Now that I have all of my appointments out of the way, figured I would provide a quick update!

I did end up having angioplasty back in June to open up my SVC stents. I was more nervous this time due to my original interventional radiology doctor being out of the country. I even called Iowa City and voiced my hesitation questioning if I should try to hold off until my regular doctor comes back although I knew the intensity of my symptoms would prevent me from waiting. I was assured this doctor had read my history, knew of fm and was confident he could open up my stents. This new doctor would be only the 3rd doctor to open my SVC stents in the almost 15 years I’ve been doing this procedure!

With all the covid restrictions still in place, I was once again forced to wait by myself before and after my procedure so I killed time…and probably annoyed Tim who was sitting in the waiting room, with inappropriate text messages🤣 and selfies…

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My stents were 80% occluded but the doctor was able to open them back up and there were no complications with my 26th angioplasty…yes, 26! I am only keeping track now because my husband said once I hit 30 angioplasties then he will take me anywhere I want to go! I mean forget monumental anniversaries or birthdays…I need to have four more angios for that milestone…such a romantic isn’t he? Haha!

Then this week I saw my cardiologist and pulmonologist and for the first time ever, I was scheduled to see both of them and do all of my testing on the same day! It definitely made for a very long day but it was nice to have them both over and done with!

I arrived by 7:30am and once again was not able to bring anyone with me.

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Once the gown was on and the IV was in place, I did my ct scan and then saw my cardiologist. The appointment went fairly quickly since it has already been determined that we will no longer attempt to open the pulmonary artery stents. We will continue to monitor all of the other concerns with my jugular veins etc. but for now we will schedule a one year follow up unless my symptoms progress more rapidly. He also said depending on my symptoms at my next appointment might determine if we do a scan since I get them done so often for the other doctors and the last thing we want is for me to start having issues from all of the radiation and dye.

I then went over to do my pulmonary functioning tests which again went pretty quick and then I waited to see my pulmonologist. I was very impressed with how efficient the day had gone because you just never know if things will stay on schedule with back to back appointments!

To our surprise, the doctor said my breathing test results had actually gone up just a little bit for the first time since 2015 so I was very excited to hear that! He was quick to say though that of course I know tests results don’t always correlate with how I feel so maybe they just caught me on a good day. Either way, I took that one sentence as a challenge to make sure my tests are even better at my next appointment! This was a great way to end the long day!

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So the plan right now is to follow up with pulmonary and cardiology in one year unless my symptoms get too bothersome.

As far as SVC, I am scheduled for another angioplasty in December as this new doctor feels I waited too long this last time. I will wait and see how I feel in December as to whether or not I push that appointment back because again, my care team and I have already discussed the extreme wear my body has had from so many tests and procedures. While we want to make sure we are still treating my symptoms, we also want to intervene the least amount as possible…and I am definitely okay with that!

I am hopeful that I will not have to provide another update on here for about a year but we will see what the next couple of months bring in regard to my SVC stents and overall symptoms! And while I don’t write as often as I used to, I am still getting a lot of messages from those of you newly diagnosed with fm who just happen to come across my blog while scrolling the internet for information so please continue to reach out to me! I am always eager to share my story but even more eager to hear yours and encourage you in any way that I can! Stay strong and battle on!

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