With everything going on including being a new aunt to my sweet little niece, I have lost track of time since my last update!
The last time I updated was over a month ago, towards the beginning of November. To be honest, I can't remember everything that's happened so I'll try my best. On November 20th, I had my Care Conference. This was a meeting that was scheduled to have my Immunologist, Pulmonologist, PCP (Primary Care Physician), Psychologist, Psychiatrist, Rheumatologist, and Endocrinologist on the same page as far as medications and current/future treatment plans. My Neurologist, G.I (Gastro-Intestinal), and Dermatologist are at different hospitals and weren't included in this. Overall the meeting went as expected. We discussed different types of treatments, prognosis, quality of life, what I want, what I don't want, etc... I settled on minor changes, one at a time. My one overall goal, a while from now, is hope to start weaning down and possibly off on a lot of my medications. We are all in agreement that there's a lot and quite possibly could be causing some symptoms I'm having. However this could be a several year process because it's not realistic to start taking away any medications yet, more as it is something that will happen if/when my health ever gets under control enough. As a result of this "conference" I am starting on an immunosuppressant medication, commonly used in post-transplant patients. It's not FDA approved for the conditions I have but, truthfully, there are no medications left that I have not tried, approved for the illnesses I do have.
When I have told some people that I'm taking this medication, they're often confused wondering how this medication can help Asthma? So I will try to explain it best I can. I like to think of Asthma as a result of my other illnesses. Asthma is a huge issue for me, but it's caused and triggered by my other illnesses. My second lung disease is a hypersensitivity of my immune system to a fungus that grows outside in soil, grass, air, etc.... my immune system "attacks" my body when I come into contact with "too much" of this fungus. However, this same exact fungus is growing inside of my lungs, so my body is in constant contact with something it treats as an allergen. Coming into contact with something I'm allergic to, triggers my Asthma and more likely than not, sets off an attack. This happens very spontaneously. For example, one day I was feeling great and less than 3 minutes, 911 was called and a trip to the ICU was required. So, not quite your typical Asthma. Also, in your immune system you have different immunoglobulins (IgM, IgG, IgA, & IgE). As far as IgE, the normal range is roughly under 250. My IgE levels are 16,800. A result of this extremely high level basically has the same effect. The hope is that this medication will calm my body down, and basically tell it to stop fighting and attacking against itself all the time. It will take some time before I notice a difference and can't expect anything right away. I have to be closely monitored with kidney function tests, liver function tests, eye exams, labs, CT scans, and other minor testings & a list of everything and anything new that happens after starting the med. But we're starting this because we're hopeful the benefit it could give me outweighs the risks and side effects!
A few weeks ago I met with my Rheumatologist due to increased symptoms and pain. He ordered some more CT scans (he prefers MRIs but since receiving my gastric pacemaker in February, I'm no longer allowed to have MRIs) to see if there were any more changes from my scans several months ago to now. Hopefully the scans look good and there are not any more complications than last time! I meet with him again later this week to discuss the results of the scans and to see if he has any further ideas or suggestions to help.
Also, I have a Neurologist who I seem to really enjoy who works at Cincinnati Children's Hospital. I have been having increased symptoms in that aspect as well and was offered to see a Nurse Practitioner who just recently joined his team and see if she had any thoughts. So we made the trip down to see her and long story short, it was unsuccessful. I was really unhappy with what she had to say and didn't agree with any of the suggestions she had. So fortunately, I am able to see my Neurologist (the one I'd been seeing prior) later this week also!
Since March, I've been undergoing testing for suspected Mitochondrial Disease (Mito). The disease and testing has been brought up before but thankfully we've finally got the ball rolling with that. Unfortunately, there is no cure for this disease (go figure!) but a cocktail of medications to help. Which fortunately seem to help a little bit. If you would like, you can read more and find out more about what Mito is here!
Also, for approximately 7 weeks, I have gone without my immune therapy injections I have been receiving for 2 1/2 years. There was a huge mix-up with my Immunologist's office, my insurance company, and the pharmacy thro ugh my insurance which ships out my medication. This is a medication I mu st receive every 2 weeks. I will be starting it back up right before Christmas again, I'm hoping it doesn't cause any issues after being off for some time, and that it didn't cause trouble with my levels to rise again and cause other issues as well.
I know there's more but I can't remember exactly what. I'll try to update more so that my posts aren't so long when I do!
"I used to pray that God would feed the hungry, or do this or do that, but now I pray that he will guide me to do whatever I'm supposed to do, what I can do. I used to pray for answers, but now I'm praying for strength. I used to believe that prayer changes things, but now I know that prayer changes us and we change things." -Mother Teresa.