My thoughts on a few things over the last few weeks

I just wanted to write a quick blog on some of the serious stuff I have skimmed over the last week or so. So I will start with Monday, 999 call. For me it was the most scariest thing I have ever been through. I don't wish to ever replay those moments but know with my lung disease it is most likely to happen again. My breathing felt awful all morning and had done for about a week, to the point where i felt unable to breath on my own. My lungs weren't expanding enough and all I felt like was I was suffocating and it wasn't peace full or painless. I felt like I was dying and It was not everything I was promised or imagined it to be. The worst of what happened was when me, my mum and my 2 carers were there and the ambulance was on its way. Something suddenly changed and I felt shere panic, I knew If something didn't change I was going to die. I didn't feel like me and everything felt all wrong. I couldn't keep breathing, I couldn't hold on, I could hear my mum screaming at me but I think suddenly I gave up fighting and that's when things became a little bit easier. The ambulamced arrived and we were stuck for ages on just how to get out the house, i couldn't come of bi pap as i couldn't breath on my own but I didn't have a portable one.

The next few days after that were talks of hows and ifs about the wedding, I know some hard conversations were had about me and I think alot of tears were spilt. Another little thing I have to clear up is yes I was extremely poorly but i wasn't resuscitated. This is also not possible for the future as I have a DNR (do not resuscitate) due to the severity of my condition now, if i was to be resuscitated I would be put on a ventilator and unable to come off it making transplant impossible and only prolonging my pain and suffering. I am still determined to get a transplant but I now I need these things implace as I feel I am walking such a fine line now.

So enough of that for now, I made it, I made it to my wedding. The day was truly amazing, I can't really describe how much it meant to me and seeing everyone there. My CF team literally did everything they could to get me there and make it as stress free and easy as possible. My little bridal team did everything for me including my mum and sister staying the night before the wedding in the hospital and having Chinese. Everyone was amazing. Mostly my husband, when I saw him i couldn't help thing how handsome he looked even though he was blubbing, I choose the best man for me ever. We spent alot of the day together, everyone says you don't get much time together on the wedding, but we did. Which im so glad about, as it was our wedding. Our day. The speeches really touched me, my Dad isn't the best at public speaking, he was so nervous, but his speech ment so much to me and i don't know whether it was just me but it was the clearest Iv ever heard him speak and what he said was important. My husband blubbed again, but did such an amazing speech, making everyone laugh as usual and his best man was also amazing. It was just the best day of my life. I wouldn't change a thing, all the little quirks are what made it unique and at the end of it all It was about our love.

Now, well I'm home, after a brief trip back to the hosp to make rest and get some more strength. I'm needing higher 02 now and waiting to get a portable bi-pap as I need it alot more now. I'm on a cocktail of stronger drugs, anxiety meds(to calm me and my breathing when your as ill as i am your body feels like its should be in a constant state of panic but that isn't very helpful), higher pain meds and if they don't do the trick im going back on the sub cut injection of meds. Its a little cannula that stays in your belly and slowly injected your meds over a slow period of time, via a mini pump.

I am on my honey moon now and I'm going to have a bloody good time.

Wedding

In the run up to the wedding I'm finding myself increasingly bizy, there is always little things to do and you soon run out of time, being a not so healthy bride, doing all the little things is really hard. I'm worried It will get to the day and Ill have forgotten something, let alone the worry that I will be really sick. Not only am I attempting to walk down the aisle but I have to come down the stairs of the balcony next to my room and then make it to the aisle. Its a fair distance. If I can't make it Iv decided my dad might just have to literally give me away by carrying me up the aisle first. Lol a sight to see. Iv been told all brides virtually run down the aisle and its far to fast and not in time with the music, at least I won't have that problem. I am going to pace pace pace and before I attempt all this I will be resting on my bi pap for all of the morning.

Also in the run up to the wedding ITV and Documentary team are filming me, ITV west country are keeping updated with my story as they have followed me from the beginning when I went to Harefield for my assessment and hopefully after when I get my transplant. Also the Documentary team are really keen to film all wedding related stuff. Needless to say this is very hectic and I do wonder how I'm coping in doing it all. But It gives me purpose and drive and I feel that's so important at the moment. I just hope it all pays off and people sign the organ donor register.

No wedding related stuff, my peg looks like it will be going ahead, no weight gain at 50.6kg and I just can't keep food down between all coughing. I'm really finding the thought of food most of the time almost repulsive as the feeling of anything in my stomach leaves me bloated and struggling to breath as it pushes my lungs up and squashes them, which also leads to me vomiting. I sometimes get a hunger on and when I do its really nice especially if i manage to not feel sick and bloated. A rare thing. Also in clinic my resting heart rate was 150, i felt very shaky and I get this alot. I hate feeling shaky. Otherwise all conversation was on wedding related things and how to keep me as rested as possible as there worried I'm going to run off adrenaline and burn out in the days after, something I'm pretty sure will happen. Oh and benefits, well that has got no where, more forms and frustration.

Oxygen, wedding, R.I.P

Today has been such an exhaustion. Iv had complete highs and extreme lows. This morning I didn't feel awful, the night had been horrible, waking feeling myself gasping for breath and just feeling like i wasn't getting enough air in. I  just had no energy by the time it came to morning and my IV treatment means I have a very small window of time to sleep and then its interrupted with IVs, at least Stu does them for me alot of the time because he realises just how little energy I have now days and wants to reserve it for the nice things. I didn't have the energy to stand in a shower but had to make myself presentable to go and view a wedding venue. I slowly got my self ready and we set off, my lungs weren't great. We looked around the wedding venue and It was perfect i felt so happy and now I'm just getting more and more excited. Me and Stu shared a kiss out by the lake and that sealed it, it was our wedding venue and my smile was from ear to ear. But on the low note, i realised when walking around this relatively small venue and just in between when standing there, my lungs were struggling beyond belief and i really wasn't having a good time. It took me ages to recover from the small wondering around and standing. It really made me feel sad, it worried me as to what id be like on the actual a wedding day.

We then made our way home, I was in a bit of a state with my breathing, things only felt like they were getting worse, we had some lunch at a cafe and i couldn't eat because i felt like i couldn't breath and felt really ill. We then got home and Stu ordered me to bed, feed my paracetamol, tramadol, anti sickness, anti itching (because the tramadol makes me itch like mad) I sat there and i cried, not the loud crying, but the sort where you just let the tears drop down your face, Stu was so worried about me bless him and doted on me every second. For those who know nothing about my fiance, I just have to say he is amazing, he cares for me so much and iv never felt so loved my anyone as i do with him apart from my mum and nan. There are many who wouldn't do the things he does just to help me and for that I'm truly gratefully. Anyway he then went on to insist that i cancelled my lesson that evening as i was lying there still out of breath. I reluctantly agreed. I then text my mum letting her know how i was feeling, i only usually text her if I'm really feeling abit tearful and know talking out loud will make the situation more real, like now and i was just feeling awful. I said i felt so out of breath and I need oxygen, I need it at home. I can't cope without it. My mum then rung the CF nurse who then rung me and agreed that if i my symptoms were worse out of hosp and I was continuing to decline then she would arrange oxygen, I feel so relived to be getting this finally. Iv felt like iv needed it along time, but felt stupid to ask and when i have asked in the past they have always said i didn't need it even though they hadn't done a oximitry test in ages. I guess i feel like such a hypocondriact asking for it, even tho I'm not and i clearly do.

The team have also decided to change my IVs again as there just not doing anything and iv started getting temperatures again to. They did say about bringing me back in but i said i just couldn't, i couldn't do it yet, I want to be home, no that's wrong I need to be. I need to be with my family. If i carry on getting worse over the weekend iv been told not to let it get awful and to ring the ward as there is a cf doc on and they don't want me getting really ill again especially as having the home oxygen as it will make me feel better so make me not see my symptoms and not recognise when I'm getting ill er until I'm really bad again. There wasn't any indication of when i would finish the IVs which i don't mind staying on them as long as they actually start working.

So tomorrow I'm off to the hospital to get all these things sorted.

My worries another thing I'm really worried about and may have mentioned, is that I'm going to carry on getting ill er over a very short space of time and that no IVs are going to work and that I'm going to be stuck in hospital. I'm just so worried about this.

Some more sad news a fellow CFer has died, I didn't know Lauren but read her blog and always wondered how she was doing as she had been so ill and hadn't blogged in ages. She was only 19. She looks so young and she was 19 is no age. She hadn't had the chance she deserved and i hate CF so deeply for taking Lauren. So please just take a minute for Lauren and send her your prays and hope she is breathing easy in heaven. I'm not a deeply religious person, but i do believe in god in some form and know that Lauren is now out of pain and suffering.

BREATH EASY