Restrictive Lung Disease....what Is He Feeling?

[Margaret]

Hi, Everyone....Once again, I need some help in figuring out what Gareth is feeling. His PFT showed mild restrictive lung disease. Today in gym class, his aide said he ran very little around the track and tired easily. I am getting the feeling that none of his doctors want to take control of him till we hear back from Dr Medsger.....that will be 3 weeks tomorrow. For those of you with RLD....is it painful when you run/exercise? His aide wanted to know if there should be restrictions for PE. Is it a tightning feeling, hurting feeling, breathless feeling.... I don't have a clue!!!

Thank you and take care, Everyone.

Margaret

[LisaBulman]

Hi Margaret,

I have ILD and it is awful sometimes. Lately just sitting around I am having a lot of difficulty breathing. It feels like I have a huge rubberband around me and I need to take a deep breath but I can't. When I exercise my lungs burn and I get short of breath very easy. I always try to fight it, but eventually I have to take a break. For me it is more frustrating than anything. The simple little things like chasing my kids are sometimes a chore.

 

I hope this helps.

 

Hugs,

Lisa

[Clementine]

Margaret,

I have ILD too. If I am exercising it can get uncomfortable for me and I even use supplemental oxygen! It feels tight like I cannot get enough air. I don't feel it at all if I'm just doing normal activities but I am also being treated. It's hard to say, but if it's not too difficult for Gareth to limit his exercise, I certainly would. It must be so hard having him go through this. I think everyone feels different. When I first got sick, I did have major chest pain. It's two years later and it is so much better as far as how I feel. I'd be concerned that his oxygen saturation is getting too low in gym class.

Good luck

Jennifer

[janey]

Margaret,

My symptoms are very similar to Jennifer's and Lisa's except for the pain. I've never really suffered from chest pains. I do however get very short of breathe with exercise, walking up hill, or now-a-days, just walking too fast. I am on supplemental oxygen and it does help. After exercise I'm very tired and have to take a long break. When I try to take a deep breathe I can usually get through one easily but if I try a second time, I go into a coughing fit.

 

Has Gareth had any lung function tests or x-rays or a CT? These are the usually tests for determine lung problems. Hopefully you'll find the cause of his getting tired easily in gym. I'll know you'll be staying on top of it.

 

Big Hugs,

[barefut]

Hi Margaret,

 

I also have (mild - moderate) ILD. My symptoms are much the same as Jennifer, Janey and Lisa though sounds like to a lesser degree. I am not on oxygen.

 

Last summer I could actually mow the lawn withno problems. As long as I go slow and steady I'm ok. Don't ask me to run though! :blink: And even a short distance of brisk walking gets me panting pretty quick.

 

Take Care,

Barefut

[Margaret]

<<Has Gareth had any lung function tests or x-rays or a CT? >>

 

Hi, Everyone.....thank you for your help in explaining what you are feeling.

 

Janey....Gareth had a CT scan and X-ray done in Dec. Nothing showed up as far as fibrosis, etc. The Pul fuct test done in Feb showed the 'mild restrictive lung disease.' I don't know if RLD is the same as ILD. I am wondering if his lung issues have progressed since Dec. to the point where fbrosis would show up on an X-ray. He sees his rheumatologist the end of April. Guess that is something to ask about.

 

<<It feels like I have a huge rubberband around me and I need to take a deep breath but I can't. >>

 

Lisa and Jen....he has said before "Tight, Mom" when he gets home from playing basketball or tennis!!! Maybe that is what he's feeling....a tighning sensation and not being able to breath deeply. He ususally just sits in the recliner for the rest of the evening doing as little as possible.

 

Thanks again, Everyone. I so appreciate it.

Margaret