Tuesday, 19 May 2015

Frimley appointment

It's Tuesday! Therefore had my appointment at Frimley. I needed to be there for 9.30 so it was an early start. Usually mornings are better for me, but of course on this one particular morning I would feel like crap- sod's law!

I managed to get there though (first time driving myself) and the appointment was going swimmingly. Lung function had surprisingly gone up- might have only been by 1%, but up is UP! Weight had gone down to 46.something, but I'd expected that. So the doctor suggested oral Septrin for two weeks and Tria-something acid if needed. Tria-something acid (will find out the proper name) is to make your blood more sticky, so that if I were to bleed again I would take this for 3 days and it would help my blood to clot and hopefully prevent further bleeding.

Then I walked to pharmacy, waited for my meds and walked to my car. I was so happy, I got to go home to my Alex, Barney and my cats. As I was pulling out of my car parking space, I needed to cough. I had tissue and a plastic bag in the car, which I use if I'm driving. As soon as I started coughing I knew. It had happened again! I looked at the tissue and saw blood. I re-put the car into gear and parked again; got my things and hurried back to the CF unit. I told them that it had started again and the next thing I knew I was admitted. I was so upset! Purely because I thought I'd escaped admission and thought I'd be back in my own bed with my Alex cuddling me and my animals by my side. It was just a shock.

Whenever I get admitted I just worry about Alex and my animals. I'm not usually so sad about myself being in, I just wish I could be at home for my family. Alex and I are a team and if one of us isn't there or is unwell or feels down, the other doesn't function correctly. I wish I could be there to make his packed lunches and write him his little love note to go with it (soppy I know) or sit with him on the sofa, or the best part of the day- cuddling in bed and falling asleep with him. And my babies, especially my Barney bear; I know he changes when I'm not there. He isn't playful and he's always looking out the window for me to walk up to the door. Cats are more independent, I'm sure they notice I'm not around but I think they cope better than me, Alex and Barney put together hahaha!

So anyway, I've had my bloods done, an x-ray, my first dose of meds, lunch, dinner, my parent's and Abi have visited and now I'm getting ready for bedtime :) This place is lovely! Not saying that Brompton isn't, they are just two very different hospitals. Being in this room feels more like a hotel room if I'm honest. There is laminate flooring and a posh Dyson fan. The staff are also so caring, they can't do enough for you! When the team who were with me today were clocking off, they all came to say goodbye, which was so kind of them. Checking I was OK with everything and settled in.

 Dyson fan
Laminate flooring

... Was just about to end this post, and then this came in......!!!

The "snack trolley"! Full of crisps, chocolates and lollipops!

Might stay up an extra few mins to eat all this :D


Friday, 15 May 2015


I should have called the hospital earlier. I was trying to hold out till my next appointment but I should have just called up when I started to feel ill. I had had enough by last Monday so called to make an appointment, but the soonest one I could get was 8 days away. It's now Friday, just 4 days until I can go get some meds and it can't come soon enough.

I've tried to do as little as possible for the last week. Trying to save my energy and take it easy. It's so boring though! I like to be on the go and doing a million things. My chest is bad, no appetite and therefore no energy, going to bed at ridiculous times like 5:40pm and not waking up until gone 7am. I hate being ill so much!! 

Thursday was awful though. For me, I love sitting in the sun as it makes me feel better. The heat helps my arthritis and I feel like a reptile getting their energy from the sun lol. However, I cannot be around, what I call, "fake heat"- anything artificial such as electric fires, central heating, car heaters etc. They make my chest terrible and I will be ill for the whole day. Same goes for hot steam (only when my CF is bad), so like hot baths are a definite no no. This causes a different effect though; for some reason it makes my lungs bleed and I cough up blood. Total TMI but I can't pretend forever that it doesn't happen. 

So, as I was saying, Thursday... Weds had been such a lovely hot day and Thursday came with loads of rain and cooler temps. Alex needed to go out to collect his friend and I asked him to drop me to my parent's on the way back so I could spend the evening with them. On the journey, which took about an hour, we needed to have the car heaters on because the windscreen kept misting up. I was boiling and kept turning them off lol but Alex needed them on. I opened the window for as long as I could but was getting soaked on one side of me because of the rain. I didn't realise what affect the "fake heat" was going to have on my lungs at the time, but if I'd know, I'd have got out the car and walked home!! 

I got to my parent's house and went in and started chatting. I needed to cough really badly so went to the toilet, as I always do. I looked at the tissue and saw pure blood. It's scary when this happens but you just have to keep calm as a raised heart beat will just increase the amount of blood pumping into your lungs. When this usually happens, I will cough blood once or twice and then it will die down and I will be fine. This time, I had coughed about 6 times and just more and more pure blood was coming out. I screamed for my dad and he came running in and got me some more tissue. Trying to talk was so hard because I could feel my chest wanting to cough again and again, out of my control, to try and get the blood off my lungs. Dad tried to call Alex but his phone was engaged to I got up the number for Frimley Park and asked my dad to call them. I was scared at this point as I had never coughed up this much blood before and it just wouldn't stop. Every cough was just so much pure blood, it was horrific to see! I'm sure in my head it seemed like more blood than it actually was but I know this was at least 1/2 a pint to a pint that I was loosing. Frimley said for my dad to take me to A&E, to which I started panicking even more. It was frustrating but I felt like I'd lost control of everything and all I could think about was that at A&E they would want to take bloods or do something which involved a needle and I was freaking out. I tried Alex again and begged him to come now with EMLA cream. At this point Al had no idea what had been happening so he rushed over with what I needed. By this time, the bleeding had slowed down. I could breathe again and get my heart rate down. I sat down with my water and waited for Alex. It was such a relief when he got there; he makes everything better! 

I decided against going to A&E at this point. The bleeding had slowed, almost stopped and I felt I knew how to deal with this amount of blood. I had a restful rest of the evening and had another early night. 

Today I have tried to rest again. I needed a bath but didn't want to take any risks so had a quick lukewarm one with the door and window open so no steam could build up. It was fine, thankfully.
Now Im just counting the days till Frimley and I can finally get some meds. I know not to leave it this long in future, it's not worth the risk.

This weekend I have some fun things planned and I just hope that I can make them, I don't want to miss out. I have S Club 7 tickets for Sunday with my friends and brother and sister. It's obviously not something we can just rearrange so my plan is to sleep all of Sunday until about 4pm and then get ready and go, hoping that I will have enough energy for the evening. Luckily I have my wheelchair so I won't have to do much walking.

Will update after Frimley :)