Christmas Miracle

I hope everyone had a Merry Christmas! I'm still in the middle of Christmas since we are going to see all Pete's family on Wednesday so I am not going to update on Christmas yet.

However I wanted to post a positive story, I just read the news and I am SO happy!

Jess is 20 years old and has been waiting for a lung transplant for 4 years, so since she was 16. (just think of all the teenage years she has missed out on). Her lung function is 9%, she was rushed to A&E before Christmas and spent Christmas in hospital, to be honest I think a lot of us thought she wasn't going to make it and finally lose her battle. Infact I said to Pete the other day I didn't think she had much time left.

I have just read that she has had her lung transplant this morning!!!! Please pray she gets through the first few days as they are going to be hard, she was very, very poorly for the operation and not out of danger yet. Also please spare a thought for the family and friends who have just lost a loved one and agreed to this organ donation, without them Jess would not have this extra chance of life.

Christmas miracles can happen!

Signing off for Christmas

This is going to be my last blog before Christmas, So I wish you all a very Merry Christmas and hope Santa stops by your house!

On Sunday Pete and I took Alfie for a walk in the snow whilst it was still coming down, there were people having a snowball fight in the middle of town and everywhere was just covered, it was so Christmassy! Alfie doesn't mind the snow as long as he has his coat on to keep him warm, he was jumping around in it and sniffing it. Pete and I wrapped up well, I even put a pair of tights on underneath my jeans, so we were nice and warm too.

We went to a Christmas carol service at the church on Sunday afternoon, it wasn't in the actual church but at the centre next door. The church gets extremely cold and in winter they only hold the big services in there. Not many people turned up, probably due to the snow and the pianist wasn't there either! You try singing songs you don't know with no music! She turned up just in time for the Christmas songs (we sang some advent songs first) and it was nice to sing some carols. We also had some mulled wine and cakes etc. Pete and I are planning to go the afternoon service on Christmas Eve, the main service is at 11pm but we will be at my nana's party then.

We finally have our wedding album so I have been lugging that around with me (it's very heavy!). I took it to the caroling service on Sunday to show my Nana, Aunty, Cousin and others, and then I took it with me to the hospital on Monday to show as all the staff as they keep asking me about it.

The news from my hospital visit is good! My fev1 is upto 43% so that's an 12% increase in about 3 weeks, my fvc was also up about 400mls which according to the physio mean my lungs can hold just over an extra cans worth of air, that's pretty impressive! My weight is also up to 54kgs although both the dietitian and I agreed this may all be poo because I am constipated.......!! I do think I have put some on though, well I hope, to get her off my back!

So my plan of action is to come off the skandishakes until my constipation is sorted and then go back on them and only take 2 nutrizym instead of 3 or 4. I have to take 3 movicols a day to get things shifting...! If it happens again she will try me on a different calorie shake.

I told the doctor and physio I am tired of my lung function dropping every time I come off the voriconazole and then going through the motions of going on IVs, them not helping then finally going on voriconazole, so it taking weeks before I feel better. The physio explained they have to try other things first that are less toxic as they have patients in their 40-50's who are now having problems from the toxic medications and she says they plan on treating me for many decades to come (which is nice to know!). I am staying on the voriconazole for 2 more months as long as I can cope with the side effects which I said I am willing to do. We looked the side effects up and apparently messing with blood sugars is one of the side effects, also there is dizziness and vision distortion. I then have to come off the voriconazole for a month and then go back on it for a month and keep that cycle to see if it keeps me stable. I wish they could just give the fungus' a good blast and get rid if them completely but I know they can't as the fungus' have taken over too much.

On Monday night, Pete and I got stuck at the bottom of a hill after trying to go visit my Nana who wasn't even in! To rub it in a golf VW drove up the hill no problems whilst we sat there waiting for my dad to come and rescue us. My dad drove the car and Pete pushed and got it up fine, so when we went back later we just parked at the top of the hill and walked down, it was not much fun walking back up but I lived...!

Eskimo Alfie!

Alfie and I went for a nice walk on Friday in the snow, Alfie got to wear his new waterproof, snuggley puffer jacket. Here he is modelling it before our walk

Here we are on the walk, the coat held up well! Alfie didnt get all wet and miserable, and we walked for about 20-25 minutes. Amazingly I hardly coughed, sometimes I think its gets so cold you daren't breathe in heavily enough to do a cough and once you start you can't stop so best to try not cough in the first place!

On Friday at about 4.30pm I attempted to drive around to the estate agents to drop a few things off, however couldn't get my car out of its spot due to the ice. So I had to walk to the estate agents (this walk DID involve alot of coughing even though it about a 10 minute walk in total), I was not impressed! I then called my brother and got him to take me in his car to find some grit. It took me forever to get a spade out of the shed, I was coughing everywhere and all the stupid boxes for the Christmas decorations fell on me because a certain husband of mine had not packed them in properly! Anyway in the end we got 3 buckets worth from a grit box and my brother kindly put 2 buckets worth on the ground so my car won't get stuck again. I have 1 bucket saved in my flat for future emergencies!

On Saturday night Pete and I went for a meal with the same brother and his girlfriend. I already know his girlfriend, we went to university together and they met at out wedding! Just call Pete and I cupid! It was weird at first because my brother is my little brother (he's 19) and my friend is the same age as me and it is always going to be weird your friend dating your brother... However I have gotten used to the idea now and we had a good time last night so alls good. We saw Avatar, what a fantastic film. You must go see it! Make sure you see it in 3D, it's just amazing!

Now onto the cf stuff.... yawn!

These skandishakes are messing with my system and by system I mean my digestion and toilet habits. I have constipation and are taking 2 movicols a day, theres abit of movement but not much. I have also been taking peppermint oil tablets as I think I had trapped wind, I kept getting spasms at the bottom of my chest and feeling bloated, it seems to have stopped but I am still taking them to make sure it doesn't return.

Now I thought I must be getting constipation because I wasn't taking enough enzymes with the skandishakes, so I started taking 4 instead of 3. But it seems to be getting worse and my mum said that she thought taking too many enzymes can dry out your bowls. So now I think I may have been taking too many. However I am not having anymore skandishakes until clinic tomorrow as I need to discuss this with my dietitian, I do not want to be feeling sick and bloated over Christmas!

I am also still getting the dizzy, light headed spells everyday and I can't find my blood sugar reader thing to see if its low blood sugars or the voriconazole causing it. I think it's the voriconazole as eating when I feel like this does not seem to help. However I have been having a skandishake every morning and its about lunchtime I tend to get this funny feeling, for about 2-3 hours. So it could be a sugary skandishake making my bloods go low a few hours later or my morning dose of voriconazole making me feel funny (which is a listed side effect).

Who knew so many problems could be caused by some high calorie shakes and a tablet?!

Festive Fun

Well Christmas is officially here, it's snowing!

I went on a Christmas night out last night, its the first time I've been out in quite awhile. I noticed that when i was dancing I was very aware of my heavy breathing to keep going, I didn't have to stop or anything but couldn't dance as energetic as I wanted to. It makes me sad to think that's how it will be from now on when I go out, however hopefully my lung function can get back up and I can dance the night away again! Here are a few pictures

The best part of my week? I finished all my Christmas shopping on Monday so I can lay back and enjoy!

The estate agents are pi$sing us off already. We have put an offer in for the bungalow and is has been accepted (yeay!), we have a 25% deposit so are ideal first time buyers. The estate agents told us we have to see their mortgage advisor so he can check we can actually get a mortgage for the amount we need. We went to see him last night and as soon as he found out that my income was solely benefits he turned all negative and less helpful, saying he'd look into it tomorrow and give us a ring, we were in and out of there in 15 minutes! It was quite clear what his attitude was. We already know that some banks will not accept benefits however we have already seen lloyds tsb who will include benefits and also an independent mortgage advisor who found loads of banks that will accept benefits. However according to the guy we saw last night, there are none that will accept and so only Pete's income can be considered which means we can't get the mortgage we require. Some mortgage advisor he is! Pete told him that was not true and we are going to take in the mortgage certificate lloyds tsb have given us and then go back to see the other mortgage advisor who was much more helpful hence why he has won an award!

Swine Flu Jab

Yesterday I had my swine flu jab. The cf nurse advised I shouldn't get it whilst I wasn't feeling well, so now I am feeling better I booked myself in (I received a letter from the GP about 6 weeks ago telling me it was available and I was in the group that needed it).
There were two things worried me slightly, first they get you to fill in this form asking you if you are allergic to eggs (no I'm not) and if you have any other allergies to which I ticked yes. The nurse didn't even look at the form when I gave it to her or question my allergies! Maybe she is just super fast at looking at them and psychic?
The second thing was that she was making the jabs up herself. The normal flu jab comes ready and they just take it out of the package and stab you. These GP nurses have asked me some real stupid questions like 'are you on any medication?', so it doesn't fill me with confidence when I see them making the jab up. I wonder why this one doesn't come ready made?
Anyway I had the jab. She told me my arm would get sore and she was right. It was OK for a few hours but today it is really sore, although to be fair the normal flu jab makes your arm sore anyway so it's not any different.
I know lots of people have been worried about the swine flu jab because of gossip and media hype so thought I'd just report I am still here and feel perfectly normal (apart from one sore arm).

On the CF Forum there has been discussion that if you are allergic to the antibiotic gentamicin, you should be having a different type of swine flu jab as the jab contains it. According to the guidelines the nurses should be asking you this. Mine didn't ask me but for all I know she could have looked at my notes (although I highly doubt it since she asked me if I was on any antibiotics). So if you are allergic to gentamicin best to mention this before you get your jab!

I Heart Christmas

Here are the things I love about Christmas!

• It's in winter, can you imagine winter without Christmas? Miserable, cold and everyone staying indoors.
• All the lights people put in their windows and gardens, it's so pretty and nice to see as you drive/walk around. I love seeing peoples Christmas trees through their windows, I hate the fact that our tree can't be seen by anyone (our living room goes onto our back garden)
• My Nana's Christmas Eve party! Every year it never fails, with the quiz been the highlight of the evening!
• Christmas Carols/Songs - I just love them, people at you door, seeing people sing them in the street or singing them at church (if I go!)
• Buying people Christmas presents - People seem to hate choosing what to get others, it takes some thinking but that's part of the challenge! I love looking at presents once bought, wrapped under the tree and look forward to people opening them!
• Christmas Films - I just love Elf and Miracle on 34th Street, talk about making you feel warm and happy inside!
• The M&S Advert - For most people it's the Coca Cola advert, for me its Marks and Spencers...!
• Great Christmas memories.
  The first is my mum sitting at the kitchen table with stuff everywhere, wrapping presents and writing cards with the Christmas music on! I do this now, infact I do alot of stuff my mum did to keep in the Christmas spirit!
  The second is my brothers and I spending all Christmas Eve writing and decorating our name tags. They were for our pillowcases for Santa to put our presents in. We spent ages decorating them, works of art! As we got older we advanced to using Microsoft word :o)
  The third is putting the carrot out for Rudolf. On Christmas morning we would look on the front door step and there would be a few bits of chewed up carrot left, Rudolf if a messy eater!

Me with Santa!

Jo's Send Off

On Friday it was Jo's funeral, I wish I could have gone but it was a long way and I couldn't have gone on my own. I said a prayer for her at 11am which was the time of the service. Her friends on the CF forum (including me) put our money together to help give her a good send off. Jo loved cake (she ate a whole Victoria sponge every day to put weight on) and she loved Betty Boop, so here is what we sent her..... She would have loved it! We also sent her some flowers. I really miss her and still can't believe she is not here anymore, it's going to take some getting used toIn other news I have been busy... getting filmed! I'm not going to say anything else as it's not getting aired until Easter time, but watch this space!

Today we have been to look at five bungalows, yes five bungalows! We have seen one we LOVE! So watch this space too!

I'm starting to feel better I think, still getting tired easily and chest is still getting pains but it is starting to feel less tight. I don't think I have lost anymore weight but not put any on either, just keeping it steady now. I keep feeling lightheaded and like I can't see properly which is strange, I think it must be the voriconazole as it can cause visual disturbances. It feels like I'm in a daydream and not in my body, not good at times! I've been to the gym twice this week and walked Alfie so at least I am getting back to the exercising, it always goes on halt when I'm on my IV's as I never have the energy to go.

I am currently watching X Factor, so far I have voted three times for Olly. I knew he'd be in the final! Olly to win!!!! This is the first time I have watched the x-factor final in years, every year I'm always out! Yet another sign I'm getting old....!

Alfie the Bully

Yesterday we tried to introduce Ruben and Alfie to one another. It was going well at first, they were sniffing each other and I thought we might actually be on to something. Then Alfie had to ruin it by trying to basically attack a poor puppy, Ruben then started barking back (a very cute bark) which set Alfie off even more and in about 30 seconds Ruben was Alfie's worst enemy. Alfie was making all these weird whining noises like he was really scared but he wanted to get close to Ruben at the same time, as long as Ruben doesn't look at him it seems everything is ok.... ok so how is that going to work exactly? Eventually my dad sat Ruben on his lap and I gave Alfie treats everytime he got abit closer to Ruben without barking, he got really close and was sniffing Ruben but as soon as Ruben looked at him he was growling again. Ruben was abit scared but overall he was pretty chilled out, I think all he wanted to do was play with Alfie! So that is round one over and done with. I think I am going to try walk them together, because then they will be concentrating on other things and not each other and will learn are not a threat to one another. Here's hoping anyway! Who knew that dogs could be such hard work?!

We took Pete's parents and my mum to look at the bungalow we like and have come to the conclusion it needs quite a few things doing to it and is definitely not worth the asking price. So I think we might put a much lower offer in and see what the owner says, it needs new windows etc which obviously would cost quite abit of money and once we start paying a mortgage we are not going to have much money left over for anything else. There were these two massive fluffy cats in the bedroom, I've never seen anything like them before! About three times the size of Alfie! If we move in there and they keep coming back (cats sometimes do that) Alfie is going to have to be careful!

I'm starting to feel better in myself but I can't say my chest is and neither my appetite. I've been told to try have two skandishakes a day but it's not happening, I'm having one for breakfast (since I don't seem to like cereal anymore) and the taste seems to linger in my mouth all day so the thought of having another makes me feel sick! Is it wrong that I actually like having a bit less weight on me? It's like I know it's wrong, however I have been brainwashed by society that it looks better. Apparently my bmi is just under 20 now and they like cf patients to have a bmi of 21-22, so it's not like I'm underweight or anything, it's just that they like cf patients to have abit of meat on them.

This voriconazole is definitely messing with my head or something, last night I woke up after having another weird dream which I can't remember and I was soaked in sweat. The bed was wet, my pillow was wet and all my hair was stuck to my face. We are using an electric blanket now its colder on a night so I turned that off but it's never made me sweat like that before! The night before last I had some freaky dream that I had a baby and was letting Pete's mum adopt it and then I broke into the hospital and stole the baby back! Weird!

Meeting Jo

Well now i am back on the voriconazole the dreams have started already, my days might be boring but nights are certainly livening up!

Last night I had a nice but also sad dream. I dreamt that Jo (my friend who passed away last week) was following me. Remember I have never met Jo so it's abit weird that I would dream about her been an actual person because I don't know how she moved, spoke etc. Anyway I kept seeing her in places that reminded me of her but no-one else could see her. For example Pete and I were watching car racing on TV (Jo liked watching F1 etc) and she was sat on our other sofa laughing at the TV and I asked Pete and he couldn't see her. She was wearing some blue soft jogger type pants, a green top and her face was all pink like she was really healthy. I don't think she said anything to me but she did smile at me. I also saw her when we were in a cake/coffee shop. We were at the till and she was sat down watching us and waved at me when I saw her. I just love dreaming about people you know you can never see again, I used to try dream about my cat Guinness when he died as I just wanted to remember how it felt to stroke him and hear his purr. I did once dream he was on my bed and I could feel his weight and warmth on my feet and I could hear him purring, but then I woke up and went to stroke him and obviously he wasn't there, I was gutted.
I'm writing about this dream because I want to remember it. I feel like I have met Jo now and I don't want to forget how it felt.

I did then go on to have some other crazy dreams that involved me living in a house full of water and slides and we were on some kind of big brother programme. I can't remember it that well but I do recall been interviewed at some point on some very high platform and been really scared as I could fall off!

Not Happy!

I finished my IVs today, I feel so free!!! No more having to get up just to do the morning dose, no more itchy port that drives me crazy! I can have a shower tomorrow, I can let water flow over me all and not have to worry about my stupid needle! You don't know how much I have been fantasizing over itching the damn port! I think it went manky because I cleaned it last week with a steret thingy and I think I might be allergic to them... It went downhill from there but since then it seems to have healed quite abit and gone all flaky which I enjoyed itching off this afternoon, you can't imagine the pleasure! Pete claims I was itching it in my sleep, I pretended to have no recollection of this, I did really...! hehe!

So my weight is now 53.3 kg and my lung function is fev1 31% fvc 44% so even lower! ARGHHHHHHHHH!!! I am so mad at my stupid body! Apparently my infection levels are not even high, my crp from my last bloods was 7 which is low! All this leads to the conclusion that this is not a bacterial problem but a fungal one. So hey presto I am back on voriconazole and have to go back on the 21st December to see how I am doing. I feel like I can't blow the air out of my lungs, its there but can't get out, like I'm blowing through a straw. The physio mentioned doing some extra lung function tests to look at things in more detail, I don't know if she mentioned it to the doctor. I feel like whatever I do isn't good enough for my stupid lungs, what do they want from me?! I try my hardest to do everything I need to do to stay well and it just doesn't help, sometimes I feel like giving up because nothing is good enough.

Pete and I have seen a bungalow we really like, we are having a second viewing on Sunday. Its a dormer bungalow with one bedroom downstairs and two upstairs. If we get our own place with a mortgage I am going to feel very grown up! We will see how it goes anyway, might not even be able to afford it!

I did my first lot of Christmas shopping on Monday, I can't last long, I think I managed about an hour and a half. I got a fair few bits, it's a start anyway!