Pulmonary Fibrosis

Posted , 8 users are following.

My name is Teresa. I have just been told that I have P.F. I am only 47 and have a 5 year old son. They say I have had it for the past 5 years. So my time is running out. I'm so scared and the thought of my son growing up with out me is killing me inside. I'm just looking for some support as I am all on my own.

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  • Posted

    Hi Teresa,

    Good morning from Monterey California.

    Sorry it is under such circumstances that we get to meet in this group. 

    I am finding that there are many different stories, and even many different physical experiences people are having from this disease. 

    What friends you have, hang on to them. Rally the wagons of friends and family around you and your son, and get as much information as you can from your doctors.The uncertainty part of this, regarding time remaining and the possibility of (and caveats for) having a transplant have driven me crazy for some time. 

    I really do think that having trusting people to share this with is the best salve for your anxiety and should be at least somewhat reassuring regarding the future of your child. 

    I guess being practical but positive is the best spin we can all put of this thing.

    Best,

    es

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    • Posted

      Hi. Thanks for your reply. I don't have any family and very few friends. I have been hurt and let down in the past, so I keep myself to myself. My son lives with his dad because I'm not well. I see him every weekend. I don't understand why me. I'm finding all this really hard. I can't even walk to the shop with out having to stop to get my breath. My kitchen is like a bomb has hit it as I haven't got the energy to clean it. I feel as if I'm in someone else's body. I start to cry then stop myself because I know if I start I won't stop. I just want to shout out HELP ME. But it would not do any good. I do try to think positive but my thoughts just go back to my son. I really don't know how I'm going to do this.

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    • Posted

      Hi again Teresa,

      If I may be so bold, while it is perfectly understandable, and even psychologically predictable, the feeling of "why me" will have to go. Here is a generic breakdown on grief. You can verify this most places in the internet:

      The 5 stages of grief and loss are: 1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance. People who are grieving do not necessarily go through the stages in the same order or experience all of them.

      I guess the "why me" thing, which quite naturally I went through myself, and may well again, is a blend of anger and depression. Anyway, while we all will have to tailor our coping mechanisms to our own personal lives, we can help each other by sharing our ideas, as long as avoiding the word "should". 

      For myself, like you, I am pretty much alone all the time. My line is "just me, the cat, and the laptop". I was teaching quite a bit online, and even the f2f classes were, as I was an adjunct college instructor, meant working mostly at home. (A number of reasons there - I will spare you the details.)

       But you have a huge disadvantage to work with being so disabled and alone. I rather like organizing kitchens. Maybe I ... Oh well. 

      Like Bob suggested, hit all the websites you can. Um, I am concerned that A) how do they know it is 5 years in progression? B) Why are you working with a GP and not a pulmonologist? C) Has a CT been done and D) would a full lung biopsy help (it can be a grueling experience though, as it was for me)?

      I'll let you go now. This is getting a bit long. Keep us posted. I find it great to have people to "talk" to. 

      Best,

      es

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  • Posted

    Teresa:

    First I am very sorry to hear of your diagnosis and I can tell it came as a shock.  You haven't said what the basis for your diagnosis was and if it wasn't as the result of a high resoulution CT Scan, you should insist on getting one.  IPF is a rare condition and it can only be accurately diagnosed after a CT Scan and in many cases only after a Broncoscopy which is  an actual examination of the lungs, during which tiny samples of tissue are taken and examined.

    I'm in the same boat as you as I was diagnosed over 5 years ago but i'm still here and in fact my condition is pretty stable.  So stop assuming your "time is running out".  The progression (or lack thereof) of this disease can vary greatly for each individual and there are a number of things you can do to help you cope.  I would particularly encourage you to learn as much as you can about IPF.  There are a number of online website resources.  I'm in Canada and we havea very good IPF Foundation whose website is http://cpff.ca/ Not only does it have basic medical information but there is also a Q & A section with answers provided by actual medical specialists.  There are many sites like this one and I know you will find them helpful.  There are also new medications that show great promise in slowing down the condition.

    Please stay in touch and give us info on your symptoms, the basis for your diagnosis, and what treatment has been recommended for you going forward.  and most important:  think positive thoughts because the negative ones waste too much energy and are of no help to you whatsoever.  Easy to say I know but VERY true.

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    • Posted

      Hi bob.

      I was rushed into hospital 2 weeks ago. I stayed for 9 days while they did tests. I had a chance scan and also Broncoscopy. I was not told of my condition in hospital, I was told by my Gp a week later. He says I have had the condition for 5 years but I don't recall any one telling me. As for treatment I'm receiving none at the moment. I am waiting to have oxygen in my flat. I loss my breath very quickly. I see my specialist next month and weekly visit to my Gp. I don't know which way to turn and I do try to stay positive. But this has come as a shock to me.

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    • Posted

      Teresa: Thank you for getting back to me.  I hadn't seen your posting to the gentleman in San Fransisco until after I first sent my reply to you.  I have a much better picture of your condition now and obviously you are in quite a bit of distress.  The oxygen should certainly help.

      It is indeed surprising that you seem to have gone for such a long period before you were diagnosed.

      You haven't said where you are located but i'm glad you are seeing a specialist and I would ask your GP if he could exert some pressure to have your appointment moved up.

      I'm not a physician but my guess is the specialist may put you on one of the new meds.  They are not a cure but slow the process of the disease down.  He is also likely to bring up the subject of a lung transplant especially for someone your age.  This would certainly be a very good option for you.  If he doesn't raise it you should.  Myself and others on this Forum will be glad to communicate with you as much as you want.  We can't offer you a solution but we can give you what support we can. Talking to others, especially those who also have IPF, can be beneficial and hopefully assist in calming you down a little.

      One final comment.  The term "idiopathic" basically stands for "we are idiots as we don't know what causes IPF".  Some of the websites will cite various possibilities including exposure to asbertos or related products.  In my own case I am convinced it was caused by severe acid reflux disease (more commonly know as heartburn).  Any chance you suffer from this or have done in the past on a frequent recurring basis?  If you do, there is very good medication that will stop it and you should elevate your pillow at night. i use a styrofoam wedge with a pillow on top.

      I'm going to end this here but I want you to stay in touch even if it is only to talk.

       

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    • Posted

      Hi Teresa:

      I just wanted to follow up to see how you are since it has been over 2 weeks since we last communicated.

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  • Posted

    Hey Teresa,  I hope you are doing well.  My name is Jose and I am 49 year old and have been diagnosed with idiopathic pulmonary fibrosis.  Unfortunately I come with lots of experience with this diesase.  My mother was diagnosed about 5 years ago with the same disease.  She past away 7 months ago at the age of 69.  I know that this is a scary time for you and your family. But you are in the right mind set to look for support.  I want to be here for you.  I know that with mom, it help her to have someone to talk too at all times.  We both had an agreement that we would always tell each other the true regardless how difficult it would be to hear.  I learned alot throughout her fight as I became her primary caregiver.  My thoughts and prayers go out to you and your family to give you the strength and courage to help you through this difficult jouney.  Your post encourged me to join the form and contribute my experience with IPF.    
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  • Posted

    Hi Teresa I suspect I have the same condition am age 45 and have 2 young aged 2 and 8. I completely relate to your thoughts of leaving your son behind. I don't have any great advice for you but I do feel your pain and know you are not alone. Try to take loads of pictures and videos of you talking and singing to your son. Leave him yearly birthday and Christmas messages and make at least that's what I intend to do. He will grow up remembering you as a loving mum. My thoughts are with you.

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  • Posted

    Sweetheart my heart is with you.😥😥😥 Your not alone we can go through it together. I have the same as you only I have more time. Your son I really don't know what to say only that I hope he is ok 😇😇 🙏🙏 i know that this deasease sucks.

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  • Posted

    Hello darling.... I'm not going to talk about anything to do with me....... Your so young.... ps is a difficult question we are not getting enough information about this. How long has this doctor told you about how long you have left omg. I pray for you. 🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏If you need to talk email me.... Please let me know..... Debbie xxxxxxxxxxxxcxxxx

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  • Posted

    I'm new with all of this, Would like to see what people are thinking & doing What Helps & what can I do to feel better ? smile

     

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    • Posted

      Hi Nancy:

      I saw your post on the discussion with Teresa.  Perhaps you can give us some details of your condition and that would enable us to comment further.

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    • Posted

      Hello, I think I accidently unsubscribed  sad I hope not,, Well I have been very tired about 3 years, Had been taken care of my baby sister who lived with me for 5 yrs,, She past in March this year sad I chalked it up to stress, My Pulm Doc always says my lungs sound fine, But then sent me for a CT low dose cancer screen. It says I have PF, & some small 4 mm noduals. I have been having a hard time, with no energy ,, I lost 2 sisters within 7 mos of each other, so figured it was just a lot of stress, My Heart Doc says I have a bit of hardning of the arteries, & My heart beats to fast, so BP meds for HYPOtension. Have not seen my doc since the test was ordered. I do have some COPD & Emph,  So not sure where I stand today. I have several health probs .  I do the Spariva 1 time a day, But feel so weak I can hardly get up. That part really makes me upset, I feel worthless, & Don't want to be a burden. So Guess thats it, T/Y for getting to me .MUCH Thanks 

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  • Posted

    Bob, Looks like I made it back here to this page smile T/Y for responding. I'm not to good with the computer & don't see to well so forgive any mistakes I make. I posted in discussion page, Not sure if I am even doing this right !! Anyway, Have not seen My Dr. for a plan yet, If there is one.. No one in my female side of family lived past 69 yrs sad I lost My Mom & 3 sisters. Dr. always said My lungs sound great . Then this CT ordered ?  Shows PF & some small 4mm nods So don't have a clue how long I can expect to live or what, I have not told Family, Best to wait till after the Holidays I think.  It has been hard because I have 0 energy. Want to do things with My Grands, & I do force my self to go to special things, My Family is the most important thing to me & always have been. I WILL not be a burden to them. I know they would say I'm not BUT, I know how it is taking care of sick ones. So for now , just waiting to see what Doc says & maybe let me know if I will be here or not. I have 2 very painful shoulders & Very bad back so it hurts to even type, But trying to get & be helpful to myself & Others . Bob Have a nice Saturday smile

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    • Posted

      Yes you are coming through fine Nancy.  IPF is quite rare and can spring up from nowhere and they cannot come up with a finite cause for it...that's why it's called "idiopathic" (we are idiots we don't know the cause).  My guess is that your doctor my want you to have a Lung Function Test (sometimes referred to as Spiromitry).  This is really a series of tests where you blow into a tube and they measure how well your lungs do at both taking air in and  blowing air out.  The results helps them confirm whether you have IPF, COPD etc. or a combination.  There are also some new drugs available which may or may not be  appropriate for your condition.

      I note your comments in regard to your family and while I respect your position, you will have to forgive me if I disagree.  You can take great strength from support from family members and given your lack of energy etc. I think you need some help.  Your family will want to give you whatever support they can and the last thing they will see it as is a burden.  Wait until after the holidays if you wish but after that include them.  

      Let's see what you Doc recommends and take it from there.  But please talk to your loved ones.  Bob

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    • Posted

      Hello Bob, T/Y for the wise words. Prob will speak with them after the holidays. I had a lung Funtion last year, I was told it measured 86 ? Not sure , Yes I do have COPD & Some Emph as well, I had Epstine Barr,, & Lyme Positive. The Dr. still checks my titers for that. I have just been so tired this past year has been the worst. However, I had a lot of stress as well. Losing 2 younger sisters ect.  I would love to try anything that will help me get some energy, I have a lot of pain & The meds just don't work on the pain.. I don't take a lot , because it scares me !! Again T/Y so much for your kind words... I am in the middle of trying to move after 20 years, I can't even pack .Uggghhh. I hate feeling so WEAK, & tired as I'm sure you know. Thanks .Nancy Always open for ideas smile

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