Tuesday, 31 March 2009

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

Sunday, 29 March 2009

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.


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

Friday, 27 March 2009

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.


Friday, 20 March 2009

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)


Thursday, 12 March 2009


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.


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


Thursday, 5 March 2009

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


Tuesday, 3 March 2009

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


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