fatigued

@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?

Well, here I am againwent off the wagon, ate 4 jolly rancher candies, nnext morning I thought I would pass out, lot of fatigue , deos this tell anybody any thing? Diabetes, maybe>

@boredsilly Yes, it does tell us something. In spite of the taste, Jolly Ranchers can be a downer, even without diabetes. Get your A1c checked, and you will know what to do next. Probably, lay off the JRs.

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

Paula
I would think that you would be able to get disability. Another connect member made a good suggestion, your docs must be included and involved after all they sign the paperwork and write a brief letter on your behalf explaining why you need disability. I was able to get disability with my sisters help, I never hired a attorney but if you are denied hire a disability attorney. Best of luck to you.

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.

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.

I know very well how difficult it can be when we have difficulty breathing. Have you looked at Dr Amit Sood’s TED Talk about the body mind connection? Or any of his online free paced breathing apps?

After my lung cancer surgery my husband
stood by my bedside and said, “breathe””breathe”for 5 hours.

After returning home I was sent a Paced Breathing dvd & work book. It taught me how to breathe. It relieved my anexity and helped me relax my nervous system as it connected my body, mind and spirit.

Stress Free Living is a book that also helped bring me back from the Brink of my life and to this the lessons remind me to
slow down and reconnect my Mind Body & Spirit. I have better control of my breathing. I now clearly understand the value of taking time out in a constructive and helpful way.

All my best, I’m sending you a big cyber hug.
linda