The Scleroderma Chronicles: The cardiac test results have arrived…

Spoiler Alert: there’s a happy ending!

It has really been kind of a rocky month. Following several episodes of shortness of breath, chest pain, heart palpitations and blue lips my doctors decided that I was due for a full round of testing. My primary care physician ordered up a battery of cardiac testing and sent me off to see my specialists.

First up: the pulmonologist. I made these cute little sheep cookies to take to the office staff when I went in for my appointment.

I really like my pulmonologist. She is thorough, direct, and answers all of my questions without sugar coating things. I had chest pain in her office and while I was talking to her my lips turned blue right on cue. Wow. It’s like having a trick pony that performs for the audience! We talked about the possible causes, all of which were pretty serious heart conditions, and she decided that I needed to complete my cardiac testing before I did her pulmonary function tests.

I’m not going to lie, it was sounding pretty serious. She thought that I either was developing heart failure, pulmonary hypertension (a fatal complication of scleroderma), or my heart was being starved due to blood vessel constriction.

Next up: my rheumatologist. We discussed increasing my immunosuppressant dosage to crush my Sjogren’s, which has been pretty active, into submission. She hated to up the dosage unless there was no other choice due to the risk of infection, especially since she thought that it was probable that I was experiencing pulmonary hypertension symptoms, and that meant that the pulmonologist should be the lead on treatment.

What was needed, clearly, was some test results to clarify the situation. And knitting. Lots of knitting.

Knitted fabric.
I knitting like crazy all month on the What the Fade?! shawl and finished it yesterday. There has been research that shows that knitting has calming benefits greater than yoga. Since yoga is out of the question right now, I knit.

Are you familiar with Holter monitors? That’s the test where you are hooked up to sensors and wires that go to a device that records your heart’s electrical activity for 72 hours. 72 long, itchy, forced to sleep on your back, OMG, how did this sensor get attached to my hair, hours. Whew. It was done. The results: my heart was normal. Still short of breath and feeling dizzy, I went back to knitting.

Next up was the echocardiogram.Β  Dizzy and feeling faint, I went for the test one morning last week and then headed on over to my LYS for some knitting action. Following my BKB Deb around the store looking for the yarn to knit a Tegna sweater I felt faint and ended up sitting on the floor at one point. This was getting ridiculous! Especially since the technician who did the echocardiogram test told me that she thought I would be very happy with the result…

I began to wonder if the problem could be my blood pressure. After years of battling hypertension that was hard to control I was posting some really low numbers at my checks. Maybe I was getting too low?

I did a little searching on the internet, and discovered that there was some research that suggested that it was important to keep diastolic pressure above the 60s. Oh. I was often in the 60s. Maybe I was sending my pressure down too low every time I took my morning medication. My doctors were so happy with the current numbers, but maybe things had changed. Maybe I didn’t have hypertension any more… maybe the pulmonologist was right about the blood starved heart, but it was due to low blood pressure. I decided that I should check my pressure every morning before taking my meds.

Blood pressure.
Tbis was my blood pressure reading the next morning before my medication.

I skipped my meds and started recording my pressure readings several times a day. The chest pain and dizziness disappeared. I sent an email to my primary physician with the BP log attached and we set an appointment to talk yesterday as she had just received the echocardiogram results.

Surprise!! My heart is in better shape now than it was at the time of my diagnosis. My pulmonary hypertension is gone and my heart is now pumping normally. She agreed that my high blood pressure seems to have reversed and that the medications that I have been taking are too much for me now. We agreed to try a quarter dose for a few weeks to see what happens.

The immunosuppressant drug that I am taking has been shown to reverse scarring in lungs, and the high blood pressure drug that I was taking (in too high a dose) also may have positively impacted my heart. My skin isn’t as tight as it was a couple of years ago; it looks like my blood vessels are also now in better shape. Less stiff blood vessels means lower blood pressure. Yay!!

My doctor thinks that the drugs have caused these improvements.

My neighbor, who mows my lawn and prays for a miraculous cure, is sure that God has intervened.

I’m convinced that it was the knitting. πŸ™‚

Next week: the lung testing begins.

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.

17 thoughts on “The Scleroderma Chronicles: The cardiac test results have arrived…”

  1. Fantastic news!! I’m sure it’s the knitting Goddess. You have knit so many amazing things and still have many more to knit:) She’s going to help you get them done:)
    I’m glad you gave the disclaimer at the beginning. My blood pressure went up just reading the title on your post:)

    1. I hunted for the knitting research but couldn’t find primary sources. There are lots of news reports that knitting has been shown to lower blood pressure, reduce anxiety, and relieve pain. It does seem that it has really helped me

  2. Of course it was the knitting. I mean, haven’t they read The Zen of Knitting. (and maybe the blood pressure meds, just a tiny bit helped), but it was mostly the knitting and self-care that goes with it;-). Glad you’re feeling better.

    1. Thanks! Just how I was wondering how to blog about this (or even if I should keep blogging…) The results came in. Still, I would rather my doctors be honest about how I’m doing. It’s just a little nerve racking at times. πŸ™‚

    1. Exactly! I’m now a walking science experiment… I think of myself as a singular data point. I am so glad that my doctors are so open with me and that there are good immune – system crushing drugs available. Yay science!!

  3. It isn’t the knitting, it’s the stash. You just can’t bear to abandon all the lovely yarn!

    1. I joke with a friend that my BLE (beyond life expectancy) stash is insurance that I’ll live forever. πŸ˜€

      I did throw away three decades of knitting magazines this month…

  4. Oh, yay for good news! So happy you have something positive In relation to your health. What great news about those medications and I hope they keep on working on your conditions. I am sure the knitting and prayers worked their magic as well! Have a good week and happy knitting πŸ™‚

    1. Thank you. I am so happy to feel better, and it is so encouraging to know I’m not losing ground after the bad Sjogrens winter. This week will be a stormy one, so i will get lots done on those new projects. πŸ˜€

  5. Hallelujah!!! What a fabulous report! I’m so very happy for this wonderful news, Marilyn. ❀️

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