Clementine

Interstitial Lung Disease

23 posts in this topic

Lisa,

Thanks for sharing your numbers. I never knew what the FEV! liters meant....still don't. Mine are 2.24 liters and 72% and DLCO is 13.87 or 50%. I also thought the FVC was important.

Have fun shopping while the others ski. I'd do the same thing.

xo

Jennifer

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Hi Lisa,

 

So glad you holding steady. I know that is quite a relief for you. HOpe the dizziness gets better too. I had that a month or two ago when all this flare up started. It did seem to resolve itself. I hope it does for you too.

 

Also, Janey thanks for replying. Do you have to use oxygen at all after exercise or night? I am wondering if oxygen would help treat pulmonary hypertension. How are you feeling?

 

Susie54

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Hey Lisa,

 

That is awesome news about your liver enzyme numbers!! Yippee! I am sure that was a relief. I hope you have a fun weekend!

 

Warm wishes,

Heidi

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Susie,

Before being prescribed supplemental oxygen the doctor did a couple of O2 saturation tests I had to wear an oximeter all night while I slept and another test of walking me around the track at the hospital with the oximeter. The nighttime showed that my O2 sat was in the 80's 74% of the time when I slept. When walking, my O2 dropped to 81 in the first 20 feet (so we turned back) When I'm sitting still it's above 95 and if I "truly mosey" I can keep it in the 90's. So I' sleep with supplemental oxygen and when I walk any significant distance or exercise I use it. Around the house I've learned the real art of moseying so I don't use it much during the day. Since my job is as a technical writer/researcher, I'm sitting at the computer most the time so this system works out. After a month on Bosentan, my O2 dropped only to 88 when walking from the lobby to the doctor's exam room. So that showed improvement!

 

I'm feeling better and better everyday. Thanks for asking. I'm getting my strength and endurance back slowly but surely. My current challenge is being able to come up the steps to my front door. They are abnormally steep steps, so they might take a while. The hubby has to deal with lifting stuff like full laundry baskets, but that strength will eventually return as well.

 

Hope things are going well with you. Everything O.K?

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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WhooHoo Lisa!!!! What a great week of good outcomes and good test results you and your family have had. I hope the trend continues.

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hey Jennifer,

 

I just had a right heart cath done to check for PAH, and the cardiologist that I saw said that it is very rare for a person to have both PAH and ILD. I have had ILD for years now, and my right heart cath came back normal. So she was right where I was concerned.

 

Hope your doin' well! and stayin' happy and warm!!!


Happy people don't have the best of everything, they just make the best of everything they have!

 

Warm and Happy to you! Vee

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GOOD TO KNOW about the PAH and ILD!

Thanks for sharing Vee,

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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