Happy New Year!

I hope everyone had a great Christmas and New Year! I certainly did, it sure made up for last year when I was really ill! I got spoilt rotten, a few presents I got were a Kindle, Lion King Tickets, new coat and a teapot! I don't even drink tea but really wanted a teapot! We also got enough money to purchase a tumble dryer, here is a photo of Alfie watching it. He is not sure about it at all but he'll get used to it as I keep telling him! I got Pete a bike, hence the picture of him on a bike!

 I just finished a course of IVs today, my lung function is up to 43% which is great! My weight is also 55.5kg, the highest in over a year! I'm booked in to have a constant glucose monitor in a few weeks as they still can't decide if I have diabetes yet as I am borderline. They want to decide whether to treat it or not. This monitor involves having a needle in my stomach attached to a monitor for 5 days and constantly monitors my blood sugar level, this way they can get a more in depth view of what is happening in my body.

My IVs this time were not great at the start, I felt so ill and have continued to feel extremley tired all the way through. Hopefully I will start to feel better once the drugs get out of my system. I've had some problems with the company that deliver all my IV equipment. First they send me some sterile hand wash but the pump part didn't fit in properly! The when they delivered my second week of antibiotics there weren't enough and then the day after I realised the ones I'd been using for the past 2 days had expired! So they had sent me drugs that expired before I'd finished the course! This resulted in lots of phone calls from them making out as if I was reading the label wrong or not using them in the correct order, then finally an apology from the chemist and yet another delivery to send me some more. Its not what you need really when you are trying to relax and not feeling well! Its over now anyway, I'm putting it down to some kind of post Christmas problem!

My New Years resolution is be a vegetarian! I already only eat poultry and fish and the occasional bacon sandwich but I've decided I'm just going to try eating fish only, I'm aware this is not a proper vegetarian but I have my weight and health to think about too and I'm such a fussy eater! This came about as I'm tired of feeling guilty about eating meat and hearing horror stories of how animals are treated plus my logic is I will eat more vegetables! So far I have failed twice and it's still January! On New Years day we went out for chinese and I could't resist as we had a set meal and there wouldn't have been much for me to have otherwise! The second time was last Saturday when we got takeaway chinese and I really wanted some chicken! So clearly chinese is my weakness and I'm going to be one of those vegetarians that lapses quite often!!

Nana

Started IVs yesterday, i'm on Tobramycin and Ceftaz like usual. My lung function is down to 37%, weight is 56.8kg, not sure if that's down/up, not really interested! Got a headache yesterday and woke up with one this morning which paracetamol doesn't seem to be shifting, hoping it will settle down, really can't face having headache for 2 weeks.
I'm taking ondansetron for sickness, certirizine to try prevent me getting sore, puffy eyes and i've also started a 5 day course of aciclovir to treat a coldsore that popped up to say hello on Tuesday morning.

The nurse came from calea this morning to do my tob levels, this is to check the levels of tobramycin in my blood after the first dose, as too much tobramycin can make you loose your hearing.

Found out today that my Nana was admitted to hospital last night, she is currently having chemotherapy as she has terminal lung cancer but her platelet count is very low (it should be 150 and I think my mum said it was 39) so she is having a transfusion. It's bad enough that we know her cancer is terminal and her treatment is to give her longer, but now she might not even be able to have anymore treatment so it's very worrying, my Mum said they will find out next week. So fingers crossed the news isn't bad next week as so far my Nana hasn't had good news and I think she deserves some.

My Nana, Mum and I when we went to London for my Hen Night

Happy Birthday Me!!!!

So it's my birthday, I think I am getting to the age where I shall decline to reveal my age...! Haha!

I didn't do much, we had takeaway curry for tea, exciting stuff in the Gleave household! I'm going out for a meal at the weekend with my friends then back to ours for drinks, so that should be fun.

I got some really great presents, Pete is going to buy me tickets to see two plays in London about Anne Boleyn and Henry VIII, wahoo! Can't wait! I also got loads of money, two pairs of jeans, some books, a top and some jewellery. My brothers are getting me this lamp I really want (evidence I am am getting old, you should have seen my brothers face when I said I wanted a lamp!!!!!), but it's out of stock at the moment!

Today I went to get my hair coloured and cut at the salon, here's a picture of me with foils in my hair doing my IV's! So sexy....!! Now I shall look all pretty for my birthday meal, yeay!

Calea delivered my next supply of IV's yesterday, I'd arranged for it to get delivered to my mum's house as I knew I wouldn't be in. But somehow the delivery guy ended up at our flat and I had calea on the phone to me saying my mum wasn't in. I rang my mum and she was like, I'm stood at the window and there is no one there! Anyway they must have figured out they had made a mistake and they got delivered to my mum's in the end. She said the delivery guy was annoyed and by the sounds of the answer phone message he left me I'd say I have to agree, it was very rude! It's not my fault Mr delivery man!! I don't seem to have much luck with Calea these days!

Cat Wee!

Started my IVs yesterday. I was supposed to be going on colomycin and aztreonam, however because so many patients have started IVs this month the drug company, Calea have run out of aztreonam. Seriously! So I had a choice of either going on meropenem which I hate as it makes me feel like I am dying or ceftazidime which I haven't had for at least five years as it gives me headaches. I went for the ceftaz, I am having 2g three times a day rather than 3g twice a day which is the usual dose they give. Hopefully I won't get headaches!

Calea decided that because they had run out of azteonam they wouldn't tell the hospital and just provide me with colomycin. So when they called and confirmed the order to me, I asked them where the aztreonam was! Anyway the hospital then couldn't order the ceftaz until the day after as there is a cut off time, so I had a delivery of everything minus the ceftaz yesterday and then had a delivery of ceftaz today. This meant when I started my IVs yesterday I had to have the ceftaz dose as a bolus injection (through a syringe manually). I also had to have my first two doses at the hospital because I haven't had it for such a long time, incase of any reactions. Therefore I had the joy of making a trip there at 9pm last night.

Also I'd like to point out that I had forgotten how much ceftaz stinks. Have you ever smelt cat wee? That is how ceftaz smells, it is rank. It makes your wee smell the same and also it seems to even make your sweat smell of it! When I was doing my first dose, I swear I could taste it in my mouth! So if any of you see me in the next 2 weeks and I smell, you will know why!

Today has been joyful so far, colomycin is affecting my balance and concentration, hopefully it will wear off after a few days. I'm finding it difficult to type and pick stuff up etc, I've cancelled going shopping with my mum as I don't fancy walking around in a floaty kind of way, plus I am feeling sorry for myself and that affects your energy, infact I can't be bothered to do anything. I might try to go the the gym later, will see how it goes...

Do Not Spit in the Sink..!

Well the start of my IVs has been abit of a farce! Calea who deliver everything didn't ring me yesterday to arrange delivery. No last time this happened they called me on the actual day of delivery and said 'we are delivering to your house in an hour' and I said 'well good luck with that because I am not in!'. So yesterday I assumed this may happen again. The nurse who comes out to take your blood for tobramycin levels rang me last night so I knew I was going on tobramycin but that was it!

So today arrived and still no word from calea so I called them and they had nothing on their files about receiving a prescription from the hospital. They said they would call the hospital and get back to me. After half an hour I rang the hospital to check something was been done, the nurse was apparently running around organising things because all the prescriptions that were supposed to be faxed to calea last Friday hadn't and I wasn't the only patient calling them.

So I went to start my IVs on the ward and had to have my tob through a pump syringe which is a first for me. Here is a picture of it,

It basically pushes the drug through really slowly over an hour. The meropenem is done by hand anyway and I get that supply from the ward so that wasn't a problem. They have given me some supplies to keep me going until tomorrow so I can have my meropenem. Tob is only once a day anyway so I have had my does for today now. Calea called me whilst I was at the hospital to confirm they were delivering my tobramycin and all the other equipment, saline, hepflush, sharps bins, syrienges etc tomorrow between 11am-1pm. Well that was no good as I setting off for the wedding at 11am! So they have rearranged to deliver for 10am, I am also having my tob levels done at 10am so I am going to be very rushed tomorrow morning!

For anyone that doesn't know, when you have tobramycin they have to take your blood about 16 hours later after your first dose and then again half way through IVs to make sure the does is not too strong or not damaging you. They can't take the blood out of your port as it would read the levels wrong, so they have to take it out of a vein in your hand/arm. I also had to have blood taken out of my hand today because my damn port wouldn't bleed back!

My weight is 55kg and my fev1 was lower than last time but I didn't bother asking what is was, I guess it's now in the 30% range. I also noticed my sats were only 94-95% which is abit lower than usual.

I noticed this sign at the sink which I found quite funny. Only on a cf ward would they need to put this above sinks! I said it should tell you to swallow it, the nurse said I was gross... haha