Patients with Terminal Illnesses Need Practical Help

How does the end come and what meds do they have to help us throughthe bad part at the end . We all know what that is. Imam close to that now . Any help would be greatly appreciated

I was diagnosed with this condition on may 8,2018 it surprise me,we knew this diagnosis by and surgical intervention biopsy of the right lung,after a lots of studies.I haven't knew about this condition before and after this,you can imagine that this, my life and my families change .

I am from Puerto Rico I forgot to tell you

Hi Kim,
Me again? It's a tough choice but so glad you're doing something. There are many books and articles, and some websites available to assist people in dealing with a life threatening illness, and loss. As you correctly point out there is nothing specific to PF. In my years as a nurse and an administrator in pc I would venture to say the psychosocial issues and physical symptoms we struggle with are similar to other life limiting illnesses. The palliative care of those of us with PF is much the same as that of people with other terminal illnesses. Nothing that people on the websites has convinced me otherwise at this point, including my own experience.

However, all of us that belong to a specific disease group feel we are different, and perhaps there are some differences. I am not sure. So my long winded advice to you would be to make it for PF but stress the similarities and highlight the differences where evident.

Good for you for doing this Kim!!!!!!

Hello Kim,

I think your books will be very informative and thank you in advance.

I have two thoughts: many people use PF and IPF interchangeably. Some of us have fibroic lungs due to a different ILD, in my case, NSIP,nonspecific interstitial pneumonitis. Meds and possible outcomes are different although there are commonalities. So maybe narrow or enlarge the focus of your books.

Secondly, I would hope that Drs schedule a second appt closely after diagnosis. The shock,questions, possible issues do not set on until we have a chance to mull over diagnosis, etc. It would help if patients were told of Inspire and not "do not use internet..."

We are on a journey into unknown territory so I am praying for all of us.

Hi Kim! Happy 4th of July! I was diagnosed with lung disease 02/06/18, however, I wasn't told I had Pulmonary Fibrosis, confirmed, until May 28th of this year. Went from "emphysema" a possibly controlled lung disease to Pulmonary Fibrosis, a terminal disease, within 3 months. I was just learning all about COPD/Emphysema and was just getting a handle on it when, WHAM! that went out the window.
Since my diagnosis is somewhat "new" to me, I haven't quite come to terms as a "terminally ill patient". I think because I am 72 years old and I've had two bouts of cancer and feel grateful I have lived this long with a rather healthy life.
I don't think I am in denial, just very hopeful that I will last a little longer than 3-5 years.
The information I've found has been on line and I am thankful for that. Even our doctors don't have all the information unless you go to a Center of Excellence. But not everyone has a computer, has access to one, or knows how to use the WEB. A book about PF would be great for all of us. Good Luck and God Bless!

I would love to see more issues discussed that are pertinent to PF patients but I agree with addressing similarities that all terminally ill patients face. Thank you for taking this step. I was diagnosed on Oct. 22,2017. There are so many questions thatmy family and friends have. Majority including myself had never heard of PF. Finally getting a diagnosis after several years was in some way a relief. Good luck with your project!

Dear Kim
Firstly, congratulations for your desire and willingness to continue helping others. As an Occupational Therapist , now "unwillingly
retired", with a ling career focused on practical assistance to the aged or people living with disabilities, I have found(at least here in Australia) that there is still much taboo about death, dying and grieving, for both the patient and those who love and care for them. Perhaps a chapter about that would be useful. I have also found that most people ignore or are reticent to think About, research and action end of life plans such as wills, organs donations, end of life (here known as advance health form), funeral arrangements, etc
My family, friends and myself have found that going through all of these unpleasant but necessary issues has not only been useful and stress reducing but it has brought us closer together and has had a ripple effect as it has encouraged family and friends to look at their own circumstances in a proactive manner, rather than waiting for a life threatening diagnosis.I believe this information as part of your book would be priceless.

I think the link between Terminal illness and IPF should be emphasised. The challenges are that most terminal illnesses are around cancer and that is most peoples perception of terminal illness.My beloved sister died in February of IPF but throughout her illness the fact that she did not have cancer seemed to make her less terminal.Also towards the end she lost weight very rapidly and her breathing was much worse. I think at this point mostly she was percieved as terminal. But for her and the people closest to her she lived the last five years KNOWING not thinking that she was going to die despite the many good days she had.I think that is the challenge of IPF and for the Education of cares proffessionals everyone to recognise the gargantuan challenge that IPF presents in living until you die and having that acknowledged and respected by everyone.So I am very aware of the gift you are contemplating giving. Thank You either way.

Here's wishing you success with your book. We all know there is and end to this life at some point. I was told to me more gently than some hear it when I was told about my PF diagnosis two years ago. I have been dealing with shortness of breath for, I know, five and a half years. Last week it seems like a switch was flipped. Getting around is suddenly in short spurts then rest then try some more. I'm on oxygen 24-7 at eight liters when active, sitting a little less. I have looked for end of life symptoms online. Pretty much generalized. I guess there will come a time when my oxygen level cannot recover. I try to not let it crash for too long at a time it drops into seventies quickly if I'm not careful. Once I know it was at sixty four. I can't decide if my motor skill is hampered by low oxygen or lack of muscle tone.

If you will address these issues of muscle tone/exercise, end of life symptoms, I'm sure it will be appreciated.

The spiritual aspect for me is a concern. I'm a Bible student. I believe I'm a saved soul. This is comforting and probably why I've handled this death sentence so calmly. I wish all to know the peace I have. Yet, I've recently learned there is a side of depression I didn't know. That is lack of being active. Its a sneaky thing. Maybe I'm in denial but I've never thought I'm depressed, not even having the blues. My doctor wants to talk about depression. She called after getting a report from the Pulmonary Nurse at the Research Hospital. Talk about a surprise. I've just tried to deal with my new inabilities. You might want to consider Spiritual and depression. Maybe all this will help you? Cheers!

I am sure that such a book will be of great value to anyone with PF. I would like it to be focused primarily on PF, even though those with other lung diseases will also find that much of it will also pertain to them and be helpful.
I found the link that you provided John Harris concerning the end stages to be informative. Thank you.

A book that I am currently reading, Ultimate Pulmonary Wellness by Dr. Noah Greenspan, that was recommended on a PFF post, is very informative and covers many crucial topics. While his book is meant to cover many pulmonary illnesses, the focus of yours will be an invaluable resource. The personal slant will offer an insight that others can't fully understand. Thank you for your dedication.

Definitely, Kim writing a book about living w/PF is a great idea and undertaking. I would approach it as a narrative using yourself, your experiences, your knowledge and your empathy as a basis. For many of us the PF diagnosis is a result of another condition. Thru my own experiences, I have found nuances and subtleties inherent in IPF that don't exist in other terminal diseases esp if oxygen 24/7 is part of life. As previously stated, draw on simlarities w/other terminal diseases but I would focus on PF and how to deal with the endless life changing adjustments.
Wishing you success.

Hi Kim, I have bronchiectsasis and I share many of the symptoms and oxygen dependent lifestyle that you and other PF patients refer to. I am on my own. I am currently independent and can perform my Activities of Daily Living.I understand that will change with time. I am interested in knowing how to plan for end stages, especially if one is alone and will have to be proactive in making those arrangements themselves. What typical changes happen, potential social isolation,typical caregiving needs, typical oxygen needs, housing needs, financial considerations/tips. I see some are asking for book to address PF specifically. However, I think wearing oxygen is what is unique for me and I share that with you and others with PF. I would still be interested in reading such a book that addreses these oxygen dependent issues. Thank you for considering this.

Still not sure what the exact difference is but I was diagnosed in 2014 with Interstitial Lung disease, and Connective tissue disease; rather than Pulmonary Fibrosis. But the outcome is the same for as a person with PF. Your gathering information from people with lung disease is wonderful and I wish you success with your book.!
For me the psychological problems have been the most difficult to deal with, such as depression, lack of groups in this area. Family members who still don't really understand this disease. Most people think the medication I take is going to make me OK again. It also frustrates me that doctors treat the condition too much and not the person as a whole. A fifteen minute office visit and some tests every six months just doesn't make me feel good about myself. If I sound to negative than I guess that this disease over rides the "positive" at times. It takes a great deal of strength to deal with this every day.

I am interested in your book.please keep me posTed. Thanks Susan
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My husband has IPF - he's only 57, and as he works from home he is still working daily at the moment. No-one has officially told us he has a terminal illness (although I've read a lot online and understand that it IS classed as a terminal illness). We have a life insurance that 'should' pay out for a terminal illness, which would mean that he could stop working and just try to enjoy however long he has left. Yet, when I read the terms of the insurance, the word 'terminal' is defined as 'expected to die within 12 months' which seems to make no sense. No-one knows how long someone with IPF will live due to it's erratic nature. My husband's breathlessness has worsened over the last 6 months, his latest lung function tests also confirm he is getting worse. I hate to think of him having to work every day when he should be making the most of the rest of his life. I feel that he should be offered ambulatory oxygen now from what I have read. He is seeing his consultant for the first time in a year this week. But he doesn't know what he should be asking him? He was told 6 months ago that he would be seeing a specialist in London to get the medication now, but he's heard nothing from the specialist. We feel abandoned.