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Support for people with interstitial lung disease
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LoriB



Joined: 22 Dec 2002
Posts: 1008
Location: Nashville, TN

Post Posted: Mon Dec 05, 2016 8:42 am Reply with quote    Back to top    

I'm sorry to see this forum isn't very active anymore. For anyone that finds themselves here, even though there aren't many new posts, there is a ton of helpful information if you search through the older posts. Love and best wishes to all of you.

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Husband diagnosed with IPF in March 2002.
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BrendaJ



Joined: 16 Jun 2011
Posts: 745
Location: Canada

Post Posted: Mon Dec 05, 2016 6:27 pm Reply with quote    Back to top    

We used to check in every few months just to let everyone know we how we were doing. It was always good to see many people checking in. Maybe we could do this right now and just wish everyone a Merry Christmas or Happy Holidays.
I just celebrated my 2nd anniversary from my double lung transplant. I have a little scarring on my new lungs but it has not increased and isn't bothering me. The weight gain from the anti-rejection drugs is a different story. Fortuantely they have just cut back my prednisone, so I am hoping this helps. But still here and breathing well. Hope everyone else is doing the best they can and enjoy a Merry Christmas with family and friends.

_________________
Diagnosed in '08. IPF/UIP , lifetime non-smoker.
Lung Transplant Listed Jan/14
Transplanted Nov/14
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LoriB



Joined: 22 Dec 2002
Posts: 1008
Location: Nashville, TN

Post Posted: Tue Dec 06, 2016 4:33 am Reply with quote    Back to top    

Glad to hear you are doing well! I hope more folks check in. I'd love to know what's going on with everyone!

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Husband diagnosed with IPF in March 2002.
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ninerfan



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

Post Posted: Wed Jan 11, 2017 11:17 am Reply with quote    Back to top    

I'm now 8 months post transplant and doing very well. I am glad to see some of you are still posting now and again, and always wishing you all the very best. I hoping 2017 sees more miracles for us all.

_________________
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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Carhaha



Joined: 06 Nov 2013
Posts: 68
Location: Rice Lake, WI

Post Posted: Thu Jan 19, 2017 7:11 pm Reply with quote    Back to top    

Breathing is mostly okay, nothing spectacular. Been on 15 mg of prednisone for over nine months. Pulmonologist thinks that is as low as I will ever be able to get but I am determined to keep trying to lower the dose. Over these past seven years, every time I get around 10 mg or lower, I have a terrible decline in lung function. Bones are taking a hit, desperately thin bones, and now have three fractures...wrist (before diagnosis of lung disease, well healed), arm (will never heal, orthopedist tells me because of prednisone, but very little bother to me), and now a fracture of my back, painful but getting better. I will have to moderate the exercises I have been doing and oh, that is heavy news for me. I have always figured my dedicated exercising has forestalled the worst of my chronic hypersensitivity pneumonitis. Looking forward to spring when I can safely walk and walk, my new "best exercise." Too much cold, ice and snow to do much now.
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Kabimima



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

Post Posted: Fri Jan 20, 2017 7:50 pm Reply with quote    Back to top    

Hi,
I pop in from time to time. My husband is still with us but declining. He was told to get tested for a transplant last summer but had one appt. and never went back. I think his triple bypass left him too afraid of another big surgery. He said he might consider it later, but I think that later is closer than he imagined. His o2 was 78 after walking 100 ft this week. Went back to dr. Not an ae they said. Having all new tests next week. HRCT, spirometry and 6 MWT with titration. So we'll see where we are. He has declined quite a bit but I think he's been hiding it by not testing his o2. Still doesn't want oxygen. Very hard for me to stand by and watch bad decisions being made.

Seeing your familiar names gives me hope. Thanks for that. All my best to all of 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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Ken



Joined: 13 Sep 2007
Posts: 371
Location: Ohio

Post Posted: Fri Feb 03, 2017 9:28 pm Reply with quote    Back to top    

It really is amazing how few posts there are to Huff n Puff these days. In the early days of my diagnosis, almost 10 years ago, I came here almost everyday. Lots of activity and so much great advice. Guess most folks are in one of the Facebook groups these days.

I had a few years with lung function improvement and then no decline. Did a 50 mile bike ride and hiked in Yellowstone just 18 months ago. These days aren't quite so easy for me but I am still blessed to not need supplemental O2 most of the time. I just recently start using a little O2 for exercise so that I can workout more vigorously. Do it yourself respiratory rehabilitation!

Hope everyone else is doing good!

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NSIP by VATS 11/07, UCTD
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Kabimima



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

Post Posted: Tue Mar 21, 2017 8:05 pm Reply with quote    Back to top    

My husband started o2 after the last post. On 4L now. CT shows a nodule 8-9mm in the midst of his fibrosis in one lung. Was seen on the CT 7 months ago as "questionable" but has grown to this size since. Repeating CT in April. Also many enlarged lymph nodes between the lungs. So not the best news, but we are holding out hope that the nodule is a lymph node. Time will tell. Doc isn't in a hurry to investigate further, which is difficult. Anyone on the east coast have a recommendation of a hospital for a lung nodule? After his next CT in a few weeks, I'd like a second opinion.

Hope you all are doing well.

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