It has been awhile and long over do with an update from me about my ongoing health issues. I have had a bunch a Dr. appt's and have had little time to jump on here even though many have contacted me with get well wishes and wanting to know how I am doing. I truly appreciate ALL of your concerns and of course love hearing from everyone.
After 6 weeks of this right side, thoroscopy surgery, I am seeing "some", very slow, but some improvement with the awful post-op pain, as I had mentioned before......this side was much more complicated then the other side done back in Sept. I could have nerve damage, just because of the way they had to go through my ribs and that the intercostal nerves ( and muscles ) can be tricky...time will tell. It has been a very uncomfortable and frustrating recovery, to say the least. I also, more then likely, have some adhesions there now too from the surgery and chest tube that was in for 7 days !!
My final diagnosis is....sarcoidosis. I beat the odds of this NOT being lymphoma by WAY over one in a million...if you read my PET scan, you would understand. It mentioned malignancy so many times, each time I would read it, it made me sicker and sicker !! I am truly a walking miracle, for that ( and due to all the prayers from all over the world,) I will be forever thankful !!! Now, I am dealing with a disease, that the Dr.'s feel, falls into the auto-immune system category. It can be quite devasting, as the body attacks it's own organs; including, joints, eyes and all other major ones. It is like Lupus in some ways. The cause is NOT known and there is NO cure. The enlarged lymph nodes, which are too many to count, are through out my chest cavity, upper abd. area, upper shoulder area and neck. Right now, the specialist I just saw on Tues, wants to "wait and see" before even talking treatment; steroids and other funky drugs ( almost like chemo drugs), which with my already compromised body , could do more harm then good. These nodes will eventually turn into granulomas, and yes....form scar tissue. About 5/ 100,000 Caucasions a yr. develope this disease. A few concerns, that the specialist discussed are...I need an immediate opthamologist appt. as this can cause blindness, IF my eyes are effected....unfortunately, I have been having major vision problems but it could also be a variety of other issues too. Also..........I have been in the hospital twice in the last 2 months with ongoing chest pain.....not resolved as to what it could be, after a ton a tests. He has ordered a ct scan of the chest next week, to check ALL things out; mostly to see if these "little buggers" are shrinking or getting bigger and to see if they are pressing on any organs/vessels causing the chest pain. I could be looking at a cardiac cath down the road, that one is still up for discussion !!
So, besides the ongoing fatigue, having 2 major surgeries in less then 6 weeks, blood issues, fibro, GERD, ARD, post-op pain and on and on......I am doing ok. I am just adapting to yet another new disease, that very little is known about and hoping it doesn't take 2 yrs for these "nodes then granulomas" to go away, as can happen in some cases. The specialist was very knowledgable and answered our questions as best he could. He is concerned about the chest pain issues and as all the Dr.'s have said....."go to the ER if it gets too bad". When people say, they hurt from "head to toe"...lol.....I can truly say that now, about every inch of this old bod' has some type of pain !!! Alot of research is being done on sarcoidosis, which does help give me hope.
So, I have been living at Dr. offices or labs or ER's lately, plus the never ending paper work and phone calls ( after the mail comes every afternoon, my favorite time, NOT !! ) for fin. ass't with hospitals and the Dr. offices......then crashing by early evening. This too shall pass and once I DO get my energy up and running, it will be 2008. YEAAA !!!!!! That's the scoop for now and I will try to keep you all posted with updates. I am just trying to stay out of the hos. this month to break my record from the last 12 months...lol !!! Please keep Bill in your prayers too, as we surely are hoping a decent job ( after almost 2 yrs now) comes through for him ASAP. Love ya All.....I am always available by e-mail or phone if anyone needs me.....big big HUGSSSS, Ant