It's back.

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

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

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

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

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

... Rant over..!

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

xo

IV time

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

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

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

Needing a boost

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

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

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

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

So grateful!

I had some great news at the hospital today; I've put on weight! I went from 45.6kg to 47.2kg in 6 weeks. I'm so happy it's unreal. I've been eating 5-6 meals a day and taking the supplement Calogen. At first it was hard to force down 6 meals a day, but now my stomach has stretched and I have a routine, I actually look forward to them... a bit ;) In a few more months I will repeat the measurements and photos I took of myself to see if I have gained any inches!

I have also been going to the gym for a month now. My friend Darmen is training me up; we do "arm day" and "leg day". It's all very blokey, but it's fun and I feel so good after. Of course, I'm only lifting like the baby-est weights and I still get out of breath and cough a lot, but I feel like it is doing my body good.

This showed in my lung function today too, my FEV1 had only dropped by 2% (now 59%)! I couldn't believe it; this is the second outpatients appointment in a row now where I haven't come home on IVs. I'm so so soooo grateful that Dr Bilton, the head doctor, decided to put me of those Tiger IVs, it was the best thing that has happened to me in terms of my health and given me my life back. I can actually go out with friends now, climb a flight of stairs unaided and walk most of the way round a supermarket. Lets just hope that the Serratia bug doesn't come back any time soon!

So now I can look forward to Easter, seeing friends and family back from uni. Quite a few birthdays coming up too, glad I will be able to make them this year! :D <3

Exercise

Exercise is important for everyone, as we all know. For people with CF it is beneficial in a few ways.

1. Weight gain- muscle weighs more than fat and it is harder to loose muscle than fat. By having a stable weight/not be under weight you have a better chance at fighting off infections as your body is stronger. If you do get ill and lose your appetite, your body won't loose as much weight if it is stored as muscle.

2. Circulation- People with CF often have cold hands and feet and have clubbed fingers. All this is due to poor circulation. By exercising you are getting your heart to pump more blood round your body, making your circulation better.

3. Physio- Doing exercise will make us cough, clearing our lungs :)

4. Arthritis- I have found that, personally, doing exercise helps my arthritis in my knees and ankles. Of course if you wake up in the morning in pain, you don't feel like getting out of bed let alone doing exercise! But once you've got started, I find that it eases the pain (maybe because somewhere else in my body is hurting haha).

There are probably other benefits for CFers from exercise, but these 4 are what I'm hoping for for me.

I used to be very active and do a lot of exercise. I did gymnastics, cheerleading and horseriding but stopped all of these in during my teens. At the same time my health declined... coincidence? I think not lol.

So now I'm looking into what exercise I can do. I want something that I am going to enjoy and not see as a chore. I went to my first pole dancing class last week; 2 of my friends already go so it was nice to know someone there. It was good because you didn't realise you were even exercising, it was really fun. The next few days though I was aching! Hadn't realised I'd even used my muscles so much. I found it super painful to do any physio as coughing uses stomach muscles- all of which were painful. I am also going into a gym on Saturday to find out membership prices and stuff. I will probably do one or the other as both will likely cost too much. But I'm excited to start exercising again!

Food wise, I have stocked up on double cream, nutella, cream eggs and anything else with high calories. I am waiting for my supplement Calogen to be put on my prescription.

I have taken measurements of my arms, legs, stomach etc and taken photos of what I look like now. In like 6 - 12 months I will repeat this and see if my hard work has paid off :)

Unexpected good news!

Since my rant the other week, I've been way more positive. I feel like I have accepted what is happening with my body now and I'm focused on trying to maintain what I already have.

Today I went to hospital for a check up and had some unexpected good news (no I'm not pregnant lol). For the first time in years my lung function has gone up after being discharged from hospital. Today was FEV1 62% and FVC 92%! I know the FEV1 has only gone up up by 3% but every little helps plus I am in the 60's, which is way better than being in the 50's!! My oxygen levels were 97% too, which is high for me :D

Also I was so surprised to hear that the new bug that I had, Serratia has gone! When I first got told I had it, back in 2012, the docs thought I would be stuck with it for life like with the pseudomonas. Thanks to those tiger IVs (never learnt the actual name lol) it has been defeated! Of course there is a big chance it will come back, but for now at least it has gone and it is reassuring to know that it CAN be eradicated from my lungs.

Now the PEG... I felt soooooo awful telling the doctor this seeing as I had been nagging on at them for years to let me have one... but ever since the chat with the surgeon I have been having second thoughts. Having the PEG is quite a big decision as it is there for life and I will permanently have a tube coming out of me. I know that it will probably be a necessity eventually, but I knew that if I didn't give all the supplements just one more go I'd regret it forever! So that's what I'm going to do, along with actually doing some proper exercise, I'm hoping I will put on weight and bulk up a bit lol.

xxx

There's got to be more to life than this...

This is probably going to be a negative post, but I don't even care, I need to vent! It's been 2 and half weeks and I have already plummeted back down to how I was pre-admission. I know I will try to go for a few more weeks without IVs, but it's going to be torturous weeks of pain, exhaustion and frustration. Then 2-4 weeks of IVs to get myself back up to the 50's percentage of lung function. So that's basically around 6 weeks of the pain etc for just 2 weeks of "healthy" living. It's just not fair! And during those 2 weeks, it's not as if it's like a holiday from CF, you still have to do the endless routines of physio, nebs, force-feeding, exercise, tablets etc. I just want a break.

When you're feeling this low, looking to the future seems gloomy too. Unless a cure, or miracle medicine is found, what does the future hold? Most likely, more frequent admissions, decline of lung function, less independence, transplant list, early death. As negative as it sounds, that's the realistic conclusion.

So obviously, I and anyone else I know with CF or any other kind of illness, try to live the life we've been given to the full. That in itself can be difficult. I want to do so much, but my body just doesn't agree with me. Alex and I would love to live independently again, but we have so much against us now it just doesn't seem to be happening for us. Landlords won't accept housing benefit because they think you are unreliable or can't be bothered to work or are a benefit fraud; they won't accept "caring for wife" as a good enough "excuse" as to why Alex isn't able to work a full time job- even though it would be more expensive for us if Alex were to work and I hired a private carer. Plus we have a dog, which we know if our own "fault", but when having a family is pretty much out of the equation, having a pet or two REALLY makes a difference and sort of soothes a woman's maternal ache.

My family, friends, husband and pets are what get me through these low moments. I would be nowhere without them all and I am so thankful to know everyone I know. I wish I still had the energy to be the person I was back when I was 15/16! I feel like I'm not "me" anymore. But somehow my friends and family still stick by me and keep me company even if all I want to do is sleep. They all have so much patience and time for me, they probably don't know how much it means to me. I love you all so much and I'm so grateful to have you in my life xxxxxxxxxxxxxx