Hi I am Tonia and have some questions maybe you can help me with. I was diagnosed with end stage 2.5 years ago. Transplant was not brought up because they expected death at any time. 3 biopsys looking for good tissue came back as honeycomb cysts and pain. I have spent most of the last three years in bed but I started rehab a year ago after asking about transplant. I started this coming off a coma and life support because of sepsis pneumonia so holding a pen was too heavy at first and I kept going through bouts of hypoxia for months before the biopsies were done and after. Until the huge doses of prednisone were started. Mine is from autoimmune disease that seems to be genetically predisposed as other family members have had same problems. Very complicated but I have been pretty useless for a long time and you are going on trip I know the sepsis and coma made mine different I would like to talk to someone who might have ideas about how hard I should push myself my heart is of course much bigger than it was. My mom died on heart transplant list at 49. I know what to expect from trans if i even get one but my son is a teenager I would like to get him through college before experiencing that grief if possibke.

i wish i had an answer, but i am not too well versed in medical problems.

as far as pushing oneself.....you need to listen to what your body is telling you. learn to recognize signs of fatigue, thirst, exertion....for example....when i begin to clear my throat, i have come to realize i am getting dry. when i take a sudden deep breath, i need to sit.....when i get a head rush, i need to slow down....and some of this can only be answered by a doctor. ask him/her all the stupid questions you are afraid to or ashamed to ask....like....."when i sneeze i see stars....why?" or "sometimes my heart feels like it is beating outside of my chest....do i need to worry?"

as far as your son goes. keep the conversations open with him about how you feel physically as well as emotionally. share with him the concerns you have about the future. don't run it into the ground but be open and honest and encourage him to ask questions. share with him the reasons behind those feelings, like you did here.

good luck, and spend some time in meditation or prayer, or just some time with your thoughts and memories....

Thank you for honesty.

Barney want to say thank you I am trying to get into the study although it will be quite a drive every 3 weeks. I hope I don't get placebo.take care and please keep us informed on how u r doing I am sure I am not the only one watching. I have other issues that could benefit if I read itright on their site I will also post progress or not for anyone thinking about it.

i will be getting my third infusion this coming monday. i was concerned about reactions, side effects, etc when i was receiving the first one. but nothing. didn't feel any better, or worse. thought if it was going to help, it might take a while.

the day after the second one is when i noticed a difference. i felt good. much better than i had felt for months. and even two weeks later, i still notice that breathing is better. i haven't ran out of wind when trying to carry a conversation.

if you get into the fibrogen trial, there will be no placebo. everyone that participates gets the real deal medecine.

a couple of the times there will be testing, etc, which adds time to the infusion, but it is worth it in my opinion. generally, the infusion lasts about two hours ( 1 hour for infusion, 1 hour afterwards to monitor) and a little bit of time for checkup prior and question/answer time. since i live a little over an hour from the center, we generally plan it to be a day. afterwards we eat out; do a little shopping; maybe visit our daughter and then go home.

i hope you get in. i hope it works for you.

I plan to continue Transplant hopes if needed after this as I imagine will be the case but I can't afford to do things they require and they know it somethings like extensive dental work have prevented even getting to the listing vote. I pray for a miracle and not needing Transplant the trials show actual reversal so who knows thanks Again for posting this.

I am having problem getting call back from the two closest centers butI will keep trying these are a 10 or 11 hour round trip for me I no longer drive since it would not be safe so someone has to take me every there weeks but I am committed as financially Transplant is not realistic at this time. Someone who has helped us with this mess has volunteered to help pay the gas expense for the only vehicle we have available which is big v8 dodge ran 4 x 4 can't afford another that would be better. TMI sorry just wanted to know if there are any special qualifications for this trial that I might not meet. I was thinking I am a volunteer Guinea pig of x of course they will take me now I am worried.

first of all, keep calling or try email. get your dr involved in helping. i met the requirements, but my condition is still considered moderate. from what i can gather, state of health was the biggest concern. they wanted to make sure that participants were healthy enough to complete the study.

secondly, try to borrow or find someone with a more economic vehicle to make the trip. are you a member of a church? lots of people in church would be willing to help out by either lending a car, or contributing to your gas tank or even driving you there in their vehicle.

or try contacting the salvation army. while they probably would help with a car or money, they might be able to steer you to some other resource to help out...

and most of all....good luck and don't give up....hope is without a doubt, the one medicine that can't be withheld

Thank you I believe I have been stable long enough they should be ok with me but I was end stage 2.5 years ago when dx but I have not been hospitalized except for angioplasty all year. At first I was in every ,,3 or4 weeks for either pneumonia or what looked like pneumonia for about a year it slowly got farther between attacks. Thank God. You have a very nice way of phrasing things. I will keep trying I have nothing better to do. Gonna make cookies with my son if I can get my butt out of bed.

Hi Barney just to let you know one of the sites has contacted me there are some,restrictions that I hopefully can squeak through mainly about auto immune,issues and if my IPF is truly idiopathic which it is. Thinking and knowing are two different things. Meds have to be adjusted and hopefully we will get through but it feels good to be doing something and telling my family Merry Christmas

phenomenal!!! i remember how i felt when they told me that i had been accepted into the fibrogen trial....it was a feeling of hope and euphoria....i felt like God had thrown me a life saver....i am glad that you are onto the next step and that it comes especially at this season....it must feel like a huge boost in your spirits....I am hoping for the best for you and will pray that you get accepted.....

Hi I was turned down for this trial I was told there were 2 more studies coming up but the parAmeters are not known but she will keep my records and if I fit she will get me on. The autoimmune issue was the main problem. I need to get my biopsy results to her as they were not sent with everything else and apparently my pfts were not clear for IPF. I had never heard that before but even after all the university testing but as all 3 lung biopsies are clear for honeycomb lung which is definitive for end stage ipf , but I will get it in for next time my autoimmune problems will not fly though so I will have to wait anyway. I had slide health wise but am a little better now I will keep I pray. I am disappointed but things will always work them selves out. Merry Christmas to you Barney and anyone else.

sorry to hear that you were turned down. i know how that feels.

I hope that in spite of the news, that you have a wonderful holiday with your son and your family and friends.

keep you hopes up....there are a lot of trials, and new medications every day....

more importantly, find something that helps to remind you how wonderful life is....how great our joy can be....

i find solace in two scriptures....one is John 10:10 "....I have come that they may have life, and more abundantly.." is the way it reads. i substiture breath for life since we cannot live without breath. reading it this way reminds me that the Saviour that I believe in, came not to create a new religion, or to provide a path for churches to get rich, but that i might live and to do so with the capacity for life, love, and joy.....

the second scripture that brings great encouragement is Jeremiah 29:11..."For I know the plans I have for you...." it reminds me that we just can't see the future. we can plan for it; we can hope for it; but we can't tell what is going to happen even in a minute. however, i believe that the force behind the creation of our universe can and not only can he see what is about to happen, but he has made plans for me.....even if nothing else works out to my desires....the one who has the power to do so, is taking care of it......

may your spirit be comforted as you celebrate this time of year......

I am good. I have had the best week I be had in probably 5 years or more even with having a slide. I have actually had,a miracle and learned for real that some of Gods greatest gifts are unanswered prayers,which is not quite right he answers all in his time and sometimes we don't like it. But who am I to question the one who knows. Thank you Merry Christmas to you and your family and I pray everyone,on thus site who have wonderful season with someone who loves them.