Friday, 26 August 2011

A Fantastic Holiday, some amazing news, a little sadness and then its back to reality!!!

So off i went to Turkey on my perfect holiday with my husband and friends.  We were met at the airport by Lionel, who is Steve's parents friend who over last three years have become a huge part of our holiday to Turkey.  We spent out first three days staying with Lionel and his now Wife Alberta.  Steve and I love every minute with them, they are so special to us and mean the world that each year they let us stay with them.  Lionel does a mean roast dinner and a fantastic breakfast.  Which reminds me i need to go by an egg poacher pan! Never had poached eggs in my life but wow i'm hooked, boiling or scrambling just don't come close.  I just hope i can make them like Lionel makes them.  Lionel and Alberta have the life i dream about, they built an amazing house, they just need to fill there pool, i'm so moving in! They lived in Turkey for last 6 years and still love it so much.  

We then moved down to Hizaronu, to the Monte Verda Villas which is the same place we stayed last year! Sarah n my first priority were Lilo's and the pool, so i can get cracking on my tan!  We had a wicked holiday, we have some really good friends out their, Beany (Ata), Bora and Erdam are such wicked people and we have such a laugh with them.

Me i had a very chilled and relaxing 7 days, life to me was just bliss floating around on my lilo without a care in the world, but i also had a massage, pedicure, hair treatment, eye lash extentions and then i had my hair coloured at my favourite salon ever Booty! I've been going for last 4 years for proper pamper session and this year was no different!

My lungs well at first they were misbehaving a little, then i got one step ahead of them, it seemed that between 1.30 and 2ish each day my lungs would go all bubbly, so i started doing my nebs n aqapella each day around that time, it was kinda a perfect timing cuz was the hottest point of the day, so i'd spend an hour chilling doing nebs n physio and a suduko! Wow i wish life was like this in the UK.

Now we're home, its just back to same old shit, my chest is been a little bit naughty, but i've started Intraconazole now, hope it works.  I'm just on 100mg a day for a week and if my liver still ok then i will increase the dose.  I've had to do my nebs everyday, today actually twice cuz seems like there is alot of crap down there.  But i'm plodding along, this bank holiday weekend i'll be working, i don't normally work weekends but i'm covering shifts, all good fun! So its so early night tonight.

So when i say i got some amazing news it was the my beautiful friend Sophie Gannon got some new lungs last Saturday, those of you who know her know she deteriorated very fast but was moved to Harefield who have kept her stable and finally 3 weeks later she got some new lungs.  She's doing amazingly well and i'm so proud of her strength.  It was so amazing to finally get the text from Pam, although i was sitting in the Booty Salon having my hair dyed surrounded by Turkish and Steve n Sarah weren't there.  By time Steve came to pick me up i nearly burst with excitement and nervousness.  Weird thing was i had woke that morning and said to them both that i had a got a feeling Sophie was getting Lungs today.  We were two hours ahead in Turkey so must of been a sixth sense, very weird but made my day.  I got a text from Pam on the way to airport telling me she had made it through the op and was stable.  So everything was all good.

I've never met soph, but a few years a go i started talking to two amazing girls on Facebook, Soph and Anna.  Anna unfortunately after a very tough 18 months passed away, and i miss her so much, one day whilst she was in hospital we were all chatting on Facebook saying we were the 3 musketeers, whilst i was at work, Anna had found a new toy to play with and i came home to her deciding we were 3 mermaids instead, cuz they have amazing lungs to be able to swim underwater.

I still get so upset that Anna, i miss out little chats online, she had such a querky way with words and was such a wonderful person didn't get a second chance, but i know she'll be so pleased that Soph got hers.  When Soph was poorly before she started to write a to do list and on it is meet up with me, i feel so privileged and excited and can't wait for the day we get to meet.

Tomorrow is another sad day though, tomorrow is 4 years since my beautiful best friend Natalie Buckley was taken from us by CF.  It really can be such a bitch sometimes, taking such good people!! Went to charity fundraiser last night in memory of Nat and tomorrow some of her family are doing Skydive on her anniversary.  Miss you Nat, everyday, not just tomorrow!! Love you xxx

Wednesday, 10 August 2011

It's 11pm n tomorrow at 13.55 I get on the plane for my holiday to Turkey with my lovely husband Steve and his best friend Joe (Kimbo) and his girlfriend Sarah! This will be our third holiday to Turkey together! I love Sarah n Joe to pieces n the four of get on brilliantly! Although I would say Steve and Sarah have a bit of a love hate relationship! But Joe n I get on sound, we both just go with the flow most time!

So yeah this holiday couldn't of come at more perfect time for me! This week I have felt a little less stressed knowing I'm getting on a plane out of here Thursday!

I did send an email to my consultant about my health n care! I worked out I have had 10 iv courses since jan 2010! Which worked out at nearly everyone month for the last 18 months! Which I don't think someone of my health really warrants! My lung function however has slipped! Last year an iv course would prob easily get my lung function back to early 40's! Now I've been lucky to make 38 cuz last week it was 33! I didn't do my lung function at start because of my chest pain but I'm sure it was lot lower! I had my all time low in June this year of 27! Not happy! I'm not ready for a lung function in 20's!

I'm convinced that all these ivs aren't solving any of my problems! Yes I have psueudomonas but I also have aspergillus! Last time when we treated it my lung function increased by 6 percent to 45! N I want that again! After reading my email Dr Lim and I had a big talk we discussed all the email bit by bit my concerns n fears and made a plan!

So for my holiday I'm increasing my steroids to 20mg I've started that today! Also not my ivs have finished my ivs I'm now on Clarithramycin for my holiday! I have my nebs ventolin n hypertonic saline and my acapella! So I should be absolutely fine on holiday! I'm also for time been permanently on transamic acid for all my blood in my sputum! So hoping that will help!

I gonna be starting a new nasal spray for my sinus's when I get home and going back on intraconazole too! Hoping it won't affect my liver this time so we gonna increase dose slowly n keep checking my blood levels!

I have also asked to go to Wythenshaw Hospital in Manchester to see them for a second opinion! I'm hoping some fresh eyes can help and going to what I think is a great centre will be able to give some ideas to my Cf team on how to keep me off ivs so much because at Stoke that seems to be answer for everything! DR lim has agreed to try some diff I.V's with me so just hope they make a difference!

I have one strain of Psueumonas that is pretty resistant so maybe a diff IV will help! All in all I was able to get alot off my cheat and feel alot better I'm hoping Dr Lim and I have come to an understanding now and we will be able to plan my treatment together rather than fighting each other for the control! For first time he actually listened to me and it was good! So fingers crossed its a step in the right direction!

So with all that good news health wise I also saw Dr Bodasing who is my consultant regarding my thrush! I had to have my peg changed because it was infected seems one of only drugs I'm sensitive too is nystatin so the hospital are trying to track a cream down for my peg hopefully I'll be able pick it up on the way to the airport! I don't want a manly peg whilst I'm wearing my bikini! Nystatin is one of the weakest of the anti fungals! Which is why for my thrush down below I'm having nystatin combined with another drug! My consultant had some tests run on my samples to see if even though I'm resistant to drugs like fluconazole maybe a spell of high dosed fluconazole would help! But nope it won't! So I'm stuck with the nasty cream n and applicator everytime I have ivs! Although I'm having it for a month when I get home! Didnt fancy taken that on holiday I do need a break from my life right now! So I'm kick starting everything when I get home! I also need to look at getting my fitness up and try my new neb! I have a new acapella one that you can attachto a neb so I can do the two together! My biggest problem sometimes is time when I go work! So doing the two together will hopefully make life easier! Although it means I don't use my ultra sonic neb n I kinda love that! I know it helps n works n I will use it!

So it's now 23.48 I hope to be asleep by 12! Big day tomorrow!

My little puppy is going on her hols at 8 to the kennels! She goes with Sarah and joe's dogs so I know Soph will be ok they all get walked together! Soph had no voice when picked her up last time! She had barked the whole time!

Lastly I can't end this blog without sending my love thought n strength to my beautiful friend Sophie Gannon who is currently really poorly! Luckily for her she getting the best possible care down at Harefield transplant centre and hopefully her shinny new lungs will come fast because she really needs them!!! I hope when I come back from Turkey she has had her transplant and is recovery as she is now a priority!!

So now I sign off! I'll speak to u all when I get home!

Be good! Be safe and be careful!

Love you all lots!!

Thursday, 4 August 2011

As I sit connected to my feed and tobramycin drip..............

It's 23.41 and i really should be going to sleep, i'm just waiting for my tobramycin drip to finish, i'm so not a fan of this once a day on a 30 minute drip thing, but i guess it's best to protect the kidney's as i keep been told.  

I've had a pretty emotional day today, been really worried about Sophie and i'm sending her lots of love and hugs and strength to fight through this horrible experience and come thru it and hopefully get some shiny new lungs really soon! xxxx 

Last night i started to make some big decisions about the care i receive at my hospital.  I think it mainly comes down to a personality clash between my consultant and I.  We both want to be in control and so for most of this year i've kind of avoided him, if i've been poorly i've rang CF Nurse and arranged to start IV's and not even had to see him.  He would just be told my lung function down, coughing more blah blah blah and i was starting IV's at home.  

Like you know i've had a rough few months, one thing after the other, so i'm not deciding to ask for a referral to Manchester to get a second opinion on my care.  I've actually had 10 lots of IV's since Jan 2010, basically i've had them every other month, half the time they aint done a thing and i've been on orals etc for that time not on IV's.  I really do believe that i have more of a problem with Aspergillus and last night i started to research it a little on internet.  So that i have more of an understanding of what is going on, i was actually first diagnosed with Aspergillus about 20 years ago, i was around 7/8 when i was first refereed to Birmingham to see the consultant there about it, he put me on permanent steroids and my mum tells me as a child i always suffered more with fungal/allergies etc.

I also found out you can get aspergillus in your sinusis, i honestly take cold and flu tablets everyday for sinus headaches.  I also have a blocked nose and the headaches i get can be so frustrating that i don't go anywhere without cold relief tablets in my bag.  

So now i'm in the process of writing an email to my consultant explaining everything to him and how i feel and asking for either him to help and put a proper plan together or to refer me now to Wythenshawe Hospital so i can get a second opinion.  All i know is i've had enough of IV's, had enough of feeling like crap whilst i'm still on them and had enough of not feeling the benefits. 

I was born a fighter and i'm not willing to accept that this is how I am yet!!

I want more!! I want 39 or 40% back on my lung function.

I want to feel better than i do right now!!