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Old 11-06-2004, 02:02 PM   #1
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lohrewok HB User
Please help! Pulmonary fibrosis/sarcoidosis

I hope someone can help us. My husband had sarcoidosis inside of his lungs in 2000. At that time the doctor's also noticed some fibrosis in his lungs. Now, 4 years later the dr. (a pulmonary specialist) is telling us he has pulmonary fibrosis. Everything I have read about this says that it is terminal. But Doc. won't come right out and tell us what is going on. If indeed the progonsis is bad, we want to know.

He is now on oxygen all the time. Predsionse 50mg, advair discus, some other new kind of inhaler. His blood oxygen saturation level dropped to 67% a month ago and they admitted him to the hospital for 5 days. Finally got it up to above 90 with the oxygen. But when they test him without the oxygen it drops to 88 or so.

I guess it is dumb of me to just write all this on some message board and expect someone to read it and tell me that my husband will live. Like you guys could know. I'm just so depressed and upset now. I don't know what is going on. I try to be strong for Erick but I feel like bursting into tears whenever I look at him. Pray for my Erick, please. He is a good man.

 
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Old 11-06-2004, 06:04 PM   #2
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delrae4753 HB User
Re: Please help! Pulmonary fibrosis/sarcoidosis

well i wish i could tell you that there is a cure for pulmonary fibrosis but there isnt my husband was diagnosed with asbestosis and pulmonary fibrosis about 5 years ago and i can tell you he is still going strong he has oxygen, a nebulizer, he is suppose to take lasix, and use his inhalers i cant tell you that he takes any of these becuase he wont use them unless he cant breathe also he smokes 4 pks a day and next month will be 71 if your husband follows drs orders and does what he is suppose to do he will mostly likely live a long time. best luck
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Old 11-12-2004, 01:17 AM   #3
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wrin HB User
Re: Please help! Pulmonary fibrosis/sarcoidosis

I am very sorry to hear of this diagnosis.

The things that you have read are true; frequently, IPF or interstitial pulmonary fibrosis is permanent and fatal. One of the things that can be considered is a lung transplant, though there is a medication regime involved and some physiotherapy exercises that need to be performed preoperatively, and if one cannot do this then sometimes it means not getting the transplant.

IPF is very different for every person who gets it. Some people are diagnosed and live for years, some decompensate very fast. A lot of docs sometimes have trouble spelling it out as if it's bad, and that can make it worse for you guys because it leaves you underequipped.

You might find some comfort in counselling for yourself, or counselling for him. Some comfort may also be found in getting affairs in order and knowing everyone will be well taken care of should the worst happen. Now is a good time to discuss advanced directives -- things like, would you want to have a tube put in your lungs and then put into intensive care on a life support ventilator? If that happens, realize that once that happens there's a chance he may not come off, and once he's on, he cannot voice his desires the same way he can now. This makes now a good time to discuss things like whether he would want to be a do-not-resuscitate, to designate a power of attorney, to decide how dependent he'll become on the rest of the hospital staff. Discussing funerals can be difficult but can be a bit of a release as well, pre-paid pre-needs are lovely for families when a loved one passes on, since the arrangements are for the most part, already made and paid for.

I do not mean to sound as if I think he will die quickly or even relatively soon. Nobody can truly say when since that depends just as much on your husband as it does on his disease. All I mean to say is to please seize the moment and while you still have your wits about you, make preparations so that if something bad happens, your last time can be spent loving each other, or putting all of yourself into hoping and working hard at him becoming healthy, instead of scurrying about worrying and making arrangements.

 
Old 11-12-2004, 09:03 AM   #4
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Re: Please help! Pulmonary fibrosis/sarcoidosis

my husband has all his advance directives, health care surrogate and funeral arrangments in order in case anything happens to him as we know what the woutcome will be when he begins downward progression . we have already made all arrangements about 2 years ago.
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Old 11-13-2004, 08:24 AM   #5
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lohrewok HB User
Re: Please help! Pulmonary fibrosis/sarcoidosis

Thank you all for your thoughtful responses. I have tried to talk to him a little about these things, but he gets extremely depressed and sad when we do. Then he says to do whatever I want to do. Which is not helpful. I just want him to be as comfortable as possible. We go see the dr. on Tuesday and I will try to get some help there.

We have only been married for 1 1/2 years. I knew about the sarcoidosis, but not about the pulmonary fibrosis. I don't even think he knew. He just would tell the dr. he was doing fine just to get out of the office as soon as possible. Meanwhile, his breathing had been getting progressively worse. At least we now know and can prepare.

I am going to see about getting him into a pulmonary rehab. I don't know why the doctor didn't suggest this before to him. That pisses me off. He is only 41 and his quality of life sucks. He could have been put on a waiting list for a lung transplant. I will ask about that also. My mind is just spinning.

Thanks for the responses and support.

 
Old 11-13-2004, 09:57 AM   #6
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delrae4753 HB User
Re: Please help! Pulmonary fibrosis/sarcoidosis

where did her get his exposure was it in the service by chance
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Old 11-27-2004, 12:36 PM   #7
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renata77 HB User
Re: Please help! Pulmonary fibrosis/sarcoidosis

Hi, lohrewok,

I'm really sorry to hear about your and your husband's troubles. My prayers are with you. It must be so difficult for you both because of being relative newlyweds and his being so young to be in such poor health.

I, too have sarcoidosis with fibrosis. As you and others have mentioned, the outcome can vary, and the only known is that the fibrosis cannot be reversed. The doctors are indeed cagey at times about the fibrosis. I don't really know how long I've had fibrosis, as I had to pin down the doctor after about five years; he wasn't going to say it on his own. I really thought I was just a stage II except that he kept having me repeat my CT's all the time. So I directly questioned him and he hemmed and hawed around and said he didn't really want to stage me because he didn't want me to be unduly alarmed. He said I was doing well in spite of my stage (he never said IV, but he did admit to fibrosis, case closed) and that I should not expect to deteriorate any further. I'm just on Advair at present and doing quite well. Fibrosis is NOT always a death sentence. It can be relatively mild, or more severe as in your hubby's case.

So, it is not always just bad bedside manners when docs aren't upfront about fibrosis vis a vis prognosis; sometimes the doctors really are afraid the patient will misinterpret such info. My doctor is a gem; he should have trusted me more, but I know by his manner that he cares about what happens to me and respects me as a patient. This was the only thing he wasn't up front about right away.

In your husband's case, though, it seems as though his doctor could have gone a long way farther in keeping you informed. The prognosis is still something that cannot be said for sure; as you and others have mentioned, but it sounds as if you were not given any information beyond the diagnosis.

I read a couple of your other posts, and it seems that you have more answers after his recent appointment with the doctor, because I see elsewhere that you mentioned his being on a transplant list. Did the doctor help you with your other questions, and do you have a better idea of his prognosis? I hope and pray he was able to reassure you.

If he is not being more helpful than he seems to have been in the past, perhaps it's time to find a new pulmo. You and your husband deserve someone who is doing the utmost to treat him and to keep you informed.

You guys are in my prayers!
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Last edited by renata77; 11-27-2004 at 12:47 PM.

 
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