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Support for people with interstitial lung disease
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Kabimima



Joined: 25 Sep 2012
Posts: 30
Location: Upstate NY

Post Posted: Sun Feb 16, 2014 6:33 pm Reply with quote    Back to top    

DH's numbers were screwy but it was a bad copy of a report. So his IPF diagnosis didn't change and he was not picked for the clinical trial he was trying to get into. Everything checked out except that his CT showed more GG opacities and less honeycomb ing, and the classic iPF pattern is the other way around. So we are back where we started.

K

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Husband diagnosed with IPF/UIP via OLB done with a triple bypass 8/21/12.
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'Tis Maggie



Joined: 20 Jan 2012
Posts: 365
Location: Bellefonte, Pennsylvania

Post Posted: Sun Feb 16, 2014 7:33 pm Reply with quote    Back to top    

Is your husband still being treated by Dr. Padilla? If so, can I ask what medications he's on? I wondered if it was about the same that she had prescribed for me.

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Maggie
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Kabimima



Joined: 25 Sep 2012
Posts: 30
Location: Upstate NY

Post Posted: Sun Feb 16, 2014 7:52 pm Reply with quote    Back to top    

He's on n-acetylcistine 600 mg/ day taken in 3 doses, Lasix, doxycycline and omeprazole.

Does that match up for you?

K

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Husband diagnosed with IPF/UIP via OLB done with a triple bypass 8/21/12.
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Kabimima



Joined: 25 Sep 2012
Posts: 30
Location: Upstate NY

Post Posted: Sat Feb 06, 2016 6:27 pm Reply with quote    Back to top    

Well 2016 is here and still so are we. My husband was diagnosed about 3 1/2 years ago. His fvc and dlco have gone from the low 60% then to low 40% now. He was told last week to see if he is a candidate for a lung transplant. So, off we go. He was on a clinical trial that abruptly ended, so we are still waiting to find out if he was getting the drug or placebo.

He is not sure about a transplant. I'm trying to keep all the options on the table but he may not be ready.

So we'll see where we go from here.

Health and happiness to all.

K

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Husband diagnosed with IPF/UIP via OLB done with a triple bypass 8/21/12.
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mouser



Joined: 02 Oct 2005
Posts: 414
Location: Arizona

Post Posted: Sat Feb 06, 2016 6:33 pm Reply with quote    Back to top    

by some miracle his disease is asleep!!
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Kabimima



Joined: 25 Sep 2012
Posts: 30
Location: Upstate NY

Post Posted: Sun Oct 23, 2016 5:48 pm Reply with quote    Back to top    

Well, my DH just turned 59. He is 4+ years post IPF diagnosis now and holding his own. Numbers keep decreasing but slowly. He refuses oxygen so far. Was told to get seen for a transplant but the visit to Columbia completely freaked him out. So he won't do anything else about it. He thinks he can just jump in later when he feels worse, but that may not be the case. I'm just hoping he doesn't eventually regret the decision. As we now have a 19 year old and a 10 year old, I wish he was more proactive but it is his decision. He can't forget the triple bypass 4 years ago and the thought of another big surgery scares him.

So we are still going day by day. Just thought I'd check in as it has been a long time.

He was in the rainier clinical trial but was getting the placebo we just found out. It gave home hope for a while, but when it ended I think that was the last trial he will participate in.

Wishing everyone health and happiness!

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Husband diagnosed with IPF/UIP via OLB done with a triple bypass 8/21/12.
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mouser



Joined: 02 Oct 2005
Posts: 414
Location: Arizona

Post Posted: Sun Oct 23, 2016 6:16 pm Reply with quote    Back to top    

My husband was diagnosed 15 years ago. Today another acquaintance died after 15 years. They were diagnosed 1 week from each other.
My husband is having more problems now and with all of his health issues.
He has made his own decisions and I just do support and make sure he gets good medical care. This lung disease has no promises and they gave him 5 years. He chose no treatment including biopsy. He briefly took cellcept and he got very ill as Western European men sometimes can not break it down and it accumulates in the vital organs.
It must be really scary with having such a young child. I am so sorry for all this responsibility.
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ninerfan



Joined: 23 Feb 2011
Posts: 410
Location: Scottsdale, AZ

Post Posted: Thu Dec 01, 2016 5:15 pm Reply with quote    Back to top    

I suffered 12 years through ILD, PH, CHF, and eventually near complete loss of pulmonary function. I'm 49. Six months ago I survived a fight for my life by receiving the greatest gift of my life, new lungs. My family helped me stay strong a credit me with being a true fighter. That's what you and DH need to be. Fighting to stay as physical as you can right up to the day he might be eligible for a transplant. There are risks, but believe me it is worth it. I'm back to work off oxygen and stronger than I've been in ten years. I've met dozens that are living new a wonderful lives with their gift. Find the hospital nearest you that does the highest volume of transplants and work with the pulmonologist there. They have seen it all and will help, getting to know them now and establish relationships will really help in the long run. We were afraid, and you'll be too. Seek support from family and see counselling if available to you. You can do this. Keep loving each other and hold tight. Bless you and yours.

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Age 48
DX 12/2004 ILD - transplant fixed
DX 5/2011 Pulm Hyper - transplant fixed
DX 8/2015 CHF - Transplant fixed
Prednizone and Imuran 2004-2005
PH meds 2011- May 2016
Bi Lateral Lung transplant May 2016
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russc



Joined: 24 Jul 2010
Posts: 50
Location: PA

Post Posted: Thu Dec 01, 2016 8:16 pm Reply with quote    Back to top    

Good for you ninerfan!

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RAC
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Kabimima



Joined: 25 Sep 2012
Posts: 30
Location: Upstate NY

Post Posted: Sun Jan 29, 2017 5:29 am Reply with quote    Back to top    

My husband, had to accept o2 at home this week. A difficult milestone. DLCO at 38%, FVC at 48%. CT also shows a 9mm solid, noncalcified nodule in the midst of the fibrosis on one lung. And enlarged mediastinal lymph nodes at multiple stations Apparently the nodule was questionable on his CT 12 months ago, so it has grown. Also anemic. So not the best news. He is 4.5 years post diagnosis now. He met with one transplant center last summer but it honestly freaked him out. So we need to know what the nodule is to know if he can move forward now that his SOB is worse.Doctor wants to wait and do another CT in 3 months, but we want a PET scan now. That is also what the radiologist recommended on the CT report. So, onward and upward.
I hope that you all are hanging in there too.

K

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Husband diagnosed with IPF/UIP via OLB done with a triple bypass 8/21/12.
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