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At the start of last week everything seemed to be going well, my crp went down to 20, my lung function went back up to 42%, my headaches had gone and I didn't need oxygen when exercising anymore. I can't remember if I mentioned this, but for the first few days my sats were dropping below 90% when I did exercise in the gym so I needed some extra oxygen. Ideally a persons sats should be over 95% but anything under 90% is not good.

However they decided to keep me in for the full 2 weeks to see if I could improve anymore, I was abit disappointed but agreed. By the end of the week I felt so ill again, my sats on the Friday were sitting at 89-90% when I was resting and they mentioned I might need extra oxygen, I was supposed to have 4 hourly observations to check this but it never happened. I needed oxygen when exercising again, my sputum was thick and dark, I was sweating again during the night and my lung function fell to 30%. My crp went up to 33 however my bacterial count was still going down which was good. I had an overnight oximeter as your sats tend to drop when you are asleep and since mine were low already they thought I might need overnight oxygen. My average sats overnight were about 89.6% so not low enough to need oxygen just borderline.

I was fully prepared to be told I would need to stay in or at least go on home IVs but to my surprise they said I could go home and return next Wednesday to be checked on. Apparently my Xray shows an improvement and they are please with my progress, I'm not sure how I feel about this. I told the Doctor I was concerned about my lung function and I am breathless just walking around, getting a shower etc but he was adamant I was to go home and see how I coped in my home environment. I had a walking test on Tuesday and my sats are dropping to 88% when I just walk, which is borderline again, so I have to have another one next week. They seem to think it's all viral and I will pick up once it has gone. I had a CT scan yesterday to look at my lungs in more detail and check there is nothing going on they don't know about.

So that's it, I have been shipped home and I feel like a bag of crap if I'm honest. I have nearly been sick twice already from coughing, I am getting out of breath just walking around the house and I'm so tired I just want to curl and disappear. On top of this its Christmas in 3 days and I still have shopping to do, a tree to put up and then obviously Christmas it's self is going to be exhausting.

My CF team said to call if I can't cope but what exactly are they going to do over Christmas? All my family were stressed when I was in hospital and I hate being in there. They are always bugging you and forgetting stuff or bring it like an hour after you ask, they ask you to pass them stuff and wake you up trying to put your IVs on. One night I woke up with a terrible headache pressed my buzzer, the nurse stood at the door shouting 'yes Gemma what do you want' (because I was in isolation they all had to put gloves and an apron on to come in my room so preferred to stand at the door and shout stuff to me and ask me to pass them stuff or take stuff from them.....lovely) and then when she brought my paracetamol she turned the light on! The food is horrible, I've lost 4kg whilst in there, a combination of a poor appetite and horrible food.

I'm so worried that this is it, I won't get my lung function back up, I'm terrified. I can't live like this, I really hope I feel better by next week.

25th Jan 2010 - Discussing the future

Monday 25th January 2010

I had the CT scan before Christmas, its really simple, you just lay on a bed and a circle thing goes up and down your body. It takes about 10 minutes, if that.

I Pete and saw the doctor today to discuss pregnancy. It didn't go very well. He basically said I have a low lung function and if I were his daughter he wouldn't want me to get pregnant, he said the risks are high and people have died. He suggested we look at adoption, I asked about surrogacy but he didn't know much about it. He suggested we talk about it and get back to him if we want to go ahead, he will support our decision, but his advise is it is not a good idea.

I can't really remember what else he said because obviously I was very upset and trying to concentrate on not crying rather than anything else. He told us not to feel downhearted, well that easy for him to say isn't it? He will have gone home and had tea with his family and totally have forgotten about us, left with the prospect of never having the family we both want. It's easy to dish out advice, but alot harder to deal with the advice given.

To rub salt in the wound, as we left the hospital there was a pregnant woman stood by the hospital entrance stood under a sign saying no smoking, doing exactly that. Life is seriously unfair, if I got pregnant I would never do anything that could harm my baby.

Pete and I are not sure about adoption. I've already researched it and it doesn't exactly look great for us. For a start I'm not exactly a great candidate, so we might not even get accepted. Then if you want a baby the waiting list is years long as not many baby's need adopting unless they have special needs. I don't think I could cope looking after a baby with special needs, call me selfish but I just don't think I could do it. Then there are issues such as, would our families accept an adopted child? Would we be OK with it having contact with its birth parents and siblings? Overall it's not a route I really want to go down. We want our own baby, one we can name, I want to see what our child would look like! I want to experience pregnancy and my family to be proud of me, would they be proud of me if I adopted a child?

I really don't know what to do. I think I'm kind of in denial and think everything will be OK if I get pregnant, which it could be. There are many people with my lung function that have had successful pregnancies, but then there are those that haven't.

The doctor made it quite clear he didn't think I would ever get my lung function up to 60% and also said he thinks I will need a lung transplant at some point, he suggested I could get pregnant after. That's ages away (hopefully)! And wouldn't that be swapping one set of problems for another?

Pete says he's rather have me than have a baby and lose me, he also says if I died and he was left with a baby he would not have a clue what to do. These are all 'ifs', should I give up the one thing I want because of 'ifs'?

The doctor said fitness is an important factor so I'm going to try go to the gym more to get fit and prove to Pete I won't be going anywhere if we have a baby