What's going to happen to me?
Posted , 14 users are following.
I live in the Monterey Bay in California, so hope I can crash in on the UK folk here. It seems like a nice group. I was diagnosed with IPF around July of 2016. I am 67 years old. My condition went from no symptoms to a horrible crash after a lung biopsy, and a kind of recovery but with the certainty that this is a one way street. Estimates of survival time vary wildly depending upon treatment. I am being tested soon to see if I qualify for a lung transplant.
Here's the rub: Is a transplant worth it? The quality of life post-transplant appears to work for some people, although again, the survival time is very unpredictable. Oh dear, what's a person to do? Indeed, that is the question. Honestly I absolutely hate the idea of a transplant. Perhaps I not as attached to living as others are. That is not a death wish however. But I do wonder how much fuss one is to make in "hanging on." I recently read the book "Being Mortal" by Atul Gwande, a doctor who watched his father, also a doctor, struggle with "when to let go".
I am looking for some discussion on this that, well, sorry, doesn't rely upon God, or "blessings" nor even so much "have hope".
IPF is pretty isolating when on oxygen 24/7. Getting around with an E-tank is a drag, no pun intended. So if anyone wants to bank around on issues like the disease itself, mortality, pain, guilt, fear, sadness and all the rest, I'd like to have at it.
es
0 likes, 47 replies
pj94478 eric87817
Posted
I'm not from the U.K., but I do have some experience with this. My grandmother, aunt and mother have all passed from this disease. So I think about my mortality all the time. Worried it's genetic. I recently lost my mom in march 2015. Hers went relatively quick. She got a cold and couldn't get rid of the cough. She coughed for about 6 months so she decided to go to the doctor. After she was diagnosed, she rapidly declined. I may be able to answer any questions you have.
eric87817 pj94478
Posted
Hi PJ
I very much thank you for responding to my query.
I am surprised and sorry to hear about IPF in your family. I trust you have looked into the genetic issue already. Your mother's experience, is interesting with the speed in which the disease progressed. I can see how this might especially concern you.
Thinking on things right now, I am surprised I even have this question in that I'd expect my Dr. would have already informed me. There is a lot I want to know, but how about these four items for now, and feel free to ask me anything you want that might be important to you:
1) Is the progress primarily an increasing need for more oxygen.
2) What medications did she and/or the other members of your family use?
3) Accounting for medications, what did the progression look like? Mostly a need for more oxygen? Fatigue? Appetite? Cognitive abilities?
4) Were you the primary caregiver? If you are in the US then maybe you can share a bit of what that involved, and if living elsewhere what that the caregiving process?
That is enough for now. Let's see what the other's have to say.
pj94478 eric87817
Posted
Hi Eric,
Here are some answers to your questions.
1) Is the progress primarily an increasing need for more oxygen.
From my experiences, yes. My mother went from no oxygen and just coughing, to only oxygen at home, to carrying a small tank with her, to finally being stuck at home on her big oxygen machine. Eventually, that didn't even help her anymore, with it up all the way. Her o2 levels would drop down in the 40's just walking a few feet to the bathroom. She was then admitted into the hospital and bed bound, off and on.
2) What medications did she and/or the other members of your family use?
The main medication that was perscribed to my family was prednisone. My mom had a nebulizer she used at home, which helped a little at first, then not at all.
3) Accounting for medications, what did the progression look like? Mostly a need for more oxygen? Fatigue? Appetite? Cognitive abilities?
Starts out with coughing and fatigue. Then the severe need for more oxygen. My grandmother fought for 6 years. I remember coming to her house after school one day and her lips were black. I thought she had been eating licorice or something. She hadn't been. She couldn't figure out why she was so tired all of the time. And her cough was terrible. My aunt fought for about 3 or 4 years. And lastly my mom only for about 2 years.
4) Were you the primary caregiver? If you are in the US then maybe you can share a bit of what that involved, and if living elsewhere what that the caregiving process?
I was the primary caregiver for my mom. She wanted to keep her independence, so I didn't live with her. Luckily, I only lived a few blocks away. Once she had to quit working, I would go to her house multiple times a day to check on her and do things she couln't do anymore, like cleaning. Then it got to where she couldn't even get to her bedroom anymore due to the fatigue and her o2 dropping so low. So she opted to camp out on the couch. I would come early in the morning and help her with her meds, feed her, do whatever else she needed and spent some time with her. I'd go to work and check in throughout the day, feed luch, etc. Same after work. Dinner, meds, chores. It was really hard for her, becasue she was such a work-a-holic. She ran the computer lab at a high school and would go right to a desk clerk job at a motel. Sorry to ramble. Just feels good, yet painful to let this out. even though it is bringing tears.
She was admitted into the hospital here in our small town twice. Then finally, on her birthday, they flew her out to Phoenix. That was March 12, and she passed on March 29th. She was so exhausted from trying to breathe.
Thanks for listening, and if you have more questions, please ask.
eric87817 pj94478
Posted
I honestly don't recall if I replied to this already. I am not familiar with how the threading works on this site.
So was there any interest or discussion about a transplant? This is kind of my biggest dilemma right now.
The progress as you describe it is pretty much what I envision. Did you consider hospice? I am looking into both hospice and paliative care. And this is weird as I am waiting for a transplant which I kind of don't want but figure I'll play along and not burn any bridges just yet. Fortunately my wife and others will respect my choice either way.
So thanks again for sharing your experience. And, while I don't pray, I do have you and others here in my thoughts.
es
linda80939 eric87817
Posted
Hi Eric,
What can I say but welcome to the UK eric.
I was diagnosed with pulmonary fibrosis in September 2015 and until then had no idea of this disease was or we ad.
I'm not sure if you know why you have IPF but I actually do (though I know that a lot of people don't know why they have this disease)
So obviously I don't have any idea what is going to happen to you but I'm happy to share experiences, fears, hopes and( what I believe i
Quality of life over quantity.
My PF is from having rheumatoid arthritis,diagnosed in 2002, After 13 year's of managing very well by injecting myself weekly with anti TNF injections I then started
to suffer breathlessness, chest pains and chronic fatigue. After repeatedly complaining about my symptoms it took 2 year's to finally have tests to find out why I was becoming so ill.
In September 2015 after extensive tests I was diagnosed with pulmonary fibrosis. In the UK if you look this disease up you will find it says we have a life expectancy of between 2 and a half years to 6 year's
I was really low when I first was diagnosed but I'm much more positive now. It was really difficult reading the info but I now feel stronge
r amd though I worry about my children ( 17, 31, 35 ) I am dealing with it well.
Asamily my family makes jokes,which I love , it's our way of coping. And I'm so lucky to have all 3 of my children and my husband around,and also my beuti
eric87817 linda80939
Posted
Hi Linda,
Thanks for responding. It's nice to be in the UK, if only virtually. Only got to visit once.
Hey, I hadn't heard of a relationship between IPF/ILD and other diseases and their medications. I is a bit more complex than just "getting a disease" I guess.
I envy your family situation. My birth was something of an accident for my parents as they were pretty old when I was born and my siblings (1 of 4 still living) were all much older than me making communication a bit difficult. I do have a nephew who is probably my best friend. Besides him, my wife and one other person, I don't have hardly any friends that I communicate with regularly. So your having a multi-generational family around sound terrific.
Yes, I know the shock of discovery when I started reading about IPF as you did. Hell, I was ready to get my little end-of-life pain kit together etc., and completely freaked out my pulmonologist! I guess I was getting a bit ahead of myself. Then again...
Your experience of having symptoms for two years before proper diagnosis is something I have heard others mention. Indeed, I had a chronic dry cough for well over a year that my GP did not pick up on. Dang! I sounds like there is indeed a lack of awareness of this disease. It is listed as a "Rare Disease but still.
I'll let you go now. Feel free to ask anything of me as well.
Best,
es
maureen57865 linda80939
Posted
Hi Linda, I was reading some of the comments on PF and I noticed that we both have RA. I am 70 in June and have had RA since 2012. I was diagnosed with Pulmonary Fibrosis in February and have an appointment with Thoracic doctor in May.Everything I know about pf is from reading on the internet. We're you treated quickly after diagnosis?When time may be short it seems cruel to keep patients waiting so long for treatment.You are so fortunate to have you family to support you, very best wishes, Maureen.t.
epictetus1939 maureen57865
Posted
Hi Maurine
Nintedanib will probably slow the rate of progression by about 50% so well worth having as soon as possible. It costs £30,000 per year and you can only get it on the UK NHS if your lung volume is 80% or less predicted for your age and height. When you have you spirpmetry test make sure you stand up straight when they measure your height, dont take too deep a breath and dont try too hard when you blow out. The will take the best of several measurements so ask each time what you get. Make sure you dont let them get a reading above 80% or you wil not get treatment.
Good luck let us know how it goes. There are many thousand people in the UK with IPF who do not qualify for treatment.
neville93106 eric87817
Posted
I am 82 years old and was diagnosed with IPF four years ago. I have been on oxygen 24/7 for two years which is a bore because I can't get out of the house. Fortunately my friends visit me for discussions, book club, etc. The important drug is perfenidone which slows the progress of the disease greatly. You may find that the "Alternative" medicine SERRAPEPTASE helps.
I decided at my age not to even consider a transplant - We all have to die some time, and to add on a couple of years at my age is not worth all the pain and stress of a transplant. I have a lovely wife who looks after me.
good luck, and enjoy your life and friends.
Neville
eric87817 neville93106
Posted
Hi Neville,
I am using Ofed (nintadanib) for a nearly two months now. It claims the same thing, of slowing the progress of the disease. Hell, I'll take some more time, eh?
I am SO envious that you have friends to visit AND discuss books. I'm pretty isolated. Like you on O2 24/7 but only have a couple of people near by to call friends. So it puts a lot on my wife. I don't know where you live, but in general American society has become extremely atomized. So mine is not that unique a situation. In fact, your's might be the exception! I saw a documentary a bit ago done in England about loneliness. It was very interesting in how the condition of loneliness is so multi-generational. Sadly it did not include much in the way of stats, so I wouldn't generalize much from it. But the topic is a bit of a tickler for me.
YES, about the transplant. Thanks so much for commenting on that. As you say, the "pain and stress" of a transplant makes it a more difficult decision than some might think. The "years remaining" issue blurs choice-making as well.
Again, thanks for sharing with me. I'll sign off. Oh, I'll look in to the Serrapetase.
Finally, just what books are you in to?
e
epictetus1939 eric87817
Posted
Hi Eric and welcome to the UK!
Thank you very much for your post which raises many issues close to my heart. I applaud your attitude to supernatural beliefs. Whilst a "faith" seems to help some people I think it only causes confusion which is not what we want when we are trying to adjust to the reality and finality of death. Call me a mad scientist if you like but I plot graphs of my FVC and gas transfer with a view to finding out how long I have got so I can spend my time (and money!) optimally.
I would welcome any tips on how to plan the final days. I really dont want to die in hospital because I think I can be better looked after in my own home with all the comforts I am used to. Nicer too for those around me. I dont know what technology, services etc I will need but I am sure a good plan is important.
I dont think I would qualify for a transplant because I am already 77, only mildly breathless and on Nintedanib and hopfully have a number of years yet. I am not fearful and when it is time to go it is time to go I just want to maximise pleasure for me and those I love while minimising pain. The teachings of the stoic philosopher... Epictetus! I will use this approach if ever I am offered a transplant.
.
paul_77849 eric87817
Posted
Hi eric. Im 33yrs, diagnosed about 2yrs ago, but was breathless for a few years before that, my mum passed away at 49 from camcer but was secondary to ipf it was difficult to get diagnosed for me because of my young age, was repeatedly told i had asthma and fobbed off with inhalers, funny though my gran diagnosed me just by looking at my fingernails, then i told them to look specifically for signs of fibrosis and they picked it up. I am NOT looking at a transplant and am NOT on any oxygen or medications. my view is quite like yours regarding hanging on even at my young age although my family think im selfish, although i have other reasons for refusing treatment wich I'll elaborate on if u wish to discuss further, my main symptoms are chest pains and pressure in the neck artery (pulmonary hypertension) the breathlessness i can deal with at the moment and as long as i rest the symptoms are manageable at present , i just feel so tired and weak all the time. My wife is a super hero she does everything for me including emptying my urine bottle, if i didn't have her i dread to think how i would manage....ok enough for now sorry for the long winded reply!
eric87817 paul_77849
Posted
RE: "... it was difficult to get diagnosed for me because of my young age, was repeatedly told i had asthma and fobbed off with inhalers, funny though my gran diagnosed me just by looking at my fingernails, then i told them to look specifically for signs of fibrosis and they picked it up."
I have noticed that it is more the general practitioners that need education on IPF and PF and COPD in general. It was about two years of piddling around with cough syrups and such with my GP before someone I guess looked at the x-ray or CT correctly. Sounds like a common story amid these pages.
"I am NOT looking at a transplant and am NOT on any oxygen or medications."
Not wanting the transplant is not necessarily the same as not wanting oxygen, in that the O2 at least gives you some ability to help yourself and participate in life until the big wind-down begins. That said, I applaud your choices either way you go.
"My view is quite like yours regarding hanging on even at my young age although my family think I'm selfish, although I have other reasons for refusing treatment which I'll elaborate on if you wish to discuss further"
Yes, elaborate by all means. Sounds like there is something deeper going on with you.
As far as your family considering you as selfish, wow, that's a heck of a thing to endure. Ironically, it sounds like those family members need some guidance or therapy or something. You sound OK.
"...my main symptoms are chest pains ... I just feel so tired and weak all the time."
I am not there yet. This thing is developing slowly on the outside and quickly on the inside. That is, it looks to be progressing fast enough to the doctors even though I am still getting around quite a bit - albeit on O2. Hell, I can wash the dishes even. Also I have been doing some physical/pulmonary therapy which seems to retard the downhill spiral. I can share some of that info if you want.
"My wife is a super hero she does everything for me including emptying my urine bottle, if i didn't have her i dread to think how i would manage....ok enough for now sorry for the long winded reply!"
My wife too is the hero in all of this. The "mama bear" can be a bear at times, but does help me both physically (carrying E-Tanks around and the like) and logistically with dealing with doctors, testing, and data overload. She does rather p*ss off anyone that she thinks is slacking in their responsibilities for my health though. I have to kind of cover for her on the sly once in a while.
But your statement about changing the urine bottle tells me more clearly of your current status. After my biopsy (the big one) I had to stay in bed and pee in a bottle and take a rest after walking ten feet to the bathroom etc. That passed. I am pretty active considering things. I do take a walk and do some exercises with therabands (big rubber bands).
Now, for the nitty-gritty. I'll just start this part and if you are interested and have the energy we can continue. First, I like Sartre and especially Camus (whom I have not really read) who state that the only real question regarding one's existence is whether to commit suicide or not. I think this is true. It seems all other decisions are mitigated by other people and other events. This deserves discussion. As I spend most of my time with my cat and a laptop, I don't get a lot of feedback on that, but the cat is still the best example of existential resolve. Don't you even envy animals? They are not encumbered with the tragedy of a future. That is, a future that ends in death. I'm reading (slowly) a good book on this right now.
Your turn,
es
PS: I'm OK with other's chiming in here if you are. Although the threading of these discussions is a bit limited.
CarlosIR eric87817
Posted
Thanks for starting this thread...the title just catched my attention as the question is what I have had in my mind for some weeks now!
I am 57, I live in Mexico City with my wife Olivia and three children 25,23 and 20.
I have just been diagnosed this morning with PF after lots of tests and medical revisions at the INER (National Institute for Respiratory Illnesses - Mexico City).
My problem started around five years ago, with shortness of breath and cough.
The comments that you and others have mentioned about GPs not really able to diagnose properly this decease is just correct, I was misdirected by even a Neumologist who told me my cough was coming from irritation due to heartburn.
In March, i spent 10 days at the hospital and was able to talk to ther men which had PF in more advanced stages, some were just hooked up to tubes and could not even walk.
I am still doing pretty good...I am not using O2 yet, and do not have any simptoms now, and want to learn and prepare for the next phases. This morning I was given medication for first time basically Prednisone and other stuff...and have received appointments for Rituximab.
On my way back from the hospital I got just this question in my mind:
What is going to happen to me?
I am still confused and are not ready to start this part of the journey!.
Thanks to all for sharing your stories, some have been very touching and interesting.
Regards
Carlos
eric87817 CarlosIR
Posted
Hey Carlos!
Hope your day is going well. Mine is off to a good start after three days of being tired all the time.
Your doctor that said your condition could be "irritation due to heartburn." interests me in that PF, or IPF in my case, seems to be related to acid reflux which is in effect heartburn. More specifically I have seen GERT (Gastroesophageal Reflux Disease) associated with IPF. I have this. Hopefully these doctors will get on the same page soon to help others in time to mitigate PF/IPF's progression.
That you got to speak to ten other people with this disease is terrific. Maybe painful, but still a great thing. Here in the Monterey Bay CA I go to Stanford Medical Center (75 miles north) and they have a meeting of some kind like that, but only once every TWO MONTHS! That is not much help, so right now I am getting help from you and the rest on this site.
So "what IS going to happen to me"? I am still in the dark too. IPF tends to progress in several different ways, such as a slow even progress to the "end", and a fast pace, but more likely, or so it seems, there are what they call "exacerbations" in which you are going along at a smooth rate and then drop suddenly (worsen), go along some more and drop again. It is a crap shoot. So making plans is really impossible. It is a day-to-day thing.
I was going to share links on IPF progress but am sure you can do so on your own, and besides, I haven't really found ay one source that is as definitive as I want. And the past decade has brought a lot of changes so some of the material online is a bit out of date.
So let me know, if it is OK, if you are talking IPF or PF.
PS: Being a sociology teacher, I love graphs and charts. Here is one if the image inserts properly:
epictetus1939 eric87817
Posted
I wish doctors knew more about the relation between IPF and GERD. I have had GERD for perhaps 20 years but it was diagnosed as post nasal drip for most of that time. I insisted something was done about it and then it was diagnosed as GERD. I was getting chest pains cough and lost voice. The moment I took Lansoprazole all the symptoms stopped though I do get relapses and I cant get off the Lansoprazole. I have been told the GERD caused my IPF which I have had for at least 4 years but it was only diagnosed about 8 months ago. I am having Ofev for the IPF but I am still wondering if there is more I could do.
It is not just acid which is refluxed. It is also a digestive enzime called Pepsin and Bile. Pepsin has been forund in the lungs of people undergoing acute exacerbations of IPF. I dont know if Lansoprazole controls Pepsin and Bile as well as acid. I suspect not. I am seeing a Gastro person soon and I hope to get a better understanding of what is going on. I want to have my lower esophagal sphincter properly evaluated. Thanks for your posts.
eric87817 epictetus1939
Posted
Terrific information on GERD. Since the "Idiopathic" part means "unknown" it sounds maybe things are changing, at lest definitionally. GERD "causing" sounds very intersting. Also the pepsin being found in the lungs is new to me. Dang. Need a more focused website or a special secion on this bit.
I use Ofev too, and have the classic hassle with diharrea, mitigated with imodium. Not great. Have not found a perfect balance yet, and am reluctant to go to Perfinidone due to the three times a day dosage routine. [Advice from anyone reading this appreciated.]
michael81765 eric87817
Posted
Hi Eric. I was diagnosed with IPF in Feb 2016 and over the summer I was prescribed with Nintedanib which I took for about 5 months before getting blood clots on the lungs. I was put on blood thinners and because of the risk of bleeding was unable to continue taking Nintedanib but prescribed perfenidone instead. I fully understand and sympathise with you on the side effects of the Nintedanib. Going to the loo 3/4 times a day is no fun !. I have found Perfenidone easier to take(even allowing for 9 pills per day) and have not experienced any stomach problems. Having said that you must use factor 50 sunblock as main side effect is skin reaction to uvf Rays. I also do get quite itchy but moisturiser helps. Hope this info is of some help. I am 62 and about to be assessed for transplant potential. It's a hell of decision to make!