Recent dx of IPF: What Q's should we ask the doctor?

Chest and lungs
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My 85 yr old husband was recently dx with IPF after  pulmonologist reviewed results of CT scan.  This doctor walked up through the films of the scan, explained the layers of fiber and the fluid in the bottom of both lungs.  He  told us very little except that there was no sure-thing treatment, but that he would start my husband on a test run with the antibiotic Cefdinir and Prednisone and see him one month later, which will be Jan 18, 2016--this coming Monday.  The prescriptions seem to have helped, but my husband's condition seems to still get weaker and he has trouble breathing at night.  We've done some researching, trying to get more familiar with this disease, but are still very confused.  I'm making a list of Q's to take to the appnt and decided to ask for some help from those who have been through this before:  Which Q's are most important to ask?

 

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Hello, I would think that few of the better questions to ask the doctor would be: 

1. Is the doctor going to give your husband an Pulmonary Function Test?

    Need to know his lung compacity%, or how much of his lungs he is using.

    Look at his FEV1 for this percentage. There should be three, just for  

    comparison. 

2. Is he going to prescribe your husband Pulmonary Re-hab? This always

    makes us feel stronger and feel better. 

3. If he is not on supplemental oxygen, will he need it, and will he need a C-

    Pap for sleeping? 

4. Has he had his annual Flu and Pneumonia Shots? He will be needing both

    of  them. Very important! 

Sorry for noticing this posting a little late, but possibly you could call your doctor and have his nurse ask him questions? 

It is best to insist on answer's from the doctor's, since many of them don't care to help. 

You will probably need to purchase an Oximeter, and test him regularly for his oxygen sats. The normal rate is 89%-100%. If it goes below 90%, please call your nurse about it, since this could/usually indicates he is picking up and infection, and with this condition, an infection could be very serious. He will need some antibiotics and more (higher dosage) of Prednisone, until infection is gone. Also, is important to keep him away from sick people or sneezing, etc, out in public...he may have to wear a mask. 

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Forgot to add, that I am so sorry to hear about your husband being diagnosed with this horrible lung condition. I hope I have helped  with some of the start out basic questions too. There are a couple of brand new and very expensive medications, one is called, perfonidone (not sure, but similar spelled). It is suppose to keep IPF from progressing at a fast rate, but usually if he has less than 50% FEV1, then it is disqualified. Also, it is very expensive, and many people must find charity to help with expenses for it. Other than that, one of the main medications is Prednisone, which is used as a bronchodialor type med. Brenda xo

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Dear Qva,

I have been under treatment for IPF for two years. I am 81 years old.  With regard to nighttime panic attacks, get a walker of Zimmer frame.  It is common for old people to have a fall and break bones when they get up to go to the bathroom, because the low oxygen makes them faint.  I fell twice, luckily without breaking anything, and though using a walking stick. So now I have a walker.  They are cheap.  It gives one a sense of security to hang onto it, and I think it would help with panic.  I agree about getting an oximeter and supplementary oxygen.  You can have a Phillips "SimplyGo" to provide oxygen at 1.5 or 2 liters a minute all night.  You can get a portable one for going for short walks. It is like a shopping trolley.  I have the latter with three batteries, I bought the extra ones, to give me about 3 to 4 hours autonomy away from home.  You can rent them, although I get them free under the French medical system.  But most important is to get the drug ESBRIET which is the first effective medication available for IPF.  I have been on it for two years. And while I am getting slowly worse, it has GREATLY slowed down the progress of the disease.  Get it as soon as possible.  If your doctor does not know it, look it up on the web, or look at the clinical trial in the May 2014 New England Journal Of Medicine where there is a full report and a long editorial on it. 

I know now that one can be upset by the diagnosis.  But my attitude is that sooner or later I will die from Something, so in the meantime I will try to enjoy life as much as possible, and enjoy my friends and my wonderful wife.  As they say, "Dont panic!"   Fight back with humor and the love of friends.

neville

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First of all: Thank you, thank you for responding!  Starting in 2004, Jerry has overcome 4-stage lymphoma -- and after cycles of chemo, a bonemarrow transplant in 2007 and been cancer free now for over 8 years-- and in 2013 had congestive heart failure and in critical condition several times.  He now has a pacemaker/debillator and a gallon bagful of pills that keep him feeling good and fairly active. Much of his success has been possible due to people like you we've met on patient message boards.  When I posted last night, it was done with hope, and you were there! 

Re your list of suggestions, they are very helptul as I would not have known to ask the first 3, and even if I had stumbled on them, none would have been asked so specifically.  Thank you, again, Brenda.  I hope it's okay if we count you our first friend on this site...when I figure our how to do it!

~Qva

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We're on a very good HMO, but of course, are limited to whatever their decision is re prescriptions et al.  3 yrs after Jerry first dx with Lymphoma and failed to maintain health, he asked his oncologist to refer him to a stemcell hospital program to be testest; the dr. refused, said Jerry was too old.  I phoned Cigna (our HMO/health provider) and within 3 days the oncologist called to say he would like to refer Jerry afterall.  We learned that Cigna had contacted this dr. and more or less said:  refer him, or we will, and if we do, we won't be referring any more of our cancer patients to you.  But times change, and with the new government rules and regs this superior help from the insurer/provider may not be possible anymore.

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1. Can he prescribe Esbriet (also called Pirfenidone) ?  Does he know the NEJM report ?  I suppose there might be difficulty due to interaction with other medication.

2. Can he prescribe an  oxygen concentrator?

3.  Can he have a walking frame for use at night?

good luck

Neville

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Thank you, Neville!   We've learned from earlier serious medical problems that the best advice on day-to-day living is usually from people who have aleady experienced and learned how to cope with what to us is new and confusing.  Of equal importance it finding a message board like this and a support group of people who sincerely care and want to help.  Your reply to my posts is a great example.

Yes, will check out the NEJM for the report--it's the sort of thing my

husband likes to do-the med terms are easy for him, but Greek to me.  I agree, too, that it's time to get a walker, and will be asking the dr about oxygen. 

Best of all, appreciated your wise reminder that all of this is part of life, and like you, once the shock of such a nasty disease is put to rest, my  husband and I both know the life is to be lived with as much  love and humor as possible.  Also, it helps considerably to know where we are going when life here is over.

Thank you again for responding to my request for help.

~Qva 

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Qva, Thank you for asking me to be a friend, and I would absolutely love to be a friend of yours! 

Yes, I agree, Cigna is a very nice Health Insurance company. I had them once before too, and never had a problem with them. I think that was so nice that they helped your husband like they did with the stem cells.

Did he get the treatments? If so, how did they work for him?

Your husband really has gone through so much! He sounds tough, and I bet he will get through this initial new stage with the lung condition in a fast pace, especially if he managed to cope well with all those other past conditions. 

Thank you for sharing that with me, and I hope they do come out with some treatments for this lung condition. I have heard that they have been trying to grow lungs out of our own stem cells, this way, the rejection rates will decline, and their will be no more organ shortages for lung transplants, etc.. but not sure when they will be marketed, or even if they will be marketed. But, sure sound nice if they can do something like this! 

Brenda

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Hi Neville, I have been following your story and various helpful replies on here for some time. Could I just ask you what was your condition when you were prescribed Perfenidone.My OH was prescribed it in December having been diagnosed with IPF in June 2015. During that 6 months he got progressively worse, wouldn't eat, lost 21/2 stone and had problems both walking and using exertion. He is now on oxygen more or less for 24 hours a day and has no quality of life. He was always very fit - gym, gardening etc but now cannot do anything. They say Perfenidone takes 3-6 months to have any affect, is this what you found? He is managing to do some exercises most days that he was shown at rehab. but struggles with his breathing and his emotions when it becomes too much. We would just like to hear some encouraging news - if there is any.

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Hi Brenda,

Guess I did leave Jerry's story with lymphoma unfinished.  Yes,

he did have the transplant, and fortunately his bonemarrow had not been infected, so he was able to use his own stem cells.  It was a long process from the time he was tested/treated/recovered/became an out-patient who had to stay close in order to check in every morning for tests, etc. Finally graduation day when the hosp. kitchen sent up cake & icecream and we were sent home, some 60+ miles away.  Took several more months before he began to flourish and make his local oncologist happy!  Looking back on it, it was an terrible but exciting adventure with a miraculous ending, wonderful--even fun times--with friends we each made on a patient message board.   Jerry never got quite as strong as he had been; became a trail rider rather than a climber, played 9 holes of golf instead of 18, but 8 years later suggested we take dance lessons so we could take advantage of weekly dances in the neighborhood we moved to in 2013.   The chronic cough from what we now think may have been un-dx PF put an end to dances when we had to come home after dancing twice at the

halloween party...at the time he thought his breathlessness was due to heart condition, and it was when his cardiologist disagreed that Jerry

was referred to a pulmonologist. I'm having a bit of trouble not giving in

to anger when I think of his pcp who 2 yrs ago gave Jerry a

prescription for,  "...idiopathic chronic cough, just like my mother has,"

this doctor and son of a doctor told us.  A year later, he said an xray

might be helpful, but he and radiogist said it just showed an old scar in

Jerry's  lungs; it took another year and another xray indicated need for

a CT scan   I catch myself wanting to ask the pcp how his mother is

doing, but I can't ask yet, as it's not based on a sincere concern, but is

purely sarcastic...and not something I'd be proud of.  Besides, I really like this pcp and don't think he was deliberately careless--just not well informed.  

Thanks,Brenda--it sure helps calm me just to put in writing how I feel, and calming down helps remove that need to strike out.

I'll let you know how our appnt goes tomorrow.  Thanks to you, I'm actually looking forward to it!

~Qua

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Hello, Pat,

My husband was just dx with PF in Dec. and I can identify and sympathize with you over the confusion and fear when trying to understand just what this disease is all about.  If it wasn't for the helpful people on this patient forum I wouldn't know what questions to ask, and the doctors often don't seem to realize how little we are able to understand when in a state of semi-shock.  I hope things go better for you and that the med. kicks in soon.  I'm not able to give you any suggestions, but please know that you'll be in my thoughts and prayers. 

~Qua

~Qua

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Hi Qva, Have a nice visit with the Doctor, and yes, please let me (and Neville, and, Pat)  know how it goes! Thank you for your response too!

Brenda xo

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   brenda62546  charles97600  neville93106  (Is this  way to reply 3?)

 Brenda, Charlie and Neville, thanks from Jerry & me.  Yesterday, we went off with  our compiled list of questions and really caught Dr R's attention;  first thing he said was, "My, someone's been doing some research."  My overall conclusion of the appnt is mixed.   Thanks to all the help you gave me, having the questions printed and labeled (with date, Jerry's name as patient and mine as caregiver printed in the headliner) resulted in a lot more questions being answered.  Got off to a bad start though, when Jerry's oyx read 95% during check-in, and both dr and his nurse assumed Jerry was in pretty good condition; this was confirmed by Jerry, who was feeling pretty good and happy to be able to talk and smile with someone besides me for a change.   Without the questions, I think  Dr R might have sent us out the door with an instruction or two, a referral to Pulmonary rehab, and our next appnt 6mo away.  He make it clear Jerry did not need supplimental oxy, but possibly an inhaler for tough times, but thanks again to the questions and my determination to talk about each one them, Dr R decided that just to be on the safe side, he'd have Maria (assnt) take Jerry for a walk in the hall; Jerry's oxy reading after they returned:  85!  Change of plans:  Dr R made referral to oxy provider and new xray (checking for any change since ct scan ) and a follow-up appnt with us in 2 weeks.

Son & dau-inlaw coming tomorrow for long weekend visit planned months ago following a bus. meeting they have in Las Vegas.  They are wonderful friends as well as kin, and it will be great to have them here.  "Here"  is in Surprise, Arizona, about 30 min NW of Phoenix.

Thank you all--words that just don't begin to say what's in my heart for the three  of you.  Relax while you can, as you have not heard he last of me.

~Qva

 

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Brenda--

I tried to send a message to you, Charlie and Neville all at once, but not sure it worked.  Did you get the message telling about our dr visit yesterday?  It might have showed up as a message To Qva from Qva...and no one but me will get it!

~Qva

I must be doing something wrong, now can't seem to get this message to post. 

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Glad to have helped!!

good luck and keep smiling.

neville

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We now have an oxygen generator (can't remember the right name) and 3 small tanks of oxy, a carry bag + what looks like yards of tubing, etc.    He used oxy in bed last night, but then in his recliner when he started coughing after 3-4 hrs.  Tried an extra pillow, but didn't work.  If the new xray shows more fluid, he'll have his lungs pumped and maybe that will cut the coughing.  For the time being that's all Jerry needs, as he can leave the house and do okay if he goes slowy--and keeps the carrier with tank in the car or golf car.  He doesn't golf anymore, but uses the golf car to get around locally.

I like the idea of the small tanks/batteries, and can see that maybe later, when his need increases, i'll re-read your post about equipment. 

Hope alll goes well with you today.   ~Qva

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Qva, I am also happy to have helped, and any time you have any more questions, or need any help, please ask! Also, enjoy your visit with your family too. Hopefully now, his walking may be more easier with oxygen. It is important to try to get him stronger by walking short distances, or, some sort of easy exercises, or pulmonology re hab classes. The exercises will take time, but will do wonders for him. I am also hoping he could qualify for the medications, such as, Esbriet? Please keep us updated, and good luck!

♡♡

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Hi Qva, I did get a posting about your doctor visit and that your husband is now using oxygen. The message is posted on this page as a comment, if this is the correct one. I will also check my email in this forum, in case there is a message, but I believe it is the post on this link? I am so glad that your doctor seems to suddenly be responding, and now sees the importance, good thing he had him walk and then tested his sat oxygen % using a oximeter on his finger. Xo

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Okay, I finally caught on...when I post on this discussion all of you will get an email alert. 

I mentioned that I wasn't 100% impressed with Jerry's dr R and one problem is the instructions re the presctriptions are vague. We're waiting now for the phamacist at Cigna (our HMO) to phone dr R and then let us know what they mean.  Seems Dr R might have taken a minute to explain while we were in his office.  Hope we're not going to have to ask for a different dr., but will do so asap if next visit (Feb 1 for the 3 lung tests) still shows signs of an uninterested/unqualified dr. R. 

CIgna is very good about making change of dr. if requested to do so.                                  

Feb 1 is same day Jerry starts Pulmonary Rehab.  Hope I'll be allowed to observe.  Will let the insructors know that it takes both Jerry and me to remember anything important and thus neither of us goes to any health issue event alone.   Touchy issue, as we have to be careful and not give the false impression that Jerry is not "capable", et al--- some young people may start wondering if he needs a court-appointed care provider.

Hurrumph!