Thank you for your words of wisdom and kindness. You are exactly right. Only the good Lord knows when it’s our time.
I have trouble daily getting out of breath just talking or sitting or laying down. I will keep you updated on my experience at Mayo.
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Thank you so much for your words of experience and your advice. I truly do appreciate you sharing your experiences. At this point I am completely open to advice and suggestions. I have applied for disability and at this point ss had set up a phone call for and they are asking for W-2’s and income verification. I was taking that as a good aign? However, with the government shutdown that will be on hold.
I’m applying I didn’t have to go to my dr’s but rather give all the names and addresses of all of my dr’s and facilities. I’m told from others that they then get my records.
I guess we’ll see where this goea. I will post my disability claim status as it changes.
Thank you and I wish you peace. Blessings.
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.
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.
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.
Ann you are not alone. I was diagnosed the week of Christmas & I’ve been on an emotional roller coaster. I fight arthritis & joint pain & terrible fatigue and get short of great just sitting or laying down or talking. I have an appointment at Mayo Clinic in a month and I’m hoping there’s something they can do for me.
Keep your chin up
I have been diagnosed with interstitial lung disease & unspecified interstitial pneumonitis possibly caused by arthritis is 20 years of bad fibromyalgia.
I guess what I’m asking is that in the last 4 minths my health has really declined and my life changing. I wonder are there stages to these diseases?