life life life

Today I had a follow up appointment at Brompton with Barbara (the doctor I usually see when I go up for IV check ups) and a trial for a new thing called Tobi Podhaler. I was asked to go up for 1pm to see Barbs before my trial at 2.15. I expect to wait a while to be seen when I'm up there as there are lots of patients in the hospital. But this time was unusually long. I hadn't seen Barbara by the time my trial came round, so did that first. I currently take Tobi through a nebuliser, but this is a new invention that allows me to take the Tobi medication through an inhaler instead. The whole process is quicker, more convenient, needs less maintenance of equipment and doesn't involve a big nebuliser. Overall, many bonuses! The trial was to make sure I didn't have any reactions or that my airways didn't tighten once I'd had it. Thankfully I passed it and now have a much quicker way of taking that medication :D

So then I went to wait again for Barbara and the nurses kept bleeping her. By this time it was about 3.30. Finally at about ten to 4, a nurse informed me that Barbara wasn't even in! Goodness knows why it had taken them soooooooooooo long to find this out. I was a bit annoyed that I'd wasted so much of my day waiting for someone who was never going to turn up. The nurses told me though, that another doc would see me quickly as I'd been up there most the day lol.

I saw a nice doc called Callum and explained that my lung function has still not improved, neither have my symptoms and he went to ask the head doc of the hospital what we should do. A little later he came back to say that I should stop my current IVs as they are clearly not doing anything and I will be put on the non-urgent list to come into hosp for an admission for IVs and really good physio.

Pretty gutted to be honest that after 3 weeks of IVs plus oral tabs that my lung function hasn't budged even 1% :( I'm moving house in a couple of weeks, which will be stressful enough. Now I will probably be ill for it and then once I've moved in I'll be straight back out the door to stay at hosp for 2 weeks. But what can you do 'ey!?! That's life at the end of the day. Just hope I will have the energy and patience to get through it all :/

2 weeks into IVs

On Monday I went back up to Brompton for an appointment and to see if I should stop IVs, as the two week course had ended. The good news was that thanks to the steroids I was on, I'd put on 1kg! :D So currently around 45.5kg. Other than that, there had been literally no change to my lung function or sats :( So I'm trying another week of the same IVs. I think I probably need to change IVs really, but might do that next week if there is no improvement again.

Spoke to the dietician about having a PEG put in and I now know more about it. I'm also emailing a woman who has had a few PEGs, so she is telling me her experiences and answering all my questions :) She's been very helpful! The dietician thought it would be a very good idea to have a PEG put in to help me gain and maintain weight, and they are hoping to put one in before Christmas.

Next time I blog, will probably be when I'm 21! I'm getting so old lol x

I want a salad!

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

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

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

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

Annual review follow up appointment

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

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

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

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

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

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

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

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

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

Arthur on the left, Ethal on the right

Barney, Arthur and Ethal- happy families <3

Quick update

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

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

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

Catch up

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

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

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

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

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

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

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

Scared!

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

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

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

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

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

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

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

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