Pulmonary Fibrosis

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.

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

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.

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.

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

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.

Hello, I think I accidently unsubscribed  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 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 

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

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