Hello to all,
I know I have been reclusive and maybe even rude for the past couple months. I just woke up one day realizing how overwhelmed I was with all that has happened to my family and to my LCHelp family.
I lost so many friends here and see so many struggle. I am a person who feels deeply and also feels so powerless to change what is happening. I just became mute, so to speak--for those of you who know me, I know that is hard to believe, lol.
I finally sought professional help because the meds weren't doing the trick. I still feel like I am carrying a heavy load, but I am doing better--some days, anyway.
I updated my profile twice and lost it both times. I couldn't bring myself to rewrite it because it was like reliving it.
Basically my status is that I had a broncoscopy in Feb., and they removed a mucoepidermoid tumor from my right bronchus. There were other suspicious areas which turned out to be squamous dysplasia (unless of couse they were wrong again!.) Due to heavy bleeding they did stop, and the pulmo did admit he didn't get as good a look as he would have liked.
These tumors are often mis Dxed as they did with mine--saying I had a highly agressive adenosquamous tumor. The one I had is "somewhat aggressive" though he "thinks he got it all."
That is the good news. The bad news is that I have went through so much turmoil with bad doctoring again. Really bad. I finally had to go to a new pulmo (my third and the most obnoxious, I must say)
The only thing good about him is that since he didnt have my records, I asked him what he would do if such and such..... and he told me the right answers (IMO) which were totally NOT what the other pulmo was doing.
My main concern is that I still have enlarged lymph nodes which no one has explored. I still have the HPOA; it hasn't let up one bit. So how can I be NED?
The final blow was when I received my pulmo's notes from a recent visit, which said..."Patient refuses to believe that her parathesias (nerve pain etc) are the result of chemo and continues to believe that she is suffering from HPOA."
I have had no chemo, which I have told him at least three times! That was the most glaring of many, many errors in his reports. He says I am on meds he never prescribed, that I have sisters etc etc.
My new PCP is my daughter's age, which is kind of strange. She is ok. But she is on maternity leave until July. Their office is a mess and my records were "lost" for a month--and not until I stood in the reception area saying I would not leave until they were found-- they did find them--filed under KR instead of KA--how hard had they looked before! By this time, however, my PCP had had her baby, a few weeks early, so no one to my knowledge has looked them over.
I had the breast cancer scare last month. Had to go back for tons more views and a ultrasound. And get this!!! The radiologist came out within minutes of my getting dressed to personally give me the results of the new views--a cyst! This was at a scanning center. I am going there in about 10 days for a CT and I wonder if I will have this personal attention for my lungs!! Anyone want to bet?
The ruematologist they sent me to was so uplifting--he told me that "even a few cancer cells in one's body can wreck havoc with it" when I asked why I still had the HPOA. However, when I got his written report it said that my HPOA was probably being caused by my emphysema. How do they get away with this kind of stuff? At least he didn't blame the phantom chemo.
I do have emphysema, but I blow a 91% FEV1 but for some reason my DLCO is only between 33% or 59% of predicted depending on which of the PFTs one wishes to believe. I don't see how two PFTs, done 5 months apart, could be so different.
All the numbers were different, outside the realm of statistical probability, so I have no clue what shape my lungs are in. With the tumor gone I can see why my FEV1 rose from 79% to 91%--but none of the other "improvements" have much logic to them.
I am able to do more; it took me some time to realize that I could, but I can!!!
I am thankful to be alive and able to fight the good fight. I wish I didn't have to "fight" the medical establishment because it is tiring.
My new smart *ss pulmo said, when he realized he was my third pulmo, "Are you expecting me to practice defensive medicine?"
I replied, "If you think it's rough practicing defensive medicine, try practicing defensive
patienting."
I went on to say that "had he known me BEFORE Jan 04, he would have known that whenever I went to the Dr. I was the one trying to get out of the exam room as quickly as possible--now I feel like I have to post guards at the door so they don't weasel out without addressing MY concerns."
He was expecting to spend 5 minutes with me, and I ended up with about 12--isn't that ridiculous? Having to just about headlock a specialist into 12 minutes???? He basically threw me a script for whatever tests I wanted.
Husband still without work. I went to voc rehab and they are going to try to help me change careers or at least get a job. I want to work. And I need the money and the benefits.
I am off to Vegas for a week. Neice is getting married.
I love you all.
Sorry this was long and boring, but I guess no one HAS to read it.
Also, I lost one of my cats last summer to feline leukemia and now "my boy" has Felline Aids. He is such a fighter and I love him so, so much. (unfortunately, fighting is how he got the disease). The two of us, my Iago and I, have been on so many journeys together. It is sad to see him weaken, but he has kept his spirit.
elaine
Here is a link that explains my LC--I don't know if anyone else on the board has this kind or not.
Let me know if you do.
http://www.vh.org/adult/provider/radiol ... rmoid.html
