The Scleroderma Chronicles: The shunt hunt takes a left turn…

I’ve been continuing my adventures in cardiology over the last several weeks. If you have been following along on my scleroderma adventures you know that I had a trip to the Cath lab that led to the discovery of a cardiac shunt: a hole in my heart. I also was eventually diagnosed with exercise-induced pulmonary hypertension and started on drugs to treat it, which is a lengthy process as I was slowly titered up on two different drugs while monitoring for side effects. I’ve been mostly living in bed for the last 6 weeks except for short trips out for more testing and blood work. The cats have been loving this, by the way. I’m kind of their captive right now.

This is edema in my arm. I’ve been dealing with headaches, muscle pain, edema, low blood pressure, and extreme fatigue. I cough a lot. Every new weather system is a nightmare. Ugh!

While the whole process has been pretty difficult, I am breathing much, much better and that blue lipped thing has mostly faded away. No more panting!! I haven’t had to put my head down because I felt faint for weeks. This is huge, people!!

I may have to retire the whole BLZ logo the way things are going!

My cardiologist is still hunting for the shunt that was detected in the Cath lab. I have one that they can see (a patent foramen ovale, which is pretty common), but for the really significant disruption of circulation that was detected in the Cath lab the feeling is that I have something much bigger somewhere. I’ve gone through 3 rounds of testing looking for the dang thing, and so far, no joy.

When the test results come in, I always read the entire text and google terms that I don’t recognize. The last imaging of my heart did not find the shunt, and my cardiologist sent an email letting me know that my heart looked pretty good. Umm… okay, but where is that infernal shunt?!!! This is getting a little frustrating, but I am doing better, so I guess I should just roll with it. I did notice this little sentence in the report about the portion of my lungs seen in the heart imaging: “There is mild subpleural reticulation and bibasilar atelectasis.” Say what? I googled and …. bibasilar atelectasis is a partially collapsed lung. I shot off a little email to my pulmonologist to ask if this was something new.

This is why I decided to write this post. As it turns out, this is new. Both of the things that were noted in that test result were significant (subpleural reticulation is evidence of scarring in my lung), and I was immediately sent to get a specialized lung scan that shows I have sustained moderate advancing lung damage over the last 10 months. Oh. No wonder I’m so exhausted. At least they didn’t use the word “severe” in the report. I seem to have developed pulmonary edema and my lungs took a big hit during the last few months; scleroderma is now attacking my lungs. If I hadn’t read that report and then contacted my doctor, no one would have picked up on this. The BLZ may be on hiatus, but the lessons she learned during that drive for the pulmonary hypertension diagnosis really paid off now.

What do you do when you get a sad little lung report? Why, you put on your Catzilla shirt and go start a load of laundry, of course!!

Tuesday I go for a pulmonary function test and then immediately afterwards I will meet with my pulmonologist. I’m kind of thinking that there might be more drugs in my future. Anyway, there is a lesson here that I decided I should share with you all.

Be proactive! Read your test results and ask questions of your doctors. Google is your friend, and those online portals that let you shoot your doctor an email are priceless! Use them!

And now readers, back to the shunt hunt…

Mateo: and now readers, back to my nap! After that I’m going to go swat some more helicopters!

Author: Midnight Knitter

I weave, knit and read in Aurora, Colorado where my garden lives. I have 2 sons, a knitting daughter-in-law, a grandson and two exceptionally spoiled kittens. In 2014 I was diagnosed with a serious rare autoimmune disease called systemic sclerosis along with Sjogren's Disease and fibromyalgia.

16 thoughts on “The Scleroderma Chronicles: The shunt hunt takes a left turn…”

      1. If you’re going through Hell
        Keep on goin’ – don’t slow down
        If you’re scared don’t show it
        You might get out
        Before the Devil even knows you’re there

  1. I know you mean well, Marilyn; but the thought of most people reading their reports and taking action on them is .. almost laughable. It’s your academic learning, followed by various Degrees, that enables you to do it ! And thank all the gods that you are so able ! It would be lovely to eliminate the BLZ, yes; but lovelier still to be able to have confidence in your medicos and KNOW that they will pick up everything without needing you to prompt them ..

    1. Hey, I have spent years helping infuse people with biological knowledge and modeling strategies to acquire, evaluate, and act on information. If only one person goes on and googles a crazy term in their medical report this post was worth the effort!! Sadly, people are prone to be influenced by anti-science information online, and then there are those who are willing to passively accept anything that their doctors tell them. It’s difficult to face down hard truths, or to challenge people in a position of authority with grace, but it is always better to know what you’re dealing with. I have this notion that I should set up a little stand in the lobby of the major health clinic that I go to with my laptop and a sign that says: help with emailing your doctor here!”
      The truth here in the US is that our doctors are over-worked and specialists tend to have tunnel vision when reading the test reports; they focus on the information specific to their field. That’s why I’m now going to my internist to go over the test results from the other doctors together. It really helps!

  2. I’m so very sorry I wish you better health, sending virtual hugs and prayers

    You are correct patients should read their reports. I read my recent lung scan…tech also spotted calcifications in my coronary arteries. My pulmonologist never bothered to mention it, went to cardiologist who confirmed heart disease and in fact said he usually doesn’t see that except in 80 year olds. Would have been ignored if I never read the entire report. Infuriating.

    1. I’m so glad that you picked up on that! I’ve had doctors pick up on things in my presence, but they never acted on it or made a referral because it wasn’t withing the scope of their specialty. Now that is really infuriating! I am working on developing the art of graceful assertiveness with my health care providers.

    1. I’m so glad that we now have better access to our medical records. I used to have to drive to the hospital where the tests were done to have them make copies. Now it is all in my patient portal.

  3. I’m so sorry for these new problems, Marilyn! Good for you for reading your reports and following up! Hopefully they will figure out what is going on quickly and act on it for you!

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