— 8 December 2005 —
Anyone out there have any experience with Pulmonary Fibrosis?
At this point I really don’t have enough knowledge to ask a better question. So for now I will leave it at that.
Any info is appreciated. I realize I could search for it, but I thought I would also ask out loud (as it were) just in case.
Thanks.
Lisa McMillan eloquently responded with:
Hey man. I have lots. I live with my parents and grandparents so I can help with my grandpa, and my grandma who has had pulminary fibrosis for a long time. She’s at the end stages now at 92. Email me. I have all kinds of information I’ll put together for you when I get home tomorrow after class.
gregory eloquently responded with:
I know a fair bit about Pulmonary Fibrosis, since I have it :). Feel free to contact me with any questions you have.
Robyn eloquently responded with:
I lost my mother in law in 1994 to this disease, her brother several months later, and now her youngest brother was diagnosed last Thursday. The doctors told us it was not hereditary but it appears that either it is or all three of these individuals were exposed to something that has caused this. I am in fear of my husband’s health and my children. Does anyone have any information that may help?
Lisa McMillan eloquently responded with:
Matthew just asked that I post my reply as a comment in case anyone could use the tips I sent him. I’m no expert here obviously, but I am sort of a caregiver for someone who’s very far along with the disease. If you guys have any other tips for me, I’d love to hear them :-)
I’m sure you’ve found some more information since your last
email, but in case you haven’t I thought I’d just send along some tips
that we’ve found help us when dealing with my gramma. I’m not sure
what stage your mom is at, so these may be way out of range - gramma
has had it for as long as I can remember. Nothing happens fast with
this one man.It’s all about lungs and breathing - it has something to do with scar
tissue in the lungs that make it harder for the blood to get the
oxygen like usual.The thing we find to be most helpful is just to get rid of any steps -
again, since gramma is so far in, and remember she’s 92, we try to
shave stuff off her day so she isn’t straining to do things. I get up
early in the am and set the table for them, just so there’s as little
back and forth as possible. I make them breakfast, then put everything
away. Then just before I go to work I set the table for lunch - every
little bit counts. I know that seems obvious, but it’s actually quite
a fight (she’s SUPER stubborn), so it’s taken years to get it down.
She still wants to do everything but really can’t so we just try to
stay ahead of her.One of the other things we try to make sure of is that she stays away
from cleaning chemicals and stuff because they really seem to irritate
her lungs. Neither she or my grampa ever smoked, so we assume that
harsh cleaning solutions were what caused her lung problems. I don’t
know what your mom is like (mine’s insane about the cleaning), but if
she’s really into getting on her knees to do the floors and stuff it
might be good to get some masks…Occasionally when gramma gets a cold or an infection they put her on
some heavy steroids - it always helps, but they are careful about
leaving her on them too long because they have side effects.
Oxygen is the key. We have one big machine for the house and one that
she took with her when she still went out. Gramma fought using it for
a long time - if your mom is fighting it try to talk her into using it
all the time. The earlier they use it the better I hear.I know that gramma was diagnosed in her mid 70’s and they said then
that she was too old for the surgery - aparently they can go in and
remove scar tissue or something. That might be an option for your mom.
I’ve even heard that they can do transplants depending on the
situation. There’s also puffers that have steroids/medicine in them
like those that people with asthma use - she used those for years and
years. I’m not sure if that treatment is still considered valuable,
but it’s worth a try.I’m not sure if it’s just because my gramma is really old, but we find
that we have to really push to get help with this stuff. You may end
up having to advocate for her with the doctors down the road. Not
enough is known by her doctors, in my opinion but if you can get a
specialist I’d really recommend it.Of everything, saving her steps is probably the best advice I can
give. Breathing is laboured and naps become more frequent. If your mom
is stubborn like the women in my family she may not tell you that she
needs to rest. Best advice I can give you is to just be mindful of
her… if you’re lucky she’ll just let you know.Oh, and make sure everyone in your family gets their flu shots etc.
Things like colds can really cause problems for them - when I’m sick I
just try to stay away as much as possible. Having antibacterial stuff
around the house is always a good idea. Allergies can just make things
a little bit worse - pet hair, dust, things like that, if they can be
avoided are good.
And Robyn, my grandma’s brother also had it so I just assumed it was hereditary… if anyone finds out anything else about that I’d love to know.
Sounds like there needs to be more online resources about the disease. Good luck to everyone in finding what they need to know! :-) And Matthew, best wishes to you and your family. Hope everything goes well for you!
Apryl Anstine eloquently responded with:
I lost my dad in 2002 and an uncle (by marriage) in 2005 to pulmonary fibrosis. When we researched this in 1994 we were told that it was not hereditary. My dad was told by his specialist that if he would have seen him sooner (he didn’t tell us he was sick let alone see a doctor for a couple of years) then he could have had a lung transplant. My dad died at the age of 72 and he never smoked. The doctors said that he had the lungs and heart of a 120 year old man who smoked 1 pack a day.
My brother is being tested for it now so we started our researching again and we found that in some cases it is hereditary. We have not found any mention of transplants in documentations, but we have found where based on the patients current health conditions they can remove some scar tissue.
If you would like more information you can e-mail me and I’ll try to help.
shirley eloquently responded with:
My mum was diagnosed with pulmonary fibrosis at the end of December 2006. Her symptoms seemed to come on very suddenly, after she developed a respiratory infection. She eventually had to be taken into hospital. She hadnt even been short of breath before that. She is 76 years old. Shes back home now, after 7 weeks in hospital and they tried her on prednisolone but it wasnt making any difference so theyve stopped it. She is on oxygen all the time (via a concentrator, and cant do very much at all without becoming very breathless. I wondered if anyone else knows of symptoms coming on suddenly like this and, if so, is the prognosis worse for people whos symptoms come on so suddenly? I would appreciate any feedback. Thanks.
Robert Morris eloquently responded with:
Seven and a half years ago Bob Morris was diagnosed with Pulmonary Fibrosis. With help from his sister (me) he researched the disease on the internet and came to the sad realization that the current “treatment” for IPF was ineffective and someone diagnosed with this disease would probably be dead in 3 years. Since this was an unacceptable situation we began searching the internet for alternative treatments and discovered a study that was being done in Switzerland using Actimmune.
We researched the method,dosage, etc. and then went about finding a supplier for this medicine. We found a supplier, but since it was not approved by the FDA for IPF , my brother could get no help from his medical insurance and ended up spending around $8000 a month for this treatment out of his own pocket. The good news was that it was working for him (we have all of his medical records to coraberate this available to you)…but the bad news was that he was quickly running through all of his savings. When the FDA approved this for use for IPF he was so relieved because he could get it now from the VA for $7.00 a week. Everything was going great and into 8 years of using this he has lived and is still living a very active life. Not only has this medicine curbed the spread but he was actually improving. His doctor called him the miracle boy.
Then the news came that the FDA was withdrawing its approval of Actimmune for the treatment of this disease because the clinical tests that were being carried on said it was ineffectvie. Well, Bobby is proof that it isn’t. Why it works on him and not others we don’t know but our big problem now is getting it at a cost that he can afford. He is sure that if he stops taking it he will be dead in a year. PLEASE help him get a break on this. Time is of the essense and he doesn’t have enought time to go through the FDA, VA, etc to fight for this. I am sending this letter out to anyone who i think can help us. I am also sending an attachment of a letter he wrote when he first started and a letter he just wrote begging for help. His email address is bobphotos [at] ptd dotnet and his phone number is 610-596-0429.
Laura Shepard eloquently responded with:
This thing is killing my Dad as we speak. The Doctors are banging their heads on the wall trying to figure out how aggressive this became in a matter of weeks. His might be related to inflammation from ulceric colitus. The inflammation from there might be attacking his lungs. He is intubated now for almost 10 days. Steroids haven’t helped.
Sandie Fernquist eloquently responded with:
It is interesting to read these postings and could provide a comfort to someone going through the hell of this disease. My husband died from this disease last Saturday after a diagnosis just a year and 3 months ago. He was an incredibly giving person and participated in a study at National Jewish Hospital for a stage 3 investigational medication. He wasn’t currently taking is because of side effect with the sun. The steroids they tried using to slow down the effects did nothing to help his condition. I only take comfort from the fact he is no longer suffering from this horrible disease.
Dani eloquently responded with:
Hi… My mom was diagnosed in 2004 with small cell carcinoma stage four in her tonsils that had moved to her left lymph nodes. She had surgery to remove the tonsils and 33treatments of radiation and 2 types of chemo. We almost lost her. She is now 44 yrs old and has been in remission for 3 years now, BUT the treatment caused hypersensitivity pneumonitis, which in turn caused pulmonary fibrosis. The doctors really didn’t, and haven’t, told us much. Next week she and my dad have an appointment with the lung specialist. I think they daignosed her 3 years ago, right after treatment, but we didn’t know the term until this summer when she “fell out” and was put on continuous oxygen, which is hard for her because the radiation also left her with no saliva. For the past 6 weeks she has had a weird “spot” rash all over, migraines constantly, pale complexion, weight loss, extreme fatigue, loss of hair, and also extreme loss of breath. We are all worried. I just want to know what the doctors know. We really don’t know anything at all. I think the scarring was just in her left lower lobe. I just want her to be able to enjoy life. If anyone knows or has any similar experience please let me know. Thanks. I’m praying for you all.
pam eloquently responded with:
my mom died on nov.3 2006 she died of this disease and copd. she had gotten very ill in 1998 and recovered for a littl whil then in 2000 the did a lun biopsy and she and me were told she this disease she was put on oxygen for just night time at first then she got very bad and was put on it all the time she went thru hurricane rita and almost died but we pulled herthru then in 2006 shespent 8 weeks in the hospital and almost didnot make it. she went hoe and she continued to go down hill i wasat herside when she diedi miss her very much
gbanes eloquently responded with:
my dad has had iit for 4 plus years, just wondering what the
end stage signs are.
Alex eloquently responded with:
Hi,
My partner’s dad, and his paternal uncle, died of pulmonary fibrosis last month. The grandma and great-grandma on that side died of it as well. I’m scared for my partner, his brother’s and future children. I heard from someone (another relative) that IPF is only passed on by the X gene, meaning that my partner and his brother would be protected due to their being male, as their Dad would’ve only given them a Y gene. Has anyone heard of this? Also, aside from avoiding things like mold and dust, does anyone know of ways to reduce someone’s chances? My partner works in a chemistry lab, and we wonder if he should leave.
Any advice would be appreciated, and my sympathies to those who have lost someone or have someone battling this disease.
Amy eloquently responded with:
My mother just died January 25, 2008. After being sick and short of breath for three weeks. After being in the hospital the last two weeks and ICU the last four days she really went down hill fast. The day we let her go is the day we found out what was wrong with her. She had surgically lung tissue tested and it came back to be palmonary fibrosis. WOW! She had been on the vent for the last two days because she no longer could breath herself with the measured oxgen mask. I was told that this is not a hereditory. I am questioning this as I read different websites. Mom was told in 3-07 that she had lung cancer in the right lung. She did chemo and radation. Remission free in 10-08. She never knew what hit her. It was just this last December at her last remission check up where the xray looked great. She went every two months for blood and xray check up for the cancer. I can believe any of this. Thank you for listening and Gob bless you and your family!
Bekki eloquently responded with:
I just found out tonight that my dad has IPF. He was diagnosed with lupus last April. He is going quick. I am trying to find anything and everything out about this disease, he is only 54yrs old.
Carmel eloquently responded with:
I just looked at this site because I wanted to know if pulmanory fibrosis was hereditory because I am concerned about a dry cough I have had for many years. It has become a lot worse lately so my doctor is sending me for a Spirology to check for lung disease.
My mother died of this disease in May 2006. We knew nothing about it at all until she fainted 6 weeks earlier and they found she had a collapsed lung. Further tests suspected asbestosis. It was only the autopsy that revealed she had died of Pulmanory fibrosis with large periferal bullae. She was 80 years old and only lasted 6 weeks from first symptoms.
My advise is make the most of every day and appreciate your parents while they are here.
Does anyone have evidence of this being hereditory?
Take Care
carl eloquently responded with:
im 44 was diagnosed with pulmonary fibrosis in april of 2006. was in hospital for week had lung biopasy done.was on oxygen 24/7 they are doing test for lung transplant.my last breathing test showed a big improvement from the increase of meds cellcept and predinson. only need oxygen on exertion and at bedtime can go with out it if just relaxing.i think it is getting better doctors say it could just be a high point to expect it to start going down hill im praying they are wrong and i will beat this and i wont need the transplant. good luck to all of you
gayla eloquently responded with:
RE: #2 My father passed away, Tues, April 1 at the age of 79.
He was surrounded by his wife of 57.5 years and his four children and their spouses. After having Pul. Fib for over 4 years, he is now free of the disease and all that goes with it. He went peacefully.
God be with all of you
gayla
Jan eloquently responded with:
My sister, age 56 just diagnosed with Pulminary Fibrosis, and only has 1% oxygen level. She is on transplant list. Her fingernails are blue and fingers clubbing. Is she at the end, or will she get better?
wendy eloquently responded with:
My aunt died march 15 2007.she also died of severe pulmonary fibrosis she was 67.she never smoked she was a pretty healthy person overall. Never had I imagined she would of gone thru something like this.in 2004 she was told she only had 6 months to live.she fought every minute to stay with us there were numerous visits to the hospital lots of oxigen tanks lots of unanswered questions. She was at the very top of the lung transplant list but when her turn came she was too sick.its fucked up how the sistem works,you have to be sick enough to obtain a transplant,but healthy enough to receive it.does any one really know if this is hereditary, I’m scared for my mother sister and my self!
vicky de lacy eloquently responded with:
My mother (86) has pulminary fibrosis and is at the last stages. I am caring for her but soon it will be necessary to put her in a hospice which she DOES NOT WANT as she wants to die at home. However, I am finding it more and more difficult to care for her on my own. She is also nearly completely blind which doesn’t help matters. We have just found out that her younger brother who is 76 also has it but at the early stages. Someone above said they were told it wasn’t hereditary but I have my doubts about that too. It is a little known disease compared to cancer and emphysema, which is sad, because it is possibly the most horrible way to die and no one really knows enough about it.
marie eloquently responded with:
i really do believe that it is genetic because my grandmother and my aunt and uncle all died from the disease and my aunt was only 38 but my uncle and grandmother were both in their 40s.
PJack70490@aol.com eloquently responded with:
Im seventy-one and have had this for seven, or eight, years. Prednisone has helped,greatly. However, within the past six months I have developed a hacking, mucus-laden cough which tends to be isolating as it limits attendence at programs, card games, etc. I have yet to be put on oxegyn, but don’t think that will help the cough. The only cough medicine that works is Tussionex, which is supposed to be highly narcotic. Do any of you have the same symptoms? I feel most fortunate because, other than my cough and shortness of breath, I feel quite well. Want to be able to be social again, however. Therefore, if any of you have the same symptons, please let me know.
Diane eloquently responded with:
My mother died in late June of this year of Pulmonary Fibrosis. She was only diagnosed in May. It progressed very quickly and within weeks of being diagnosed she was on oxygen 100% of the time. I too am wondering about any genetic cause. So little is known about this disease. My mother had breast cancer and had been on chemo since January this year to try to shrink the tumor before surgery. I question whether the chemo either caused or exaserbated the pulmonary fibrosis. Does anyone have any information about heredity and PF or a link to chemo?
Patty eloquently responded with:
My father just passed away on June 20,2008 from Pulmonary Fibrosis. He was only 69 years young. He was barely diagonosed with this disease in late March of 2008. How we found out was that he felt very sick so my mom took him to his cardiologist. The doctor ran a test on his heart and it showed that he had, had a series of short attacks. He went into the hospital to have ” his arteries cleaned” but the doctor found them to “be clean”. So, it was then that he had a pulmonologist take a look at my dad. After a lung biopsy the doctors told us that he had pulmonay fibrosis. By this time he was already on a ventilator, because he was losing oxygen fast in his body. He remained in the hospital for 4 weeks, then was sent home with an oxygen level in the 90’s. At home his oxygen level was dropping little by little. He ended back in the hospital after 3 weeks at home. There they told us that if they put him back on a ventilator then the possibility would be that he would never come off. Two weeks after the ventilator, they had to do a tracheostomy. During my father’s stay in the hospital he was concious the whole time and knew what was happening to him. The doctors told us there was nothing more they could do,the steroids weren’t working. Within the time he came to the hospital the second time to 4 weeks later the disease had spread to most of his lungs, he had roughly 20% of healthy lungs left. KEEP READING ONLY IF YOUR STRONG ENOUGH TO KNOW HOW HE DIED! On the day he died he had an episode where his oxygenation level dropped to around 60. The doctors tried to raise it, but were only able to do so to around 80 (previously he had been in his 90’s). My dad became very agitated with all the work being done on him, that his blood pressure went up. The doctors gave him a sedative to relax him and sleep him, my dad didn’t want this, because HE KNEW that he would not wake up. Unfortunately, his oxygen level only kept dropping, as with his blood pressure. His eyes were already “fixed and dilated” The last reading of his blood pressure was at 45/20 (or about). After that they couldn’t get a reading because it was so low. By this time his kidneys had already begun to fail, he had, had no urination since early afternoon. Then my dads color began to change, he was turnig slightly yellow. My dads heart rate had been erratic for some time, reaching into the high 100’s and then dropping again. At one point his heart went to 100, steadied and then just started dropping. When it hit low he suddenly flat lined then spiked again then flat lined again. The sound coming from the heart monitor, when he flat lined could be ,the most horrific sound I have ever heard. My dad looked peaceful the whole time, from the sedation he was getting. He did however die with his mouth wide open, this I believe was his body’s natural response to getting air. He had a complete body shut down, his heart was the last to go. Seeing my dad, no one can tell me that he didn’t die gasping for air. This has got to be the most horrific disease, that could be. To die from this disease is not only terrible for the person, but also for the family. I don’t wish this experience on anyone.
Thank you for reading my story, it has been self helpful to be able to tell it, especially to people who know the disease. You are the ones that know what I had to go through and how I am feeling.
gayla eloquently responded with:
****** Do not be afraid of hospice care*******
they come to the home….my father did not want to go to a nursing home. My sibling, and my Mother are so proud that he was able to die at home. In fact hospice had been helping take care of my father for two years, they are awesome!!!! When we put dad under their care, they brought out a hospital bed, wheelchair, bandages, diapers when it became necessary, and much of his medication along with breathing machine and treatment . They visited him several times a week. They let us know when dad entered his last months of the illness (they knew the signs) This cost my parents nothing,and they have assets!!!!! Hospice let Mom know when the end was within hours, that gave all of us kids time to get there (2 of 4 kids from out of state).
We held Dad’s hands and calmed him when he became adgitated. We were all togheter as a family at the end. I had never been with anyone when the actual end came, I was glad I was there, it was not at all gross or morbid. Yes, my father probably did sufficate but he had been so for most of the 4 yrs after his diagnosis.
It is a fact, we will all die one day and chances are good it will be cause by some sort of illness. My family and I are truly thrilled that Dad is no longer suffering, he is breathing easy!! My father went through much the same as Patty’s father did, in fact she described it very well. My family and I had 4 years to prepare ourselves, not that we all did not experience denial. Patty you and your family did not even have time to get a grip on the diagnosis before your father was gone. I am sorry for your
loss.
Bless all of you and be strong.
PJack eloquently responded with:
I previously wrote about my chronic cough–to see if anyone else was experiencing this. In the meantime, I have gone to my doctor, and it seems that I have contracted pneumonia. I’m actually delighted, as it means that this is something treatable.Moral of story–don’t wait–go to your doctor.
Sandra Shakespeare eloquently responded with:
I have had 4 stomach operations on a very bad hiatus hernia, and 3 years ago I had thorasic surgery to trry and repair the stomach as it was completely in the diaphragm. Consequently, over the last few years I was diagnosed with a collapsed lower lobe of my left lung, which had become fibros. I now have pulmanory fibrosis of both lungs. The left lung is worse than the right one. I am in a state of - No that is wrong - I want to fight this. I keep getting coughs, terrible headaches and at present do not want to start taking steroids or oxygen. I wam walking about in a daze, I have apparently had this for some 3 years now, or more, likelihood of survival over five years looks dim. Where do I go from here? Dont know. Spending my cash, enjoying myself, writing a book that Ive been working on for years and finally trying to finish a project in France on a longere that was bought some 6 years ago. Do I jig up and down and ask to see more specialists, do I have a lung transplant, I buggered if I know which route to take. I feel that my problem has been caused by the surgeon who performed my last operation who did not pick up the collapsed lung in the first place. Too late now, I suppose. tried to take legal action, with no avail. So back to the drawing board. I am a fighter and will do my utmost not to die quite yet. Any suggestions out there? Dont be too negative pleasse, trying to keep positive. Sandra.
Linda eloquently responded with:
My stepmother passed away on Jan. 22/08 from this. She suffered terribly, but never complained. She just wanted it to be over. She was on oxygen 24/7. They say 3 - 5 years but she was diagnosed last summer. That didn’t give her or us much time to prepare for this. It is a terrible way to go. The Dr. tested her for many things, but only tested one thing at a time. Hopefully this didn’t make any difference. Lost a lot of time. It all started with a little dry cough. We sure do miss her.
kirsty eloquently responded with:
Hi my dad died feb 2007 from idiopathic pulmonary fibrosis he was aged 59 ,he spent 10 yrs trying to get a diagnosis from are local hospital in the end my mum pointed out the shadows on his lungs and asked them to be compared with previous x-rays and she pointed out the spread of the shadow my mum demanded he was referred to the royal brompton hospital in London there he was diagnosed and put on the lung transplant list sadly after being the bravest person i know he died of heart failure. I’m 37 and i have allergies like my dad and symptoms he had ,we have started to look at my dads relatives and his niece has just been diagnosed with the same . If i can hlp in anyway please get in touch kirsty
Shannon eloquently responded with:
Hello, My Daddy was diagnosed over a year ago with “IPF”. He is getting worse, the shortness of breath and the dry hacking cough is really irritating him.He has stopped going to activities due to his cough. He has terrible mood swings. He cannot even go upstairs without giving out of Breath. He turned 70 in September. Anyone have any ideas? Any advice would be great.
Warm Regrds,
Shannon B
