Pulmonary Fibrosis Support Group

Diffuse parenchymal lung disease (DPLD), also known as interstitial lung disease, refers to a group of lung diseases, affecting the alveolar epithelium, pulmonary capillary endothelium, basement membrane, perivascular and perilymphatic tissues. The term DPLD is used to distinguish these diseases from obstructive airways diseases. Most types of DPLD involve fibrosis, but this is not essential; indeed fibrosis is often a later feature.

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final stages

My husband is 71 years old he was diagnosed with copd 5 years ago he has been on oxegen since, the past six months he has been told he has pulmonary fibrosis and the left side of his heart is enlarged he is also a diabetic. We have 4 doctors and no one is telling me what to expect I watch him get weaker and weaker every week he can hardly walk from the bedroom to the kitchen his legs and feet are swelling up has anyone been thru the final stages with a loved one.

Replies

deleted_user
deleted_user

Hi Eileen,

I don't have any answer to the "final stage", but something in your post prompted me to write to you. I also have Pulmonary Fibrosis and have been hospitalized three time since last December because of it. My feet were swelling up and it was going up into my ankles. What my doctor did find was that I was retaining fluid in the lower part of my chest, right under my diaphragm, due to the fibrosis. And I also have a "right heart" enlargement. I also had the water retention and have been told to watch for this, because it means that I am in trouble again with the fluid. I had to have a chest tube put in twice to drain the fluid and believe me, it made the biggest difference in my tiredness and breathing trouble. The only way to see if there is fluid according to my Pulmonoligist, is to have a Cat scan done. It shows up clearly in this test, not chest xrays, so maybe your husband needs to have the Cat done to test for fluid? Has this been looked at by his doctors yet? I have a good doctor that refuses to let me succumb to the fibrosis and he is willing to do anything to help me. He has me monitoring how much fluid I drink every day and it has managed to keep me from going back to the hospital. I hope this helps you in some way. It just sounds so much like what I have been going through lately. My husband also thought I was nearing the end too and he got me to the hospital..Stay strong.
deleted_user
deleted_user

Thank you so much for answering and giving us hope my husband had 2 catscans this year one in December and one in may all the doctors said was that the fluid was coming from the enlarged heart. Eileen
deleted_user
deleted_user

Eileen you are welcome for any hope that I could give to you. All I can say is that my problems were all narrowed down to that fluid in my chest area and since my last hospital stay, when they removed all that fluid again, I have been feeling so much better. I know, my heart enlargement is to blame for my fluid build up too. The doctor told me that my heart couldn't handle the fluids I was consuming and it was leaking into my chest area. And I can tell you that I couldn't breathe when I had this in me and my ankles and feet swelled up so bad! I looked like I had Flintstone feet. Have the doctors talked about removing the fluid? I don't know what your doctor is doing, I am not a doctor, but maybe you could recommend this to him? It might help him some, but like I said, your doctor is his "doctor and knows best about him. Your post just grabbed my attention and I needed to let you know what went on with me and why I was having all these problems..I hope you reach a good point with all of this, I know I was scaring my husband because I was in such bad shape before they hospitalized me. Take good care and be his advocate if he needs you to speak up for him to the doctor. And take care of yourself too!
deleted_user
deleted_user

Hi Eileen,

Just a few weeks ago I was desperately searching for the same thing you are. There is not much information available about the final stages of pulmonary fibrosis. I do know that it progresses at a different rate for everybody.

My father was diagnosed with pulmonary fibrosis last year (2009). He was put on Oxygen full time in January of this year using between 4 and 5 liters at a time. In April he spent a week in the hospital and was discharged using between 6 and 7 liters of Oxygen. He was camping in the mountains in May of this year and began to feel tightness in his chest. He went home from camping on June 4. On June 6 he woke up and could not catch his breath at all or walk the few steps from his bed to his bathroom. My mom called an ambulance to take him to the hospital because they did not have enough Oxygen for her to get him there in a car. He was immediately put in the ICU on 30 liters of Oxygen (the highest they could do without using a ventilator). He received Nitrous-oxide along with his 30 liters of Oxygen for a week. He was on continuous high dose steroids and antibiotics as well. One steroid in particular (and I can't remember which one it was) caused a spike in blood sugars so those were maintained with insulin.

My dad remained hospitalized for 5 weeks before passing away on July 11, 2010. During his 5 weeks, he required increased use of a Bi-Pap machine (every night and occasionally during the day) to help ease the burden of breathing on his chest. His heart beat was very high (averaging 130 beats per minute). He had several episodes a day (sometimes per hour) with his O2 levels as low as 50. As his fibrosis progressed his hands and feet had less circulation and turned cold and yellow then gray. His breathing was very labored with several small inhalations following every breath he took in. His breaths per minute were very few. He lost the ability to exert any energy without his O2 levels plummeting. If he rolled onto his side with full assistance from a nurse, it caused his O2 to drop to at least the 70's if not lower. He finally lost his appetite and was hardly able to talk due to the energy required.

In the end, we had a family meeting with his doctors and agreed that when he was ready we (the family and doctors) would keep him comfortable with morphine and Ativan and slowly decrease his Oxygen intake. The doctors said that Pulmonary Fibrosis is the worst possible way to die. It feels like you are being held under water without the ability to take one last gasp of air. When my dad had suffered enough and had his affairs in order, we followed our plan. He passed away very peacefully. He was aware of his surroundings and talking to us (but not in any pain) up to 3 hours prior to his death. He was able to hear my mom whispering into his ears until his last breath. She lied with him in his hospital breath hugging and whispering to him the entire time. It took almost 3 hours from the time we first started decreasing his O2 until he took his last breath. While it was hard and I am still very torn up over the entire situation (and how quickly his fibrosis took over his body), I know that he passed away without pain and discomfort. When we took his masks off of him in his last minutes, it was oddly comforting to see him mask free and comfortable.

My sincere and heart felt thoughts are with you as you and your husband make this journey together. Please let me know if I can answer any more specific questions for you. I apologize if I provided too much detail; I just know I would have loved to have this information 3 weeks ago. My heart goes out for you!!!

Take care,
Cheryl
deleted_user
deleted_user

Dear Cheryl, Thank you so much for taking the time to answer, this sounds like what my husband is going thru he was hospitalized on fri with pneumonia and was put on antibiotics and steroids he is fine as long as he lays still as soon as he moves he loses his breathe and turns blue.I can see his labored breathing and I know a ventolater is coming. How did your mom get him camping? I am so sorry for your loss but very glad your dad is at peace my husband does not want to live this way we also loved camping give my love to your mom, xo
deleted_user
deleted_user

Hi Eileen,

I'm truely sorry to hear that your husband is hospitalized.

My parents were camping before the fibrosis took over my dad's lungs. He saw a specialist at National Jewish Hospital 2 weeks before he was hospitalized and his scans were normal. His fibrosis took over and progressed very rapidly.

How is your husband doing with his pulse-ox? Is he able to maintain his Oxygen at or above 90?

My dad signed a DNR to avoid the ventilator because his doctors said if he went on the ventilator he would never come off of it.

How are YOU doing? Are you eating and taking care of yourself? Don't forget to sleep as well! The doctors were sure to tell us that they were doing the best they could to care for my dad and keep him comfortable and that we needed to take care of ourselves to keep up our strength and health. Do you have a support network where you live?

My thoughts are with you and will continue to be! I will pray for comfort to you and your husband.

~Cheryl
deleted_user
deleted_user

Okay I get it you are really a angel sent to me who I am very grateful to. My husbands pulse-ox goes between 70-82 never higher then 82. I am on my way to hospital and I will get right on the DNR no one told me about that he is scared to death to go on a ventilator. Thank You Cheryl your mom is lucky to have you, xo
deleted_user
deleted_user

My dad is going through the final stages of this dreaded disease right now. Earlier in May, he was golfing 3 times a week and while he had some shortness of breath, he kept going. He started out on oxygen as needed and within a couple weeks, he was on 10 liters of oxygen 24/7. He was in the hospital with pneumonia in June, an ER visit late August and spent almost a week in ICU a couple weeks ago. He's been on 26 liters of oxygen for the last couple of weeks which seemed to help, but the tanks were barely lasting 4 days. A month ago he could dress himself, and now he's in hospice where they started him on morphine and ativan. The rapid decline caught us off guard, yet I'd rather it be this way, then to see him in a hospital bed for a year, struggling to breathe. This is such a heartbreaking thing to go through.
deleted_user
deleted_user

My prayers are with you Thank God for Hospice, xo
deleted_user
deleted_user

Sending *HUGS* and peace to you and your family!
deleted_user
deleted_user

Thank you. We lost him on Saturday. He hung on long enough for my uncle, all of my sisters and I and our kids to get there and be with him. Now we need to concentrate on my mom. He loved thunderstorms so we told the kids that when a storm comes, it's his way of saying hello.
deleted_user
deleted_user

My sincere thoughts are with you and your family. How young are your kids? My twins were 4 when my dad passed away in July and think about him every time it rains. Take the time you need to be with your family and know that I am here if you want to yell or vent through writing! *HUGS*
deleted_user
deleted_user

I am so so sorry your mom will be fine for now she is going to need you later when all the visitors go.
oxfordns
oxfordns

My sympathies also...i have this dreaded disease also...so far have been getting along OK...but...who can see the future.
Be strong,..........
deleted_user
deleted_user

Thanks. Mine is a 7 year old girl, but he had 6 grandkids total. 9 year old girl, 7 year old boy, (mine), 2-1/2 year old boy, 20 month old girl and a 9 month old boy. We just found out that a friend of my dad's of 54 years was just diagnosed with the same thing. What are the odds? The only link they have is they were both truck drivers for 20+ years. I wish the medicine would get approved to help allieviate what these people have to go through. While there's no cure, if it could give a better quality of life, he would have taken it in a heartbeat. He hated not being able to go anywhere. As he required more oxygen, he needed more tanks and we just found out that the bullets my mom was driving around with were illegal because of the quantity he required. He would need 14 just to go see a doctor. Had they been in an accident and someone died because of an explosion, she could have been charged with involuntary manslaughter...