Bad Bad News From Pulmonologist

I am so very sorry to hear this.  It just sucks!!!  As if our cancer isn't enough?!

A second opinion is always a good idea when you are facing bad news.  I have always felt that the more brains you can pick, the better.  Sending cyber hugs and prayers for a solution.

These news suck, but I am sure you didn't exactly hand pick them did you?

You are doing all you can snow shoeing and all, I can see that. And I know

you know that you have a lot amazing people rooting for you. So don't be

afraid to reach out and if you feel the need, let it ALL hand out. We will

always be here, listening and caring. No one ever strays too far from this

site. So look at all the sisters that post and know that your fan base is

about twice as much, don't forget the lurkers, like me (:

Enjoy the snow and as an amateur snow shoer, I take any pointers you got.

I missed you,

Ayse

cinnamonsmile said:

Carol, the weather doesn't

Carol, the weather doesn't really have anything to do with it. My lungs are making what are essentially masses of inflammed lung tissue that makes the lungs useless. It is called hypersensitiviuty pneumonitis. Basically, something is creating an extreme allergic response in my lungs which destroys the lung's ability to use oxygen. I noticed the cough coming back last October when I stopped the first bout of long term Prednisone. Nothing was showing up on the CT Scan in October.

It is not just a cough from a cold or pneumonia. There are masses growing on my lungs that cause the cough, the hoarse voice, running out of breath. I sure wish it would be weather related...I grew a plum sized mass between Feb. 2013 and July 31st 2013 (the mass wasn't showing on an x-ray in Feb. 2013).

Last year I spent 9-10 months with these symptoms until the thoractomy when they removed the lung mass. I sure wish someone would have referred me to a pulmonologist a lot sooner last year, but hindsight is 2020,right?

Moving is out of the question for me. I have other serious health poblems (like leukairioses on the brain which is casuing me to have early onset dementia and cognitive issues) that would prevent me from living alone. Also, if I moved down south or outwest, who knows what else I would be allergic to in that area?

Thank you for the tips, Carol. I appreciate the extra brain power! 

If it makes you feel better, I live in the South and I find the summers are now just brutal for me.  I don't think it was a complete coincidence that I had my heart attack in July.  Also, I just recovered from a nasty pneumonia in November-lots of bacteria here too. 

And here is what happened when I went to the desert, usually a healthy area for lungs, right?  When I went to Palm Springs in California some years back, I returned with the worst pneumonia of my life, coccidioidomycosis (Valley Fever).  The pulmonologist I saw here in Louisiana was at first baffled because he said my lungs looked like I had coccidioidomycosis (Xray shows white puff balls in your lungs-weird looking), but you could only get that if you lived in desert areas.  I had been back just a few days from Palm Springs and my sisters and I had driven through a terrible dust storm leaving the desert.  Valley Fever is a fungus found in the soil of desert areas.  It doesn't usually cause problems in those with normal immune systems and, probably, most in the West have been exposed.  But take a swamp gal and throw her in the desert for a week and her lungs get in big trouble.

My right lung is abnormally small and scarred up from both cancer and the Valley Fever.  My left lung is scarred now from recent treatments and pneumonia.   I try and walk every day and do what I can to improve circulation to the area, but I have been told by 3 pulmonologists that my lungs will never be normal and I try and avoid sick folks like the plague.  And use hand sanitizer constantly.  But I do not have the stamina that I did before my lungs were involved.

Cancer sucks!

Double Whammy said:

So sorry to read this

There are diseases that are every bit as devastating as cancer and we tend to lose sight of that sometimes.   I'm so sorry to learn about something new to me and wish it wasn't happening to you.  I hope there is something other than thoracotomy available to relieve your symptoms.  Will keep you in my thoughts and prayers.

Suzanne

Cinnamone

i am very sorry. I am glad your doctor is sending you to Mayo Clinic. I believe they will provide additional ideas to manage and treat your conditions. Lets look for physical therapy options to improve your lungs function.

Sending positive thoughts your way

Gosh Cinnamonsmile,

I am so sorry for what you are dealing with your lungs.  I to think going to Mayo Clinic may be very helpful for a second opinion. Chemo is used for many other condition.  I used Methotrexate (which was one of my drugs) when I had chemo back at diagnose for uveitis. 

Wish that I could offer something for you but this is really a baffling condition that you have.  I hope the 2nd opinion doctors give you something and some hope.

Best to you,

Doris

cinnamonsmile said:

Biopsy Done in July

CC:

On July 31,2013, I had a thoracotomy and they removed a plum sized mass of HSP from my lungs and biopsied it. It  came back as HSP. 

At my last appt. with my pulmonologist, he said that recently he went more in depth into the path report after the CT Scan showed more growth growing and I had some pneumonia in it as well (I wish he would have done that before but he says he doesn't do that for all patients...just people like me that have more severe, advanced cases of some type of crap). in addition to Prednisone until May,  he also put me on Bactrim for a couple months three days a week in case the pneumonia is still there and responds to antibiotics. He basically told me that he is going to try everything he can on me and if Mayo finds more txs for me, he will follow their advice.

Basically this reminds of my journey with the pain clinic. My first pain dr. told me that finding the right medications and pain txs are basically trial and error until we find what works. I think it is the same for cancer txs, too, right? Finding the right dose of rads, chemo and whatever else.

The allergist ran a hypersensitivity pneumonitis test on me, and I didn't show up positive for the most common causes. They just can't test for EVERYTHING in the environment. So far now, it remains a mystery.

Unless the Mayo Clinic has more indepth testing, at this point, it could be ANYTHING in my enviornment. Pulmonologist says we may never know, I just have to do more cleaning, more dusting etc etc, is difficult due tpo my thoractomy pain and nerve damage pain from that, combined with my normal nerve damage pain from the BMX w/SNB & ALND.

I am also hoping that Mayo can maybe put me on some allergy medications (my allergist doesn't have me on anything but Advair diskus and a steroidal nasal spray). To be honest, I don't think he has enough ideas on how to treat me. He really isn't doing me any good, so I will look forward to see what Mayo thinks.

I am not giving up by anymeans. I really didn't "freak out" and get all upset last summer when I was told I had to have a thoractomy and then the HSP diagnoses. I'm still not too terribly worried. I am just rollling with the punches and see what happens. There is nothing I can do about all this crap but see doctors, take meds, get tested, blah, blah blah.

What I can do, is control my thoughts about it and enjoy my little life here.

There is an old story about whirling diverishes a wise woman gave me a pamphlet about years ago. I use those thoughts a lot....let the diverishes whirl around me, but don't let get inside. i wish I still had the pamphlet so I could explain better but its been lost over the  years and I no longer know where the wise woman is.

Thank you so much for everyone's support on this.

My cancer,itself, was "only DCIS", but this hypersensitivity pneumonitis is like Stage 4 is it not? No cure, but can go into remission or work at slowing the progression!! 

We all just keep keeping on, doing what we can with what we have and have a little fun with life along the way!!!

I think I found your pamphlet and I think it is called, "Acceptance."   I had to google around until I found this - you know how I am...lol.  Anyway, I hope it is because it is absolutely so beautiful and relevant.  It is especially relevant for anyone with uncontrollable issues in their lives.  Link: http://tkdjunkiesober.blogspot.com/2006/04/acceptance-by-vincent-p-collins.html

And here is a piece of that pamphlet:

"And the awful menacing future, that unending nightmare of shadowy days and years! Can't even bear to think about it. Well, quit even thinking about it at all. You live only a split second at a time; that's right this minute. You can think of only one thing at a time, do only one thing at a time; you actually live only one breath at a time. So stop living in a tomorrow that may never come, and start living one day at a time -- today. Plan for tomorrow, but live only till bedtime tonight.

In short, that big bogey-man, life, can be cut down to his real size. Life is only this place, this time, and these people right here and now. This you can handle -- at least today.

"But my life is just one problem after another!" Of course it is -- that's life. 

I don't know how it is with you, but it took me a long time to realize that at least some of these problems were of my own making. For instance, I thought that it was my duty to try to solve other people's problems, arbitrate their disputes, and show them how to live their lives. I was hurt when they rejected my advice. I finally learned that you cannot help people unless they really need help, are willing to be helped, want you to help them, and ask you to help them. Even then, you can only help them to help themselves.

        An old Arab, whose tent was pitched next to a company of whirling dervishes was asked, "Don't they bother you?"

        "NO!"

        "What do you do about them?"


        "I just let 'm whirl!"  From "Acceptance", by Vincent P. Collins

Thank you so much for sharing this.  I can't tell you how I needed this reminder today.