Monday, 29 July 2013

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

Sunday, 14 July 2013

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.

Monday, 1 July 2013

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 :)