I've been through alot

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i've been dealing with cystic fibrosis sence i was a baby i am 16 years old now i will be 17 years old on thursday my lung collapesd the beging of 2015 i've been dealing with that and its very stressful because im only 16 nd im dealing with this monster i lost my dad to sick a cell when i was 10 years old. and lost my grandmother to lung cancer. last year they both falut and falut until they was tierd they are my strenth that i can defeat this monster im taken control of my life not cystic fibrosis me just me.

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  • Posted

    Hello Tee-tee

    Nice to meet you.  My heart goes out to you sweetheart - you have had a rough time not only with your own health issues but with the loss of your dear Dad at such a young age and your dear Grandmother.

    I am much older than you 67 and have had non cf bronchiectasis since I was a baby and I lost my Dad when I was a teenager.  I know you have many more issues with cf hun but from a lung point of view I can certainly empathise with you.  It is a very high maintenance burdon to cope with.

    I do admire your attitude Tee - your are so right - cf doesn't define who you are and you are in control.  Hope you have a very proactive consultant.

    Lovely to chat with you.  Please come and chat anytime.  Are you on any of the cf sites at all?

    With love cx

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    • Posted

      Thank you so much it means alot to know that im not the only one out here thats going thru something so horable like cf but i have to keep tell myself that im in control not cf i just wish my grandma nd dad new that they were in control. I would love to chat more with you guys thiss is really helping me cope its the first step any way dealing with this and my lost i hae to stay strong for them and my self
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    • Posted

      Wishing you a very happy 17th birthday Tee.  Hope you have a lovely time.  Your Dad and Grandma will be close to you and would be so proud.

      At 17 I assume you now have a specialist cf resp consultant within an adult cf respiratory unit.  If not you really should.  Sorry hun - you've had this a long time and will know this already.

      Going to see my consultant tomorrow, who is also a specialist in cf/bronchiectasis.  We need to discuss the nebbed Tobramycin I have been on and my intolerance to Azithromycin.  Also looking after my little 4 year old gd who has just started school today but they stagger attendance for a couple of weeks.  

      This is why I am writing this post to you sweet in the early hours, to make sure I get to wish you a very happy birthday.  Have a good one.  Will chat again I hope.

      With love cx

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  • Posted

    Dear Tee tee

    I am old enough to be your granny and I would love to give you a hug.

    You have been so brave. CF is so difficult to deal with. I have bronchiectasis which I have had since I was a baby and I know that what you have is far worse.

    I hope you have someone you can talk to about your anxieties and fears. This is a lot for someone so young to cope with.

    I hope you get the transplant and that you will feel much better. You are YOU not your illness.

    Love. X

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  • Posted

    Hello TeeTee,my heart goes out to you so young and suffered so much with loss and ill health. These lung conditions are so

    awful and until you suffer from it or live with someone who does you will never know. I do not know whzt to say to you except

    send you my love and bext wishes for your birthday. And all of that seems nothing when your ill and so young. All i know is that i jjoined this group because of my husbands illness and there are a lot of good and kind people in it that give you strength to carry on when your feeling low so just keep talking. Take care Tee Tee and lots of love xx

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  • Posted

    A very happy birthday to you Tee-Tee. Hope you enjoy your special day.

    I am so sorry that you have had so much stress and ill health in your young life.

    I do not suffer with cf so really can't help you with that, I have bronchiectasis. I can only hope you get the help and support you deserve and need. 

    Take care xxx 

     

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