Hi all
I have recently been diagnosed with IPF, as you can imagine my emotions have been all over the place after reading all about this disease. I have just started taking nintedanib, even though I am on warfarin. At my next consultant, the doctor is going to discuss transplant options. This may sound silly, but if I am offered a transplant is this a no brained? Would anyone know what I should ask my doctor regarding this.
Ronnie
Hi Ron62 and welcome to the forum. We have members who have had transplants, members awaiting transplants and members who have refused transplants so hopefully a cross section of them will reply. If you live in the UK you also have the option of speaking to the BLF nurses on the Helpline (03000 030 555 during office hours, Monday - Friday). They are an excellent source of information and support and will be able to help with suggestions about what to ask.
Sorry to hear this. If you type lung transplant into the search box all the previous posts and replies about it will come up.
Thanks I will do a few searches
Just to say welcome to you Ron, you have come to the right place for help and support. Xxxxx
Hi Ronnie
I have done my assessments for transplant and can tell you without hesitation that every question i asked just created another 5 !!! Write down all your questions and ask them, dont ever think its a silly question because none of them are ..
Thanks for the advice, Mandy
I am a member of a support group for pre and post transplant patients... if you would like the email address just let me know
Hi Ron, deciding whether to have a transplant is a process rather than an instant decision. The further you go through the process, the more you will understand about the pros and cons. I think the main thing for you at the moment is not to rule anything out, to find out a bit more about what transplant involves and to speak to people who have had a transplant.
Take Care,
Helen
Hi Helen, I intend to take everything in and to listen carefully. My and my fiancée's mindset is to go for it if I get the opportunity. Part of this reasoning that I lost my brother to COPD last month. I know I should push this emotion to the side and weigh everything up. I appreciate your advice, thanks
Hi Ron.
I was diagnosed with IPF in February this year after having a lung biopsy. I am now prescribed Ofev - nintedinib. I spoke with my consultant about the lung transplant process which is quite complicated with many hurdles and test to be completed just to get onto the list . I have just started the paperwork and my consultant is going to start arranging the many test required.
In my opinion, i am 47 years old and I would be daft not to attempt to go down this process and see where it takes me. I know the transplant team are strict on their criteria so I might not be suitable, ill enough or fail one of the tests to even get on the waiting list but at least I will know that I have tried. I don't want to shut this door on myself even if there is only a slim chance that I am put on the waiting list or get a lung transplant in the future.
I think I owe that to myself and my family to pursue the process and give it a try even its its scary to think about.
Good luck with whatever you decide to do and this forum is great for advice and support.
Hi Ian
Thanks for replying, I know exactly where you are coming from I am 54 and only got engaged in February, so I want to have as long and comfortable life as possible, I am shocked how little I can do compared to 6 months ago spent part of the weekend in the garden and took me 2 days to cut grass etc where I would have done it all in an afternoon. I am due to speak to my consultant tomorrow. This is just my 2nd week on nintedanib so far going well.
Hope all goes well for you
Hi Ron,
Its all very scary and quite daunting trying to deal with something so new, serious and something that I knew nothing about until I was diagnosed . My consultant at Aberdeen Royal Infirmary has been great and really informative.
I am on week 5 of nintedanib so far only minor stomach issues. Exercising going well (setting myself small targets) and trying to stay as positive as possible. Just started the paperwork looking at the transplant process which takes forever with all these test to go through to see if you are suitable.
I agree with you simple things take forever to do and i often want to have a nap straight after completing them. Hope your appointment goes well.
Hi Ron,
I had my second visit to see the consultant yesterday. They can't determine the sub type of IPF I have and would like me to have a lung biopsy. I am scared, not just with the thought of this disease as it's all come out of the blue & we feel very alone, but with the thought of the op and it's risks. As with all things you sit there, come home and think I should have asked this or that. I have said yes to the op and the doc doesn't want to see me for 4 months! I suppose my question is di you have any complications with your op?
Kind regards Maggie
G'day Ron..Just found your post....sorry to hear about your health issues...My wife was diagnosed with IPF in May 2014..and received her new lungs on 15th July 2016....I have kept a diary of every event that has taken place over our journey...and sadly during this period we have lost 2 dear friends to this beast of a disease..they both opted not to have the Tx believing their quality of life would be improved by living with the disease.. No one can tell you which path to take..this is a decision you must make..this journey is all about you and what you want from life...If it may help you here are some stats...We reside in Melbourne Australia and our hospital is the Alfred...world recognised for lung Tx's. In 2015 they did 82 ops and 81 have survived..last year they did just over 100 with 99 surviving. There are issues with most surgery's..incl long or short term diabetes. Please retain any spirometry test results, ask for them from the Dr..they are a guide..not a fixed in concrete proof of your lung status...the test can vary dependent on how you are feeling at the time...my wife had 2 ...6 weeks apart the first her DLCO was 28% the second 40%.She had breathing issues prior to the first so we received a low and false reading..... Hope this may help you on your journey...If I can be of assistance..I am only a keyboard away. When you are thinking about which path to take please ask yourself...Apart from a Tx what other options do I have??...Best wishes
HI
Thanks for your response. Both myself and my partner have decided to down the route of a transplant. My consultant is putting my name forward to the transplant team. As I understand there is still a long journey to go.
Sorry to hear that you have lost 2 friends.
How is your wife doing with her new lungs?
Regards
Ronnie
G'day Ronnie....Susan is doing very well...nay she is better than well, albeit with a few hic-cups....non life threatening...but side effects from the surgery and the meds. Congratulations on your decision..if you are not aware.... Caspiana one of the members on this site has just been accepted for Tx...Once you are checked over by the transplant team and accepted it may be a whole lot sooner than you realise. We have some friends (Transplantees)...one was on the list for 5 days...another 6 weeks...the norm being 6 months...it is up to the donor, being...same blood type..size..and antigens as you. For a male it is so much easier, as with females who have had children they have antigens from the pregnancies and these remain with them for life. Do you know what blood type you are...remembering that it only needs to be the type not the positive or negative factor and providing you are not B neg they can, if need be, use O type for all others.
The rocky road you are travelling will be smoothed out after you have been assessed by the hospital (This normally takes 3 days of tests in the hospital)....Best wishes and please keep in touch.
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