• Charlene Marshall

    Member
    March 8, 2019 at 9:50 am

    Goodluck Paula!
    I hope the sun is shining as nicely there as it is here today – this always helps me feel motivated 🙂

    Do you know how long it’ll take for the grant to get back to you on funding approval? Hopefully it isn’t too long and I hope your conversation with Boston went well yesterday. Talk to you soon!
    Charlene.

  • justme0956

    Member
    March 8, 2019 at 4:56 pm

    When I applied last time, I knew in less than 10 minutes. Once I get the information from the accountant then I will call them and then once that is approved I will contact my doctor to have him do a new script. I believe we will be bumping me up to 150mg. I sent you a note regarding Boston.

    • Charlene Marshall

      Member
      March 9, 2019 at 8:43 am

      So great to hear Paula, I’ll keep my fingers crossed for you that the approval comes just as fast! Was the 150mg the dose you had a harder time with last time, or is that still less? I hope you can tolerate it this time and that the unpleasant side effects don’t return!

      I am replying to your note about Boston right now…. 🙂
      Charlene.

  • justme0956

    Member
    March 8, 2019 at 5:09 pm

    Hi Bill I absolutely LOVE your attitude.

    Boston has agreed to consider me. Scares me the prospect but I am going to do what I can.

    Time will tell. In the mean time I try to stay upbeat and keep busy. Yes I get winded very easily but it is what it is.

    Thank you for your attitude.

  • Deleted User

    Deleted User
    March 9, 2019 at 2:23 pm

    Dear Bill @ramblingolfer
    Thank you a lot for sharing your experience (close to the end) and how you’re dealing with it.
    The reading has been very emotional for me, espacially the necessity to stop some activities you love.
    The fear of not finding the right words in english prevented me to respond quicker.
    I recently explained here how I decided to start playing Golf just afetr my IPF diagnosis in January 2017.
    (golf)
    I am still a beginner, 34 after 2 years practice, but passionate, that’s why I understand particularly how much crual was to sell your clubs.
    I would like to share with you that I played a 18 holes last afternoon. I was lucky enough to make 1 par which is not so common for me 😉 At this moment, from France, I had a very strong thought for you (my wife didn’t remark some tears) and I dedicated this hole to you. This par was yours Bill.
    That’s all I wanted to share with you today. Nothing more but was important for me.
    Warm Hugs
    Jean-Michel

  • Charlene Marshall

    Member
    March 9, 2019 at 2:25 pm

    @jeanmichelf, how very thoughtful you are! I am sure Bill will appreciate reading this, as I have, thank you so much for sharing! What a wonderful tribute, and thoughtful gesture. Really glad you got to play 18 holes yesterday, and could enjoy some time doing what you love with your wife. Very special post this was Jean-Michel, thank you!

    Charlene.

  • ramblingolfer

    Member
    March 14, 2019 at 3:29 pm

    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.

  • Charlene Marshall

    Member
    March 14, 2019 at 8:04 pm

    Thanks for your kind words Bill, especially amidst your situation. I applaud your courage and bravery, and simply wish studies yielded results faster for all of us to benefit. It is great they are underway, and I understand why they take such time, but I sure wish they didn’t. Continue to write us a long as you can, you’re in my thoughts often!

    Charlene.

  • gary-kitahara

    Member
    March 16, 2019 at 8:21 am

    Starting from the top, Megan so very good for sharing your life experience with your father.  It could be a path, my life might follow. To Bill sorry for the diminished ability to do what you love, not so sure on the age limit, depending on the institution and your comorbidities I would not give up, Johns Hopkins has had success in your age group from what I have read. I do admire your courage.  To Paula congrats on getting on the list. Charlene keep up the exercise and good diet.

    IPF has been with me since 2016, have been using 8+ liters since 6/17.  Currently using 14L to keep sats at 95+, double that to exercise.  So, what I am trying to say is with exercise and lots of O2 I am still very active.  Several months ago, I got an upper respiratory infection, it has taken until now to finally recover, but not fully.  My oxygen needs have increased to the 14L mark.  Still, according to the pulmonary tech I’m good with 3L not moving or talking, however when moving need at least 14L + when doing the 6-minute walk. I monitor my O2 levels in real time using a sleep and fitness monitor https://bodimetrics.com/product/o2-vibe/ I have it set to alarm when my sats drop to 88. I’m 60 and as of today I am on a transplant list. I am looking for anyone who is using 10L + amount of oxygen and still leading an active life. I am when out using liquid oxygen, it allows me to have more O2 in a smaller package that the e-tanks. I carry it on by back in a special backpack for convenience. It can also be pulled in a cart. With the ability to increase the amount of oxygen beyond 10L, has kept my energy level up.
    Gary

    • Charlene Marshall

      Member
      March 16, 2019 at 8:28 am

      Hi Gary,

      Thanks so much for writing to us, and for your kind words to each of us involved in this topic thread. A very tough topic to discuss, but really important so I am glad you shared a bit more about your story here. I also am very thankful for Megan and her willingness to share her Dad’s story with us!

      Kudos to you for your ability to still exercise using that much 02, I can’t imagine the dedication and strength that takes Gary. Wow! It is really important to exercise as much as we can, but it is certainly not an easy task. Thanks for sharing a bit about how the respiratory tract infection impacted you, this just reinforces my actions to stay as healthy as possible – like wearing a mask/gloves in public. Sometimes I think I am overreacting a bit, but then I am reminded about why this is so important.

      Glad to hear you have a tool to help monitor your sats and ensure they stay above 88, that is so important for our other organs. Thanks for sharing the link for what you use…

      I wish you all the best with your transplant, and hope the wait isn’t too long! Keep us posted on your progress if you wouldn’t mind, and I hope someone connects who is on 10+L of oxygen. @justme0956 (Paula), what are your 02 requirements at? Not sure if you’re up quite that high yet or not but I know you’re rocking it with the exercise despite oxygen.

      Take care both of you!
      Charlene.

  • justme0956

    Member
    March 16, 2019 at 2:34 pm

    Hello.

    When I am going about I am on 3 liters but when I am on the bike at the gym I bump it up to 5 and that helps my levels to get no lower than 87.

    Congrats Gary on getting on the list. I am not on the list yet, Boston Mass General is considering me. They were waiting to hear from my health insurance before setting up my first consultation. A 8 hour day where I think I will be meeting any person who has an ist at the end of his name. Cardiologist, nutritionist, etc. My insurance company called me yesterday, actually its the RN who will be the go to person through out the entire process and for a year after the transplant. She told me that the insurance company has given the green light for everything, pre stuff and the transplant. I did not ask what my share is but that is the least of my concerns.

    I get winded very easily and I can no longer bring in the groceries. Even when I have my portable on. The last time I did, when I went to switch from my portable to my in house unit, I noticed all of my fingers were blue. Knew that was not good. Put on the house O2, sat down and put on my O2 monitor. I came in at 73. So now, everyone else brings in my food.

    Please keep us informed about your progress getting the transplant. Did they give you any idea as to how long it might take? The RN told me she has seen it happen as early 3 week but as long as 9 months. I am dealing with it one step at a time, because I am sure you know, you can get booted at any stage of the consideration process.

  • Charlene Marshall

    Member
    March 16, 2019 at 5:52 pm

    Hi Paula,

    Thanks so much for replying, and getting back to Gary regarding the oxygen requirements you’re on. Glad you are still managing at 3LPM, with the exception of biking. I couldn’t remember but thought you might be able to relate to Gary based on what he shared earlier…

    So glad to hear about the insurance piece Paula, I am still so happy for you about that! Take good care and keep us posted on your progress, I am thinking of you as I know it can be very overwhelming.

    Enjoy your evening,
    Charlene.

  • katie-bagshawe

    Member
    April 1, 2019 at 7:13 am

    Hello Megan,

    Thank you for sharing your story with your Father. It was humbling to read your words and your strength in what would have been a tremendously difficult time for you and your loved ones, not to mention everything your Father had to go through. My story with PF is similar to yours in that my Father too was diagnosed and died a little under two years after his first symptoms. I thought I would just quickly reflect on some of the points you raised in case they may be of use to anyone as a patient or caregiver dealing with PF. I know this is a tremendously difficult topic, and everyone is entitled to their own relationship with palliative and end of life care, but personally speaking, being open to the conversation helped me so much more than if I had closed that door and refused to face it.

    Palliative Care: I really must stress here that palliative and end of life care, though linked are two completely separate topics and must be approached as such. Please do not feel afraid or upset by the thought of palliative care, it is in fact in the best interest as we found it was a helpful way in which to help cope with symptoms and to remain active. Dad attended a local Hospice once a week for a day visit, they provided lunch and he was able to meet others going through similar journeys of illness. More importantly he had access to a GP each week who helped him talk about his struggles without feeling the pressure of having a loved one near. He was given medication for depression, and they monitored any potential sightings of infection in case he needed to be referred for chest x-rays or further treatments such as antibiotics. Physiotherapists worked with him each week to support him in his determination to stay mobile, they gave him breathing techniques to work on for when he had any exacerbation of breathlessness (which were often), they also provided or found ways in which to provide tools and equipment when it was needed including an electric wheelchair when he was no longer able to find the strength to move himself around. Though not explicitly religious he enjoyed attending the chaplaincy services and bonded with the Reverend as he was teaching himself Latin. Appetite was as well a struggle as he lost a lot of weight during his illness, they gave us advice on adding calories to meals without increasing portion sizes so he felt able to eat meals and get greater benefit. Palliative care really is a brilliant way to keep yourself in tune with your symptoms, to find ways in which to cope and to access a wealth of services that are simply compassionate and empathetic to ensuring you have greater access to things which can improve your Quality of Life. Please, if it is offered I urge you or your loved one to accept it. It will also help open the door on dealing with the next topic which may be a lot more difficult.

    End of Life Care: I guess this is what it says on the tin. And unfortunately as we are all aware, PF has no set pattern or triggers that can signpost how soon a person is likely to become unwell to the point of passing. It can happen very suddenly within the space of hours, or it can take days and weeks from the point of knowing a person will die. My Dad was given hours, he died three days later. His one wish was to die at the Hospice that had taken care of him with his Palliative Care, unfortunately this wasn’t to come to pass and I guess I don’t really want to speak to much of his process of death as I feel it may be triggering and upsetting to some. Please, if you feel strong enough then do read up on what there might be to expect so you can ease your fears and better understand what help might be there regarding pain relief and symptom management. If it helps I might be willing to do some research to pop into a post in case it may be of help to someone who is too afraid to ask in person? I can speak of my experience and see what other advice there is to know how to help in this situation. Also it totally depends on your wishes, where you wish to be either at home, the hospice or hospitals. Knowing who to contact and when you feel it is time to contact them and ensuring that any legal medical procedures are in place such as DNACPR orders (Do not resuscitate orders). As I write this I understand how difficult it can be to broach these topics, but if you are willing then don’t hesitate to ask me questions as well and I’ll see what I can do to help bridge the gap of information for you. Each person is different and copes differently with this topic, but if you’re able I would urge you to find a way to bring this conversation about as it will help so much when it comes to the time.

    I quickly want to add that it has been wonderful logging on here after a short break (work commitments, new job means I’ve been super busy!) and it’s been lovely to see more people coming together as perfect strangers but all with the same thing in common and to provide support and love in these difficult times for us all. It’s such an encouraging way to see people keep on with their loves with such courage and determination.

  • Charlene Marshall

    Member
    April 1, 2019 at 5:50 pm

    Couldn’t have said it better myself Katie, I am so glad you read Megan’s post and checked in with how you were doing. It’s nice to hear from you and I hope you’re doing as well as possible!
    Take care,
    Charlene.

  • lorraine

    Member
    April 2, 2019 at 7:59 pm

    I have to admit that I might want an easier end-of-life exit strategy … so recently I have been thinking about The New York Medical Aid in Dying Act, that is under consideration, which would provide another option, Death with Dignity. https://www.deathwithdignity.org/states/new-york/

    https://www.silive.com/news/2019/04/physician-assisted-suicide-laws-are-irredeemably-flawed-commentary.html

    This was hard for me to write, but I don’t think I am as brave as the rest of you. In the end I probably would not choose this route, I will probably opt for Hospice, but I needed to admit my thoughts in this safe forum, with people that understand my “chronic sorrow”  and that this is something I have been thinking about.

    In the mean time I enjoy each day, embrace each day, grateful each day and love my life!!!

    Thank you for letting me get this off my ‘chest’.

    Lorraine

     

    • katie-bagshawe

      Member
      April 3, 2019 at 7:54 am

      Thank you for your bravery @lorraine. It is extremely courageous for you to admit something so personal to you, and whilst there are always complications with such a matter, I am for the Death with Dignity route. There have been some high profile cases here in the UK/EU regarding assisted death, but unfortunately it seems it will be a long time before it comes to pass here. The GMC (General Medical Council) where all Doctor’s are registered recently withdrew their support for the assisted death laws and the legal issue is extremely complex and in fact terrifying for carers if they are at all associated with the death of someone that might not just be a suspected suicide. It’s a very sad and disconcerting time considering there are genuine cases of people who do not wish to surrender their life to such ill health.

      Like @Charlene I need to do some more reading as I’ve been recently interested in the statistics of how/where a person passes from any lung disease (non-cancer). I find it upsetting that there is a distinct difference in care and urgency with those living with cancerous terminal illnesses and those living with non-cancerous terminal illnesses. The discrepancy is appalling to me and has been well documented in research, I hope to champion that this changes and focus is equally put on those living with progressive and terminal illnesses that are non cancerous and should still be looked at with the same importance.

      If it would be of use to you, and if it is available then I would recommend reading a book called Grief Works by Julia Samuel. She is a well established grief counselor and documents some of the people she has dealt with that have faced grief and bereavement from all walks of life. It’s an inspiring read and I find it useful in encouraging an open conversation about death.

      On a similar vein, in the UK we have something called the Death Cafe as well. I’m not sure if something similar exists in people’s local communities? It’s an idea where people of all walks of life come together to sit down and specifically talk about death in the hope of breaking the taboo. Anyone can arrange one and I believe they give guidance and support information on how to do so > https://deathcafe.com/how/

      There’s also a charity in the UK called Dying Matters that work with hospitals and hospices to improve EOL services. They have an awareness week coming up that will encourage more conversation about EOL care and also encourage people to hold their own events in their community > https://www.dyingmatters.org/AwarenessWeek

      I currently work in a hospital and often within the Emergency Department area. I’m proud to say they have their own systems in place called the SWAN model which you can read a little about here.

      https://www.nuh.nhs.uk/end-of-life-care-swan

      They have compassionate staff dedicated to working with relatives and carers facing EOL care (whether expected or not) as well as specially adapted relative/viewing rooms for after a death has occurred. I would suggest if you are at all worried about where you end up should the time come, then face your fears a little and find out about what services are available at your local Hospice/Hospitals. They can best advise you on what might happen, where you might be and what you can do to prepare in advance. Hopefully they can also give advice on how they will treat you/your loved one. Many of our hospitals have dedicated teams for EOL care as well as volunteers to provide support to loved ones, I’m sure by networking and communicating a little it will be of good use on who to contact for when/if the time comes.

      • Charlene Marshall

        Member
        April 3, 2019 at 8:16 am

        Thank you so much for such a thorough and thoughtful response to Lorraine, Katie! I appreciated hearing your thoughts on the topic. As a therapist that often walks alongside children through their experience of death/loss/grief; I think I’d be one of the patrons in the cafe you  mentioned who wants to talk about death and break the taboo. I’d go so far as to say I’d even do so now, despite having a terminal illness. I thought my IPF diagnosis might make me shy away from wanting to talk about death, and it did at first, but now I am open to talking about it and helping people through it again. I think as long as I keep a distance between helping people and talking about my own death, I’d be okay. I work with a provincial bereavement group here, and I’m leading a conference on the topic of Grief and Trauma in October. I’m currently in the process of recruiting speakers for it, so its interesting this has been brought up for discussion…

         

        Thanks again for your thoughtful responses and kind words for Lorraine. I too think she is very brave!
        Charlene.

      • katie-bagshawe

        Member
        April 3, 2019 at 8:39 am

        Wow Charlene your job sounds really interesting! When I studied Psychology, the whole grief aspect really interested me and one of my colleagues whom I work with is also training to be a counselor primarily dealing with bereavement patients. It’s incredible the different techniques and models that can be encountered when dealing with this area, and of how much it can suddenly make sense when you’re actively in the middle of your own grief bubble.

        For the most part in my prior research it seems most people living with PF themselves feel encouraged to want to speak about EOL, but feel fear of upsetting loved ones. There were however a few that couldn’t even dare to broach the topic of death so it just shows how personable it is to each individual. Some had in fact already had relatives pass from the same disease which showed some acceptance, but most were fortunate to have been diagnosed and treated earlier thanks to their awareness and were far healthier on the trajectory of illness than you might expect. I haven’t yet had chance to compare it to those on the transplant list which would be interesting to me to see how much that compares with the acceptance of facing death.

        Unfortunately, it seems there has been a huge change across the counties in the UK as to how well a person is treated in EOL care and this is usually down to people feeling unsure how to accept PF (and most lung diseases) as a terminal illness which means they tend to go down the same distressing routes of being admitted via emergency departments which aren’t usually prepped to dealing with EOL care. Hopefully all the above will change that over time and more people will get the right resources to go about a good death either at home or in hospice care, or at least a peaceful appropriate place within a hospital.

      • mark-koziol

        Member
        April 5, 2019 at 1:36 pm

        Hello Kate, I can answer your question on how transplant patients view death. At least I can answer for myself. When I was first diagnosed I didn’t really think about it. When I got increasingly worse that is when it hit me. From then on it was a constant thought especially when I couldn’t sleep at night. There were many restless nights. My thoughts on death were two fold; one where I thought I was gonna die and the other thought where I knew I was going to receive a transplant and live. I am a positive and optimistic person but almost every night I would think about death and I know I was not prepared for this or was willing to accept this fate. I hope I helped you a little bit on how as a transplant patient I viewed death. Mark

      • katie-bagshawe

        Member
        April 9, 2019 at 6:56 pm

        Thanks for sharing this Mark, it’s super helpful to know how it might compare. How did you feel post transplant as well? I guess it must be extremely difficult because there are still so many risks to your health, but also knowing this is a clean slate in a lot of circumstances. It would really interest me to interview transplant patients before and after to compare feelings and emotions to see how/if it compares to those aren’t able to receive transplants. But also to see the journey of emotions on the transplant journey.

      • mark-koziol

        Member
        April 9, 2019 at 7:26 pm

        The way I feel post transplant is sort of how I felt before my ipf set in. I kinda felt normal. My surgery was very successful with no complications, I was extubated shortly after completion of surgery but I didn’t come out of sedation for two days. My icu stay was two days then onto the wonderful transplant floor at the Cleveland clinic. They really take good care of you. I have had basically no major complications since the surgery and my mental outlook is very positive, I don’t get anxious or dwell on what if’s. I had a survivors guilt when I was in the hospital but it was directed at others who weren’t doing as well as me. I asked the question, why me and not them. There are days when the energy is not there; usually after 5-6 days of really good workouts or when I don’t get enough sleep. Sleep is my downfall, I don’t sleep well about 30% of the time and this negatively effects my day; Less energy, muscles feel like they are stiff, and overall feeling like garbage. On these days a longer nap usually will rectify this situation but I like to workout in the morning so the sleeping problem disrupts my day. If you are ever able to interview transplant patients I think you will get answers from one end of the spectrum to the other. I work hard to stay healthy and sometimes that is not good enough because the laws of nature can and will prevail. I feel blessed and grateful to my donor and his family and think we were such a close match and that is a big reason for my so far successful outcome. Thank you Kate for listening. Mark

      • lorraine

        Member
        April 3, 2019 at 9:11 pm

        Hi Charlene and Katie:

        Thank you for your kind words and support! Also for all the amazing resources, experiences and ideas. I am digesting all you have shared and will read and reread what both of you have written — a few times I am sure. I am really lucky to have stumbled upon this forum. Also, I plan to watch the movie Charlene recommended and to read the book Katie mentioned.

        I will certainly follow how the Physician-assisted suicide plays out in NY. And it is understandable that there are flaws in the laws that have been passed to date considering all of the challenges, as pointed out by Katie.

        And yes, great minds think alike … That said I am planning to contact a nearby hospice residence. I recently read an article about that hospice and they said, “When would it be appropriate to consider contacting hospice? If the day arrives when you hear the words “terminally ill,” that might be when you should consider contacting us.” Getting these types of things in order  will give me comfort, as they have been hanging over my head and heart, which is why I need to step-up.

        This forum has become very important to me. I have learned a lot. Able to vent and take advantage of resources. For example,  I am happy to report that I had my first k laser treatment today and will complete week 1 on Friday.

        Thank you so much,

        Lorraine

      • katie-bagshawe

        Member
        April 4, 2019 at 6:53 am

        Hello Lorraine, I’m glad we can be of some sort of help but also it has helped you feel a bit more positive about speaking up in this area as I can understand how frightening and isolating it can become. This forum is a wonderful place, and as Charlene has stressed, is an accepting place so it’s great to feel open to talk about our opinions without feeling judgement or prejudice. When you approach the Hospice, feel open to talk also about the Palliative care side as I mentioned above. My Father had a relationship with them for just under a year before his passing and they really helped in his symptom management and to get the most out of his quality of life. I think it also helps you feel more able to talk openly about end of life care, and more importantly learn about what to recognise in yourself if you’re frightened of illness deteriorating.

        We have another charity here in the UK that I forgot to mention called Marie Curie. It was named after a nurse who championed the need for support during end of life care, and more importantly they acknowledge and treat patients with a variety of illnesses (we have another huge charity here that unfortunately only invests most of its time into cancer patients). It may not cover your direct area, but hopefully the information they provide can give you some topics to ask and talk about when approaching your local support care to see areas where they might be able to match similar care regarding palliative and end of life needs.

        Here’s the link > https://www.mariecurie.org.uk/help

  • Charlene Marshall

    Member
    April 2, 2019 at 8:08 pm

    Hi Lorraine,

    Thank you for your courage in sharing this, I am glad you felt the forums were a safe place to voice things you’ve been thinking about. I think it takes a lot of bravery to even let folks know you’re looking into the Death with Dignity Act, whether or not you proceed with it. Please know this is a place free of judgement, and others (maybe not on our forum, or maybe so….) out there must be advocating for this who are in similar positions as we are, otherwise I would imagine an Act like this wouldn’t be in development 🙂

    On the contrary of your thinking, I believe you are equally as brave as many of us. While I don’t give much thought to dying myself, although I am open to talking about it, I’ve not been able to look into physician-assisted suicide laws so I could argue you are braver than I am! It isn’t because I don’t believe in them… which is a story for a whole other day… I just haven’t gotten there mentally yet. Thank you for sharing that you have been thinking about this, it gives me comfort to know someone I can turn to if I do want to think more about this with someone, or discuss it. It helps me to know I won’t be alone when and if I consider this!

    Glad you enjoy each and every day; that is important although easier said than done isn’t it? Are you a movie fan? This past weekend when I was feeling a bit low I watched a new Netflix movie called “Miracles from Heaven”. While I am not really a religious person, and this movie is heavily weighted on religion – it is based on a true story, and I gained a lot of hope from this little girl’s perspective. If you need a night to curl up with some snacks and a good movie, I highly recommend it. It’s hard to describe what it did for me, but I feel hopeful after watching it and think we all deserve to feel this way!

    Talk to you soon, thank you for being brave!
    Charlene.

    • lorraine

      Member
      April 4, 2019 at 4:13 pm

      Thank you for the additional tips @katiebagshawe — specifically to discuss palliative care, and all that it includes, when I meetup with hospice staff. I will find out if we have something like Marie Curie charity here in NYC. In addition to going to the World Trade Center-9/11 Clinic, I just started seeing a doctor at the Mt Sinai National Jewish Health Respiratory Institute. At some point I will meet with their team regarding palliative care and other support and resources. With appreciation, Lorraine

       

  • Charlene Marshall

    Member
    April 5, 2019 at 1:08 pm

    Hi All,

    I am posting this verbatim, for my friend Bill ( @ramblingolfer ) who was having trouble trying to get this post to go live:

    Off on another adventure.
    I thought I would bring you up to date as to my progress.
    About three weeks ago I went to emergency because my coughing would not stop.
    My oxygen was low as it normally is when I cough.
    The hospital declared war on my lungs in that they gave me high flow oxygen in the form of CPAP and oxygen mask . They also bombarded me with bloods tests and medications including prednisone of which I am at the end of that treatment being weaned off of it tomorrow. After three days and nights of sleep deprivation (in and out of my room) and lousy hospital food (I think they do that so you do not want to stay) they sent me home because there was no change in my breathing except for reduced coughing and they could do no more.
    I made a follow up appointment with my doctor . He suggested I sign up for hospice which I did.
    Now hospice sounds scary but really isn’t as the end of life can be a ways down the road and they are there to ease us through the process and to make us and our family as comfortable as they can.
    The only observations I have is that it seems that the treatments I have received and and the pulmonary rehab I went through were primarily designed for COPD and the nurses and rehab specialists are not trained for IPF.
    I say this because twice I was told by at two different pulmonologist told me to breath through my mouth and nose and not just the nose. COPD trained personnel tell you to breath through your nose with pursed lips.
    Since I was able to increase my oxygen flow to 9 and 1/2 liters my coughing spells have been reduced substantially. Bad news, my machine is maxed out and nothing except liquid oxygen machines would work and they do not have any companies in our area that offers them. So as my lungs worsen my demand for oxygen increases. I am ok for now.
    At the beginning I said this is just another adventure in my life but be reassured it is not a ride at Disney Land. 🙂
    This is Bill, over and still not out.

    P.S For those military connected. Suicide is a crime and may result in benefits denied to spouses and dishonorable discharge.

    • ramblingolfer

      Member
      April 5, 2019 at 1:40 pm

      Thank you Charlene.|You do good work.

  • katie-bagshawe

    Member
    April 7, 2019 at 11:34 pm

    Thanks for posting on behalf of Bill! It certainly sounds like he’s been through it these past few weeks and I’ve heard that the CPAP machines can be quite distressing. Has anyone had this as it seems to be common practice when admitted to A&E with low oxygen levels? Also, on the same note, how did people go about explaining their oxygen needs when being admitted to A&E as to the untrained Doctor, they can be a terrifying prospect to deal with and can easily often forget that your normal is not what they are used to dealing with or striving for. I also heartily agree that a lot of teaching to patients with ILD is taken and adopted from COPD learning which doesn’t always fit the bill. A lot of feedback here in the UK is that the exercise portion of pulmonary rehab is helpful but the educational aspect is pretty pointless. Sending my love to you Bill, and I hope all is getting better. I can’t believe the struggles you have with getting hold of liquid oxygen but sadly it was also an issue here in certain regions. Again, ridiculous considering the tremendous impact it can have on quality of life.

  • ramblingolfer

    Member
    April 8, 2019 at 2:15 pm

    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.

    • katie-bagshawe

      Member
      April 9, 2019 at 7:11 pm

      Nice to hear from you Bill and that things seem positive for you considering everything you’ve recently been through. My Dad struggled a lot with the cough also, it was very dry and if it got bad it really triggered his exacerbation. Have you tried eucalyptus oil? That’s brilliant, very similar to menthol in that it’s very good at helping your breathing feel a bit clearer. I always have a little bottle handy when I’m under the weather and feeling bunged up. Either a few drops on a tissue/handkerchief or putting some in some hot water to inhale helps with clearing the nose out a bit, that or a few drops when you’re having a bath. Did you struggle with your nose feeling dry because of your oxygen being so high? Dad always had really dry skin and I knew that was uncomfortable for him, I recall the Nurse recommending water based gels like KY Jelly around the rim of the nose to ease that awful dry feeling. My Dad used a little morphine and his symptoms were quite low actually, have you tried it before? That worked wonders with his cough but alas can make you feel quite lethargic which isn’t helpful when low oxygen can already make you feel that way also.

  • mark-koziol

    Member
    April 10, 2019 at 10:51 am

    Hello Kate and Bill, PF news thanks both of you for your compassion and sharing your experiences with your forum. The communication both of you exhibit is what makes a successful forum, sincerely Mark

  • ramblingolfer

    Member
    April 10, 2019 at 1:01 pm

    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.

    • katie-bagshawe

      Member
      April 10, 2019 at 11:02 pm

      @ramblingolfer (Bill),

       

      Glad to hear you’ve tried a variety of options, and I’m sorry to hear that most of them seem to be so unsuccessful. Unfortunately they were the only options we had available to us, with the exception of when Dad was admitted and he was using a humidifier alongside his oxygen. I’ve never seen this available in the community. Have you seen or heard if this might be available to you?

      https://www.resmed.com/epn/en/healthcare-professional/diagnosis-and-treatment/ventilation/treatments/hfot.html

      I would suggest perhaps contacting oxygen providers in your local area to see what they can offer and maybe even be a bit pushy with them. It was always available here and we were lucky to have an excellent driver who went above and beyond but in some regions of the UK you really have to put your foot down about it being delivered. Just like Gary we had a big tank delivered twice a week that we would refill in two to three flasks that would last an exceptionally long time comparing them to the bog standard air flow. It gave Dad such a lease of life to keep going knowing he had more oxygen to fall back on. I’ve spotted a few companies advocating for improvements in oxygen supply to those needing it and being innovative with new technology. I cannot for the life of me remember the name of the company who contacted me a few years back so I will look into them and get back to you.

      As for the medication aspect, have you talked with your Doctor about how you feel? Here in the NHS the drugs for PF are only available to people that lie within certain percentages on their FVC results. If you’re too well or too sick, the drug won’t be prescribed on the NHS which, quite naturally, has caused a lot of outrage at being restricted. My Dad was never able to take any as he was too poorly. I would suggest chatting with your Doctor and asking him to do some investigating into research available to see where the meds can actually hinder your disease if it progresses past the point you feel you can cope. Sending my love to you.

    • mark-koziol

      Member
      April 14, 2019 at 7:38 pm

      Hello Bill, thank you for sharing your story. Mark

  • gary-kitahara

    Member
    April 10, 2019 at 1:47 pm

    Hello Bill,

    I’m new to the forum and have been reading about your struggles.  I don’t understand the limit of oxygen at 9.5 lpm, I have been using dual 10 lpm concentrators for a while as my needs are 14 to 16 lpm.  Are you using a humidifier with your concentrator? The saline spray and gel do help, if you have not used a non-rebreather mask you may want to inquire.  I use it at night to sleep ( this allows me to reduce my O2 from 14 to 8 without dropping my sats to help with the dryness) and to exercises I am using the non-rebreather mask to get more O2 as I require 25-30 lpm using 4 concentrators.

    Out and about I am using Companion 1000T 1-15lpm liquid in a backpack, this give me 50 to 60 minutes per tank, have 5 companion 1000T.  I refill from 2-46 liter liquid tanks that I keep in the van.  This allows me to be out and still active.

    I wish you the best, keep spirits up,

    Gary

     

  • ramblingolfer

    Member
    April 10, 2019 at 6:26 pm

    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.

    • ramblingolfer

      Member
      April 13, 2019 at 1:41 pm

      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.

  • jan-riche

    Member
    April 12, 2019 at 7:41 pm

    Hi Bill,

    I was sorry to hear about your struggles, makes my journey sound like a walk in the park. I am 76 (77 next month) and my O2 requirement has just gone to 7-9 liters depending, so I don’t do much that requires moving, which means that I don’t cook any more. I miss that a lot but didn’t have to sell my pots and pans.

    Luckily I love reading and play a lot of word games on my iPad. Most of the time I am not thinking about my IPF. Living in Arizona blesses me with a lot of good weather. My bedroom french doors open onto my patio and my husband brings me coffee and breakfast and opens them. The feeling of being outside starts my day well.

    But like you, I am not able to participate in my former life. I missed church and my church group for the last two weeks. I may be at the point where I’m going to have to give them up. I believe my IPF is progressing fairly fast now.  I am also wondering if I should give up my Esbriet, does another month living with these deficits make it worthwhile? Just a thought.

    I am not afraid of dying, just the process to get there.  I really appreciated Megan’s post.  It was the first description I had read about the process. It gives me hope that it might not be too hard. I read a book about brain studies of deep meditation and it talks about the brain activity slowing down leading to an experience where the meditator feels a growing oneness with the universe. I’ve been hoping it could be like that. Sounds peaceful.

    Jan R

  • ramblingolfer

    Member
    April 13, 2019 at 1:33 pm

    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. 🙂

  • marianne

    Member
    June 1, 2019 at 8:51 pm

    Megan ( @megan-zetter ) –

    Thanks for telling us about your Dad.  Being a caregiver is very hard.  I did this for my mom years ago for a few months before she passed away with lung cancer.  Now I find myself recently diagnosed with IPF.  I am in the early stages of the disease.  I hope when my time comes I can go as peacefully as your Dad did.  I also don’t want to lose my independence and rely on others for daily living.  Hopefully, when the time comes I will gracefully accept changes as they happen.  I have a few friends with chronic illnesses who used hospice care.  I do not personally know anyone where I live with IPF.  I had made friends here who understand the PF journey.  Thanks for sharing your Dad’s PF journey as well as your role as a primary caregiver for him.  I am sure you brought much joy to his final months.

    Marianne

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