Even though I prepare myself mentally for realistic news, it still seems to shock my system when I see a test result come out so poor. Those numbers on a page cant possibly be me. You think you can prepare yourself for your down fall, but reality is it still stings. The last month my doctors have been keeping a very close eye on my Respiratory System. While a typical MCTD or Scleroderma patient receives a Pulmonary Function Test every six months to a year, I am currently receiving them every four weeks. My results yesterday were so poor that my Pulmonoslogist actually had me re preform the test immediately in his office after reading the documentation. I have over the last few months found myself unable to expel forceful volumes for sometime now. My last PFT four weeks ago showed that my respiratory muscles were functioning at a mere 34% while my current PFT shows them now functioning at 18%. That is quite a considerable drop in four short weeks. Due to this inability to move my muscles my Forced Expiratory Flow has also dropped significantly 85% to 55%. The Forced Vital Capacity of my lungs however is still at a high enough rate to give me adequate oxygen, I just am unable to expel anything should I come down with a cold. That puts me in a very dangerous predicament that required immediate attention; the respiratory muscles are vital to your lungs function. We briefly spoke about getting fit for a BiPap in the near feature so I do not suffocate in my sleep. The quick progression of these recent respiratory issues lead my doctor to believe I have a underlying severe Neuro-Muscular disease that we have failed to diagnoses.
I seem to have developed serve photosensitivity, accompanied by some Central Nervous System issue within the last month as well. My entire block of appointments yesterday had to be held in the dark as I now have such a serve reaction to lighting. I have had to remove lights from my home, and am even unable to shop at specific grocers due to their lighting choices. This issue is becoming extremely debilitating and leaving me almost completely home bound. Accompanied by this odd new photosensitivity I am experience cognitive difficulties, what many like to call "brain fog." It has gotten to the point where I can no longer remember words, jumble my sentences, and seem to be having quite serious issues with memory. Alongside by the brain fog comes debilitating head pain. Head pain that does not follow a pattern of migraine, tension, pressure, or cluster headaches. This pain is unlike anything I have felt, but is similar to the pain of a leaky spinal type, or meningitis; both things I wished to never again endure after my hospital stay in December. This head pain feels much like heavy lead is slowly being poured into the back of my skull, then forcefully slammed against the wall repeatedly. They have become so recurrent and intense that I have landed in the ER multiple times this month due to a lack of sleep and sheer unimaginable pain; unfortunately this headache is completely resistant to any painkiller. This leads my doctors to believe it is a malfunction of my nervous system causing the cranial pain and cognitive dysfunction. Last time I had to attend the ER they were at such a loss the doctor make the executive decision to just sedate me with Fentanyl so I could rest. Needless to say, no one should live like this.
After consulting with my doctor, and a mess of other physicians for almost a full 5 hours yesterday we decided that it is time to take more aggressive measures with my illness. Many of the medications and treatments I am currently on are the top of the line medications... thought to be "the last resort." He clearly stated that we need to look higher than that, and it may be time to move forward with more experimental treatment options. He explained to me that he will be calling a "conference" with the other physicians on my team as soon as possible to discuses where to go from here. He is hopeful that between the many brilliant minds they can create a new plan to suppress this disease before it takes anymore from my already fragile body. While I cannot disclose exactly what treatments they are considering as I do not know them yet, he did mention a few devices such as pacemakers to assist function, aggressive chemotherapy, or possibly even a Stem Call Transplant down the road. As of now I must play the waiting game as my physicians meet to talk about my future.