End of IVs

This two week course of IVs has been one of the most nicest (if that's possible) courses of IVs I've had in a long time. I have had few side effects and I actually feel like the IVs have worked for a change! I even went clothes shopping on Monday which I never do as it tires me out and makes me feel light headed, I got a new pair of jeans with my birthday gift voucher, a top (a Primark special for £4 haha!) and some birthday presents for my friends. I had to get size 8 jeans which was slightly strange as I don't think I have ever fitted into size 8 jeans, but the 10's were far too big and jeans always go baggy, all my size 10's I have are like that now and I'd like a pair that are actually tight on me, even my skinny jeans fresh from being washed hang off me at the moment.

The first week of my IVs I felt very tired and had afternoon naps, I also had a fair few headaches but this improved in the second week. I will definitely be asking for IV Aztreonam again as it's much more friendly than Ceftaz or Mero!

Today I ended my IVs and when it came to taking my needle out my needle was in my arm in a very awkward position, not how it entered my arm last week! I recall trying to reach something in my car the other day which involved twisting my arm around, never the best idea when there is a needle in the top of your arm. There was a popping sound and shot of pain through my port but it flushed fine so I didn't do anything about it, anyway this must have been when the needle repositioned. My arm looks in good condition, there are no sores, just flaky skin and it's slightly red, a massive improvement to how it used to react, so I think we have my allergies etc figured out now!

My weight is up to 54.1 kg which is good news and then I did my lung function test. The physio looked at the numbers and a big grin came on his face, he told me it was good and asked me what I thought it was. I guessed 46%, then he told me it was 50%!!!!!! I can't believe it, I nearly cried on the way home because I was so happy. I'm so relieved as I have being worried about my health over the past few months and doubts have crept in to my head about where it was going. I've wondered if Pete and I are doing the right thing trying to have a family when I have struggled especially with my weight as my weight is always stable so to lose this safety net was a big worry for me. I didn't discuss these feelings with anyone apart from Pete as I know people already have doubts about our plans, I feel like every time I have a rough patch people are judging how we will cope and I even judge myself and wonder if I am selfish.

Before and over Christmas when I was struggling to even bathe on my own or walk to the bathroom I decided to myself that if I didn't improve we would have to cancel our surrogacy plans, I really thought this could be the start of a totally different direction to the future I had planned. When you come out of the other side it's easy to think you were being dramatic and it was just a rough patch, but when it's actually happening you have no idea what the future holds. I'm not saying I thought I was dying, but I thought I might not regain my lung function and the damage could be permanent. So I am so happy that things are back on track and to get an fev1 of 50% is just amazing and illustrates how stable my health is overall.

Pete and I have booked a holiday to Italy! I am so excited! We are going to Sorrento for 10 days and I can't wait! It was quite difficult finding a suitable hotel within our price range as we needed something central as if I have to walk to and from the hotel it will just tire me and ruin the holiday especially since the area is very hilly and also I needed a room with a fridge for my medications. However we found somewhere eventually, I now need to have a flight test done and sort out some travel insurance. We are booked with Thompsons and they provide free oxygen on flights so if I do need oxygen it's not as big a problem and I have been quoted around £130 for insurance for Pete and I with a £350 excess. I was expecting it to be a lot higher due to my hospital stay so quite relieved I can still get covered for a reasonable'ish' price. I got this quote from Jd Travel , I've used them for years. However a few people with CF have recommended Insurance With so I'm going to give them a try as well.

Busy Few Weekends

Well I think a blog is overdue!

The filling went fine, I only needed one in the end and that needle they use to put your local in is tiny and hardly hurts! The most annoying part of the whole process was having a numb mouth for about 4 hours afterwards! The dentist left my chair up a little so I wasn't flat on my back as that would have made me cough, not good when she is in the middle of drilling in to your tooth.

I am back to normal now off the steroids, so no getting up at 5am or having enough energy to take over the world. It's a shame really, I did enjoy it whilst it lasted!

Three Saturdays ago we went to an engagement party at an Italian Restaurant which included a delicious buffet. The problem was that stupid moi forgot to take my nutrizym with me that I need to digest my food. Therefore I knew if I ate loads I would get a horrible, sore bloated belly and spend many smelly hours on the toilet the next day! So I ate some and then had to sit and watch everyone else stuff their faces with pizza and pasta, so unfair! It seems I drowned my sorrows by drinking too much and ended up going to this pub near where I live afterwards with my friend where I did lots of chair dancing. This is dancing whilst sat in a chair as you know if you do proper dancing you will get out of breath and cough loads which is very embarrassing.

The week after we had two of our friends from University come up from Cambridge and stay over. We all went for meal on the Saturday night with my brother and his girlfriend (who we also went to Uni with) then on the Sunday we went to Sheffield to meet with some other Uni friends. It was nice to catch up and see how everyone is doing.

On the Monday (last Monday) I was very tired and Tuesday morning hey presto I woke up with a cold which I still have. I went to Outpatients on Friday and my fev1 is still 41% so unchanged however my fvc has fallen, my weight is up a kg to 53.5kg and my sats were slightly low at 93%. They were ohhing and ahhing about if I should go on IVs, I said I felt I didn't need them yet so they flushed my port and took some blood to check my crp (infection) level and are supposed to be calling me today. I do feel rough (I hardly did anything last week, just stayed in and had lots of naps!) and I'm scared I will get ill again like before Christmas, so I think I am going to go on them, I'll see what they say when they call anyway.

Last Thursday was my Birthday! I got lots of money which I am saving to go on holiday, some clothes vouchers and some toms (shoes) from Pete. On Saturday we had a house party, lots of people didn't turn up because it just had to snow the day of my party, typical! Pete went to pick my brother up and got stuck at the bottom on a hill on his way there! I was seriously panicking nobody would turn up but thankfully they did and Pete managed to get out eventually and come back home! The theme was the 90's so it was all 90's music and I also did a 90's quiz, obviously fancy dress was a requirement too!

I said in my last blog I had a few busy weeks coming up and I did! I guess IVs was to be expected in a way so I'm not annoyed really, I think I was allowed to have a few fun weeks since I didn't really get to have fun over Christmas!