Test confirmed Mild Restrictive Lung Disease

[fourcatmom]

I have been having a lot of problems with breathing over the last six months but especially since the end of December. I have been having a lot of testing done but most recently went in for a pulmonary function test. I also had a sleep study done last night. I am sure the sleep study will be fine and I am not really worried but the lung function test came back with Mild Restrictive Lung Disease. The doctor didn't really tell me too much but he thinks I shouldn't have this much shortness of breath even with this diagnosis. Everything I have read online says that it is a big part of lung disease.

 

I have a long history of bronchial infections from my 20's and two recent bouts with whooping couch. I am now 44. I work with special needs children and I find that I am constantly battling upper respiratory infections.

 

I am feeling very emotional right now. I have been on some meds but nothing has really made a difference and I have been off work. What can I expect. I have a return appointment next week but it's hard to wait and worry.

 

Right now, even walking into a store and picking up a few items and walking back out cause shortness of breath. I don't know what is going to happen with work but I can't even imagine how I am suppose to be able to return given how I am feeling physically. Will I live a full life with this or does this shorten my life? If I can't return to work is something that would qualify for disability?

 

Need advice and information Please!

 

TIA

Edited March 14, 2012 by fourcatmom

[Jean in Newcastle]

I don't have any advice but lots of hugs. :grouphug::grouphug::grouphug::grouphug:

[In the Rain]

:grouphug: I'm sorry, but I don't have any advice. :grouphug:

[Woodhaven]

I don't know anything about it, but I would want to speak to a specialist.

[fourcatmom]

I don't know anything about it, but I would want to speak to a specialist.

 

I am going to see my Pulmonary doctor next week but I wanted to see if I could get some real life experience or information about it before that time.

 

Thank you for the support and :grouphug:

[blondeviolin]

I don't have any practical advice, but I can commiserate with the shortness of breath. My lungs only function at 40% of what they should.

 

A good pulmonologist should be able to help you. If it really gets bad, you can see about getting a handicap placard to ease the going out experience. Mine is a godsend on certain days.

[fourcatmom]

My mom has this or something like it. They thought she had pulmonary fibrosis or lung cancer. They have never figured out exactly why she has lung scarring. She does has a partially paralyzed diaphragm.

 

She is at about 50% now and is fine. She has a handicapped sticker so she doesn't have to walk too far. She does not exercise and the her doctor told her to walk. She is probably 100 lbs overweight. She did have to retire from nursing but she near retirement anyway.

 

Obviously you want to protect what you still have. Try to stay away from people who are sick, eat healthy, and exercise.

 

My mom goes in every six months for pulmonary testing and she has not advanced in years.

 

The sucky thing is that people forget you have it because they can't see it.

 

:grouphug:

 

Thank you for that information. I think the key for me with work is going to be continuing to be exposed to illness as working with special needs children - who are preschoolers there is just no way around it and I think its the main reason I have had such problems. I have been exposed to just about everything and I can't seem to fight it.

[NoPlaceLikeHome]

I have had severe problems with asthma and colds that ended up causing shortness of breath and needed nebulizer treatments and steroids.

 

The past 10 months I have been much better. I am not sure if it is the CPAP I use for mild sleep apnea but I suspect it has been helpful especially in preventing colds from going straight to my lungs. If you do have even mild sleep apea, I would ask for CPAP therapy with nasal pillows if you are able to tolerate. CPAPtalk.com has a lot of info:)

 

Plus I would see a pulmonologist if you have not already. Perhaps you need inhalers, meds, and possibly a nebulizer for albuterol to have on hand for colds and exacerbations.

 

At the first sign of a cold, I would start elderberry, nasal rinses, salt water gargles, and alcohol mouth wash several times a day. I also take emergen C and Vitamin D3 at the first sign of a cold. I also start nebulizer treatments at the first sign of a cold going near my chest. Also, ask your doctor about the value in starting antibiotics sooner rather than later with colds due to your lung condition. Most are viral but those with lung disease might be more prone to ending up with bacterial I think. I would also get the flu shot yearly as well as the pneumovax as ordered and the pertussis booster if needed.

 

Have you been seen by a cardiologist to rule out heart problems as well? How is your weight as well? I would want to optimize weight and exercise as well. Fish oil might be helpful as well.

 

Bottom line check with your doctors.:grouphug:

 

WebMD.com and Medscape.com and drweil.com have reliable info:)

Edited March 14, 2012 by priscilla

[NoPlaceLikeHome]

One last piece of advice is to not touch your face, eyes, nose, ears, mouth unless your have just washed your hands or used alcohol gel or hand sanitizer wipes such as germex. Wash hands often and before eating and before touching face as well as the usual other times.

[fourcatmom]

I have had severe problems with asthma and colds that ended up causing shortness of breath and needed nebulizer treatments and steroids.

 

The past 10 months I have been much better. I am not sure if it is the CPAP I use for mild sleep apnea but I suspect it has been helpful especially in preventing colds from going straight to my lungs. If you do have even mild sleep apea, I would ask for CPAP therapy with nasal pillows if you are able to tolerate. CPAPtalk.com has a lot of info:)

 

Plus I would see a pulmonologist if you have not already. Perhaps you need inhalers, meds, and possibly a nebulizer for albuterol to have on hand for colds and exacerbations.

 

At the first sign of a cold, I would start elderberry, nasal rinses, salt water gargles, and alcohol mouth wash several times a day. I also take emergen C and Vitamin D3 at the first sign of a cold. I also start nebulizer treatments at the first sign of a cold going near my chest. Also, ask your doctor about the value in starting antibiotics sooner rather than later with colds due to your lung condition. Most are viral but those with lung disease might be more prone to ending up with bacterial I think. I would also get the flu shot yearly as well as the pneumovax as ordered and the pertussis booster if needed.

 

Have you been seen by a cardiologist to rule out heart problems as well? How is your weight as well? I would want to optimize weight and exercise as well. Fish oil might be helpful as well.

 

Bottom line check with your doctors.:grouphug:

 

WebMD.com and Medscape.com and drweil.com have reliable info:)

 

 

Thank you. Yes, I have seen a pulmonary doctor, he wanted the sleep study. Waiting for results but it went fine as I just did this last night. We will see what results say though. I also had an echo which was fine. I have been on advair and xopenex (sp) and a rescue inhaler as needed and singulair but I don't think they are really helping much as my reaction to activity is same as it was before all the meds. I was also on prednisone for about a week and that helped in my daily feeling better without activity. I am over weight and have been since my kids were born. I don't really feel like I eat a lot but I can't seem to loose weight either. I'd love to go walking but it's hard when walking across the street has you feeling like you are going to pass out.

 

Thanks again for the information. It has been helpful.

[NoPlaceLikeHome]

It also may be worth a trip to John Hopkins or some other prestigious place for another opinion.

 

This site has hospitals and doctors nationally ranked for pulmonolgy.

 

http://health.usnews.com/best-hospitals/search?hospital_name=Hospital+name&specialty_id=IHQPULM&city=City%2C+State+or+ZIP

[Rosie_0801]

Have you had xrays to rule out any structural issues contributing?

 

Rosie

[fourcatmom]

Have you had xrays to rule out any structural issues contributing?

 

Rosie

 

 

Yes, they did that awhile back.

 

Thanks again.:001_smile:

[anissarobert]

Have you been tested for Alpha One Antitrypsin Deficiency? It is a genetic condition that involves the lungs and causes these types of problems.

[fourcatmom]

Have you been tested for Alpha One Antitrypsin Deficiency? It is a genetic condition that involves the lungs and causes these types of problems.

 

No. I have never heard of this. I don't believe anyone else in the family has lung disease.

[anissarobert]

No. I have never heard of this. I don't believe anyone else in the family has lung disease.

 

It could be worth asking about. It is actually quite common, but many doctors don't know about it. In our case, my dh and I are both carriers and we would never have known it if our dd hadn't been sick. It often does not show up until early onset lung problems develop in adulthood.

[Guest chmelina]

My mom has this or something like it. They thought she had pulmonary fibrosis or lung cancer. They have never figured out exactly why she has lung scarring. She does has a partially paralyzed diaphragm.

 

She is at about 50% now and is fine. She has a handicapped sticker so she doesn't have to walk too far. She does not exercise and the her doctor told her to walk. She is probably 100 lbs overweight. She did have to retire from nursing but she near retirement anyway.

 

Obviously you want to protect what you still have. Try to stay away from people who are sick, eat healthy, and exercise.

 

My mom goes in every six months for pulmonary testing and she has not advanced in years.

 

The sucky thing is that people forget you have it because they can't see it.

 

:grouphug:

 

This thread is a bit old but I wanted to connect with you Carol because my dad also has a paralyzed diapghram and the doctor told him today he has restricitive lung disease. I wasnt at the appointment so I couldnt ask questions. If there is a way to private message me, would yuo please do so and just tell ma a bit more about yor moms experience? I would really appreciate it. Thank you

[In the Rain]

Since this thread was bumped back up by someone else, how are you doing, fourcatmom? I hope over the last six months you've healed and improved. :grouphug:

[fourcatmom]

Since this thread was bumped back up by someone else, how are you doing, fourcatmom? I hope over the last six months you've healed and improved. :grouphug:

 

Thank you for asking. I was actually just also diagnosed with Fibro. That would be my third diagnosis. I am applying for disability but since some recent threads have come up on here, I am not feeling as hopeful that I will get approved. No change in my symptoms, just trying to stay healthy. I did just get tested for about 13 other things today, Lupus, Hepatitis, and I don't know what else but they took 9 vials of blood. I am hoping for good results and no more bad news. They did confirm that there is scar tissue in my lungs, probably from the 2 episodes of whopping cough that I had in a period of a little over a year.

 

Just realized how old this thread was. They took me off work in January and I have not been able to return. There is just no way. I did also get the confirmation for Sleep Apnea and I can't wear the mask due to the breathing, I just take in the air and it makes me sick. I am waiting for a dental piece to see if that helps. So, seven months and longer of dealing with that with no relief. If I go to the grocery store, I can't even talk at the same time because I have to work so hard to breath.

 

I still have the lung disease diagnosis, I just have more added to my overall health with the Fibro and Sleep Apnea.

Edited September 7, 2012 by fourcatmom

[In the Rain]

Thank you for asking. I was actually just also diagnosed with Fibro. That would be my third diagnosis. I am applying for disability but since some recent threads have come up on here, I am not feeling as hopeful that I will get approved. No change in my symptoms, just trying to stay healthy. I did just get tested for about 13 other things today, Lupus, Hepatitis, and I don't know what else but they took 9 vials of blood. I am hoping for good results and no more bad news. They did confirm that there is scar tissue in my lungs, probably from the 2 episodes of whopping cough that I had in a period of a little over a year.

 

Well gosh, that is not the best of news. :grouphug: I'm sorry you aren't feeling any better, and that you've received a new diagnosis. I've had cycles in my life where it seems like one thing after another is just piled on. :( Hopefully with the new diagnosis the doctors will know better how to help you find some relief.

[Peaceful Isle]

:( I'm so sorry you are going through all these things!

Hopefully things will start looking up for you very soon.

 

Hugs :grouphug: and prayers!

 

Lindsay

[fourcatmom]

:( I'm so sorry you are going through all these things!

Hopefully things will start looking up for you very soon.

 

Hugs :grouphug: and prayers!

 

Lindsay

 

Thank you.

 

I would be interested in knowing if any of the posters who had family members with Lung Disease were able to receive any kind of support from disability?

 

So, technically for me it's

 

Fibromyalgia

Restrictive Lung Disease (70%)

Sleep Apnea

 

Thanks for the help and support. Sometimes, I can't believe it's been almost a year already since I first starting noticing symptoms and over 9 months since they took me off of work. It's takes so long to get answers. :confused:

[fourcatmom]

My mom is on disability that she paid into during her nursing years. It was a private policy.

 

I'm sorry to hear that you have more on your plate now.

 

Well at least she has something. With the school district we get some extended 50% pay sick leave but no short term disability, so I am hopeful for the long term since that will run out.

[Peaceful Isle]

Thank you.

 

I would be interested in knowing if any of the posters who had family members with Lung Disease were able to receive any kind of support from disability?

 

So, technically for me it's

 

Fibromyalgia

Restrictive Lung Disease (70%)

Sleep Apnea

 

Thanks for the help and support. Sometimes, I can't believe it's been almost a year already since I first starting noticing symptoms and over 9 months since they took me off of work. It's takes so long to get answers. :confused:

 

My Best friend's MIL has a lung disease. She was able to get disability. Hers is called aspergalomma. I think you should be able to get the disabililty without a problem. It is a waiting game. It took my dh 9 months to get disability for his MS, so don't give up! You almost have to work it like a second job, but it is soooo worth it, when you finally have it.

Praying for you during this time :grouphug:

Edited September 7, 2012 by mommyof4AZ

[fourcatmom]

My Best friend's MIL has a lung disease. She was able to get disability. Hers is called aspergalomma. I think you should be able to get the disabililty without a problem. It is a waiting game. It took my dh 9 months to get disability for his MS, so don't give up! You almost have to work it like a second job, but it is soooo worth it, when you finally have it.

Praying for you during this time :grouphug:

 

Thank you! I appreciate all the info and feedback.

[Denisemomof4]

:grouphug::grouphug::grouphug: I am so sorry.

[fourcatmom]

Thank you, I won't give up.

 

I also found out that although they said it was "mild" - mild was 71% which is technically what I have and moderate starts at 70%. So, it's really closer to moderate then mild, imo. My goal is to not loose any more. I am only 45 so what I feel is pretty scared sometimes, especially when I think about the long-term and how young my kids are.

 

Thanks again! :001_smile:

[Perry]

I would urge you to get a second opinion, and find someone highly recommended. 70% is mild and your shortness of breath seems more severe than you would expect. Something else seems to be going on and I would want to find out what.

 

:grouphug::grouphug::grouphug:

 

Good luck.

Edited September 7, 2012 by Perry

[fourcatmom]

I would urge you to get a second opinion, and find someone highly recommended. Normal values are 80%, NOT 100%, so 70% is mild and your shortness of breath seems more severe than you would expect. Something else seems to be going on and I would want to find out what.

 

:grouphug::grouphug::grouphug:

 

Good luck.

 

Yes, my pulmonary doctor really sucks (to be honest) and even my regular doctor is not happy with him. He is more focused on the sleep issue then the lungs and breathing. The other two doctors are better but there our not a lot of options with pulmonary doctors in my area. I am looking into getting a new referral though. Even the Fibro (rhuematologist -sp?) recommended it. She even thought that my breathing difficulties warranted oxygen. She is the one running the new 13 tests.

[Desert Rat]

Find yourself a good Pulmonolist. They are very good at helping breathing disorders. I firmly believe my dad wouldn't have lived as long as he did if not for his pulmonogist. Hugs to you. I know it's so hard. Rest assured that my dad lived for 60 years after his lung issues began (from an iron lung used when he had polio). He lived a productive life. I know it's so scary. But, find a good doctor. There are lots of options out there to help with breathing issues. More hugs for you.

[fourcatmom]

Find yourself a good Pulmonolist. They are very good at helping breathing disorders. I firmly believe my dad wouldn't have lived as long as he did if not for his pulmonogist. Hugs to you. I know it's so hard. Rest assured that my dad lived for 60 years after his lung issues began (from an iron lung used when he had polio). He lived a productive life. I know it's so scary. But, find a good doctor. There are lots of options out there to help with breathing issues. More hugs for you.

 

Thank you. I am really sorry about your Dad. :grouphug: You nearly brought me to tears with your tribute. It sounds like you will have the best memories of him to keep with you.

[Dobela]

While I was having a CT scan (or an MRI, I can't remember now) for my gall bladder, hystoplasmosis was found in my lungs. I didn't know about it until I requested the report from the radiologist to give to a different doctor for the potential gall bladder problems. Apparently I have significant scarring from that, but they could not determine if it was active or not. It is also thought I contracted it from being in damp places like caves, not from cats. I still can't get any answers beyond that, and I wonder if it is part of the reason why I got such a bad case of bronchitis this fall already.

 

So, that being said, you may want to spend the money to get copies of all reports for yourself. What has been found, but not shared with you or addressed by any doctors, can be quite eye opening to say the least.

[Perry]

hystoplasmosis was found in my lungs. I didn't know about it until I requested the report from the radiologist to give to a different doctor for the potential gall bladder problems. Apparently I have significant scarring from that, but they could not determine if it was active or not. It is also thought I contracted it from being in damp places like caves, not from cats.

 

Histoplasmosis is caused by a fungus that lives in the soil, and is carried by birds and bats.

 

Toxoplasmosis is a parasite carried by cats. Totally different disease.

 

:)

[fourcatmom]

Histoplasmosis is caused by a fungus that lives in the soil, and is carried by birds and bats.

 

Toxoplasmosis is a parasite carried by cats. Totally different disease.

 

:)

 

This is probably a stupid question but your talking more about wild birds then pet birds, correct?

[fourcatmom]

While I was having a CT scan (or an MRI, I can't remember now) for my gall bladder, hystoplasmosis was found in my lungs. I didn't know about it until I requested the report from the radiologist to give to a different doctor for the potential gall bladder problems. Apparently I have significant scarring from that, but they could not determine if it was active or not. It is also thought I contracted it from being in damp places like caves, not from cats. I still can't get any answers beyond that, and I wonder if it is part of the reason why I got such a bad case of bronchitis this fall already.

 

So, that being said, you may want to spend the money to get copies of all reports for yourself. What has been found, but not shared with you or addressed by any doctors, can be quite eye opening to say the least.

 

And your doctor never even mentioned this to you?

[Perry]

This is probably a stupid question but your talking more about wild birds then pet birds, correct?

Not a stupid question at all! Especially if you have a pet bird.

 

Histoplasmosis occurs mainly in wild birds and bats, but could possibly be carried by a pet. Probably pretty uncommon though.

 

More common is psittacosis, which does occur in pet birds and can cause respiratory illnesses. It generally causes an acute pneumonia like illness though, and I'm not aware of it causing chronic symptoms.

 

But if you have a pet bird, definitely mention it to your doctor!

[Perry]

Not a stupid question at all! Especially if you have a pet bird.

 

Histoplasmosis occurs mainly in wild birds and bats, but could possibly be carried by a pet. Probably pretty uncommon though.

 

More common is psittacosis, which does occur in pet birds and can cause respiratory illnesses. It generally causes an acute pneumonia like illness though, and I'm not aware of it causing chronic symptoms.

 

But if you have a pet bird, definitely mention it to your doctor!

 

 

I just noticed your siggy, and that you have a parrot. You should definitely mention that next time you see your doctor.

[fourcatmom]

I just noticed your siggy, and that you have a parrot. You should definitely mention that next time you see your doctor.

 

My Mom has always said that, especially since she is in the room that I sleep in. :confused: However, she has been with me since I adopted her at a baby age and is not exposed to any other birds, ever. She is 13 now and very healthy, imo. but it wouldn't hurt to mention it.

[Perry]

I just noticed your siggy, and that you have a parrot. You should definitely mention that next time you see your doctor.

 

That parrot raises several possibilities. There are several infectious diseases, but something else to consider is allergic alveolitis, one type of which is called bird-fanciers lung. Tons of info on Dr. Google.

[Perry]

My Mom has always said that, especially since she is in the room that I sleep in. :confused: However, she has been with me since I adopted her at a baby age and is not exposed to any other birds, ever. She is 13 now and very healthy, imo. but it wouldn't hurt to mention it.

 

People with allergic alveolitis from birds usually have intense exposure, like occupational exposures to lots of birds, or breeders. But it's certainly a possibility.

[Dobela]

And your doctor never even mentioned this to you?

Never, not once. And when I showed the results to two different doctors after finding the result, they just pushed it aside. One said, "Well, you live in Arkansas and pretty much anyone who lives here has it or has been exposed to it. It is no big deal really." I don't believe that after reading about it, but myhands are more or less tied at this point.