some good news!

Hi everyone , after 3 appointments in the same week I feel like I am a step closer to the transplant list. I spoke to a cardiologist who specialises in heart transplants on friday who told me my pulmonary hypertension is purely down to my IPF and has not damaged the chambers in my heart although there is some more testing just to be absolutely sure. I also had my shuttle test/oxygen assessment and I am not yet at a stage where it is neccessary although most of the time i feel like I am drowning lol. I will be going into hospital in a few weeks for my pre-transplant assessment and as long as everything is ok i will make it onto the active list. As always i will keep the community posted.

Thats all for now folks, speak soon and breathe easy!

20 Replies

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  • That's fantastic news Mr. Wheezy....... I'm sure we will all keep our fingers crossed that everything goes ok for you.

    Keep calm and carry on :)

  • Good news, Val

  • I am soooooo chuffed for you hunny, it will give my dad hope when I tell him. Do you mind me asking how old you are nd how long you have had IPF?

  • I wish you the very best of luck.

  • Thank you all for the comments. Tanyamarie I am 38 yrs old and my symptoms started in September 2011. I was diagnosed officially in march this year. My condition rapidly progressed between Jan and April as I am now considered "End Stage". If you want to ask any more questions if it helps you and your dad please feel free I will be as open and honest as I can

  • 38 wow, you are so young, my dads 65 and hes end stage too. we got appointment tomorrow to see a private consultant so fingers crossed!

  • Good luck Mr. Wheezy - hope everythings goes brilliantly for you. TAD x

  • Hi Stitch, thanks for your kind words. Yes my disease progressed at a phenominal rate but every case is different and some people have years inbetween progressions I guess I'm just unlucky with it. Its normal for IPF to have no traceable cause and kind of has a mind of its own once it takes hold. I am glad my news brings people hope as it does me

  • Mr wheezy what a inspiration you are you have a lovely positive attitude even though you have this horrible disease this attitude helps to keep you strong in mind which you will need .I to am wait to be accepted on to the lung transplant list {hopefully in mid july }I try to stay as fit and active as i can and have a positive mental attitude with a smile lol. So good luck to you and hope everthing go;s well

    best wishes

  • good luck

  • I'd never heard of this, until I read about it here, and COPD, I'd never heard of that either, until I got it myself.

  • Excellent news!! At 38 you deserve another crack of the whip (just not at me). I've been told because I am over 62 my chance has gone for a transplant but even if i was able to have one they only give over 60s 1 lung. Perhaps the powers that be think we dont have that much longer so why waste 2. What other reason could there be? If someone knows i would dearly like to know. IPF has no path to follow, no pattern. Every case is different and we all react to things differently.

    Once again its excellent news and I hope the active list is looming for you.

    Maureen

  • Hi

    I am new to the group so you won't have seem me on here. I am really happy for you and hope all goes well...fanstatic news. Kath

    PS what is your full diagnosis ? As I understand mine is IPF/UIP do we have the same thing?

  • Thank you for your kind words Maureen, sorry its not better news for you and yes you are correct this disease is very different for every sufferer I have read about people that have no change for years and others like myself that it takes over very quickly. Kath I have the same diagnosis as you but I also have PH ( Pulmonary Hypertension) whick is high blood pressure in the lungs due to the fibrosis which can weaken and even rupture the lower right chamber of the heart depending on how severe this condition is will determine the need for a heart/lung transplant

  • Wishing you all the very best :-)

    Jo

  • Keeping everything crossed for both you Mr Wheezy and Carol

    All good wishes.

    Zoe

  • Got everything crossed for you, keep in touch.

    Best wishes

    Linda

  • Fingers crossed for you mrWheezy we lost our 16 year old son 14 years ago in a road traffic accident we dontated his organs and a 62 year old male got his heart , as far as we know this guy is still around today i know somebody may lose their life in order for you to get a transplant but its a lasting legacy they leave if they donate their organs , all the best .

    Gill xx

  • thankyou ,and god bless you I would not be able to have any hope without good souls like yourselfs x

  • Hi mr Wheezy at 38 your so young to have any of this ,my heart goes out to you .I am 57 and going in to papworth in sept for 3 days for my pre assement tests and hopefully like you ,be put onto the live list scary ah It has taken 10months so far to get here what with tests before going to papworth and then more tests that papworth wanted done .fingers crossed we will both be running about soon keep being up beat and kick ass ,take care and keep updates coming jackiex

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