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!!

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