[Bill]

I have ipf and in my 11th year. I am 80 years old with no transplant. So, I guess it’s anybody’s guess as far as prognosis goes. I am on 8 liters of oxygen. Pretty much close to the end of the line.

 

[Bill]

hi @mark-koziol ,
Don’t be sad for me as I have a positive attitude because it is what it is.
I just take one day at a time and work through those things that need attention to have the best quality of life I can without dwelling on the disease. But thank you for your concern. I have a great support group in my family and friends.

[Bill]

I too am experiencing a rise in my pulse rate. It has always been 72 and is now steady at 85 resting. We won’t talk about how it goes crazy when I move around. I am thinking it is the natural progression of the disease. I will be going off of esbriet at the end of the month as in my final stage there is little point in taking it, so I will see what the difference is then. Weight loss is definitely an effect of the disease as I lost 37 pounds during the process. although surprisingly I gained 4 ponds back. I didn’t know I could do that. I drink an ensure daily to combat brittle bones. My hospice nurse said the top right of my lung sounds fine so I guess that is what is sustaining me for now.

[Bill]

Hi Jan ( @janriche )
It is amazing how our symptoms and thought processes are so much alike. From the liters required to do daily routines and the closeness of our age (79.,80 on July 4th  if I make it). I also do not dwell on my IPF. For instance, my day consist of crossword puzzles, crytoquotes and jumbles.  I watch some TV but most are nor worth it. I spend my days trying to adjust medications to get consistent with the results. From clogging nose to digestive problems. I am slowly figuring it out.
I smiled when you said you were not afraid of death but all of those things that come before it. That is me to a tee. I also am to a point where any exertion results in no energy and lower o2. I also loved to cook and adjust recipes to taste better. I became famous for my chili and creamed beef on toast. ( the military nicked named it SOS,Stuff? on a shingle).
My wife and care taker is learning my recipes. She waits on me hand and foot.
You might want download the universal puzzle from the internet. I believe my mind has been kept sharp because of the brain exercises.
When you wrote that talking about giving up Esbriet I again smiled as in another  response I said the same thing. What’s the point. Well, since then my hospice doctor recommended I quit them so I talked to my primary care doctor and he said that they symptomatically don’t do much. So quit them. I have a call in to my pulmonary doctor but I am sure he will say the same thing. I will finish my last bottle and then won’t order anymore. I teased my doctor by saying, “isn’t that a form of giving up”?
Thanks for the response. Maybe the man upstairs will introduce us. 🙂

[Bill]

Gary, ( @gary-kitahara )
wow!  I will definitely Check all this out.What liquid were you talking about? I did try putting water with the concentrator but it cut the flow by 2 liters.
I will get back to you and let you known what I found out. If you talking about liquid oxygen there is no one in our area that services it. I know you can get more flow with the liquid oxygen. But your suggestions definitely excites me. Thanks.

[Bill]

It looks like I cannot use any of your suggestions as there is no medical liquid oxygen for miles and miles and the dual concentrators to still only gives me 10 liters.
Thanks for your input.

[Bill]

Thank you Mark.
Katie,
My wife tried to use eucalyptus and peppermint treatment and I didn’t use it but once and then not not much so I will try again with a little more gusto to see if it works better than my current treatments.
Yes I do struggle with my nose being dry. I use a tube of gel that has aloe in it. It is calle AYR saline and nasal gel.
Yes I have tried the morphine but it constipated me so bad I had to quit it.
My hospice nurse came today and recommended I try it with a lower dosage and take it with a laxative. So what do I have to lose. I will give it a shot also. One more note I had mentioned in another blog that if I am so far along with the disease why bother taking the perfenidone (Esbriet) as it just prolongs the inevitable when I am at a point where every movement creates low oxygen. Well the hospice worker said that the doctor said I should quit taking it. I am calling my pulmonologist to get his opinion.
I will let you know how it goes with eucalyptus.

[Bill]

Thank you Katie for your kind words.
I seem to be stable right now and the only problem I have controlling is my nose clogging up. If I cough and have nose problems I turn to Dayquill. If I do not have the cough I have been using Sudafed, My cough has subsided substantially since I turned my oxygen up a notch which is high as I can go at 9 liters. Both seem to work. I have tried Musinex which doesn’t seem to help. I am not totally sure but it seems when I take Advil my breathing is a little better. I only take them on an as needed basis. I am doing everything I can to stay away from Morphine because of the constipation problem.
I only post these things so that others may benefit.

[Bill]

I am continually encouraged that so many studies are being done on the behalf of IPF.
I am truly happy for those that will be able to benefit from them.
Unfortunately it is too late for me as the studies last for years and I only have months.
But it puts a smile on my face knowing that one day there will b a cure.

[Bill]

Okay, here is a morbid thought.
If my breathing is such that I am unable to walk across a room when my oxygen drops off into the 70’s and I am basically home bound, should I really be taking a pill to slow down the progression?

Just saying.

[Bill]

This is a new unexpected experience of end of life processes. I am 79 years old and have little doubt that I am close to the end as my oxygen requirements are reaching more than the oxygenators can handle.
I was diagnosed with ipf with a biopsy in 2010. I joined a study group for a year for the use of perfinidone(esbriet). I have been taking it since.  It is supposed to slow down the progression. I cannot conclude beyond any certainty that it is working or not as we are all different when it comes to how we react to our condition or medications.

First of all I am not a downer kind of guy and am not afraid of dying. I try to just ride the progression out without much regard to the end of life consequences and take them day to day and deal with it. Thanks to Megan and her kind post on her dad.
But alas, there is a new twist I did not see coming. I try not to be materialistic as they are just “things” until I realized how connected I was. My IPF was slowly chipping away at my ability to do things as well we all know happens.  I had to stop  activities that I dearly loved. One by one my traveling, walking, golfing, bowling, piano playing, making out with my wife (that one hurt) were being eliminated from one who was a very active individual.
When I gave up these things I thought I handled it pretty well until I started selling off the equipment. When I sold my golf clubs it was like a part of me was removed. Yes they are only golf clubs but with those golf clubs came many experiences that were attached and I was sad. The same goes for my bowling equipment and the piano. I no longer can remember the music. And I was sad.
When the last item, the piano was sold I actually shed a tear realizing that this terrible disease is chipping away a little at a time not only my ability to breath but my mental acceptance of the fact that I will never be able to do theses things again.
I am not suffering with despair or depression because I will accept whatever comes because I have the support of family and friends and still put things behind me and use my god given sense of humor to keep me positive and to keep the people around me from feeling sorry for me.
Thanks for listening.
Bill

[Bill]

Sorry Charlene. Chocolate makes me cough. (I eat it anyway).

[Bill]

Hi Charlene,
I wanted to get back to you  on my Canada trip and my coughing problem so that others may benefit or not.
First of all the only time I got through  Ontario, Canada was on a trip to Texas from Quebec across the Queens Highway. My favorite places in Canada was Halifax and Prince Edward Island. On the west coast I liked traveling through Canada to Alaska. I loved it all.
As far as my coughing goes, I am at the point of my IPF that I am about to fall off the cliff. But meanwhile, as you know I was having trouble with constipation using morphine. I was so bound up it made my lips pucker. So I got off of the morphine which has greatly improved my disposition as it was.
To combat the coughing and runny nose I alternate between dayquil and 1 sudafed pill with 600 mg of ibuprofen with plenty of cough drops in between. They seem to help although I only take them twice a day as I do not know the consequences of doing more of one than the other, I seem to do better with the Advil and Sudafed and I do not have
the constipation problem anymore. My cough seems to subside until the pills wear off.
At any rate that is my story and I am sticking to it. I am at 10 liters of oxygen which is max on my machine so one more hit and I am in deep kimchi as the American Military says. P.S. I do not take nightquil because of the alcohol content as I believe any alcohol in the blood takes away from the oxygen.

[Bill]

Thank you for the in-depth  report. It  was extremely helpful to me as I have ipf with very similar conditions as your dad had. When one has a terminal disease it seems we wonder what the end will be like. The progress your dad had is what I am going through right now. It I move my lips I breath hard. Okay a little exaggeration but I do find it hard to speak sometimes.
I am not afraid to die but the possibility of my organs shutting down and making a mess concerns me but I guess your dad had a heart attack and I can live with going out that way. (sorry my sense of humor kicks in when I least expect it).
I also am concerned with people bathing me and the delirium that may occur.
I , like others in our situation, do not want to be a burden. I do sit a lot but also move around and take my own showers and dress myself even though it causes my breathing to increase so I take it slow. I dread the thought of someone doing that for me.
I am at a point that any exertions whatsoever causes a great off of o2. I am presently at 10 liters.
I combat nasal problems with nasal sprays and use cough drops, Dayquill and some times Sudafed and Advil which seems to help.
I have a chronic random coughs that gets violent and lasts several minutes even though my o2 is in the 90’s. I cough when I am exposed to cold food, drinks or low temperatures.
You did not mention about your dads coughing.
Lastly, I am reluctant to call in palliative care as my wife and daughter help me, but again am I putting too much on them?
Again, thank you for your detailed report on the last days. It really helped to ease my mind on some level.
Oh, how well did he do with the morphine?

[Bill]

It sounds close to your banana ice cream recipe. So are you a banana addict? 🙂
I will try it.

 

[Bill]

Thank you Charlene.|You do good work.

[Bill]

My PFT tests show a decline every time .I am now at 8 plus liters of o2. I reach a plateau and stay for awhile then I decline some more. So it doesn’t stop it for sure but slowing it, maybe.
As far as my activities, I do crosswords and crytoquotes and jumbles daily and work on putting puzzles together. The puzzles are the most helpful because I am completely engrossed and forget my affliction.
It is not all a downer as I am not in any pain except when I cough and I think about people that are suffering way more than me.
For instance, I still have my arms and legs and I am not deaf and dumb or blind. I do not have cerebral palsy, alzheimers, or dementia. I do not have parkinsons or meningitis.|
I do not have cancer.
I have seen individuals in wheels chairs that cannot lift their heads and are wheeled around and have to be hand fed clothed and bathed.
All in all, feeling sorry for myself is the last thing on my mind. I just take it one day at a time.
When asked how I am, my response is “not as good as I was but not as bad as I could be”.
Thank you for your work in this forum . It helps when I get to express myself and I am sure others can relate.

[Bill]

The oldest that I found for transplants  is 75. As I am 79 I am past the age of optimism. 🙂

[Bill]

Hi Paula,
I wish you the very best in getting the transplant. I wasn’t given that option although I am in good health otherwise. It is because of my age.
You are doing the right thing as far as exercise goes but here is what happened to me.
I weighed 165 which was a good weight for me even though my height   was 5′ 11.”
They told me that since I required more oxygen to keep up my heart worked harder and burned more calories. Also my appetite is not good. Double trouble. I have on occasion got down to 72 oxygen but my fingers never turned blue. I do not know what that is all about. Anyway, keep a positive attitude and as you have set yourself a goal…Go for it. 🙂

[Bill]

Hi Charlene,
I am curious as to where you are in Canada.
I have been up both coasts while full timing in an RV and loved Canada.
Update on my coughing. The morphine is working but causing constipation so I am experimenting with doses and laxatives. I cut back on the dose amount from 1 teaspoon to half just twice a day. The prescription is for 1  teaspoon every 4 hours. If I can use less and still have cough relief maybe it will relieve the constipation. I am passing this on to maybe help others with the coughing although I know we are all different it may help some. I will update you on my results. Megan has been a great source of information for me.

[Bill]

Wow!
Megan you have made my day.
Because of your input to this forum I decided to try the morphine regime.
It is a low dose of which I take 1 tsp every 4 hours.
This has reduced my coughing by 90 per cent (An educated guess) and when I do it is of shorter duration and not as severe. Even though my shortness of breath has not changed as  it seems I am breathing easier. So,thank you,thank you,thank you.
Also I went to pulmonary rehab and they showed a  dvd of that talked about pursed lips. It has never worked for me. The rehab was mostly geared toward COPD and not IPF so when I watched the show it said that COPD is different than IPF in that IPF is scaring of the aveoli and COPD is inflamatiion so IPF needs more oxygen and not more CO2. Which I took to means that breathing through the mouth and the nose is better. Unless I misinterpreted it I know the pursed lips thing just don’t work for me.
Again thanks you have helped me and I am sure other members of this forum.

[Bill]

Oh I forgot to mention that UCD in Sacramento Ca is having two studies. One for hypertension and the other for Bacterial.
Also they have a new device on the market that gives a blast of oxygen when it is needed. I am researching these things as of now. I just found out Wednesday.

 

[Bill]

Hey Charlene,
It’s Bill again with an update.
I am in pulmonary rehab. I am half way through and although it hasn’t helped my breathing much it has taught me to slow down more. I found it difficult to slow down but with the constant checking of my oxygen levels and my work out I was able to determined how much to slow down as I have always been hyper active.
Also FYI, I was approved for VA compensation  for IPF. They gave me 100% disability which opens a lot of doors for VA medical help.
You are so kind to respond to our forum as it always helps to talk. Thank you.

[Bill]

Cooper,
There is no direct connection to ipf because of Agent Orange. (dioxin)

There was a veterans that had their compensation granted anyway because it is a chemical and there is data that says chemicals can cause IPF. Weak I know but a letter from your doctor stating there may be a connection helps. Anyway I should know October or November if I have be approved. I will keep you in the loop to let you know yes or no. If yes we can proceed from there. The lung institute is one that says chemicals can cause lung disease. Meanwhile, you can search the web for ipf versus. Here is one that was granted 08/20/2014 . Citation number 1436189 Also my son has diabetes and says that it is covered by the VA but you have to fight for it. (keep after them)  I am waiting for him to call me and verify that.