Feb 23, 2013 - 12:20 pm
I have been lurking for many months, want to introduce and ask questions. I was diagnosed with Sarcoidosis (autoimmune) in 2002 in lungs, lymph nodes, skin and suspected in heart and kidney. Sarcoidosis causes granulomas (nodules). This has complicated every single aspect of my health. When I do not feel good it is blamed on the Sarcoidosis. I was not feeling well for much of 2011. Finally the doctor decided to order a CT scan for “possible diverticulitis” in February 2012. Kidney cancer found. DaVinci Robotic partial nephrectomy April 20, 2012. Pathology: T1aNX, Fuhrman grade 2, size 4cm, Clear Cell. I am now in stage 3 Chronic kidney failure. Complications from surgery: Nerve damage to C-5, 6: I could not lift my left arm more than 2 inches (tied down for 4 ½ hours in a bad position). Took months of therapy to get mobility in arm back. Worse complication was very poor nursing staff at the hospital. They treated me extremely poorly, I think they decided I was a whiner and a wimp because I was having so much difficulty getting out of the bed (the bed with the deep well where your butt gets stuck). I was unable to use my left arm, so had to use my right arm: the side of the surgery and it was very difficult to get out of the bed. I repeatedly requested a reclining chair and was denied repeatedly. The chair by bedside was very uncomfortable, but I knew I would be able to get out of a reclining chair better than the bed with the butt well. Bad nurses, bad hospital experience. The nurses never even told the Doctor about my arm until the day 5 when I had a friend(RN) visit and she pushed me to tell the doctor when he visited. I always thought nurses charted everything, but apparently not. Boy was the doctor mad! The next complication was because I was having to pull myself out of the bed with my right arm only: hernia at the port site. My colon was playing peek-a-boo with the world. That surgery was in August. More pain.
CT scans have shown a “nodule” on left adrenal gland, multiple cysts on both kidneys, a 4mm and a 9mm “nodule” in lungs, nodules on thyroid, small bowel lipoma. Multiple lymph nodes are large. I had the thyroid diagnosed with fine needle aspiration: benign but big. One lung with bigger lymph nodes had bronchoscopy with biopsy and it was sarcoid.
My last CT scan was in October, my lymph nodes had all enlarged dramatically in lungs, around kidney, liver and multiple locations and the urologist said it looked like lymphoma. After walking around a week in shock I started seeing the pulmonologist and he did the bronchoscopy with biopsy. Diagnosis: Sarcoid, at least on the node he sampled. I feel like a walking time bomb.
I have so many questions. But will offer only a few today. I tried again this last week to see where my pain levels are without meds. I made 3 days without the oxycodone but am just too sore and achey. My right side and right flank side still hurt. I am unable to wait longer than 5-6 hours to pee due to the pain. I rarely sleep more than 5 or 6 hours because I have to get up to use the bathroom and rarely go back to sleep. How long???
Next question: should I find an oncologist to add to my “ologist” list of providers (urologist, pulmonologist, nephrologist, neurologist)? I have not been offered an oncologist by my pcp or any of the other docs. T1aNX Fuhrman 2 is considered ok? My GFR has been as low as 38, but currently is 47(will have lab results from newest blood draw next week). I cannot find a RCC specialist near me: Eugene Oregon. Do I need another doc? I am so tired of doctors. I am scheduled for a CT scan on Thursday next week. The original order was for abdomen and pelvis only. I had to work hard to get the chest added in as I am not comfortable going 7 months without a CT on the nodes and nodules being watched. (had an x-ray in January) Had to go over one doc's head to another’s to get it added in. I still have not had a PET scan or MRI. Is it routine to check for problems or do they only check when obvious problems are found?
I am working hard at being my own advocate, but seem to be swimming against the tide. I know that others around me are ready for this chapter of my life to be ‘quiet’. I am trying to be quiet about my needs or fears, but feel I am losing the battle. I do not plan on going down because I was not vigilante. Comments? Sandy