!!

Anyway next up physio and the good old spirometry. Now a couple of weeks ago my lung function Fev1 had dropped to 19% and last week had only gone up to 21% post cold. Surely the way i'm feeling now, since being on the Spiriva it should be better.

So deep breath in and blow and continue blowing until it feels like your eyes are going to pop out. I do this twice and the physio took the best blow and worked out my percentages.

I blew a 27!!!!!! 27%!!!!!!!! In the space of a week my lung function has gone up by 6%!!!! Wow.

Next up is the docs and my doc is amazed to see me walking around and is even more astonished by the spirometry results. She looks back over my spirometry over the years and this is the best it's been in over 3 years!!!!! She said that she's so impressed with the results this Spiriva has given me (and she only prescribed it as a bit of a last resort) that she's going to start using it more often. My infection levels based upon last weeks sputum was less 1, so I am the healthiest i've been in years.

The doc said she was so glad that I came into clinic as I really don't need to come in as an in patient at all. She was so surprised with my turnaround she got the CF nurse to come in and look at the results....lol

Anyway, she agreed that I need to drop down off of the steroids and has also given me some water pills to help me loose some of the fluid. She and the CF nurse also gave me a booklet on lung transplantation as although the Spiriva is reducing the breathlessness and helping me function, the damage is done and I don't want to get to a stage where i'm too sick to be able to survive a transplant.

So hubby and I leave the hospital very positive and quite bubbly as I don't need to come back now for 8 weeks!!!! I feel the best I have in years.

Now to get down to reading and filling in questions about lung transplant.

Hmmm think i'll blog more later about my thoughts on that subject.

xxx

Clinic, Meds, TV Crews and the Future

Well haven't I been a lazy thing not keeping my blog up to date. Since my last blog sooooo much has happened.

Our Wedding videographer (who has loads of national awards for his videos) has lots of contacts with a TV company/channel called Wedding TV and he asked if it would be ok to send our video to the company so that they may show it on TV......usually a 2 min slot on a program called Wedding breakfast. We said no problem and the next thing we knew, Wedding TV were on the phone asking whether we would take part in a series of 1 hour shows called Happy Ever After!!!

We said ok so Friday I went and got my hair done all ready for my TV debut on Saturday...lol

On Saturday the film crew arrived and they 1st interviewed my sister and brother-in-law about how they'd set me and hubby up. Then they interviewed hubby and me and took some arty shots of us next to the river in our back garden. They then took us out for lunch then came back to interview my mum, one of our ushers, little Richard and our close family friends Neil and Fran. It was a really long day and it pretty much wiped me out but as a thank you to all our friends and family for doing the interviews we cooked dinner for them and had a bit of a games evening. My uncle and aunt from London decided to pop down for the evening too so we had a real house full.

Sunday was a bit of a lazy day although we did pop out to get a bit of shopping. Yet again I was wheelchair bound. I just don't get it. The Septrin has made me just about as infection free as i've ever been yet I still can't breathe.

On Monday my mum and sister took me over to Canterbury and we had a great day shopping, my sister pushing her baby in her pram and my mum pushing hers in her wheelchair...lol I bought a few bits and bobs, mainly for the house but just enjoyed doing a bit of window shopping really.

Tuesday was D-Day or should that really be C-Day....CLINIC!!!

So up to the Brompton we went. Why do they keep those hospitals sooooo hot. Being wheeled in from a cool outdoors into sauna conditions is not helpful to the breathing impaired. By the time i'd got round to the reception (via the loo) I was struggling to breath. I didn't want to do a neb as I knew I was going to have to have a spirometry test so I was just trying to control it with breathing techniques. At this point my consultant walks passed and stops and chats for a while until she's happy with my breathing before heading off back on her rounds (wasn't seeing her but her Reg today).

So 1st up was dietitian. She's concerned with the reflux i'm suffering from and the amount of fluid i'm retaining on the steroids. My usual weight is pretty constant at 59-60kg however since being on steroids (5 months) I now weigh 73kg!!!! 13kg of fluid and you can see it. You can leave fingerprint marks at various places all over my body because of the fluid retention....it's so awful. She's so worried that I still need to eat properly as when I finally come off the steroids she's worried my weight will dip.

Anyway next up is physio and the dreaded spirometry. My last one 2 weeks ago had not been good FEV1 of 19% is not good but at least this time it had improved a little. 21% Not fantastic but better and my FVC was up too to 52% which is the best it's been in a long time. So some positives.

Finally the doc. She is still concerned that my airways are not responding to the steroids and wonders whether an in patient stay and some IV steroids and some theophylline would be the way to go as well as the beginnings to assess me for transplant. Oh great, i've only been out a few weeks. I manage to persuade her to let me stay out until after mothers day (as we're doing lunch for my mum this year) so she prescribed me some spiriva in the meantime (which is working really well and seem to be a lot better on it) and am going in next week for a bit of an over hall. Oh well, I guess anything that helps.

Well I gonna stop rambling on and will blog more soon (oh and i'll post the date of when we're gonna be on TV too when I find out)

xxx

Weeeeeeeeeeeeeeeeeee!!!!!!!!!!

Oh the joy of water pills...lol!!!!!

After yesterdays shenanigans, I felt completely wiped out and had a very lazy day. It was just as well as water pills act very quickly. I seemed to be peeing every 20 mins. To cheer myself up a bit I go and make myself some homemade broccoli and Stilton soup which was absolutely yummy (but phew that piece of Stilton was really ripe...lol) and settled back and watched the glories of daytime TV.

Thursday I felt a little better and my mum and sister came over and decided to take me out (although still needed the wheelchair) I was nice just to go out for a bit of window shopping and a hot choc at Costa's.

I was basically trying not to overdo things too much as Friday was going to be a really busy day and test the state of my health to the limit.

Woke up on Friday and felt really good. Had to get up early as was meeting up with my sister so we could take baby Isabella for her hip scan at 9am!!! Now trying to take meds (some 1 hour before food, some after food) three Neb's and do physio and be ready to walk out of the house by 8.15 to drive 30 mins to a hospital and hope they have parking for a 9 am appointment is no mean feat BUT we managed it and I walked too (no wheelchair).

After the scan (which went well, no issues) we then had to drive 20 miles across country to a beautiful manor house called Eastwell Manor so that my sister could (for the 1st time since having Isabella) go back to work for a couple of hours (she's a wedding make-up artist and a lovely lady was getting married there on that Friday).

So guess who was left holding the baby? Yep...eeekkkkkk!!!!! I'm probably the least baby person I know and was so worried that I wouldn't be able to cope (just getting tired and breathless from holding her) as well as never having changed a nappy, I called for reinforcements and my friend Fran came along to sit with us and have a coffee.

As it was, between the 2 of us, Isabella had a lovely time although I think we were both frazzled. We then headed off and grabbed some lunch at a Beefeater which actually wasn't bad and then headed home.

Oh boy didn't my lungs know they'd had a busy day. I now had blood in my sputum......great. Thought i'd better take things easy for the next few days.

The weekend saw hubby and I (after he finished working 1/2 day Saturday morning) lock ourselves away and have a lazy weekend. We basically locked out the world and totally relaxed. It was wonderful until Sunday lunchtime when hubby started to get snuffly and it just seemed to escalate throughout the day. By the time we went to bed he seemed to have a full on head cold.

Monday morning and after very little sleep thanks to hubby snoring like a roaring bear all night I have to get all my meds done early as have got to have a blood test and renal review by my GP due to the water pills. Mum comes over and helps me up to the local hospital as my GP's don't take bloods (and probably couldn't from me anyway) and I have to say the phlebotomist was fantastic. 1st time hit which is very unusual for me.

Bloods done, we head home and mum helps me tidy round the house before having to head out at 12.30 for the review with thr GP. The only problem was that MY GP wasn't in, so I was seeing not only the most grumpy GP in the surgery, but one who had no idea about me, my condition or anything and to boot kept saying to me that he'd just come back from holiday so knew nothing about a message that was left for him refering about why I had to be there.

GREAT!!!

Anyway, after explaining why I was there and getting weighed (and if all things being equal, scales wise, i've dropped 3 kgs on the water pills) he says to call in tomorrow for blood results and see where we go from there. Useless really.

We head home, finish tidying the upstairs bedrooms and mum heads home. Oh but guess what? Stressful day = blood in sputum. Hmmmm beginning to see a pattern.

Tuesday I spend pretty lazily, trying not to put too much pressure on my lungs and it seems to be paying off as for the 1st time in forever my sputum is clear!!!!! That Septrin is good. Mum pops by and helps me put out some recycling and she finishes moving some bits of furniture upstairs.

Wednesday saw hubbys head cold really come on. He woke up with the most annoying tickly cough. I said that he could work with that so he called in sick. We had a lazy morning and then mum popped round again and we headed out so we could go to the chemist and get him some cough mixture.

Taking advantage of the situation I suggested we head to our surveyors to see how things are progressing with our house extension plans (have planning permission, just sorting out building regs and water/sewer positions). It was quite a good meeting as we went from owing £669 for a survey to owing nothing as we got it sorted over the phone....result!!!!

Matt treated us to lunch and we then made our weary way home (dropping off mum) and spent the evening coughing and spluttering.

What a pair we are...lol

Blog more soon

xxx

Bad Lung Function

So, after sitting in a car for 3 hours, thanks to a huge, no reason, traffic jam at New Cross, we get to the Brompton hospital. I'm feeling so rough and we had to park such a way away that hubby digs out good old trusty (my wheelchair) and in to "Fort Sauna" we go. Why do they keep hospitals sooooo hot?

I check in and wait for the usual round of dietician, physio and then doc.

First up, dietician. I amble my way in and the dietician is clearly worried about me since i'd only seen her 2 weeks previous from when I was an inpatient. I say again that i'm concerned with how much weight i've been putting on since being on steroids especially as i'd been following (for the most part) her diet plan. As you may know steroids not only make you have the most enormous appetite they also make you retain water. Knowing this, i've pretty much cut out all chocolate and sweet things. I have 3 meals a day and no snacking in between YET in the space of 1 month i've gained 1 stone and since being put on steroids (last October) i've gained almost 2 stone. My body is so swollen it's disgusting.

She thinks that a lot of my issue is due to this water retention and puts a note in my file for the doctor that this needs to be addressed.

Next, on to the physio. By this time, i'm so hot, i'm really struggling to breath and I know she's gonna want me to do a spirometry (lung function) test. The problem is, since catching this cold, with all of the coughing i've been doing, I hurt. I can't take a deep breath in as it's too painful. I try, twice and although my total lung capacity is the same as before I got poorly (FVC 43%) my FEV1, which is the amout of air you can force out in 1 second was down to 19%!!! NOT GOOD.

We discussed that it was more than likely down due to the cold and the pain but will definitely need to be retested within the next few weeks to proove this.

We also discussed the potential for a "VEST" as use for my physio. This looks like a bullet proof vest that's attached to a compressor and (from what I understand) bubbles pressure around the vest and subsequently me to help move the yuck out of my chest. (Am awaiting delivery of it on a months trial to see if it is of any benefit to me.)

Finally onto the doc. She was concerned too with the amount of fluid retention I have and was amazed by the size of my legs and ankles. The only issue is that water pills can put a lot of pressure on the kidneys although they would help get rid of the fluid. She decided to give me a 10 course of water pills but I have to have a renal review and blood test on day 6 to see if it is ok to continue. She also gave me another antibiotic, Septrin, to try and help shift this new infection from catching this cold. It's only a short term antibiotic though, which i'm quite pleased about....don't really want anymore long term meds if I can help it.

We also discussed the big T (Transplant) think more highlighted from a lung function of 19%. To be honest, I've always known and done so much research into it I actually felt quite relaxed and matter of fact about discussing it. I think this is probably more because at the moment it's still at the discussion stage and not at the "time of an assessment" stage. Not sure how i'm gonna feel when it suddenly becomes real, if you know what I mean.

One piece of good news to come out of the consultation though was that I haven't grown a staph infection in over 3 years so the prophylaxis meds are working well and am now on minimum dose for those.

So not a really bad but not a great outcome. Have got to go back in 2 weeks for another blood test and spirometry and general review of health.

So we leave via blood test and pharmacy (who always take forever and we literally got back to the car as our 3 hour ticket ran out) and sat in traffic again for 3 hours to get home.

By the end of all of this driving, poor hubby had lost the will to cook and I was in no shape to be in the kitchen so to the rescue chinese food which hit the spot. Then early night to get over this busy day.

Blog more soon

xxx

Womens-Flu vs Mans-Flu

Now I know the term "women's-flu" is little know and rarely muttered, as usually we just either shrug it off or have a day in bed and then get back to the grind of daily life BUT this time I seem to have been hit for six by it.

Last Thursday and Friday, I never really left the house. My breathing was still all over the place and apart from a brief visit to mums, just to get out and get some fresh air, I pretty much hibernated away.

Friday evening the tell-tale signs of an itchy nose and sore throat began. My ears felt that blocked up, that everything sounded like it was coming to me via the bottom of a bucket. In a strange way i'm kind of relieved because maybe all this breathlessness has been due to this cold coming on over the last few days?

I decide to have an early night and see if I can sleep it off.

Saturday was, for want of a better word, ODD. I woke up and for the 1st time in ages felt fine! No headache, no grogginess, not tired, not puffy......pretty good really.

Hubby and I decide to capitalise on my good health and head out to our local farm shop to stock up on all sorts of yummy goodies as we were having friends round for dinner and my family around for lunch on Sunday. Well what a difference a good nights sleep makes. I managed to walk around the whole of the farm shop complex (it's really spread out) and not once felt out of breath. Wow things are on the up. So an hour later we fill the car with the goodies we'd purchased and headed home.

En route hubby remembers a few bits and bobs we'd forgotten and suggests swinging passed Tesco's to pick them up. He also suggests that I use my wheelchair to get around so as not to over do things and tire myself out and end up sick again. I try to argue with him that I feel fine and want to walk around but he's having none of it. After the last 4 weeks and all of a sudden everything is ok.....he's on protection mode.

So into Tesco's via my wheelchair we go and all of a sudden I begin to feel a bit rough again. Whether it has something to do with the stuffy air con in their or that I had overdone things or the pig ignorant woman who sneezed over me, I began to feel a little wheezy.

We didn't stay their too long and when we got outside I kinda felt a little better in the fresh air.

Anyway apart from the usual feeling puffy from stressing about getting dinner ready(I made chicken liver pate for starter and game casserole with Stilton and walnut dumplings for dinner) everything seem to be ok....phew!!!

A good evening was had by all.

Sunday was bad. I woke up with a pounding headache, ears ringing, sore throat, feeling pretty foggy in the head, coughing and sneezing every few minutes. Oh great, fantastic, a full blown cold. Just what I need 2 weeks after getting out of hospital. Oh and what a surprise....it seems to have gone straight to my chest....double trouble!!!!!

I'm sure there is some mystic conspiracy that throws everything at you at once to deal with.

Anyway, my hubby is an absolute star. He cooks us and our friends (who stayed over from last night......a lot of alcohol consumed, although not by me...lol) a scrummy full English breakfast which definitely helped me feel a little better.....well they say you have to feed a cold...lol

Our friends head off soon after, leaving hubby and I to get the house tidy and prep all the veg for lunch. As you can imagine, when full of cold, i'm not really that much help.

***Yuck warning - skip passed if have weak tum***
My sputum although improved in the sense of colour (no longer Aspergillus brown but a shade of indescribable green) has more that quadrupled in volume since Saturday and there's blood in it! The joys of CF lungs aarrrgghhhhh!!!!!

Anyway, I manage to sniff, splutter, cough and wince my way through the day and by early evening my lungs are beginning to feel like they're on fire from all the coughing.

Hubby is also beginning to feel under the weather.....great, whatever I have, i've now given to him....so he goes an makes us both some honey and lemon hot toddies and we head off for an early night to sleep it off.

Monday morning see's me wake up on the sofa. I had the most awful night. I just couldn't get comfortable and inbetween the coughing and spluttering, just couldn't sleep. I look at the clock and wonder where hubby is as he's usually milling around getting ready for work. I lazily shoot him a text to see if he's ok and he texts back saying he feels awful and is having a day off sick (very unusual for him...he never has sick days) I tell him to stay in bed and get as much sleep and rest as he can and i'll be up later to check on him but he was down a hour later as he was getting restless.

It was a this point that I noticed that my already steroid swollen body was even more swollen on the left side!! What is that all about? Another thing to tell the docs on Tuesday. Well, we pretty much had a PJ day. Again sputum volume was up for me, although at least the blood in it was old blood and if anything the undelying colour is getting better. The issue was more now one on pain. From all the coughing my ribs are sooooo painful.

BUT, and here's where things get really odd, at 5pm I felt ok and wondered how badly this cold/flu had affected me so I got on my exercise bike. I fully expected to be totally wiped out and breathless in about 2 minutes. Fifteen minutes, chatting all the way through and with no hint of puffiness i'm still cycling!!! What the hell is going on with my body? Another thing to add to the list of things to tell the docs on Tuesday.

So here we are, Tuesday morning and i've come to work with hubby so that we can shoot off up to the hospital when he finishes his half day. Sputum is now clear of all blood, I ache from head to foot, I'm as puffy as ever and have, as a precaution, packed an overnight bag in case they decide they're gonna keep me in to find out what on earths going on.

Will blog more once i've been through my long list of "what the hells" with my docs later

xxx

PS. Hubby is feeling a little better, just tired from being kept awake by my coughing...opps my bad...lol

A rough end....and beginning!

Sunday saw not only the usual PV activities but hubby's parents in a flap over me as my breathing had gone to pot. I couldn't even stand up to go to the loo without them fussing over what was I doing and where was I going.

It's lovely that they care so much but when you're feeling rough all you want to do is curl up on the sofa under a blanket and slob out. They were talking about staying an extra night just in case I end up going back into hospital on Monday and they would take me in.

Between hubby and me, we kindly persuaded them that all would be well and I promised that I would take things easy so they packed up their things and headed off to meet friends for lunch (en route to their home).

Nothing is pretty much all I did. Hubby wouldn't let me cook, clean or lift a finger around the house, so a just had to chill out and relax the best I could.

Monday morning saw me getting up with hubby as usual to see him off to work and start the usual PV bits and bobs. Mum phoned from her work at 8.30 am wanting to know if i'd called the Brompton yet...which I hadn't, so she then started going on about what I need to tell them and I was to call as soon as she hung up. Mother i'm 34 years old not 16, i've made phone calls before...lol

I left it until 9 am before I called and spoke to Millie my CF nurse who has a chat with my CF team and decide to put my steroids back up to 20mg!!! Oh great....now it's gonna take me even longer to get off of these "make me look fat and bloated permanently" pills BUT if they make me feel better I guess it's an ok trade off.

Millie tells me to take 20mg for 1 week then step down and to call on Wednesday to discuss my progress.

She also tells me that on the syrup prep of Itraconazole my levels are now good and the aspergillus should be getting under control. Then why am I feeling so rubbish when everything indicates it's all going well?

Anyway, I spend the rest of the morning getting washed, dressed and tidying the house which, by the end of this, i'm doing a very good impression of a fish out of water.

I call mum and ask if she can go and put in a prescription for me as i'm just too rough to go out and do it. 30 minutes later her and Bob arrive and chat about what Millie said and what I need from my GP's. They head off and I wait for the benefits that 20mgs of steroids are supposed to give.

Tuesday felt a bit better. Even managed to do a 1 hours cycle on the exercise bike....things are looking up.

Dee came over and we drive over to the Pottery cafe in Hythe to collect our pots. We've decided to finish them at home as it's too dusty for both me and Dee and the baby to do there. So I now have a large box filled with glazes, brushes, mixing pots, sponges, pencils, sanding paper AND 2 large pots sat in my dinning room waiting for a masterpiece to happen...lol

We pop by mum's to see if she is OK? Bob had left to go out to their holiday home in Cyprus for the next few months (mum couldn't go because of issues with her work, but is going out in a few weeks time for a month) and she was being Mrs mop cleaning the house.

After an afternoon of girly chat we all go our separate ways and everyone's feeling happier that I'm finding things a little easier.

Spoke too soon. Tuesday night was an absolute nightmare. Was in so much pain and real problems catching my breath. I called Millie again 1st thing Wednesday morning and she is concerned and wants me to come in to out patients ASAP. I really want hubby to be with me which means the earliest he can take me is next Tuesday. Millie agrees on the proviso that if I can cope or things get worse I call and come in sooner. I kinda feel a sense of relief that i'm going back to get things sorted but also scared that there is something else causing these issues.

I decide i'm not going to give into this and feel sorry for myself so I let mum and Dee both know that I would still like to come shoppping today BUT I may need to be pushed in my chair for some of it. They say no problem so off to Folkestone we go. I managed to walk around half of Asda before i'd had enough and went chair side.

We had to stop off at Starbucks (such a shame I know...lol) so Dee could feed Isabella. Gave me the excuse to treat myself to one of their scrummy hot chocs topped with whipped cream....well whilst on steroids...lol

The rest of the shopping trip involved a bit of spending in a couple of clothes shops, an absolutely amazing cook book from Waterstones and a new DS game called Prof Layton....something or other (which isn't a bad game actually). So an enjoyable afternoon was had by all.

Breathing wise I should be on top of the world with all the meds i'm on. In reality I'm pretty close to the bottom of it. I hope Tuesday will see some light (or at least breath) at the end of this tunnel.

Blog more soon

xxx

PS. Does anyone else have a link on their blog to the Organ donation people? I applied and they've sent me a link, but I can't get Blogger (add a gadget) to accept it. Any help or suggestions would be greatly received.

The In-Laws Descend!!!

Friday morning started with the usual PV (project Vix) shenanigans and then the house tidy-up begun. Well that was the theory. In practice, my physio was being less than successful at ridding my swollen steroid body of anything, I was getting breathless walking to the kitchen and my plans to tidy the house and make some cakes and honeycomb was fading fast.

I decide to plonk myself in a long hot shower in the hope that the steam will free things up and to an extent, it did. So I make a start on tidying the lounge and head to the kitchen and make chocolate brownies and honeycomb.

By the time the brownies have finished cooking, the kitchen is hot and steamy and I can't breathe. Aaaarrgghhhh!!!!!!

A swift phone call goes out to mum and Bob for help to finish tidying the house. 20 minutes later Mr. and Mrs mop arrive.

Bob heads straight for the kitchen and makes everything so shiny, mum heads upstairs with the hoover and I finish off emptying the bins and generally have a bit of a throw out.

90 minutes later the house looks immaculate and ready for the in-laws to descend for the weekend.

They arrive just after 3pm and hubby is not home until 7pm. What can I do to entertain them for 4 hours? So another phone call goes out to my sister. They had wanted to catch up with her since seeing her and baby Isabella at the wedding and Friday was really going to be the only opportunity for them to do it.

So off we all bundle into their car for the 9 mile journey to my sisters. We spent a couple of hours there over several cups of tea and hot choc and Isabella was in her element. The time whizzed passed so quickly that before we knew it, it was almost 6pm.

We said our goodbye's, headed home and decided en route that it would be easier all round to go out for dinner, as my breathing had been playing up all day.

So as hubby gets home from work, he has a quick change and we're off for to the best Indian restaurant. The food is not only delicious but plentiful. I had poppadoms with chutneys, a prawn puri, chicken tikka Kashmir and pilau rice. OMG I ate too much. I think the breathlessness as we get up to leave was more due to overeating than anything else.

At home I go through the last round of meds and physio before heading up to bed.

Saturday saw hubby having to go into work for a half day. His parents decide to go and hit the outlet store and I decide that as I've invited my mum and Bob over to have a big family dinner tonight, I'd better prep for it.

So after the usual PV stuff and still feeling breathy I make a start. Home made broccoli and Stilton soup takes no time at all, and chicken liver pate all done as the in-laws arrive back under bags of goodies.

By this time my breathing seems to have gone to pot. Hubby's mum insists I go and sit while she tidies the kitchen and makes a round of tea and hot choc.

Hubby arrives home and is a little worried that I'm crashing so soon after getting out of hospital. The problem is being a weekend, I can't really contact my CF team as they're not around. I take another nebuliser which kind of helps and insist that we're still going out as I'm not giving into this not breathing malarkey.

So we head out for some lunch at a lovely pub in a place called Bridge near Canterbury where I had the most scrummy ribs and chips (which I ended up sharing as there was so much). We then headed off to Faversham, to a brilliant farm shop that has amazing produce and ingredients and bought the entire cheese counter (well that's how it felt...lol) so we could serve cheese after dinner.

We head home and hubby and I dart for the kitchen to make a start on dinner. We decided that we'd serve the pate as a starter, fish pie for dinner and chocolate brownies for dessert followed by the cheese.

About 10 minutes into it I was getting breathless again so hubby gets me a chair and tells me to direct him around the kitchen with what to do. He is such a great cook anyway and it all worked out beautifully.

Mum and Bob arrive and a good night was had by all. The pate was a huge success and all went as did the fish pie. The only problem was that by the time we'd eaten all of that no-one felt that they could eat dessert but perhaps a little cheese. So the rest of the evening was divided up with wine, cheese, Wii bowling and good conversation.

Blog more soon

xxx

Another day another worry

Again, after a morning round of Project Vix, my sister arrived with baby Isabella. We had arranged to take Becky to Canterbury so that she could shop for new make-up and brushes following the whole make over bit yesterday. Only issue I'm breathless. I sit and get breathless, I walk to the loo, breathless. Hmmmm not good.

I put it down to the fact that it is a bit of a damp murky day (which tends to sit thickly on my chest) and it will lift if I just persevere.

So off we bundle to Canterbury and my breathlessness is not easing. There is no way i'm going to be able to walk around Canterbury, I can't even walk around the car! Wheelchair out.

I've only just started using the chair after my last bout of poor health. I'd been fighting not to use it for ages but was finding that I was missing out on doing things just because of my pride. I have to admit the chair had given me a new found freedom (to an extent).

As we arrive in Canterbury the bun fight to find a disabled parking space begins. Just when I think what luck as a car come reversing out of a space (so I put my indicators on to pull into it when they are clear) a Skoda, how had apparently reversed from the next line of cars over, drove over the paving separating the spaces and between a bin and lampost and pulled into the space. We all look in amazement at this idiot. He even drew a crowd who all stopped to stare at this rediculous 20 point move it took him to get into it. Some people!!!!

Anyway as we drove round the corner (where the skoda had come from) there was a space, so in we pulled.

We unloaded the car and with sister Dee pushing me and Becky pushing Isabella in her pram we were off.

Well i've never seen so many people walk around with their eyes closed. I must have been walked into and tripped over 10 times! I'm in a whacking great wheelchair how can they miss me??? Also have you ever noticed how UN-friendly a lot of the clothes shops are to wheelchair users? They put all these rails in artistic places and cram as much as they can in which is all ok if you can sidestep through the tiniest of gaps they leave. In a wheelchair or for the larger person forget it (otherwise you'll just take the clothes out...lol)

Rant over...lol back to Canterbury. After hitting about a dozen shops we nipped off for a coffee and to feed Isabella. The amount of people who stopped and chatted to us so that they could coo at Isabella. She is only 10 weeks old but she was born with long (for a baby anyway) blonde hair which is apparently very unusual.

As we finish all our shopping we head home and I head back into my round 2 of meds and physio.

Things feel a little easier breathingwise so I make a start on dinner beef stroganoff. A start is as far as I get. Can't breathe as it's just too hot and humid, so bless him hubby comes home after a horrific day at work and finished the cooking (even flambeed the beef - very pro...lol).

Decide to have an early night (in between the bouts of insomnia) and see if that helps.

Blog more soon

xxx

PS. Thank you for your lovely comments ladies, will definitely keep you updated and if there is anything you need help with Gemma for your wonderful day, please just ask.

x

Have to say it was absolutely delicious.

Make Overs and Fame's a Calling

Ok, so the usual round of Project Vix started the day - well kind of. I really had overdone it on Tuesday as I was bringing up quite bloody yuck during my physio session and was getting breathless again. So decided to take Wednesday a little easier.

Met up with my sister (who is a make-up artist when not being a new mum) and headed off to my mums to set to on Bobs daughter on a grand make over session.

Becky, is 14 going on 40 and is suffering from that puberty stage where your hair and skin just doesn't do what you want it to do. So between us and our friend Anita we sorted out a program of how to treat her skin, apply make-up and highlighted and cut her hair. The difference in her self confidence was probably the biggest change, which was lovely to see.

During the day I got a phonecall from our videographer asking whether he could forward our wedding dvd into a national competition and to Wedding TV as they may want to use it on a program called Wedding Breakfast (they show a 2 min overall of the day to give other brides ideas I guess). I said of course (he had mentioned it before and hubby and I had already discussed it) and thought nothing more of it.

Well 20 mins later, I get a phonecall from a lady called Nessa from Wedding TV. They're making a series of programs called Happy Ever After and want to do a 1 hour program based upon hubby and me!!! OMG!!!!!

So we now have a film crew coming round to spend a day with us in March, interviewing hubby and I as well as friends and family. Eeekkkk!!! Will keep you all updated as to when it will be screened on TV.

Anyway during the whole day, my breathlessness is being more and more evident. I'm a little worried as i've only been out of hospital a few days. Think I may just have overdone things a bit. Will take it easier on the exercise front.

As hubby gets home, he decides to celebrate our potential soon to be found fame (lol) and treats me to one of his culinary specials by cooking a wonderful steak dinner (mine with a stilton sauce - thank you steroids for the savoury cravings) It was the most delicious steak i've ever eaten. It cut like butter...yummmmm.

Hubby is a little concerned that i'm getting breathless doing simple tasks especially after only just coming off of a 2 week course of IV's and I have to admit, so am I.

Will blog more soon

xxx

Lights, Camera, Mussels!!!

Tuesday saw the now normal Project Vix kick start the day after seeing hubby off to work at 6.30 am. Only I think I perhaps set my exercise progam a little too high (especially as i've only been out of hospital 3 days). By the time I climbed down off of my exercise bike after a 1 hour cycle, not only did every muscle in my legs and bum hurt BUT my lungs felt like they were on fire.

I figured that sometimes a warming cup of hot choc will do it's trick of calming things down and if I sit and chill out for an hour, whilst watching dubious members of the human race (and I use that term loosely) on the Jeremy Kyle show things will be fine....well kind of anyway.

Half way through JK there was a knock on the door from our postie. Oooo presents? goodies? No better....Our wedding DVD!!! YAY

As JK finishes I shoot over to my sisters to pick her and baby Isabella up then head off to the fishmongers (wanted to cook hubby moules marinere tonight) and butchers to stock up our empty fridge and freezer (that and for some strange reason we appear to have invited a lot of people over for dinner throughout the week).

It is only when I have to park a distance from the fishmongers do I realise I might have done myself an injury. I couldn't walk 100 metres without stopping and getting my breath and on the way back, carrying a rather heavy bag, had to stop twice to catch my breath. Oooo dear not good.

As I clamber into the car and put the blowers on cool and full blast to help me get my breath, I get the lecture from my sister about overdoing it. I then have to listen to this lecture for the next 9 miles as we drive to collect my mum from work (Bob, her partner had to drive to Chichester to collect his daughter Becky who is staying with them during the half term, so had the car) who duly picks up from where my sister leaves off for the 10 min journey to drive her home.

Help I need to escape!!! Cue my wonderful hubby who is on a half day at work and is en route home. Thank you Lord!!! However mum now knows of the wedding DVD and Bob her partner heard the words moules marinere, so we now have guests for dinner and the 1st screening of our DVD.

My sister, Isabella and I leave my mums and collect hubby from home and drive my sister and Isabella to their baby massage course. Hubby and I then head off to the bank to continue the round of changing my name with the various organisations since getting married.

Next the dreaded Tesco's. By this time i'm really struggling to breath and my nebs don't seem to be touching it. Cue the fastest moving Tesco electric shopping trolly in the East. How I didn't kill myself, the staff and all the other customers in the store i've no idea...lol It was a lot of fun but at least we got all of our shopping including another kilo of muscles.

We get home and pretty much have to start straight away preping the mussels. Do any of you know how long it takes to check and clean up 2 kilos of mussels? Nearly 45 mins with icy cold water. By the end of this i've completely had enough and my breathlessness is getting worse (probably more now due to the stress) Aaarrrggghhhhh!!!!

Anyway hubby grabs me a chair an I sit and direct him with what to do (getting everything preped so as mum, Bob and Becky arrive, we can cook them off straight away). Well we didn't have to wait long as the doorbell rang 15 mins later.

The mussels were a roaring success....absolutely delicious. We the settled down to watch our wedding DVD.

I haven't laughed and cried so much. There were suprise interviews on it from my mum and bridesmaids, there were bloopers, there were things that I never even knew were going on and it was wonderful to see.

Come 10.30, mum, Bob and Becky make there way home and hubby helps me to bed.

Will blog more later (and see if I can put a clip of wedding DVD on too)

xxx

Family Dinners and Project Vix

Well Sunday was the first lie in hubby was to get in about 3 weeks. He didn't get much of one though......nothing to do with me be fore you all think so. He decided to invite my sister and her husband round for Sunday dinner last night BUT as yet, since coming out of hospital, we hadn't been shopping and had nothing in the house.

So whilst I did my Basil Faulty bit, tidying the house (as I just dumped everything when I got back) he nipped off up to Tesco to get in supplies.

Several phonecalls later (and me wishing i'd gone to Tesco as i'm sure I would have got more done that way...lol) he arrives back and we set to work getting a joint of roast pork into the oven to cook in time for a 1.30 dinner.

My sister, her husband and baby Isabella (8 weeks old) arrived at 1pm and as people with babies do, trashed the house with baby bits from car seats to play mats, change mat to bottles and that doesn't include toys, change bag, baby blanket and zoot suit. How is it that someone so small needs soooooo much stuff....lol She was an absolute darling though and it looks like she's beginning to teethe as she keeps munching on her fingers which is such a funny site.

Anyway, my hubbys roast pork dinner was absolutely yummy. If there is one thing my man can cook it's a roast and there are even left overs for pork sandwiches for tea too....yummmm!

The rest of Sunday was taken up (unfortunately) by rugby and football on the tv so I decided to work a bit more on Project Vix - AKA exercise to increase lung function.

So onto the exercise bike I clamber and begin to cycle.

When I went into hospital, the best I could to on the bike before having to stop was 1 1/2 mins....not good, now I was doing 10 mins straight off, only stopping as hubby couldn't find his phone charger (which was exactly where I told him it was, and where he looked, but could see it...hmmmm men lol).

Chilled out for the evening after doing another 40 mins on the bike and watched Dancing on Ice and Larkrise to Candleford. Had a bit of a chat with the girls on Twitter and then it was (after my last round of meds) off to bed.

Monday saw me getting up at 6.20 AM to get hubby off to work, get mince out of the freezer so at least we'd have something for dinner tonight and start my new job of project Vix for the day (meds, nebs, exercise and physio). Still being fairly new in fitting this all in, including finding the right time when to eat as some meds have to be taken before food, others after, I wasn't ready to face the world until 11am! Surely I can slim line this a bit.

Anyway, as project Vix finishes for the morning, I head over to see my sister and we head into town to have a bit of a mung around the shops.

We met up with my mum and Bob at Costa's where I was very naughty and had a hot choc with cream and chocolate stiring stick which was scrummy then headed off for a little retail therapy to find clothes to fit my bloated steroid body (have gained so much fluid retention from being on steroids that I can't even wear my wedding and engagment rings anymore.....well I wear them on a chain around my neck)

I ended up with 2 pairs of jeans, a pair of combat trousers and 2 t-shirts. Not exactly what I was looking for (looking for nice clothes to wear out in the evening) but they were all a good price and couldn't resist....lol

I run my sister home and then head home myself for the next round of Project Vix - meds, nebs, physio and exercise bike before making a start on a lasagne for dinner.

Phew - project Vix is turning into a bit of a full time occupation....lol Oh well needs must if i'm to increase my lung function.

Oh and the lasagne was gorgeous even if I do say so myself....lol

Chat more soon xxx

**UPDATE**

lol I hadn't noticed the typo Gemma. Mice lasagne doesn't sound that good does it...lol
Have corrected it now.

Love, Life and Home

I'm home - Yippee!!!!

Thanks to my lovely brother who did a bit of a detour (was driving to mums from Norfolk so went via Londons west end...lol) I walk through my front door by 3pm on Friday and it was wonderful. My mum and Bob (her partner) had been round and cleaned the house (hubby had been living as a bit of a bachelor for 2 weeks on takeaways and junk...lol) and my 2 cats were there to greet me. I just sat down on my sofa for a while and enjoyed being back in my own space.

My quiet enjoyment of being home didn't last long though, as the word had obviously gone out that i'd escaped and the phone never stopped ringing.

A few hours later my wonderful husband walked through the door. The look of love, relief and longing written all over his face. I think he missed me....lol He tried so hard not to appear down whilst I was in hospital but I knew he was and that he wasn't coping so well but i'm home now.

He said for me to grab my coat as we're going out for dinner (There was no food in the house as he'd not had time to go shopping AND whilst i'd been in hospital i'd been craving food from my favorite Italian restaurant).

I have to admit, after 2 weeks of hospital food (and the Brompton has some of the best hospital food i've tasted) my Italian meal was the best ever. I had Mushrooms in a gorgonzola sauce and veal with spinich in a 4 cheese sauce (guess who's been craving cheese...lol).

I love being back in my own bed too. I never sleep very well when not at home and although I still don't think i've fully caught up on all the sleepless nights I had whilst in hospital, i'm definitely getting there...lol

Anyway, Valentines day started with a lovely kiss from my husband follow by the most enormous valentines day card. I then noticed how cold the house was. Aaarrrggghhhhh!!!! The boilers had a giddy and not come on. No heat, no hot water and we need to leave the house in 2 hours.

Hubby goes and has words with the boiler, I go and put several layers of dressing gowns, socks, blankets around me and go down stairs to start "my routine" of pills, inhalers, nebs and physio.

Thanks very much to Moonpig, I also managed to arrange for a valentines day card for my hubby which he was totally taken aback by, which also seemed to calm him down afetr his argument with the boiler....lol

Anyway, come 9.15 and only 15 mins late, we left the house to go and pick up some friends to go to the Kent Ideal Homes Exhibition.

We were hoping that there would be lots of kitchen and bathroom people or building companies or companies that do solar or wind power that can be incorporated into a build but there wasn't really. There were 2 small kitchen companies and 1 company that did worktops, the rest were companies selling gadgets and face creams, saucepans and prints.

We had a good look around and somehow managed to spend a silly amount of money on kitchen gadgets and also bought some yummy parmigiano and parma ham and then headed off to get some lunch at a local pub.

We dropped off our friends and headed home so hubby could watch the rugby. As it finished we both ended up running around like headless chickens as we were running late for our Valentines dinner......that and as i'm on steroids at the moment, i'm retaining a lot of water so nothing seems to fit so clothing is an issue).

Anyway, thanks to my trust wrap around dress JUST fitting, we were off.

The restaurant has just been through a complete refurb and it now looks amazing. As we arrived we had a coats taken and shown to our table. I was then presented with a valentines teddy bear (which we've called Alan) at then offered cocktails. The food was out of this world. I had a crab and salmon ravioli in a crab bisque as a starter, hubby had venison carpaccio with figs and rocket. I then had fillet steak with Charlotte potatoes and hubby had calves liver and to finish I had this amazingly rich chocolate and cherries with Kirsch concoction, while hubby had the good old cheese board.

It was delicious.

Anyway going to leave it there as i'm about to head out an see my sister. Will blog again later Bye x

An end in sight!!!

Well it finally looks like i'm gonna escape the Big Brompton Hospital - TOMORROW!!!!! YAY

Don't get me wrong, they are absolutely amazing here (special shout out though to Charlotte the Physio, Good luck with dissertation, Steve the nurse, thanks for the chinese food and of course Dr. Gyi and Dr Bilton who are just lovely), but there's no place like home.

I managed to cycle, on and off for 1 1/2 on Wednesday and together with the higher dose of dnase helping me to shift the demon "YUCK", i'm hoping my lung function will begin to climb.

I've had another 2 sets of hunt the vein for bloods over the last 2 days. Yesterdays was to look at my infection rates and general bits and bobs and todays was to establish a post level for the Itraconazole I take to ensure that a) i'm absorbing enough of it and b) i'm not doing damage to my liver.

The big ward round finally made it round to me at 4.30 pm on Wednesday and it's been decided that my symptoms are similar to that of an asthmatic as well as my CF issues. So i've now been put on a drug called Singulair. This should stop my airways feeling like the close down when I exercise or when the cold air hits me. Will let you know how I get on with this.

Steve the nurse mentioned on Tuesday night that as it was the night shifts last night on Wednesday, they were gonna celebrate with a chinese and would I like to order some as well. Well after nearly 2 weeks of hospital food (although as hospital food goes this hospital is probably one of the best) there was no hesitation. So as 10 pm last night I tucked into sweet and sour chicken hong kong style and plain chow mein with beansprouts.....YUM!!!!

Again go little sleep last night (think i'm gonna sleep for a week when I get home) so had a pretty lazy morning today. Had it confirmed that I am going home tomorrow and even managed to get pharmacy to sort out all my meds ready for tomorrow so hopefully no waiting.

I now have an exercise and physio plan to help increase my fitness and hopfully lung function too and the dietician has also popped in some info on healthy eating for me.

So, i'm now on countdown with 3 sets of IV's to go until home time and the time is just dragging now....like it always does. My brother has kindly offered to collect me and drive me home as he's passing anyway, which is perfect. Everything just seems to be falling into place.

I want to thank 2 special ladies who have kept me sane whilst i'm been in the BBH by Twittering with me at all hours of the day and night.....THANK YOU Lampie and Sweetheart....will be back on Twitter later for a chat....lol

Well that's me for now, will chat more later

xxx

Breathe, Blow, Cycle and Shop!!

Day 11 in the Big Brompton Hospital and Vix is REALLY TIRED...lol

While some of the more mundane day to day goings on in hospital life are still.....going on, I have had, all to brief, experiences of the normal world coming to visit me.

On Saturday my wonderful husband came up to visit and we managed to get permission to escape from the ward for a few hours.....which was absolute bliss. He took me shopping in Harrods where we fought our way through the crowds to experience the decadence of the food halls (where I bought a lovely tiger prawn salad for my tea) and then to a yummy Italian restaurant for lunch. I've been craving Italian food since being in hospital So hubby treated me to the most delicious funghi grigliati al gorgonzola and a bruscheetta al pomodoro while hubby had calzone.

All too soon it was time to be back on the ward. Soon after getting back my wonderful hubby had to go (to beat the traffic about to spurt out from the football match down the road at Stamford Bridge) and drive the 90 miles back to our house.

Have to admit I did feel quite down after he left so I want to say thank you to all of you lovey YAYW and Twitter ladies who cheered me up no end.

Sundays rounds of med's, and gerneral chaos began along with a rather delicious cooked breakfast (in hospital...can you believe it) followed by a lovely visit from hubbys parents. They kindly travelled all the way up from Portsmouth to see me and bring me a few bits and bobs i'd forgotten. We had a good old natter and put the world to rights and before we knew it 3hours had passed and they had to go to get their train.

Thought i'd take this opportunity to get a little bit of extra sleep (still being kept awake by the nurses buzzers and a mother/carer (who is staying in the same room as her sick son) who thinks it's ok to talk really lound and laugh and cackle all night) Aaaaarrrrgggghhhhhh!!! So giving up on that idea I settled back to watch some TV to then be told that I'm going to have to pack everything up as i'm changing rooms!! Why? Well the ward is having a refurb and my rooms being done tomorrow. OK, so I start packing. 10 mins in, one of the nurses comes passed and asks what i'm doing (der, what does it look like...lol) only to be told that i'm NOT moving tonight as there are no privacy blinds on the room i'm moving into (it's been refurbed) so will have to move tomorrow once that's been done. Second Aaaarrrggghhhhhhh!!!! of the day. I basically tidy up everything i've pulled out, sit back and take the rest of Sunday easy.

Monday (still without a good nights sleep) and I've had doc's come round for a review, physio doing several breathing exercises as well as a O2 saturation test (I cycle and they see if you oxygen levels drop too much) the psychiatrist come round for a bit of a counselling session and the nurses, cleaners and food tech's doing what they do but I still haven't moved rooms. So come 4pm I decided to settle back and see if I can pinch a couple of hours sleep. Wrong!! My room is now ready for me to move into AND it's on the opposite side of the hospital. Great. So between me and the poor nurse who drew the short straw, we drag, carry and hoiked my things right around the hospital. En route I bumped into an old CF mate who I met on a previous in-mate stay (Hi Amy) and we had a good old natter and compared health whilst I unpacked.

Hoped with a new room would come new sleeping pattern...even a good night s sleep???

WRONG!!!!! I probably would have done if it wasn't for one thing. There is a really sick patient in the room opposite me and they have their family staying with them (day and night) to the extent that there is a sofa bed in permanent situ there which means they can't close their door. Down side, they enjoy their TV....a lot.....'til 3 am a lot and i've gotta be up a 6!!!

I'm not gonna drone on to much more as not a great deal happened today except for a new piece of kit physio has goven me to help clear the yuck from my chest. It's called a Pari Sole N and basically nebulises warm steam. I have to admit, I do feel better for it. So that together with more bloods, and spirometry has pretty much summed up my days. It's the big ward rounds tomorrow so am keeping everything crossed for an escape date of Friday.....I need my own bed, if nothing else...lol.

Anyway i'll stop waffling now, thanks for reading....if you still are...lol

Chat soon

xxx