British Lung Foundation
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Feeling Deflated

Feeling Deflated

This past Wednesday I went in to discuss with my pulmonologist where I am at on my journey in this life. I had previously last May thought I might consider the lung transplant. Began a required regimen and after two months of being sick from the medication decided that I was not going that route. Feeling the course treatment leading to the transplant was far to difficult for a chance that may never come, or may only give me a year and the medication may make me sick beyond belief. The protocol leading up to the transplant put me in bed for an entire month between diarrhea and abdominal pain. So now I fall into a category of quality of life versus quantity of life. My doctor said I didn’t have to have my standard testing which is a ct scan to monitor progression of my interstitial lung disease and a pulmonary function test. He recommended that I begin to think of palliative care and getting it set up and in place for when I feel it is time. I know from a nursing stand point when doctors are speaking of these preparations it’s because it’s coming soon. Now I know we are not time stamped no one persons knows for sure how much time they have left here in this time continuum. It does give me pause because I know in my heart that my battle is nearing the time I become home bound except for doctor appointments and perhaps testing. The facts are the facts and soon I will have a ct scan and pulmonary function test to get an idea of exactly where I am on my journey. I’ve been on borrowed time as I was told in the beginning of the journey with this disease I had three to five year and that was in 2010. I’ve beat that by two years and five months so far....

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Thinking of you docmel. Xxx

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I am so sorry to here that things with the transplant didn’t workout and my thoughts are with you but having control over palliative care will give you

Purpose to each day. Still a very sad day having to admit that there’s no more to be done my hugs and kisses go out to you 🌹🌹🌹

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this is such hard stuff to deal with...I know you beat the odds and you might continue to do so, but it still sucks...I think this is when your journey will become spiritual, and getting as much support as you can is so important💖💕💞

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Hi Docmel

Such a lovely happy photo.

You are so brave. You seem so wise in considering your options.

I feel the doctor should have waited for you to complete your CT scan and pulmonary functions before approaching palliative care.

You are right to pursue the tests so you know where you stand.

Of course you know your own body and you will decide accordingly but prognosis is such an individual thing, you can be told general guidelines that’s all.

If I consider that the onset of my lymphangioleiomyomatosis symptoms was 24 years ago and LAM prognosis is 20 years, I would be deflated too. Well actually my LAM is stable now, did say last weeks CT scan, it hasn’t spread to other organs and there was even a delicate improvement on lung ventilation..so who can tell us what tomorrow is made of..

Lots of love docmel 💕

Fran xx

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Wise words, Fran. I hope you find a path through, Docmel. Don’t settle into palliative care until all test results are certain and this seems the most comfortable course. Life is always such a guessing game.....good luck xx

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I won’t settle until I absolutely know within my heart... coming from experience

it’s coming.

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Hello docmel, what a brave Lady you are, total respect for you. You are so focused on what you need to do and deal with everything that comes your way, truly amazing. I pray that you have peace of mind throughout your journey . Your lovely face says a lot about the kind of person you are. Inspirational. God Bless you ❤️

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Hi Docmel. What medication were you taking in preparation for a transplant? I'm on the transplant list and am just using a mouthwash. I'm puzzled that you were on medication - did this directly relate to the proposed transplant or was it for your underlying condition? I have IPF and have never been asked to take anything in preparation for a transplant. I'm sure you have already asked the question but it might be worth another check into what you were taking and why before abandoning the chance of a transplant altogether.

Thinking of you,

Helen

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It’s called Ofev

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Ofev is supposed to slow down the progression of the fibrosis. As far as I know, it doesn't relate to transplant. I tried this drug but decided to stop taking it as it wasn't working for me. It had no bearing on the transplant and in fact I was put on the transplant list after stopping taking Ofev. I know transplant is not for everyone and I know what big decisions you are having to make but you seem so young to not have this chance especially when the information you have been given doesn't make sense to me. It might be worth some more conversations around this issue before making any final decisions.

You are in my thoughts.

Helen

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The transplant team at Loyola made this a requirement and said if I couldn’t handle the side effects of this medication then I would not be able to handle the side effects of the medication after transplant.

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Did they try you with perfenidone? Ofev and perfenidone are the two options that do much the same thing but people tend to tolerate one better than the other. I tried perfenidone first but could not tolerate it due to the constant feeling of nausea. I was fine with Ofev but stopped using it as it didn't seem to be effective for me. The fact that I couldn't tolerate Ofev had no bearing on my being listed for transplant. I just feel uneasy about the advice you have been given. How on earth can they know which drugs you can tolerate when our reactions are all individual? Not being able to tolerate one drug does not mean you would have a similar reaction to a totally different drug. I don't want to put pressure on you but I do want you to be sure you have all the information you need. Are you in America? If so, are you able to seek a second opinion with regard to your options?

Keep strong.

Helen

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Sorry to read what you are going through and hope you have many happy times to come . Good luck with your tests.

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My doctor recently told me to start thinking hospice

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So sorry you've had this news. You're a very brave lady. I see you're not even homebound yet, so hope this isnt an ignorant question, but what does palliative care consist of and how do you go about setting it up?

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It is designed to make you comfortable as your disease progresses but it is like the step before hospice. Many palliative care and hospice are within the same company the criteria is different for each one.

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Thank you. I sincerely hope you don't need their services for a long time. Sending big hugs xxx

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Hi Docmel, so sorry to hear your news, my Mum used to say never give up. Who knows what is round the corner, and hey you have already beaten this by a couple of years. Hope the tests give better results than expected. I think you are very brave and have a sensible attitude, wish you all the very best. Keep us updated.

Irene x

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Xx💟xx

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Thank you for sharing your thoughts and the beautiful photo of your smiling face with such a sunny disposition it makes it hard to read that you are in this position. Whilst I agree with the maxim whilst there is life there is hope and I do hope so much for you that you can continue as long as possible to enjoy the pleasures and relationships in your life; I want you to know I hear you loud and clear that this is your reality.

I think it is important when facing these awful situations that you are able to express this, without the obvious and understandable pain of others not wanting it to be true for you,trying to stop you or urging you to rethink. If only it was always as easy as rethinking.

I wish you well, so very well, I hope against evidence and the experience of medics that you are allowed more life to enjoy. And if not then I hold your hand.

Jo

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Yes the thoughts for me are of my family and preparing them for the changes I know are ahead of us. I have taken care of a lady who died from in part what I have ... I know based on how this body I’m in feels that while I hope for years I’m looking truly at months at best a year if I don’t get some bad infection or virus.

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It looks Like you are still in the mood to fight it and be as positive as you can? Keep it up.

Be well

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Hi Docmel...you have already smashed your 'expected ' life span. I was told once my life expectancy was to 30 yrs ( that was given at age 16) granted they then found antibiotics ...so it was revised at aged 40 to the age of 60 ........I am nearly 20 years past 60 and I am still going strong...OK very breathless ( but not on 02 ) but I can drive...go out on walks...enjoy my life in a restricted way. but STILL GOING...I actually felt reading your first post that you actually manage to get about still at the moment ...look after yourself, eat well, take supplements, exercise ( I walk) as much as you can ....luckily the doctors are not always right , and they are very often wrong ...KEEP GOING GIRL. I look forward to hearing from you in a years time when you can chalk up another year

Love Sohara

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True no one knows how long one can live ... I am a fighter of sorts... nothing has ever been easy in life. We always look toward tomorrow.

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Being a fighter is good......I am a great believer in the strength of our spirit ,, I have this belief that I AM going to be OK , and that I won't let anything get me down. When the going gets tough the tough get going ....OK I am 'going' slower but I'm still going :) :)

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Thank all who have responded I’m a fighter at heart and do have this kind of never say die attitude, but I know at some point my fight will be helping my husband accept the inevitable.

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Aah this remark made me cry 😢 but I do really feel for you and your family with this fight. I think your attitude to this horrible disease is amazing and what a Brave lady you are - I pray that your life expectantly will be as long as you can cope with it. I am sending love to a lovely happy (photograph) ladybless you 👍🌹😘 xx

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Hi docmel,

Sorry to hear your lungs in such a bad way...

I am a Royal Brompton Patient and from 2004 pm the only one out of 12 still here. Some were worse off than me some not so serious.

I'm 66yrs, asthma mod/severe, COPD moderatly severe and bronchiectasis. Lung capacity 32%

I'm told Fev ▪9 not sure what this means....

Yes l struggle, yes lots infections that won't clear but point lm making is, l also know time limited and although quite a bit older than yourself.

I don't back down! I'm the daughter of a surviving Japanese POW and will fight on ad long as l can.

Sounds to me you have plenty of courage and have defied the odds before...

In Spain at moment to avoid Aussie flu.

Recommended by prof! Although he didn't pay for it....Have Stenotrophamonus that won't clear and lm tested all round... Wish you could have stayed with transplant idea, you are young and determined.

Please carry on doing your best and taking greatest care of yourself....

Sending love and caring thoughts.

Janice x x

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Sending love and hugs xxx

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Wow, I am so sorry to hear your story. I have copd stage 4. Just found out almost 7yrs ago, but it was already so bad that it did not give me many options. time sure goes fast when you are in these situations, i does not seem that long that I sit home, not doing much going out. What kind of medication that stops you from getting the help that you need, that could change your life? How does your family feel about your decision?

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Hi! docmel, you brave lady. I would definitely be getting a second opinion on the lung transplant and the meds. Does not sound right to me. Good luck.

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