@ppeschke , Hi there, do you have a first name? If you have not applied for disability, I'd advise you to do it today if you have not already done so. You can do it online. Once active, they will instruct you what to do next. The sooner you do, the sooner you will get it. But, you do want to be in the system ASAP. I was approved back in 2007 and had no trouble getting it. Fortunately, the breathing test is pretty cut and dry. You either ARE bad enough to get approved or you are not. Plus, what you have is a progressive disease, meaning it has the propensity to get worse over time. My doctors encouraged me to quit the workforce as to not expose myself to other people's germs, i.e. colds and flu. My doctors said I would last longer in life if I did not add job stress to my disease. I was fortunate that I had a husband to help with financial cost of living, plus, I was lucky enough to inherit a home owned free and clear which I made into a rental for added income. You are allowed to work part time, but the pay cannot exceed your monthly benefit.

My first name is Paula. I did apply for disability a few weeks ago. I have also had arthritis & fibromyalgia for about 20 years. My pulmonologist said he feels I have about a year or so to live after all of my tests and open lung biopsy and pneumonia twice in 30 days. I am going to Mayo Clinic in MN in a month just to see what options they may have. I am single with no significant other so I do work but have really struggled to make it full days due to fatigue and some days just feeling sick.

Paula, thank you for sharing your story. You are in a tough place. You do seem to be making some good choices. I hope your trip to Mayo Clinic will result in some new ideas for you. After two rounds of pneumonia no wonder you are super fatigued! Blessings to you and may you recover some energy in the days ahead.

Hi Paula:
I am glad that you are going to Mayo
Clinic for their opinion. The one thing I love about Mayo Clinic is the many brilliant teams looking and commenting on my tests and finding new paths to better my quality of life.
Lung disease is not glamorous and is a very lonely disease. But with that said, I have found the overall support at Mayo to be healing in many ways including the relationship between my mind, body and spirit healing capabilities!
I hope you will stay connected and continue to share your journey with everyone on Connect. I’m thinking of you and will keep you in my prayers.
Also, Dr Amit Sood has some amazing insights on healing and quality of life avenues we can take on our pulmonary journey.
linda

Hello Paula
You will be in my thoughts and prayers. Prayers also that the doctors have the options that are best for you and a speedy recovery from your late pneumonia and fatigue. God Bless.

I can't say enough how much I appreciate all of your kind words and prayers. You have no idea how much it helps to know that the things I go through with this disease ire "normal". I try very hard to keep a smile on my face and know that every day is truly a gift as i know without some sort of miracle my time will be limited. I will keep you updated on my journey.

@ppeschke , Hi Paula. I am sorry that you feel so rotten. Most of us here have been in your shoes and have pulled out of it. Hopefully, you will too. May I ask why the doctor told you that you only have a year or so to live? And why was it necessary to do an open chest biopsy?

Well i was initially diagnosed with heart failure & after 2 different cardiac caths and pneumonia 2 times in 60 days I had a 2nd pulmonologist say he thought I had a long disease but that there are several different types so I'm order for them to properly treat me he felt they needed to do the open lung biopsy to really get some answers. They then sent the biopsy to Mayo for further evaluation. I aIred 3 weeks for results.

When I want back to my original pulmonologist his nurse had called the week before and given me the general diagnosis so when I want to my pulmonologist a week later I had some a lot of ready and research and I had my head around things and we discussed in detail transplant and Esbriet. He said from Sept. to Nov. my lungs were progressing quickly and with my syptoms and weight loss and breathing tests I would not have 3-5 years. I point blank asked...is it not like a year or 2. He said he felt much closer to a year.

So...that leads me to now. I go to Mayo Clinic Feb. 12 and have no idea what they will do or tell me there.

@ppeschke, Thank you for sharing that. I still do not understand why there had to do an open chest biopsy. Why couldn't they do a bronchoscopy and get the biopsy that way?

Hi Paula,
My prayers are with you as you embark to Mayo Clinic. I have chronic pneumonia for 11 years and I completely understand your fatigue. I live in Ft. Lauderdale Florida and I can’t find any docs that have experience dealing with chronic pneumonia. I will read your messages as I have hope that you will get a treatment plan that is tailored to address your specific needs. I’m an RN, CCM (on disability at this point) It’s so hard to be the patient when you know more about your illness than a dozen docs. God Bless you and good luck. Remember no MD can predict with accuracy how long you or me will live. Only God knows
TDLYNNE