Lung Transplant Assessment

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My husband has been diagnosed with IPF following a lung biopsy and has an appointment for a lung transplant assessment. We are very anxious about the thought that he may have to go through this and would like to hear from patients who have has a transplant and how this has improved their life expectancy. Thank you.

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  • Posted

    Hello Debbie,

    First there is the waiting list, then there is the active list, My partner is now on the active waiting list, they tell you when it gets close to your turn and  you have to be within 2 hours of the hospital, we live in Mallorca and as they don´t do lung transplants here, we have had to rent a flat in Barcelona. we have been waiting now for 6 months, this is not an easy time. I go back and for as much as I can to look after our house and animals...but it´s hard. However, there is no other option, without a transplant he will die, and at only 53, with all the risks involved it´s still worth it. we have seen people who have had the transplant that are doing great and others that are having a really rough time, but my advice is, if you are lucky enough to get on the list, go for it, it´s the only hope there is for this illness. good luck to you both.

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    • Posted

      Hello Diane

      That's really helpful. My husband is 54 and is uping is fitness levels to try and strengthen his respiratory functionality. I suppose until we go for our appointment next month we'll find out more. I'm devastated by the news and we werent really told too much when we saw the specialist at the hospital in Feb as we were led to believe that they were looking at phemonia. We havent told our son who is 11 as he would worry as he dotes on his dad and probably doesnt need to know anymore at this stage other than dad has breathing problems.

      Just feel quite isolated about it all and not knowing what the future holds. Thanks for your advice and listening.

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  • Posted

    I am coming up to my 80th birthday, and a year ago I was diagnosed with IPF.  I think it had actually started about 2 1/2 years ago but was not then diagnosed.  I have not been offerred a lung transplant, and at my age I would not go for one.  On the other hand  in May 2014  two drugs were announced in the New England journal of Medicine.  I have been on Perfenidone (also called Esbriet) for a year now.  The symptoms are slightly better - much less coughing, and much less noise in the chest. They say that Perfenidone cannot cure the disease, but can hold it steady so that it does not progress.  That seems to be true for me.  I also use some oxygen by means of a Phillips "SimplyGo". Portable shopping cart kind of oxygen provider.

    whether Perfenidone coulld do anything in your case I of course can't know.  You have to depend on your medics. But certainly you should ask about it,  like all treatments its use depends on age, on other medical symptoms, etc.  But I believe it has certainly given me at least one or two more years of reasonable life.   The clinical trials reported in the New England Journal of Medicine in May 2014 make hopeful reading.

    All best wishes and very good luck.

    neville Moray

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    • Posted

      Thank you Neville this is really helpful. The consultant has suggested he takes Perfenidone and said we would be contacted about it. It sounds like it has really made a difference for you which is heartwarming.

      This all started for us in 2007 when my husband began to have chest pains. Lots of tests followed all focussing on his heart and told everything was ok. He went back to the GP several times to be told he has probably strained a muscle in his chest. 7 years later we now have a diagnosis! He gets short of breath more frequently and we are feeling a little in limbo until we have the lung transplant assessment.

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  • Posted

    Hi Debbie, how is it going with your husband and his lung transplant assessment? Please keep us updated...thank you! I hope everything is going good for you too. 
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    • Posted

      Hi Brenda we went for the assessment and were told he doesn't need one as yet. He's now taking Perfenidone and seems to be ok although he had a breathing test last week and his levels have dropped a little. Consultant wants to see him again in 4 months.

      Weve also found an IPF support group local to us and I've volunteered to be the comms officer!

      How are you Brenda?

      Regards Debbie

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    • Posted

      Hi Debbie, Thank you so much for the great news. I have heard the Perfenidone is a very good medication for IPF, since it does not cure it, but it helps keep it from progressing so fast. Neville know's a lot about this medication, since he has been taking it for a while now, and reports that he recommends it to other's.

      Recently, my original Pulmonologist had resigned, and now I have a new Pulmonologist, and she is pretty good. My original Pulmonologist had me diagnosed as Emphysema, with stage 3 symptoms, but my new Dr feels strongly that I do not have Emphysema, since my symptoms are too severe for someone my age. She claims that the type of symptom's that I have (Wheelchair bounded, oxygen dependant, fatigued, etc) are what she see's with very old ladies in their eighties. So, she has been giving me many test's lately, since she believe's I may have either Severe Mature Asthma, or, one of the Interstitual Lung Diseases. I have been reading and researching medication's, or transplant's, etc...just out of curiousity, due to these two lung conditions. I just got finished with 2 Cat Scans, one laying on my back, and the other in Prone position (stomach...very difficult, but I managed..lol!). This week, she is going to be testing me, PFT (pulmonary function test), and 6 minute walk, with oxygen and some walking without. Not sure if I am going to like walking without my oxygen...lol! Anyhow, she will be giving me her diagnosis when she has completed all my tests. I have always felt like it wasn't emphysema, since whenever I read the COPD forums, they were very similar symptom's, but many my age could walk (me: only short distances), and many my age were not on oxygen (I am), and also many my age only had mild stage (mine is Severe/End bordering). It is scary waiting for the final diagnosis!

      What is your husband's PFT FEV1%, or his lung function percentage (how much function does he use for breathing)? What country are you living in? I am in the USA. 

      Thank you for asking about me, and I am so glad to hear that your husband is on the new medication Perfenidone, and he has joined a local support group, with you being the Comms Officer! Brenda x

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