Roadtrip back to Iowa City…

Well, I am back at it tomorrow! 9:30am I will go through a battery of testing most likely including labs, lung scans and the ridiculous breathing tests. I fail those every time but always get a compliment for my “good patient effort.” But seriously, who does pass those tests?! For any of you who have done them…you know what I’m talking about…and it’s impossible! I mean they put a tube in your mouth so that your mouth is wide open, then basically put a clothes pin on your nose and expect you to breathe normal?!

And even worse the tech person is encouraging me by yelling “go go, go, go, keep blowing, keep blowing, go, go, go” because I have to breathe out as much air as I can into that tube for as long as possible. I’m sorry but when someone is yelling at me like that the only thing I want to do is laugh! But, this is probably an entertaining job on their end as well! Oh, and Tim came in one time to watch me while I did this test…and never again is he allowed back!

I will also be talking to my lung doctor about options…if there are any. Again, I understand that with this disease I am going to have good days and bad days but I have a few simple questions I hope they can answer. 

With my SVC stents, when I got the stents I felt instantly better, and if the stents are closed I usually will know it, but once they’re opened back up I always get that instant relief. With my PA stents, not so much anymore. I still experience the deathly fatigue, heart palpitations, chest/head pressure and shortness of breath. I felt amazing the first several months after receiving my pulmonary stents but now, for almost a year, I continue to battle symptoms as if I don’t even have stents in my pulmonary artery…yet the stents are open.

Doctors have said my disease is progressing, my numbers have been higher to indicate congestive heart failure(but with my disease, that’s supposedly expected so apparently the numbers can be even higher before I should be concerned), I have pulmonary arterial hypertension and even on one of my reports it said COPD…yet none of these issues are being followed up on. 

The last CT scan of my entire chest was back in 2013 which indicated several non calcified masses throughout my chest and even on my spleen. Yet again I have not had a CT scan since 2013 to determine if the non calcified spots have grown or spread. My Iowa City doctors tell me my family physician should be able to do that CT scan but my family doctor basically feels anything to do with my FM should be done by the doctors in Iowa City. I really do love all of my doctors but again the doctors I see are specialists. I’m looking for a doctor who can see me and view my FM as a whole, not just a lung specialist…or the heart specialist…or the interventional radiologist. And in August…chalk up two more new specialists I will see! Unfortunately, there aren’t many of those out there who specialize in FM as a whole.

This disease is known to grow very slow, however, it can also attack very fast and I feel that is what mine has been doing since 2013. I also want all of the other issues with the congestive heart failure and hypertension to be monitored…I don’t want to just “sit on it” and wait until I get bad enough to need intervention. Yes, I can see the doctor’s point of wanting to help me with doing the least amount of damage to my body but…my body is damaging itself…my symptoms are present, my numbers are borderline…my disease is affecting my day to day living. 

It’s time to get proactive, to learn more about what my body is doing and to at least monitor the problems I am having instead of running one test which indicates something and then just letting it be. All the labs I do for regular panels on a routine basis…just add these tests in with it! And all of the non calcified masses in my chest, let’s do a routine CT scan of my entire chest annually to see what this ugly disease is doing. Are those masses growing with the potential of damaging my one good lung or to do more damage to my heart? 

Its not that I necessarily want intervention…but I do want to stay on top of these potentially dangerous symptoms so that one of these times we don’t  discover that I waited too long and intervention is no longer an option.

So please say a prayer that I will find some answers or that they will at least do this one CT scan of my chest I’ve been wanting to do again since 2013. That would give me a good indicator as to if and how fast anything else might be progressing. Or if these symptoms are the results of the calcified masses and nothing indeed can be done then ok…but at least we are monitoring and following up instead of just waiting until something else possibly more severe happens. 

And also pray for Tim because I am usually not the best of company on these trips. I know God has this all figured out and this too shall pass but that doesn’t mean it’s easy. Oh, and if the day doesn’t go well maybe Tim will take me to the fair to see Brett Michaels  😉

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