Monday, June 29, 2009

Received a Couple Unwanted Calls from the Doc's

A lot has happened since I last posted. My overall health has been degenerating and I can noticeably feel it. I had my MRI repeat to check on my mass in the upper back left lobe of my brain and the good news is that the Neurologist believes it to be benign in nature and still isn't showing any signs of aggressive behavior. I enjoyed that description, but it didn't really help me other than it hasn't changed in size and I will need to continue to have follow-up MRI's periodically to keep an eye on it.

My Rheumatologist called this morning to let me know that based on the results of the Pulmonary test that I had done before and with my current symptoms that I needed to be scheduled for an Echocardiogram tomorrow at Oregon Heart & Vascular Center. I will also be having a CT scan of my upper chest since the x-rays can't show what they need to see and the Pulmonary Breathing test showed diffused functioning levels that they need to see how impaired the lung function is at this point.

As well, I saw my regular Rheumatologist last Friday and she called about all of the other things that I just mentioned and also told me that my urine tests on Friday showed blood and protein in the specimen. The concern is that my kidney's are dumping protein into my urine which is an indication of some level of kidney malfunction. To what level we don't know, I repeat that test tomorrow as well.

We believe that by Friday the three doctors (OHSU & here) will have had ample time to review all of the tests and agree on the next steps. If they follow through with what we were told on Friday, they are going to bypass Prednisone and decide on which immuno-surpressive medication to start me on. I will let you all know what it is and where everything stands. My breathing is noticeably getting worse, but if I stay with slow movements and not overexert myself the fevers have been significantly less. I really appreciated the gentleman that conducted my Pulmonary testing. He has been doing it for over 32 yrs. and he was able to detect how I was feeling by watching my actions and gave me some of the best advice I have received to date. He was like a special angel for me that day when I really needed someone to explain what my body is doing to itself and how to still have some control over it.

John and I are quite concerned because the major organs are showing some strain to them even while being on Plaquenil and that not being strong enough to keep the progression from moving forward. I will continue to be a good patient, get poked, prodded, turned fluorescent, and scanned as much as I can until we have the best plan of action to which we can work from. Patience is a weakness of mine and I am truly being tried right now. Together we can do it! I just won't be able to be around sick people anymore, but yet I have to still go to the hospital...that just doesn't make any sense to me. Oh well. I know that this could be so much worse. Good night everyone.

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