I feel I have always advocated for myself being a former RN but i got more insults about my profession "you know enough to be dangerous" that was from a shrink, You can only be belittled for so many times when you just say "screw it" for some reason Thye do not believe what I am complaining about when it is visible and expressed like green discharge from my R. nipple that the discharge would stick to my bra after a 12 hour shift and itch like crazy " Don't bother me unless it is bloody? and that is the same side I had the visible hard non painful axillary enlarged lymph node which I was sent to a "TRAUMA SURGEON" in maine of course and dissection off al nodes "fell apart" so none sent to pathology, i also had cording in axilla, then the totally detached ball socket of my R. shoulder ignored I said something is wrong I feel like the ball is detached, and Dr Manseauu in Ocala who interned in Maine said " you do not have to tell me anything about the neglect of care in that state. I was kept overnite due to complications from not being treated a lot sooner as he said to my husband she must of been in a lot of pain cause the shoulder was totally detached and the trauma to other areas was extensive. I had a Catecholamine attack and the 4 dissolvable rods that were place in 2012 are still present along with severe cartilage loss and raggedy bicep but he refuses to operate on me again and sent me to UF Shands to see a top Ortho who said I need the surgical reports before I can tell you whether i can do exploratory surgery and maybe fix that bicep, 3 weeks later I got a call and it was quick " sorry no he will not operate on you" and click goes the phone. then I got the surgical report and was confused at the maybe 15 time outs during the surgery and nothing to say why as usually they do time out to make sure it is right area operated on and then count sponges etc,, but i thought that was excessive. I just hope Mayo will help as they are my last hope as i am having a lot of bloody urine with cloudy foam sludge and odor so bad ? from high urine protein 450 but really higher cause lab test the total volume at 2500cc when actual act was 1400? my lower back is painful and episodes incontince and falling again. . Everything is just getting worse and the oncologist does not seem to be concerned as I guess no protein in blood? well these symptoms are not pleasant and i am bedridden due to the pain of r.shoulder rib cage , middle back and lower back , 60 years old and I told my husband why is god keeping me here haven't I been thru enough and i have always been the most giving person , I do not understand , I saw Dr Mery Lossata Hospice and Palliative care and hope Mayo will put in Palliative care as I can barely sit up to visit my adult children 15 min and i am back in my bed.

Hi @canderson12
Good for you for advocating for your care. It is important. You've posted your message in a discussion about advocating for research for mycobacterium avium complex (MAC), nontuberculous mycobacteria (NTM) and bronchiectasis lung infections. I'd like to invite you to join a couple discussions about advocacy in palliative care. For example, click these links:

- Palliative Care and Hospice Care https://connect.mayoclinic.org/discussion/palliative-care-and-hospice-care/
- Video Q&A about Palliative Care https://connect.mayoclinic.org/webinar/discussion-on-palliative-care
In the video, Dr. Maisha Robinson talks about palliative care at Mayo Clinic. She established a neuropalliative care program at Mayo Clinic in Jacksonville, FL, where she serves as the Medical Director of Palliative Medicine.

I look forward to seeing you in these discussions.
Colleen

PS: To unsubscribe from the "MAC & Bronchiectasis" group, simply click "unsubscirbe" at the bottom of the email notification.