I’ve sat down to write this blog at least five separate times and don’t really know what to write or how to get it all down. I guess I’m having a bit of block right now, so this won’t be put together well, I apologize in advance.
!). While I was in the emergency room two weeks ago, I had a chest CT and chest x-ray done… Both exams showed some changes from my previous scans done in October. The ER doctor originally explained that I had a pretty severe case of pleurisy, but once the final report was faxed to my dad’s office, it revealed something completely different. Sometime during the last ten months I have come down with Interstitial Lung Disease. Both scans done on 8/7 show that the interstitium is very prominent, either from my recent bout with bronchitis, my lack of NK cells, or a nice combination of both. I have an appointment with an ILD pulmonary specialist at the end of September and will have a lung function test here quite soon.
My body has not been able to fight off this virus I’ve had for over a month, and last night I felt like I was suffocating. I couldn’t stop coughing and then in return couldn’t catch my breath. My mom took me to our office for a nebulizer treatment, which didn’t help much since my O2 is fine (96-97), but I have decreased breath sounds in both lungs. This morning isn’t much better, I’m still hacking and don’t feel great, so my couch is where you can find me.
2). I was seen by my new Neurologist on Wednesday and he was great. Dr. M thoroughly reviewed my complex medical history and then went over all of my brain scans from four years ago. He was perplexed by my ability to maintain a pretty “normal” lifestyle with all of the medical issues I have and the extreme neurological symptoms I deal with. He explained that I did not need surgery at the moment, but that doesn’t mean I won’t need it in the future, as he was basing everything off of scans from 2013. He ordered new scans, starting from my chest to my head, just to insure my arteries and vessels are doing their jobs since the arteries in my brain are a little backwards and absent. Dr. M is also changing my medication, attempting to prophylactically treat my migraines and chronic body pain. I have been referred to the headache clinic at UCSF for my chronic migraines and have an appointment later this year, but Dr. M will continue to follow my case.
It went as well as we could’ve hoped for and I’ve been extremely satisfied with every doctor at UCSF so far. I currently have two outstanding referrals with two different specialists and have a feeling that is just the start of all of my appointments at UCSF and will be heading back up to San Francisco later this week for my MRA/MRI and we’re hoping to complete my lung function test that day too.
3). The last couple of days have been very trying, emotionally. I have felt really defeated by this lack of feeling great and not being able to really breathe. I’ve found myself crying at times I shouldn’t and wish I could just stop these feelings. This isn’t me having a pity party or feeling sorry for myself, this is me realizing I have actual limitations that I have to follow because I end up doing harm when I don’t listen to my body. I’m on prednisone for the foreseeable future and that makes me feel even worse.