Well, overall, today was a decent day and at least I am working towards finding some answers! The morning started out with the pulmonary function tests and this time I actually had three different breathing tests to do. This resulted in some uncomfortable chest pain and that head pain for the remainder of the day…but I was able to push through and get it completed! It was then time to talk with the doctor! And there was a lot of info so I will do my best to explain it all!
I again reviewed my symptoms as well as new symptoms I’ve been experiencing that I don’t feel are FM related. Dr. Hornick verified my feelings by stating I’m “a complicated case” simply because I have too many other health factors to contribute to my symptoms as well. Tim says he could have told the doctor I was complicated years ago!! 😉 Dr. Hornick said he is going to dig deeper and basically look at every possible scenario to make sure we aren’t missing something else.
The medical student had shared with us earlier that due to my PA stents being open that they were thinking my symptoms were most likely now due to my lungs and not my heart. When we met with Dr. Hornick, he went on to explain that my pulmonary function tests indicate that I do have obstruction in my airways however there was no real significant change from the last time. This is good but at the same time he warned this is what histoplasmosis does…testing may indicate minor damage or even normal results however the symptoms are very real and severe. They simply don’t know how extensive the damage is just from these tests. With my lung function I am hanging on tight at 67 which is mild obstruction..but 65 and under is moderate obstruction. I basically had the same results for my pulmonary arterial hypertension…so right on the line for moderate with all of my problems.
We then talked about some of the experimental drugs that have been used for this disease and I did have a feeling I would not qualify as a candidate simply because I’ve had this disease too long. Dr. Hornick explained that while these new treatments have shown progress for others, he has also seen where the masses did shrink yet the symptoms remained. Nothing can fix or reverse damage that has been done. And again, I know I probably will never benefit from a cure or treatment options that prevent damage but I really hope that my body and my journey is teaching doctors how to help the next person who is diagnosed with this disease!
So anyway, it was decided that since I do have signs of obstruction in my lungs that he would order a CT scan of my entire chest and then go from there. He agreed he would like to see how the masses look now. I did not ask if this means both lungs might now be affected but I am pretty sure the damage is still constricted to my right lung…at least I am praying so…
As far as my extreme fatigue, he again wants to make sure nothing more is going on instead of just blaming my FM for this problem as well. He ordered a sleep study but unfortunately this cannot be done at home. He will be setting up a night for me to go into a clinic and have this test performed. Definitely sounds interesting as I will have wires connected to my head and a tube in my nose??? Tim tried to convince Dr. Hornick to allow the kids to stay the night in the clinic with me so that I could have a more realistic environment but that didn’t fly! Haha!
So, a lot of great clarification about what my body is doing, and while nothing can be done for my symptoms, I at least am getting answers and a better understanding of what is happening to me…and I had someone agree that I really am not a wimp or exaggerating how lousy I feel at times!
Once we were done visiting I did the six minute walk which I typically have no problems with and then I moved on to do lab work. I finally finished the appointment with my CT scan! For some reason I was prepped and then sent back out to the waiting room until they were ready for me…
So, I will be anxious to see what the CT scan results show and I should hear back early next week. And while my husband didn’t take me to Brett Michaels…I did get to help with chores…so it equals out right?!
Topped the long day off at the car show in town with the kids so I really can’t complain about how the day turned out! God is good!
Skyler being Skyler….