Tom
12-06-2011, 03:32 PM
Hello all, I have checked in on the site nearly daily since March. A little history about me to start because I almost feel my Wegeners is relevant to my medical history in some way or another. In 2000 I broke my back and went on a diability from a railroad career of 27 years. I expanded my woodworking shop and lived my hobby, I swear Ive got a wooden heart. Things were clicking right along and I learned to relax and enjoy retirement, that was until May of 2006 when I finally gave into several months of digestive discomfort. It turned out I had colon cancer which attached itsself to the bladder. The colon cancer was stage 4 and I understood that they didnt radiate stage 4 colon cancer because of the location of it but becuase the bladder was involved they radiated it and got the colon in the process, other wise they didnt hold out much hope for me. I was given stage 4 chemo and radiation for six months preceeded by a radical surgery as the surgeons put it to get the cancer. During my treatments I had complaints that were justified by the fact that my surgery was so radical that they expected me to have problems and treating them was a challange as each had to be dealt with one at a time. Over time I made the complaints and moved on. Now comes May 2006 and I have symptoms of cancer but blood test show I have diabeties, rampid in my family, as a matter of fact my oldest sister died 2 months later due to complications. I adjusted and learned a new way to live and things began to get back to what I had to determine was a normal, different from everyone elses with the back ,the cancer and now the diabeties. Fast forward to January 2008 I get a bad cold that I cant shake so I take an over the counter antihistamine and it stopped me up but good, I fought that until early spring when I went to my family Dr and was treated for sinuisitus. Didnt help any but I didnt follow up until the summer when I was once again treated for sinus infection. Keep in mind I had lost a sense of what was normal for most people because of my medical history. Again, I didnt follow up until Dec of 2009 for crying out loud. I was sent to an ENT who determined I was 100% plugged up and surgery was in order, so Dec 2009 I had sinus surgery and one night in the hospital. All things considered I felt pretty good, but again ,what is normal? I still couldnt smell or taste anything. Two weeks later (Jan 2010) I had a basil cell removed from my left cheek. Face of course! Things went back to what I wanted to just call normal and live my life but it was not to be. In April of 2010 I was having severe swelling and pain of the ankles. I was tested for RA and my RA factor was a little high and she sent me to a reumatoligist. The swelling had subsided but was hesitant to treat for RA becaue he wanted to see actual symptoms with my cancer history and he explained that the treatment could be fatal to me due to my medical history. He gave me an open appointment. I held that open appt through out the rest of the year. In Nov or Dec. and some time before that I was experiencing breathing problems, as in walk 50 ft and couldnt catch my breath. I had fits of coughing where I coughed up blood. I was then referred to a Pulmo Doc and she tested and determined I have severe COPD, empysema. She was concerned about the blood so one week later she scoped me and found a growth in the air way of my right lung. She tried to do a needle biospsy but it kept moving and oozing and she found it was attached to a blood vessel and opted to call a surgeon who said atleast one and may two lobes will have to be removed so about a week later Im in the hospital and he removes 2 lobes of the right lung. I got into pulmonary rehab which was met with several obsticles like my lung surgery and then the bombshell, I got pneumonia in late March and 2011 fought it til early April when at the urging of my wife went into the ER and my legs were covered with a godugly rash that I would not even look at. The first ER Dr didnt know what to make of it so he went and got another and he came in and told me that in laymans terms I had vasculitus, I had no idea what peril I was in or even what it was, just treat and send me home. I spent 7 days in the hospital and they bioped one of the rash marks on my right cheek but this time it was the butt cheek. The reumy I said I had on an open appt was used and he was sure just from blood test it was wegeners but he had to wait for results of other test from the nephro, after she biopsied my kidneys nearly a month went by when the results were in and I had Wegeners they began treatment. The kidneys are involved. The reumy got me into his office and said see! if I had treated you earlier for RA I could have killed you, but now we have another problem and he explained, We cant not treat becuase you will die! He continued ,"If I do treat ,Im afraid I will kill you with your history. All the Drs involved conferred and they got recommendation from other facilities and began treatment with a 24 hr Cytoxan infusion and then 200mg wheich I just got off of in hope the cellcept will work. I have been on 60 mg of predisone for most of the time since March and everytime they try to taper me off of the pred, I get short of breath and ankles swell so they up the dose, I tried a month or so ago to go to 30 mg but things went south and my Reumy doesnt like the direction things are going and the pulmo put me back upto 60 mg and I am down to 40 mg on the taper dose but I have water retention and SOB again and take lasix for the water retention but it is not helping as of yet and its been a week since I went back on it. For the last 6 weeks I have been on oxygen 24/7 as opposed to just night time O2 and have been using a CPAP for a month now. I go back to the Reumy and the nephro on Weds, the 7th. I have received apologies from all my Drs for not finding this condition sooner but I realize that it is a hard disease to find and its ok. Im ok, I will be ok going forward. When I began this post, I said I felt it was all relevant to the Wegeners and I cant help but wonder if maybe the cancer has gotten its due through the wegeners! I am an upbeat person with a never quit and wont be whipped attitude. So this is me and I look forward to reading and participating in the fourm if I can contribute where possible but I have alot to learn and thats why Im here, to learn!