Gweneeth
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I rarely participate in the forum but do scan it now and then. I felt sorry for you as you begin your search for understanding and answers to your questions. I took that time frame reference to heart and felt driven to ‘get my affairs in order quickly’. Seven and a half years later, my affairs are in order, have been corrected when friends moved away that were listed in my paperwork and very slowly I’m fading. There is nothing you can count on with IPF except it won’t go away! I live in the US and have been on and off Hospice twice. I have a wonderful supportive network of friends and neighbors. I live alone and all my kids/grandkids live 12 hours away. I have the best doctor who takes good care of me. I stopped going to a pulmonary doctor because the pulmonary function tests were always a little bit worse which would put me into depression for a week or so. I decided I could rely on the Pulse Ox to see if I needed to up the oxygen. I’ve been on 4L for about a year. Est thing I ever did was to go to the Pulmonary Workshop (not the real name but I can’t remember what it was. There my class learned everything we ever needed to know about the disease and the importance of exercise, diet, and how it might progress. I’m sure you’ve heard, no two cases are exactly alike. Ask your doctor if a class is offered in your area. I went from a very active person to a house-bound person. I’m just too tired to go anywhere. I’m currently looking for an assisted living facility. I don’t want to exhaust my friends with all my needs on top of the Ophir own. They would say it’s not a problem but they didn’t sign on for an eternity of care either. I’m 78 but have always been a long distance hiker, taken long car trips and stayed active in the community. Being house bound has been the biggest adjustment. I’ve had other health issues that complicate IPF. I have chronic spinal issues and all except the Thoracic region has been
permanently fused with titanium cages and rods. I’m on high levels of pain meds because I can’t have anymore surgery to correct new spine bulges that cause pain. Things are not all gloom and doom. You meet incredible people in the medical field and I find out about services in you neighborhood. I’ve discovered I can donate my whole body to the medical schools of large Universities and made new friends at my local funeral home and Duke University. What an honor to let grad students see what IPF does to the lungs and maybe contribute to a discovery of a cure. I’m also a strong believer that Jesus is preparing a home for me in heaven. I keep reminding Him I don’t need a mansion, just a little cabin will do. I don’t fear death as many say but I could skip the final process! I hope you are as blessed as I am and your journey can even be exciting at times. You can contact me directly and I’ll do my best to answer any questions. This is a great forum with a lot of caring people who know a lot more than me….I always type too much. Hugs, Gweneeth -
I’ve not posted in a few months but thought an update might add to what others have said. I’ve been under Hospice care for a couple months and can already see how much I’ve declined. I no longer drive or leave the house. I’m on an opioid patch as inactivity has increased my back pain. I’m still on 3L of oxygen but levels will drop to low 80’s with simple activity. I’m extremely tired all the time. I’ve had to limit the number of friends that visit to 1 hour per day. I love visiting and hearing what’s going on in my community and I lose myself in the laughter but then I get these loud internal buzzing sensations and I know I’ve over done it. I’m not a napper but when the wave of fatigue falls over me my eyelids and my neck are too heavy and just have to lay down. Usually an hour is all I need. I get very cold when this happens; I love my electric blanket. I live alone but thanks to Hospice team, neighbors, church family, and friends all my needs are met. Since my last post I’ve had another bout of bronchitis which always makes the lungs worse. One thing we’ve shied away from talking about is constipation. It’s not a topic for mixed company (southern expression from elders). Because of the bronchitis meds and the opioid patch everything shut down. Please don’t send me your grandmothers remedy, I’ve tried them all. A friend is picking up some Fleet enemas which are my last resort. Maybe my cause of death will be an internal explosion, it will be quick ???. I’m sorry, I’m getting mentally warped. When all else fails, laugh at yourself. On that note, I’m signing off. I hate that some of you are suffering the loss of your loved one and others are watching loved ones fade. This dying is hard work for everyone. Hugs to you all, Gweneeth
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I’m in my 6th year of IPF and not on any IPF meds. I would highly recommend you contact Hospice as soon as possible. I just started with them and it has made such a difference. They took over everything, meds for comfort, for pain, a CNA to help me shower, she put clean sheets on my bed. I just hired a woman to clean my house (I pay for that). Everything is covered under Medicare/Medicaid including the hospice doctor. They have wonderful literature explaining what changes take place 7 weeks from death, 3 weeks, down to 3 days. I live alone and so grateful for their education and sensitivity. Please check them out, it’s not too late.
You are so fortunate to be there with your dad. God bless you.
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I agree with Richard. I have IPF, Asthma and mild allergies so the inhalers are a God send for me. I use Albuterol rescue inhaler but it still takes 25 minutes before I cough up junk. I only use it when needed, mostly in the evening. Hint: Don’t take it 30 minutes before church. The cough is worse than a screaming baby.
Everything with this disease is trial and error. We are the most persevering people ever! Happy Thanksgiving.
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Hi everyone. I have an update to my last woe-is-me post. I started on a very low dose of Lexapro 5mg after that post. It’s an antidepressant. Either it worked or I just got out of my funk but I’m not angry anymore. Doc asked me to stay on it for a while so I will. I had another function test last Friday and all my numbers were low with DLCO down to 35%. That confirmed why I’m so tired all the time. My nurse friend had me look at my last blood tests and many of the CBC items, red blood count, hemoglobin, hematocrit, are all at the bottom of the range or below. Another good reason why I’m so tired.
My docs have advised that it’s time for hospice so I called for a referral this morning. I love the hospice folks. They know you’re dying and their job is to make your days as comfortable and easy as possible. There’s no restriction on driving if you’re still able. You can go wherever you want if you’re able. I live in a very rural community but I rent a little house that’s close to my church and the two restaurants in this community. I have a neighbor that cooks for me every week. She’s a wonderful cook. I have others that do my grocery shopping and fill my bird feeders. My final months are going to be filled with laughter, love and friendships. One of my kids is coming with his family for Christmas and staying in a rental house nearby. My landlord owns that house too and she gave us a big discount. I urge you to make your needs know to your church, neighbors, family and friends.
One more thing, I think it was Jon that recommended the book “Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks with You”. It is the best book I’ve seen that answered most of my questions and also listed all the documents we need to have filled out and ready before we die. I’m almost finished with my documents and it was hard and very emotional at times but my children will thank me.
It feels like I’ve written a book but I had so much to tell you. I’ll be praying that you all get the support you need and that you will be proactive in managing you remaining days. Treat each one as a gift. God bless you all.
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Jon, thanks for your encouraging words. It’s nice to know you also have an ‘Engraved Invitation’ to the Masters table. That is one of Christine’s truism. If anyone living in North Carolina, USA wants info on donating organs or whole body donation within this state, I have done the research and will share what I have. Im so glad to have this group of slightly worn, somewhat bruised IPF friends to say how I honestly feel and know you’ve all felt it or feeling it as well. I just want this anger to subside and I know eventually it will. Hugs and prayers to all. Gweneeth
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Thank you to everyone that has shared your stories. There are as many different stories as there are people. I have a couple questions. 1) About once a year I get so angry at this disease because it’s creeping along and I’m sick and tired of thinking about it! It’s not like we can ignore it although I’m trying right now. I haven’t worn my oxygen, except at night for the last week, temper tantrum. I’ve even been cleaning my house slowly. When I feel breathless, I sit down for 5 minutes and it gets better. Does anyone else have these prolonged pity parties. I know I’m depressed during this time. I’m giving myself one more week before I call the doc for a mild antidepressant.
2) Does anyone else’s IPF get worse slowly? I just started year 6 after diagnosis, I’m 77. My lung function tests are very good except DLCO which is 43%. I’m retaining fluids and have mild pulmonary hypertension, as of 5 years ago. I take 60 mg Lasix but none of the IPF drugs.
I live alone in North Carolina in a rural community but have wonderful friends and neighbors who help often. All my kids and grandchildren live in Michigan. They come to visit as often as possible.
I’ve completed my Will and the kids have read it so we’re all on the same page. I’m donating my body to one of the medical colleges here in NC. I just have to decide which one. I’ve talked to a funeral director and know what he needs from the contact person. Half of the stuff in my little house has blue tape stuck to it. All the family that’s visited have put their names on stuff just as I begged them to. It’s become quite a joke in our family and my community.
It’s like being all dressed and ready to go to the party only to have someone keep changing the date without telling me. I’m a born again believer and KNOW God’s right in front of me because I’m hanging onto his robe. But I’m so tired of being tired, of not having enough energy to do the things I enjoy. The only absolute truth is I KNOW that Jesus will be waiting with open arms when He finally tells me I can come HOME.
Hugs to all Gweneeth
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To Jill, I talked to my friend and she doesn’t do the type massage you refer to but she’s going to reach out to her community and see what turns up. She wanted to know if you know any names in the Asheville, NC area that I could call. Thank you for your help.
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I understand some of what you said. I know someone that might have some of those credentials
Pulmonary doc says I won’t survive thoracic surgery and I don’t want that anyway. My regular doc wants me to see a spine man who specializes in steroid injections but I’ve had those before and they don’t work on me. I had spinal fusion from C2-T1 and L2-S1. Combination of arthritis and genetic defects. I also have mild scholiosis in the thoracic region. I’m in year 5 of IPF and losing function more rapidly. I was going on Hospice but had a surge of energy so postponed but this pain is setting me back. I just want someone to identify it and then we can talk about options. I found another sore spot further along the edge of the right rib, along the back for what’s that worth. I’m also allergic to all pain meds except Dilaudid which I save for ‘I’m going to kill myself’ pain ?
your husband is so fortunate to have you. Thank you for your input.
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Lori, Christie put it beautifully and all the other comments were so helpful to me as well. I have had an enormous, positive response from friends, neighbors and my children (they have surprised me). Part of it is living in a rural farming community that’s isolated from any major city makes us look out for each other more. I wish I could share some of these folks with you. If I was in your shoes I would first ask God for wisdom to deal with the hurtful fried and then I would ask Him to bring me new friends. I had a person I had only met once call me and offer to help any way I needed. She now comes once a week and cooks for me so I have meals in the freezer. I asked her why she does this. She said that God said, as only God can, that she was to help me. As my freezer filled up I felt I was taking advantage of her kindness. Her response was, God will tell me when to quit unless you don’t feel you need me anymore. We’ll shut my mouth, I asked her to please keep coming. She is so much more than just my cook! I will pray specifically for your friend to ‘see’ herself better and for God to send you the people you need. Hugs
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Caroline, you made me laugh and to whisper a ‘praise God’. I loved your final phrase, “Engraved invitation”.
You asked why I chose not to try the meds. I am highly sensitive to all pain medication and to a lesser degree other medication. I read all the possible side affects of the meds and didn’t want to deal with those. The other reason was psychological. We go on these new drugs believing they are going to suppress our symptoms and we’re going to feel better. When the side affects are severe and we feel worse, that hope of improvement is dashed. There is a period of depression because we have no hope. My last reason has to do with my faith. Why would I want to take these meds to prolong my life when I would still be dependent on oxygen? Without them, I might die sooner but be in heaven sooner as well. I debated all the pros and cons and chose the path I know rather than the unknown.
Im looking forward to reading about the Others out there who are living this strange life. I glean something new from each story. I’m praying for all of us. Hugs G