What do I ask the pulmonologist?

A year ago I met with my mom and her new pulmonologist. He had the scan from a year ago and the one he had just ordered. All I really got from him was that mom was in end stage PF. We will have another yearly meeting and I realize it will be improbable for him to give her life a time frame. It is however important since my husband is urging a nursing home and I want to keep her living with us. I really don't know what her decline will be like and it would appear it varies all over the map from your comments and sharings. I learn way more from you guys than from doctors. Are there any questions you suggest I ask? Mom is on 5L 24/7 and has had a few falls and some pretty alarming coughing spells. Her GP prescribes morphine preemptively (sp? wasn't Iraq about this?) which sometimes helps. But I am clueless about how to begin to get more than a vague end stage prognosis. Thanks, preemptively. Clare

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I dont want to get in the middle of your marriage. Your mom might be at deaths doorstep or she might have YEARS left. Nobody knows. I personally have been "end stage PF" for about five years now!! We hear that term, end stage, and we immediately in our minds go to what it means for cancer patients: that one has days or maybe weeks left to live. period. But that is a very different term in PF. I wish they wouldnt use it as it is so very confusing.

As for morphine, it is indeed used during hospice care. I have been told that at the very end, when we ARE at deaths doorstep, that PF is painful. I must be nowhere near that door as I am not in any real pain, just annoyed at a lot of stuff like dragging a hose around, etc. One of the upsides to morphine, is that is makes breathing easier! And, as it is an opiate like codeine, I would assume that it would have a similar cough suppressing effect. I cant take codeine, it gives me stomach cramps.

Why is your mom falling? is she on enough oxygen? light headedness could be indicative of something else going on.

I wish we could appease your husband with a definitive answer from your doctor. that isnt likely. sorry. This is just one of those diseases where nobody knows!! Why is he so adamant about sticking your mom in a nursing home? I am going to go out on a limb here and stick my nose in: I suggest that the two of you get some sort of counseling where you can talk to someone about stuff like this. I fear if you dont, the strain on your marriage may get bigger. Resentments could grow.

Best of luck. Keep us posted.

:-) Katrina

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It's ok to jump in my marriage. And we were in family counseling (without Mom)- just me my son and husband and mostly what came out of that was that I was paying too much attention to Mom and not enough to them. Good to know, hard to shift. My husband was sort of strongarmed by me to let mom come East to live with us. Her doctor had said she about a year to live and her husband had taken up with a neighbor and so I strongarmed the doctor to put her on hospice so that I could bring her home by car with the aid of a concentrator and some luggage trolleys (in and out of motels). What my husband signed up for was for mom to be on hospice in our home and a year and a half later she is long off hospice and hubbie sees me gaining 50 lbs and just being stressed out alot so his concern is partly for me. Also, I will need to get back in the work force next year to pay for son's schooling as the local high school is gang-infested. So husband has his points. We are looking into some day care for Mom so that I can get a break from time to time and my mom's sister has this crazy idea of renting an apartment so that she can drive up (3 hrs) from time to time to help me care for Mom. Mostly she wants a pied-a-terre to bring her friends to go to events in New York City. I come from some selfish stock. My Mom is a saint. Really. Always upbeat, very Faithful Episcopalian, losing lots of memory but still walks the walk like nobody I ever saw. I dote on her. Anyway, calling some day cares today and planning to go on Atkins and back to the gym. I just don't want the specialist to blow me off in fifteen minutes again and charge for an "extended consultation". Thanks for asking your questions. I love your candidness. Clare

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clare , have you talked this over with your mom ? maybe she should be included in the decision making . no matter how you love your mom , you may be doing her a diservice , leaving her out . i'm a pfer 68 yrs. old . my husband and my children know that i do not want to rob them of thier life. when it reaches the point that i can no longer participate in thier life, when i can no longer care for myself , it's time to move to a facility where i can receive the help i need with no guilt of being a burden.may there be many good days and may we all be here for the cure.

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My father just passed away with PF. He was diagnosed 5 yrs ago and was coping well with 4L 24/7. Fortunately for him, he declined very quickly, and within 2 weeks he passed away. One week prior to his death, hospice was called in and they prescribed morphine and methadone, which helped him breath and helped his anxiety. His hospice nurse visited him for the 2nd time on a Friday morning and he passed away in the early hours of the following Saturday morning. The morphine made him very drowsy and he was in and out for the last 5 hours of his life. His lungs were completely filled with fluid but due to the morphine he really wasn't in any pain and it did keep him rather calm. I held his hand and kept talking to him until he passed away. I am so shocked at how quickly this horrible disease took his life. I understand that every PF patient's "final stage" will be different, but when this disease takes my life I hope I am fortunate enough to be under hospice care, (they are truly a godsend), and that I decline as quickly as my dad.

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Clare, I agree with the girls, ask your Mom. I was dx with this 5 years ago, a year later my Mom was dx with lung cancer. My drs told me the only cure for me will be a lung transplant, when i am ready/qualify. They told her they couldn't give her a time limit--only God knows, funny a dr saying that. I am glad they admitted they didn't really know. I got hospice i for her and I stayed as much as I could, until the morphine had her following me around and getting stuck in my tubing as I was trying to take care of us both. We did have a good laugh sometimes, but I was fearful for her, I'm a big girl and she only weighed 89 lbs. Any way good luck, as the commercial says none of us has an expiration date stamped on our foot...Take a deep breath...and I will pray for you. Pam

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My mom is open to any plan that unfolds but she is rather tired of not being able to get around without aid. She keeps saying that they should just give people a pill when they're "done". I remind her there is a whole season of operas to look forward to and we had a short family reunion which was great. She is upstairs having a coughing fit as I write. I am hopeful we will work out something that can get me back working but without Mom ending up in a nursing home. It would be such a waste of her spirit and they are so obscenely expensive. I think the GP is willing to put her back on hospice if we ask for that. She falls because she is unbalanced and the oxygen deprivation exacerbates that. I will ask the pulmonologist to show me the lung scans for the last three years just so I can see for myself how occluded her lungs are. Many thanks for your prayers and descriptions of the End Game as you experienced it. Today, I stayed on a diet and my attitude was exemplary if I say so myself. Mom ate chocolate and brie and watched two good movies. Life is good. Having husband away on vacation is rather relaxing, too.

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does your mom ever play on the computer . i'd love to hear from her. she might enjoy a little dialogue with someone her own age who has 'been there done that ' and is now doing this . ipf that is ........wishing everybody easy breathing .

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Maybe a laptop for her? I know I now look forward to reading all everyone has to say! So much compassion, knowledge and friendliness! I just wanted you to know that with my Mom and I, that even when all was crazy and seemed lost, she and I still had our laughing spells, even though we coughed through it together! Our love and humor got us through. I didn't mean to be morbid! sorry about that! Take care all.
Pam

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My daughter bought me an I-Pad for Xmas and that has been fabulous for me. Reading Inspire, e mails, Facebook ( keeping up with the grandkids) and games--- lots of games, reading books or the Bible! I don't have much time to get depressed. I feel I don't cough as much either. My new found friend!!lLol! I think this is a good therapy tool for us older folks or shut ins and it's easier to use than aPC or laptop. Just a thought! Hugs to u all!! And thanks for all your info!!

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Yes, an iPad is great! I rarely use my computer anymore since I can do almost everything on the iPad, even watch Netflix.

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Thanks for the suggestions. Mom hated the nook I got her and but she reads voraciously (we hit all the book sales and the libraries) so maybe the Ipad might be more user-friendly. I do the odd dinner party for her friends from church and they come to visit, too. But the cell phone I got her is beyond her so she hasn't been talking to her friends back west and north as much as before - that is something I need to correct. You are all giving me ideas about how to make her less isolated, even if it means I have to get people on the line for her to speak to. I feel like the social secretary here.

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pam , no need to apolagize . sharing is caring.
clare , you are a good daughter . glad to hear our sharing has been even a little bit helpful.making decisions that affect others who are dear to your heart is difficult . stay strong . may there be many good days and may we all be here for the cure.
ps well shoot ,i think i spell apolagize wrong , but mind is a complete blank.

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raish--I don't care how you spelled apologize! It touched my heart either way. Went to the Dr today in the cool air--it was beartiful, the first I'v been out and talking to other humans since the end of May. It felt good! That's is why I enjoy listening to you all here! Clare, social secretary's can have fun to! Good luck!
Pam:)

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Clare, you are a wonderful daughter, thats for sure. Your mother is very lucky to have you. Having this disease is a very lonely thing anyway with no one knowing about the problem, etc.
I know I really miss my children and grandchildren who are my life. That is why I'm soo happy with my I pad. I feel like I'm visiting them even tho I'm not their!!lol! My son in Colorado (I'm in Fl) has an iPad, and on his birthday I face timed him( that's like Skype), in time for his birthday party with his family. I got to share blowing out the candles, singing with them and watched him unwrap gifts! It was really awesome being with them and sharing this fun time with the family. Had a hard time with the cake and ice cream tho!!LOL Actually thatvwas a good thing, for me! LOL

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Attended a caregiver's seminar yesterday - excellent contacts to make and found a support group, but not one yet for IPF which would be even better. Guess I'm just going to have to muddle through with all you guys and your spelling challenges :). There is another seminar coming up on social media which I can take Mom to. If she seems to get ANY of it we will invest in an I-Pad. I will probably end up skyping with Mom upstairs from the downstairs. Seems friends and many family are making themselves scarce. Maybe the I Pad and skype will help with that !!!! Imagine !!!

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