Last I left off many of you were wondering where my future was to be directed. After receiving less than pleasing test results, and a grouping of debilitating new symptoms, my team had scheduled to meet and converse about the next step in my treatment. Drastic measures were now to be taken as vital organs have began to be heavily effected by my disease. I received the call early Tuesday morning from my Pulmonologist, unfortunately, things did not go as planned. While many members of my team from the University met and discussed new treatment options, a key player decided not to attend; my Neurologist.... Apparently to busy to even respond to the request to meet. My Pulm told me that the meeting did not result in any solid new plans because so many pieces of the puzzle were still missing, that it would take at least another week to consult with the rest of my physicians. In the mean time I was to again play the waiting game and return for yet another PFT in four weeks time. Of course at hearing this news I shared my distaste for that plan. I have too long sat and watched my body slowly die; I was not about to do it again for four more weeks. He expressed his sincere apology, and acknowledged that the situation was not ideal but, in the meantime he has scheduled me an appointment with my Rheumatologist for Thursday afternoon, is working on moving up my next Rituxan Infusion, and hopefully get in contact with my Neurologist. At this point I just sighed, agreed, and hung up. There is really nothing I could physically due to change the situation as I am not the one with the PhD and prescription pad.
That afternoon I had an appointment with my primary care doctor as she wanted to see me after all the testing at UW and the recent ER visits I have accumulated. She was very displeased with my lack of progressed and wanted to preform her own tests. She was very worried about my exhausted and heavy breathing. Upon a 6 minute walk tests in her office building my oxygen saturation dipped dangerously low, plateauing at an 86. Any reading 90 or below on a Pulse Oximeter requires the patient to be given supplemental oxygen. While we could not verify this reading was 100 percent accurate due to my serve Raynauds, she was not willing to take that chance due to my obvious respiratory distress at the time of the reading. So now upon sleeping, or any physical activity I will be hooked to a portable oxygen tank; Yet another apparatus to tote around.
Skip forward to Wednesday morning and I receive a call from none other than my ghost of a Neurologist. The call was frank, and down right offensive. After not bothering to respond to the meeting request from my other physicians, but apparently sending an email to my Pulmonologist expressing that I have been 'making up' my illnesses (including my near death GBS episode in December), she decided to share her thoughts on my 'mental status'. She started by announcing that my PFT results were fine and nothing is wrong with my lungs, or diaphragm. She also told me that I really "don't have that much going on" and I was probably just stresses because I am not getting enough sleep. She said that there is no way I have an underlying neuromuscular disease because my test results are fine and I probably just need an "anti-phycotic" to de-stress and relax. Her last punch was to let me know that the Headache Clinic she refereed me to over two weeks ago was actually not accepting new patients so I just needed to "work through it." Once I gained control of the rage that was building inside me at her completely inappropriate comments that not only demean my mental stability, but those of my other physicians, I conveyed my strong disagreement to her "thoughts." How incredibly degrading, and hurtful this woman had treated me, not to mention deliberately attempting to discredit my mental capacity by expressing my disease and serious illness are all in my head when test results obviously show otherwise. Needless to say I will never see, nor speak to that horrid woman again. I am appalled by this physician. I quickly called my Pulmonologist to disclose to him what had happened, thankfully, he was just as appalled as I was. He said he even sent her an emailing expressing that yes, I was in-fact seriously ill, and yes I do have poor test results indicating the failure of my diaphragmatic muscles, and that frankly, she must have not even looked them over if this was her beliefe. He advised me to search for a new Neurologist to which I happily obliged. While I wait to locate a new Neuro, and hopefully a new headache clinic, we have ordered a brain MRI to check for a suspected central nervous system malfunction, amoung a few other things.
So it seems I will leave you all in the same place I left off my last health update, smack dab in the middle of another waiting game; my future hanging in the balance. At least now I have a small task to occupy my time, oxygen to assist my breathing when needed, and my prescription finally filled for Cymbalta to relieve my growing Fibromyalgia pain. Hopefully things will begin to look up with the absence of stone cold, inhuman physicians who are unable to cope with the reality of a situation on my team.