The Scleroderma Chronicles: The BLZ gets a CPET

The BLZ had some anxiety going into this test…

Last month I had a right heart catherization that showed an unexpected problem with my heart… there is a cardiac shunt that is allowing blood from the left side (you know, the one that is always colored red because that blood is rich with oxygen) to shoot over into the other side of the heart where it disrupts blood flow and adds pressure to the (blue) right side of the heart; that is a little tough on the right side because it isn’t built to handle the extra pressure. Houston, we have an explanation for all that blue panting that is going on.

Cool. Finally we were getting some answers and my doctors were taking my symptoms more seriously. My cardiologist ordered up some more tests to collect data and clarify the issue.

The test that I have been the most concerned about was the cardiopulmonary exercise test that was scheduled for last Monday. I hunted for some cool links to explain the test to use in this post and came up with a bunch of technical articles for physicians and specialists. Okay. Let’s not go there. I’ll try to explain what this test was all about. I was hooked up to a bunch of monitoring equipment that tracked my breathing and heart while I was riding a bike. As part of the test my lung function was tested, my heart monitored (like in an EKG), my blood pressure was tracked, my respiration rate, and the actual amount of oxygen I was using and the carbon dioxide that I was expelling for each mL of blood pumped. It was a lot!!

I was a little concerned because of my bad boy hip, but that wasn’t really a problem at all.

I shared my catnip with the Mother of Cats so that she wouldn’t have any trouble with the test.

The test went great for about 7 minutes: then there was an emergency stop. My blood pressure had suddenly zoomed up into the stratosphere at about 6 minutes into the test, and then 30 seconds later I began panting like crazy and the technician pulled the plug. Remember that cardiac shunt they found in the cath lab? When I exercise the direction of blood flow in that shunt reverses and blood from the right side is shooting into the left side where it interferes with the pumping of oxygenated blood to my body. No wonder I turn blue and pant.

The BLZ is both happy and sad at the same time.

The specialist who did my CPET was great at explaining the data to me; when he sent the report to my doctors he also included me in the email group. For the last week I have been reading the back and forth discussion by my doctors about the test and what the next steps for me will be. I am really pleased to be included in this process and feel that this option should be available to everyone; it is also kind of scary as I get a glimpse of what is coming down the road for me later in the testing department.

The gear and set-up for the CPET was pretty impressive. I joked with the specialist about it and he told me that there was an even more extreme version of testing that included a right heart catherization at the same time as the exercise test. Yep. You guessed it. That’s what my docs are considering to do next. It is clear that I have a cardiac shunt but they haven’t located it yet. The BLZ is pretty bummed. The word “profound” was used to describe my symptoms. There has also been some speculation about neuroendocrine tumors… The good news here is that no one is even considering sleep apnea or me needing antidepressants because, you know, I complain too much…

The BLZ is both happy and sad at the same time.

I keep my eye on the Mother of Cats while she reads her email.

So, it was a kind of tough week. I pulled myself together on Tuesday and went to a new yarn store for a little pick-me-up and was so distracted I missed my turn twice and had to detour through Starbucks before I actually pulled up in front of the store. I almost didn’t go in I was so worn out by then, but I did a little mental slapping to put myself into motion, pulled out my cane, and went in…

…to discover a woman dragging out three big bags of yarn that kind of screamed “community knitting” because they weren’t the yarn being sold in the store. “Hey! I want to community knit! Please, can I come play with you guys?” I immediately said.

That is how I ended up in a new local yarn store this morning knitting with the most wonderful group of ladies in the world. They are all current or former employees of the Kaiser medical system that I go to for my care, and they are producing hats for all of the Kaiser clinics that have infusion centers; I know those centers because they are the same ones that rheumatology patients go to. These ladies are all vaccinated and they all wore masks because they knew I was taking a risk to come. They had donuts! I have found a new knitting home when I needed it like no other. I actually cried a little with joy and relief as I drove away at the end of the meeting.

If I hadn’t made all those bad turns and the Starbucks stop this wouldn’t have happened.

My yarn stash is full of yarn that wants to turn into hats. Hats with happy colors and a dash of cashmere. I am on fire with purpose to produce as many hats as I can for other people who are facing down serious medical situations. I want to make them arm warmers and fingerless mitts. I have tapped into the best, most perfect group to produce useful gifts for other people like myself just when I needed to be grounded, inspired, and calmed by the peace of knitting.

The BLZ is happy.

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.

19 thoughts on “The Scleroderma Chronicles: The BLZ gets a CPET”

  1. While the latest findings might not be all positive, at least you’re in the knowing and your symptoms are being taken seriously. Hopefully the next tests will give some answers and these are addressable.
    It is heartwarming that you found such a lovely group to attend 🙂
    All the best

    1. You know, it was driving me crazy that I was being dismissed by my doctors when I tried to explain my symptoms to them. Medical gaslighting at it’s worst! I was pretty sure that something like this was going on and it is extremely validating to get some data to back me up. I’m not sure if this can be corrected, but at least now I’m getting honest evaluations of my health and can plan accordingly.
      The knitting group was the best gift ever just when I needed it! Today I’m making another hat!!

  2. I’m so glad you are finally getting somewhere with the tests! I’m glad you found a knitting group to go to. I will be praying for you.

    1. Thank you. To be truthful, I have been getting a little discouraged, but now that they are seeing it happen in real time during these tests they are like… wow. this is kind of bad. no wonder you struggle! About time, huh.

    1. I am so happy about the knitting group! I finished up the 3rd hat last night. I’m really a process knitter and I’m having a blast trying lots of different patterns and weights of yarn to get hats made. I found a pattern that uses 4 strands of fingering together as a stash buster to make hats… that’s going to get a lot of use!

  3. I’m new to your blog. I’m so sorry to hear what you’re going through medically. But also glad you’re finally being taken seriously. I’ve been down that road with my heart, including the tests. Not fun! I’m having hybrid heart surgery on Tuesday, with two incredible doctors doing the procedure. A long road and lots of tests and frustration. You will be in my prayers. Enjoy the knittng group! ♥️

    1. How nice to meet you. This has been quite the push to get some answers and maybe improvement. I do hope that your surgery goes well and that you have a good recovery. Hugs!
      I’d be interested in knowing what your procedure is and what is being repaired if you are willing to share. 🙂

      1. It’s nice to meet you too. I’m having a TMVI – transcatheter mitral valve implantation. I have both mitral valve prolapse and regurgitation. So, they’re going to implant a mechanical mitral valve into my damaged valve. Under anesthesia, thankfully. I’m pretty sure I go to the ICU. But, the length of the admission depends on how I do. Complications. It really needs to be done since the damaged valve caused my left atrium to enlarge, which caused pulmonary hypertension.

      2. I hope that your procedure goes will and that you recover quickly! I was just diagnosed with pulmonary hypertension today and prescribed medication. I also have a cardiac shunt and some other stuff going on, but that is where he has decided to start. Hugs!!

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