The Waiting Game

So my pulmonologist got back to me via email in regard to my higher levels indicating congestive heart failure.  He simply said a reason my numbers CAN be higher is due to my “condition” but did not elaborate much more on that.

I had also asked him if I should be concerned about the immature cells or the higher hemoglobin that my last blood work had shown, as my levels for these tests have always been within normal range, but he did not address this in the email.  I really do like my doctor and while his focus is on the lungs, he has went out of his way to order special testing to see if we can’t find some answers to my most recent heart symptoms. Once again though I feel like it’s a matter of wait until my condition gets unbearable before we do something. Then again this is how it has always been so I should not be surprised.

This is yet another frustration that we face when dealing with such a rare disease so unknown to doctors. I have higher numbers indicating congestive heart failure, I have the symptoms indicating congestive heart failure yet I am to just deal with it because this is basically just part of having Fibrosing Mediastinitis.  While a “normal” person with my results and symptoms (on a good day) would most likely get immediate medical attention, I am told basically there is nothing to do for me because this is just “to be expected” with my disease.

This is confusing for me because while it is to be expected, there is still obviously damage to my heart with the high numbers recently.  Let’s at least try to do some things to prevent it from getting worse? But no, since I have FM which does attack all of my organs, veins and arteries in the chest, I simply must sit and wait for my levels or symptoms to get so extreme that they finally have no choice but to take action. Regardless if the strain on my heart is from the FM or regular issues that “normal” people have, damage is still occurring.

I have a list of questions I will be taking next Wednesday to my actual cardiologist so if any of my FM friends have suggestions on what I can ask please let me know! Otherwise hopefully I will find out more once we are able to sit down and visit in person.

Ahhhh the joys of being “special” 😉

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