FRUSTED Lung Disease Suffer....

[disney212]

Any fellow lung disease suffers out there? I have histoplasmosis (aka Ohio River Valley Fever, Mississippi River Valley Fever. I had the lymph nodes in my chest removed on March 6, 1/2 of my lung on March 16 and just got out of the hospital last night. Found out the medicines I take for my Crohn's disease was counteracting the drugs for the lungs. For the last 9 months the histo has grown uncontrolled all because the pulmonary doctor thought he could "handle it" and didn't contact an Infectious Disease Specialist. I have to have another PET scan this week to make sure it isn't turning to cancer like it did in March. I am so FRUSTRATED! They are waiting on more test to see which of my organs it has infected. Right now my main symptom and what sent me to the ER is chest tightness/discomfort and shortness of breath. As long as I sit and don't do anything it makes it a little better but I am in my 40's, a mom, a full time job, house, etc. I can't just sit. I have been saying for month's that my chest hurt and once again was told that it was a cold, asthma, bronchitis even with my history. The doctors said my 100 year old house and the area we live in are also affecting it. I guess I need to hit the lottery, move out of the area and give my house away. Not doable as DH and I work for everything we have. Thanks for letting me vent.

 

[indimom]

Any fellow lung disease suffers out there? I have histoplasmosis (aka Ohio River Valley Fever, Mississippi River Valley Fever. I had the lymph nodes in my chest removed on March 6, 1/2 of my lung on March 16 and just got out of the hospital last night. Found out the medicines I take for my Crohn's disease was counteracting the drugs for the lungs. For the last 9 months the histo has grown uncontrolled all because the pulmonary doctor thought he could "handle it" and didn't contact an Infectious Disease Specialist. I have to have another PET scan this week to make sure it isn't turning to cancer like it did in March. I am so FRUSTRATED! They are waiting on more test to see which of my organs it has infected. Right now my main symptom and what sent me to the ER is chest tightness/discomfort and shortness of breath. As long as I sit and don't do anything it makes it a little better but I am in my 40's, a mom, a full time job, house, etc. I can't just sit. I have been saying for month's that my chest hurt and once again was told that it was a cold, asthma, bronchitis even with my history. The doctors said my 100 year old house and the area we live in are also affecting it. I guess I need to hit the lottery, move out of the area and give my house away. Not doable as DH and I work for everything we have. Thanks for letting me vent.

Keep on top of it and don't be afraid to get a second or third opinion. I don't know a great deal about histo itself, but my daughter is dealing with a disease of the retina that is "believed" to be caused by histo, so I've researched this topic a bit. From what I've read, some people need treatment with anti-fungals for up to two years. Particularly those with immune system issues (which I think Crohn's relates to?).
I'm very sorry you are going through all of this. I hope you find a treatment that works for you and you recover soon. Good Luck.

 

[disney212]

Thank you and good luck to you daughter.

I think I am most frustrated by the fact that I got 2 second opinions and everyone (6 doctors) missed the interaction. For the last 9 months I kept telling them I still hurt and was repeatedly dismissed.

I spent 3 hours on the phone this morning with doctors trying to figure how I am supposed to proceed. Everyone keeps passing the buck while I sit here struggling to breath. Very frustrating.

 

[jmartinez1895]

I don't know anything about your condition or the are you live in, but first let me tell you that I am praying for you and sending warm thoughts your way. My son has a rare seizure condition and when he was first diagnosed I did not feel that he was getting the care we needed. I googled " doctors who specialize in ( insert your condition)" and then when I found a few, even one in EU I email them and asked if they had any input. One contacted my sons doctor and got us in touch with a doctor in our area that could help. We live a few minutes out side of Birmingham, AL which has many of the leading doctors so we are blessed, but maybe you could do some searching and out reach. I'm not sure if you have tried that yet, but if not all it would cost you is a few hours of your time.
I sure hope and pray that you can get the help you need and that you find some relief.

 

[JennyDrake]

I am a histo-survivor. I contracted it in 1972 and went undiagnosed for a year. It went systemic and nearly killed me as there were no anti-fungal drugs approved for children. I am 47 now and (only) have 40% lung capacity due to scarring. BUT in November I completed my first half marathon! I will always require more rest and my respiration rate is higher, but I lead a full and wonderful life!!

 

[Chickenlady]

I am also a systemic histo survivor. I caught the disease in 2003 (prob.) while working with chickens. It took about 6 months of visiting every doc. known ot man to finally get the histo diagnosis. I was told I had everything from reflux, stress, asthma, panic attacks to cancer. After diagnosis, it took more than a year of treatment...started on oral pills, switched to liquid, several different antifungals then 3 separate 3 month courses of amphoteracin B...ampho-terrible as all the nurses would say. I had to quit my job and take diasability retirement. Now, 10 years later, I still suffer from shortness of breath, fever, fatigue, joint pain and all other type of crud. I never in a million years would have thought that a stupid fungus could have turned my life upside down like this. We moved from Arkansas to New England to get away from the endemic histo., as the doc. said I couldn't handle any more "treatment" if I were to catch histo again...kidney damage from the amphoteracin.
I can totally understand your frustration with the medical community and the length of time it seems to be taking to get anything done. I was seen by some of the best histo doc. in the world (got sick in a great histo area) and it nearly killed me. I've learned that taking care of myself and ignoring strangers who give me dirty looks about my ECV goes a long way in coping.

 

[disney212]

I don't know anything about your condition or the are you live in, but first let me tell you that I am praying for you and sending warm thoughts your way. My son has a rare seizure condition and when he was first diagnosed I did not feel that he was getting the care we needed. I googled " doctors who specialize in ( insert your condition)" and then when I found a few, even one in EU I email them and asked if they had any input. One contacted my sons doctor and got us in touch with a doctor in our area that could help. We live a few minutes out side of Birmingham, AL which has many of the leading doctors so we are blessed, but maybe you could do some searching and out reach. I'm not sure if you have tried that yet, but if not all it would cost you is a few hours of your time.
I sure hope and pray that you can get the help you need and that you find some relief.

Thank you for the prayers they are appreciated! I am very sorry to hear about your son, I hope he is getting great care and in good health. I am working with the Health Advocate from my company and they are trying to get a specialist.

 

[disney212]

I am a histo-survivor. I contracted it in 1972 and went undiagnosed for a year. It went systemic and nearly killed me as there were no anti-fungal drugs approved for children. I am 47 now and (only) have 40% lung capacity due to scarring. BUT in November I completed my first half marathon! I will always require more rest and my respiration rate is higher, but I lead a full and wonderful life!!

Wow! I have been told that it is very rare for younger folks to have issues with histo (I was told I was young at 44). Glad you are doing so well. I have to say KUDOS to you on the marathon. Less than 30 days ago I was walking up to 12 miles per day, now I can barely make it through the grocery store. Any tips you have would be greatly appreciated. Have you had to have surgery, do you still treat it, what type to you have? Sorry to ask so many questions but I have not met anyone under 75 with it.

 

[disney212]

I am also a systemic histo survivor. I caught the disease in 2003 (prob.) while working with chickens. It took about 6 months of visiting every doc. known ot man to finally get the histo diagnosis. I was told I had everything from reflux, stress, asthma, panic attacks to cancer. After diagnosis, it took more than a year of treatment...started on oral pills, switched to liquid, several different antifungals then 3 separate 3 month courses of amphoteracin B...ampho-terrible as all the nurses would say. I had to quit my job and take diasability retirement. Now, 10 years later, I still suffer from shortness of breath, fever, fatigue, joint pain and all other type of crud. I never in a million years would have thought that a stupid fungus could have turned my life upside down like this. We moved from Arkansas to New England to get away from the endemic histo., as the doc. said I couldn't handle any more "treatment" if I were to catch histo again...kidney damage from the amphoteracin.
I can totally understand your frustration with the medical community and the length of time it seems to be taking to get anything done. I was seen by some of the best histo doc. in the world (got sick in a great histo area) and it nearly killed me. I've learned that taking care of myself and ignoring strangers who give me dirty looks about my ECV goes a long way in coping.

I am so sorry to hear of your struggles. Even the Infectious Disease doctor that had me see seems to have the attitude that "its no big deal". They keep telling me everyone in our area has it. I am no convinced they know what they are doing. I have already had 2 surgeries and seem to be getting worse. They mentioned me moving to costal FL (the cold really hurts me). I can't even get the doctors to give me any time off work, how in the world did you get disability? Sorry to ask all these questions but I keep getting the "brush off" from the medical community. I was just told by my doctor there is nothing they can do to help with the shortness of breath I have. I am at my wits ends, I just feel like crying all the time. As I posted in another reply, in December is was walking around Disney with some discomfort, now I can't walk through the grocery without sitting down to catch my breath.

 

[disney212]

Keep on top of it and don't be afraid to get a second or third opinion. I don't know a great deal about histo itself, but my daughter is dealing with a disease of the retina that is "believed" to be caused by histo, so I've researched this topic a bit. From what I've read, some people need treatment with anti-fungals for up to two years. Particularly those with immune system issues (which I think Crohn's relates to?).
I'm very sorry you are going through all of this. I hope you find a treatment that works for you and you recover soon. Good Luck.

Thank you and yes, Crohn's is immune related. Keep us posted on your daughter and my prayers are with her.

 

[indimom]

I am so sorry to hear of your struggles. Even the Infectious Disease doctor that had me see seems to have the attitude that "its no big deal". They keep telling me everyone in our area has it. I am no convinced they know what they are doing. I have already had 2 surgeries and seem to be getting worse. They mentioned me moving to costal FL (the cold really hurts me). I can't even get the doctors to give me any time off work, how in the world did you get disability? Sorry to ask all these questions but I keep getting the "brush off" from the medical community. I was just told by my doctor there is nothing they can do to help with the shortness of breath I have. I am at my wits ends, I just feel like crying all the time. As I posted in another reply, in December is was walking around Disney with some discomfort, now I can't walk through the grocery without sitting down to catch my breath.

That just makes me angry. From your symptoms, you clearly do not have the classic case of histo which presents as a cold or flu. Most of those "everyones" who have had it didn't even know it because it was that mild.
Your situation sounds more like chronic or disseminated histo which is a big deal and should be treated that way.
Part of what they are say may be true. It is possible that any scarring/damage that has already occurred is not repairable, but if it was getting better and now it's flaring up again, it seems like they should address "why."
Don't give up. Keep searching. Sad to say, but no one else is going to advocate for you, so keep on pushing for the help you need.

Thank you and yes, Crohn's is immune related. Keep us posted on your daughter and my prayers are with her.

DD is doing well. Her situation is quite a bit different than yours. She apparently had histo during her childhood (the classic kind with no serious symptoms), but some of the sprores travelled to her eyes and moved in. One of those areas reactivated when she was 13 and her vision deteriorated almost overnight.
It appears stable for the time being. She received eye injections of a chemo drug for two years and that finally did the trick. And with the inflammation and blood gone, she actually has more vision than it originally appeared. When she started treatment, she was blind in that eye; now it's just foggy or like looking through frosted glass. The damage is not repairable, but she doing fine.

 

[disney212]

That just makes me angry. From your symptoms, you clearly do not have the classic case of histo which presents as a cold or flu. Most of those "everyones" who have had it didn't even know it because it was that mild.
Your situation sounds more like chronic or disseminated histo which is a big deal and should be treated that way.
Part of what they are say may be true. It is possible that any scarring/damage that has already occurred is not repairable, but if it was getting better and now it's flaring up again, it seems like they should address "why."
Don't give up. Keep searching. Sad to say, but no one else is going to advocate for you, so keep on pushing for the help you need.



DD is doing well. Her situation is quite a bit different than yours. She apparently had histo during her childhood (the classic kind with no serious symptoms), but some of the sprores travelled to her eyes and moved in. One of those areas reactivated when she was 13 and her vision deteriorated almost overnight.
It appears stable for the time being. She received eye injections of a chemo drug for two years and that finally did the trick. And with the inflammation and blood gone, she actually has more vision than it originally appeared. When she started treatment, she was blind in that eye; now it's just foggy or like looking through frosted glass. The damage is not repairable, but she doing fine.

I am glad your daughter appears to be doing well! I know someone at work who had histo of the eyes but she appears to be stable. She goes 2 times a year for a special eye exam but told me she had been stable for over 5 years.

My gastro did a chest scope yesterday to confirm my issues are not related to my Crohn's. She is not happy with the care I am receiving. I am still being told that I need to wait until the 8th to see the ID dr since my case isn't "urgent". The doctor did call me in Tramadol for pain but it makes the 400 lb weight on my chest feel like it weighs 800 lbs and made my face itch. I am trying to be positive but I feel like I am getting worse. Wednesday I couldn't make it from the parking lot at work to the front door without resting. I feel like a slug! I hope once I see them it will all work out.

 

[JennyDrake]

Wow! I have been told that it is very rare for younger folks to have issues with histo (I was told I was young at 44). Glad you are doing so well. I have to say KUDOS to you on the marathon. Less than 30 days ago I was walking up to 12 miles per day, now I can barely make it through the grocery store. Any tips you have would be greatly appreciated. Have you had to have surgery, do you still treat it, what type to you have? Sorry to ask so many questions but I have not met anyone under 75 with it.

I require more sleep than other people (about 10 hours) and I make sure I get it! If not, my immune system tends to fail and I get one "crud" after another. I use supplements: blue green algae, maca and MSM. I developed asthma at age 24, which may or may not be linked to histo. The supplements are aimed at asthma, but I find they help my overall health. Keep in mind that my symptoms now are due to scarring--not an acute or chronic infection as I passed that stage ~38 years ago.

 

[disney212]

I require more sleep than other people (about 10 hours) and I make sure I get it! If not, my immune system tends to fail and I get one "crud" after another. I use supplements: blue green algae, maca and MSM. I developed asthma at age 24, which may or may not be linked to histo. The supplements are aimed at asthma, but I find they help my overall health. Keep in mind that my symptoms now are due to scarring--not an acute or chronic infection as I passed that stage ~38 years ago.

I have asthma too (first attack when I was 10 days old). I kind of outgrew it unless I had the flu or something. I am hoping that the scarring isn't too bad but I think the what is left of my left lung is not in great shape. I am hoping the Infectious Disease doctor has good news for me on Friday!

 

[disney212]

Update. I did find out that the nodules they left in my lung has started growing again. I was able to get appointments (many thanks to my company health advocate) with University of Cincinnati Medical Center. Hoping I will soon be on the path to a healthier me!

 

[indimom]

Update. I did find out that the nodules they left in my lung has started growing again. I was able to get appointments (many thanks to my company health advocate) with University of Cincinnati Medical Center. Hoping I will soon be on the path to a healthier me!

Good Luck and I hope you have a better response this time.
Edited to add: have you checked online for a support group? It took me a while, but I found a facebook group devoted to the ocular version of this disease, and the folks on there have been invaluable for information, advice, and tips. Maybe there is another group devoted to histo, and they would have more advice for you? Just a thought.
Again, Good Luck. I hope you are feeling much better soon.

 

[disney212]

Good Luck and I hope you have a better response this time.
Edited to add: have you checked online for a support group? It took me a while, but I found a facebook group devoted to the ocular version of this disease, and the folks on there have been invaluable for information, advice, and tips. Maybe there is another group devoted to histo, and they would have more advice for you? Just a thought.
Again, Good Luck. I hope you are feeling much better soon.

Thanks, I never thought of a support group. I will check into that, I know that a lot of times those folks have the best information (not to mention support). That was a great idea!

 

[indimom]

Thanks, I never thought of a support group. I will check into that, I know that a lot of times those folks have the best information (not to mention support). That was a great idea!

Your welcome!

 

[disney212]

I was told by my doctor that part of my pain is caused by Adhesions. Due to the multiple surgeries I have had from my belly button to my neck "nothing is in the correct place anymore". Now they think that my lung may have connected via scar tissue to my chest cavity causing the pain. I go to pulmonologist tomorrow so wish me luck. I will post an update as I get them.

 

[indimom]

I was told by my doctor that part of my pain is caused by Adhesions. Due to the multiple surgeries I have had from my belly button to my neck "nothing is in the correct place anymore". Now they think that my lung may have connected via scar tissue to my chest cavity causing the pain. I go to pulmonologist tomorrow so wish me luck. I will post an update as I get them.

Good Luck. I hope you get some relief soon.