What should I expect as IPF progresses?

[Mark Koziol]

Hello Vishal, I’m sorry any of our members have to watch a loved one deteriorate. My brother recently passed. I was able to see him before he did pass. When I saw him, he was on 15 liters of 02. For most of the day he was comfortable but he told me at night is when he began to get fatigued. He would nap on and off throughout the day. At this time he his oxygen saturation hovered around 82%. Although, the sats were below 88% he was not in distress. It seemed his body acclimated to his needs. My brother died approximately 7 weeks later. His passing was peaceful during his sleep. He was on hospice for the last 3 weeks of his life and only medication was a drop of morphine under his tongue for him to feel comfortable. I wasn’t with after I left him but we did video with each other quite often and texted or talked every day. I could tell after too much talking he would get a little tired. This is a sad event to watch and be part of. I thank you for being there for your father. Not every patient is this fortunate. Take care, Mark

[Vishal]

Thanks for sharing your experience, Mark. It’s great that you were still able talk and text with your brother every day (thank God for technology) – I’m sure it meant a lot to him and made a huge difference. I’ve found that just having your loved ones talking and engaging with you is so helpful – my dad certainly feels much better any time me or my siblings are with him. And I’m certainly lucky to have my siblings and mom help with taking care of and being with my dad during this time. I don’t know if I could do it by myself.

It’s a tough situation and it’s so helpful to know what to possibly expect. I’ve been contemplating getting opioids for my dad as well and I think I will finally get some for him this week. Our respirologist had already suggested we start on it but we were hesitant since it’s such a strong drug. But at this point, all I care is that he’s comfortable. I’m praying every day that he passes away peacefully in his sleep at home.

Wishing you the best,
Vishal

[JT]

Mark, I am so sorry to hear of your brother’s passing.  It was very moving to read about his last days and your thoughts. It’s a subject that I have wondered about when I think about my own end of life planning and how it will affect loved ones. It’s not an easy topic but we in this group have a bit more urgency to be able to anticipate what may occur and how to prepare as we are able and still maintain a positive outlook. Thank you and thank you Vishal for your questions about your dad and how you care for him.

JT

[Mark Koziol]

Thank you JT.

[Chris Soper]

Hugs @vishal. I lost my husband recently – he was on 4 litres O2 on ‘as necessary’ basis but was hospitalised after a fall when he broke his hip and multiple ribs. Very quickly his oxygen requirements increased and when he was discharged four weeks later (still with broken hip and ribs) his prescription was for 12 litres O2 24/7.  Thanks to NHS we had two 9 litre machines so effectively could go up to 18 litres, which we did in his final days, but we were told that anything more than 15 litres made no difference. If 15L was insufficient the ‘best’ help was to try relaxation techniques (not easy when you’re in pain and struggling to breathe).  My husband was put on opiates but he suffered hallucinations, which stressed him even more so he was switched to low doses of morphine, which we were told should help as a relaxant.  His pain obviously exacerbated his oxygen requirements but he only survived 7 weeks after his fall. I do hope that information helps in some way. Good luck to you and your family.

[Jerry]

Dear @vishal

I have IPF.   In 2011 My father passed away from cancer.  Two months before that I was working a 30 plus year career in the Oil and Gas  Industry. I could see my father was going down hill, not much time left.  I left that job to be by his side just before  he was placed in Hospice. I am so thankful I had that time with him. He hated the drugs  (Morphine) because it made him sleep. There were times when the pain was so great he would ask for it but mostly he just wanted to sit and talk.

None of us can say what the events of your fathers last weeks/ days will be like. He could end up in the hospital or die in peace in his own bed, but He will die. So what matters is the time you spend with him.  Letting him talk and letting him know you love him.  I pray you both find peace through our Lord and Savior Jesus Christ.

IPF is a terrible thing. As I said I have it and I know my time is short. I can only tell you to spend as much time with your father as possible while you can.  You will be the better for it.

 

[steven mason]

This is how my father died. He had 2 physicians–one with the mayo and one in orlando. The mayo doctor was candid and kind–he said the fortunate ones with IPF die from a heart attack—lack of oxygen. It is a quick and painless death–per his description.. The unfortunate ones end up in the hospital. My father had a strong heart–cardio system. One lung collapsed and he was placed in a drug induced coma on a ventilator. My aunt–his sister begged me to disconnect support—I refused. The dr who I admired greatly said my dad would decide his fate. He lingered days—one dr wanted to move him to hospice but the treating physician overruled him stating my dad would not survive the transport. I watched the meter in his ICU room—like in a trance—some people can survive quite long with limited oxygen. I hope you do not think I am macabre–but considering there is a strong genetic component—I have read about death with dignity—colorado—oregon etc.

[PFCareGiver]

My mom was given a diagnosis of being in late stage IPF and that was 6 months ago. I moved in to care for her. She is 85lbs and on number 2 for oxygen. When she does any normal activity she gets winded and goes down to low 80s oxygen otherwise she is okay. She tires easily, has a persistent hacking productive cough Daily. She has never napped in her life but now takes 2-3 naps daily.

Some moments she is sweet and pleasant and then there are other moments. As a care taker it has become tiring with little support. I have often wondered how will I know when we are nearing the end. I try to do what I can to buy her as much time as I can before the Lord says it’s time. I do also pray He takes her in her sleep peacefully.

[Christie Patient]

Hi PF Caregiver, have you heard of palliative care? Gweneeth mentioned hospice, which could also be helpful, but depending on how ill your mother is, palliative care might be a better option right now. I just shared this post, with related articles linked about this specialty if you’d like to learn a bit more. They can help her with pain and processing the progression of her disease, and give you a break from caregiving for a while. It is really important that you take time for yourself during this process (coming from a fellow caregiver!). I know it feels like you can’t/shouldn’t leave, but if you can find someone to be with her for a while, a day, or even an hour to yourself away from all of this can be really important for your mental health. Both palliative and hospice care should be covered by insurance if you are in the states.
Sending hugs,
Christie

[Gweneeth]

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.

[Tony Hernandez]

Gweneeth:   I hope you have had a comfortable day, this Easter Eve.  Or as good as you can expect.   I, too, am 78 (plus four days) and diagnosed with IPF these solid four years.  I get me treatments, or rather see doctors at the VA.  The hospital routinely schedules SCANS and tests.  I have used OFEV about 3.5 years, with the usual gastro side effects.  I, so far, am not struggling for breath.   I do get a bit winded going up slopes and long stairs.  So, I avoid them.  I wear a CPAP mask at night with auxiliary oxygen.  And there is a possibility of a heart valve replacement via catherer by end of the year.

Yes, I am at the interested stage of “what should I expect?”

Fortunately, I live with my sister; she is a couple of years younger…would you believe, also with mild IPF, but not on meds.  My former live-in gorgeous female partner tells me she will be there to render help when it comes to that.  We’ll see.  I have a Palliative appointment at the VA next month.  It will be my first.  I will prepare my list of questions for them in advance.

I am interested in knowing how you are coping and still prepare your comments for posting.  Dictating?  Have a secretary?   I can appreciate the effort as I maintain a couple of web sites and email friends and relatives everyday.  Oh, and you can tell that I, too, can be long-winded when it comes to messaging.

I hope to get back to you soon.   Take care.

 

Tony Hernandez

[Betty Buenning]

I posted this in the end of life page, but it seems like that is what you are asking about.

Having just gone through this with my husband, Steve, diagnosed in 2016. We were going through the testing for a lung transplant and due to COVID he had not been seen in person from October 2020 to April 2021. He went from needing 1-3 liters of supplemental oxygen to 4-6 liters. Then suddenly he needed 8-10 liters.

We were given all kinds of instructions for the possible lung transplant, but no one told us when it was an emergency to get him into the hospital to prevent catastrophic respiratory failure. His pft in the Fall 2020 was 48% lung capacity and in April 2021, it has dropped to 27%. He had been stable until that point. and fought using oxygen 24/7.  (That probably began to impact his heart and kidneys.) Due to COVID precautions, we could not start the lung transplant tests until May. That delay, I believe was a cause of the rapidly declining pulse ox levels and not being in position for a transplant before it was too late. His doctor was surprised he experienced that big a drop in lung function and said we should have been in contact with the transplant team. We had called several times and requested appointments, but could not get an opening until late April/May. (Thanks, COVID!)

All the transplant tests were done except his colonoscopy when he finished the last tests mid-June. That week he picked up a common cold (rhinovirus) and that exacerbated his respiratory failure. After talking to his pulmonologist and treating him at home with higher oxygen and prednisone, we took him to the ER. He was admitted quickly and that point was using between 10-15 liters. They took xrays and each day 50% of his lungs that were clear went down. He was finally intubated to be flown to his home hospital/doctors, but it was too late. He was too sick to fight off the common cold. After a couple of days where his lungs seemed to stabilize, he had a heart attack (no previous problems) and experienced kidney failure. We asked for him to be extubated as the only other choice was a tracheostomy. He passed away with all the family there and our parish priest. Although he was an incredibly health 71 year old (except for his lungs) it was too much for him to fight off and it was too late to wait for a transplant.

So, my advice is to watch those oxygen numbers and your pulse oximeter. If you start observing increasing variations, get to an ER in a major hospital that does transplants, but make those contacts before they are needed in an emergency.

God be with you and all your families as this was incredibly tough. We had been together for 48 years and married for 47. We would have rather had Palliative/Hospice care, but that choice was not available to us with how sick he was.

[Shafi]

Sorry that your dad suffer. I am on 10 liter of oxygen when go to bathroom I use 15 liter also when
I take bath. Also I am diabetic I use so May med. don’t stop medication until you talk to doctor.

[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

[Marilyn Cellucci]

You have a great sense of humor, Gweeneeth. God bless you.