My fatigue lately has been off the charts. I struggle to get the simplest of tasks done, and to be honest I just don’t feel like getting out of bed for days on end. I have been slowly, slowly sewing on a quilt top over the last few weeks. It is soooo exhausting to pin two fabrics together, guide the fabric through the sewing machine, and then to stand up to iron the seam. I handled all of this by 1) sewing only for an hour a day, and 2) lowering the ironing board so I didn’t have to stand while ironing. Take that, you nasty, exhausting fatigue!!
When I noticed some strange terminology on my last heart imaging test report, I contacted my pulmonologist about it, and he ordered a CT scan of my lungs. (You can read about that adventure here.) I knew that something was up when I got a call from his office telling me the date and time of the earliest possible appointment with this doctor. The nurse had intervened and made the appointment for me ahead of time. Then there was a call from the cardiologist’s nurse that was the same; an echocardiogram and appointment with that doctor had also been scheduled for me in order to secure the earliest possible appointment. Kind of the harbinger of a tough appointment, right?
Today I had a pulmonary function test and met with the pulmonologist soon afterwards. We joked about the horrible year we had both had. (He is a pulmonary critical care specialist who has been on the front lines of Covid care for two years now; for me lockdown never ended and the BLZ was running wild.) We laughed at my summation of the year: Crushed by Covid. We decided that “Crushed by Covid” could be the name of a really sad band. Then he whipped out his laptop and had me move over to look at it with him.
He had prepared for my appointment with a spreadsheet of my lung function tests over time and my latest lung scan along with that of a normal person. The spreadsheet showed that I was losing volume in my lungs. The scan of a normal lung was really interesting (old biology teacher here…) and then we looked at mine.
Um… my lungs were really cloudy. Like frosted glass. Like… “Hey. Is that what they call ground glass lung?” I asked.
“Yes. That is exactly what we’re looking at. That’s why I wanted you to come in. This isn’t the type of conversation that you have over the phone,” he replied.
Ground glass is not good, folks. Ground glass is the type of lung imaging that Covid patients with pneumonia have. Covid presents like systemic sclerosis because there is an extreme immune response going on in the lungs; both are aggressively treated with drugs that target the immune system. I also have some honeycombing that is the beginning of fibrosis; first the inflammation (which creates the ground glass appearance), then the fibrosis follows. My ground glass lungs are, in his opinion, absolutely not Covid. It is not likely to be just pulmonary edema. It’s systemic sclerosis at its worst. This is interstitial lung disease.
So, it is not good. On the other hand, this is good. I’m in trouble, but the problem has been identified early on and that means aggressive treatment now may stave off the worst of the fibrosis. I am so glad (and lucky) that I googled those crazy medical terms and then followed through with an email to my pulmonologist.
I’ve been referred to a surgeon for a lung biopsy procedure. Evidently that will land me in the hospital for a few days. Following that, if things go to plan, I will be started on more aggressive immunosuppressive drugs. He is going to talk to my rheumatologist about starting a course of chemo and an anti-fibrotic drug. One of the last things that my pulmonologist said to me was, “It’s okay to cry about this, but we have a plan.” That’s when it hit me that this might be really bad; lockdown will continue, and the fatigue is probably going to get worse. Oxygen 24/7 is right around the corner.
Crushed by Covid plays on. What a sad little band it is.
33 thoughts on “The Scleroderma Chronicles: It’s okay if you cry…”
Of course I don’t LIKE this post at all ! – but I hit the like button because I honour the way you are completely open about it all, Marilyn. I think when he said what he did it wasn’t a “cry because you’re on the way out” comment; but simply a warning that there is not yet a light at the end of the tunnel re your need to suffer. Which is, of course, the apparently endless price you’re paying for being alive. But one day, WHOSE NOSE ???, as my beloved bloke used to say. 😀
At least he didn’t refer me to palliative care! 🙂 I almost said that but thought better of it…
I’m very glad you did. Palliative care for my beloved husband, 16 years ago up in Sydney, was appalling. In fact, it wasn’t. Care, I mean. I have a loathing of the phrase.
I was referred to palliative care early on in my scleroderma journey; it was pretty good. My lung disease came under control pretty quickly with medication and I was discharge 6 months later. I’m sorry that you didn’t get the support that you and your husband should have received. Hugs.
Oh Marilyn, I don’t know how you summon the strength to keep going, with your body misbehaving so badly. Your quilt is beautiful and must bring you some joy. Best wishes
It is just one day at a time over here in Casa Hannah and the CoalBear. Today it is nice and sunny and I’m knitting on a sock!
This is really awful. Despite your struggles you have produced excellent work. I remember an earlier post in which you detail discovery of similarities between your condition and Covid. I do wish you well
It really is kind of awful luck. I knew I was at high risk for the pulmonary hypertension that finally developed, but people with my autoimmune profile are mostly spared the lung disease that has now reared its ugly head. Nope. I guess I’m special or something because I hit the scleroderma jackpot or something.
I know hearing “I googled that” is probably a doctor’s least favorite thing to hear, but in this case, so glad you did! And even more glad you had the energy to do that and ask questions and take charge of your health in that manner. It sounds like the pulmonologist is a good one – hang onto him! I hope the immunosuppressants offer you some relief from symptoms. They are pretty amazing drugs despite their side effects so I hope they can get you on some treatment that’ll be of help. Sending you lots of virtual support! (And OMG – that quilt! I absolutely LOVE IT!)
They usually tell patients like me to stay off the internet, but I’m pretty prone to hit Google for info before I even drive out of the parking lot. One of my doctors told me that he hates it because people panic and decide that they are dying. I can see their point, but I don’t panic easily, and worrying about the unknown is worse. In this care it paid off big time that I googled. There are some new drugs that really help stop/prevent the fibrosis process and I’m hopeful that an early intervention will make all the difference. Today I am feeling perkier (the sun is shining and it is warm) and I’m actually thinking about sandwiching that quilt top with the batting and the backing. There may be a little kitten problem…
Have been following… am thinking of you, and sending all good intentions. Those words are so weak, but I don’t have the “proper” ones. Truly, wishing you the best as you deal with this. Holding space for you. Just wanted to let you know that I am reading your words, and that I care.
Thank you so much. It means a lot to have people respond to my posts and I appreciate the good wishes. 🙂
I did not like to hear your doctor’s news but I am so glad you have a plan . It feels like you are walking a tightrope. But you are moving forward. Your knitting and quilting continues to be gorgeous. I love hearing about your cats and gardens. Hope you get some good drugs. Joan
It is good to have a plan. Meanwhile, I have great knitting and quilting to keep me going. 🙂
I follow what you are going through- i just never know how to say what i am feeling for you. I am so proud ? in awe of? the way you are coping. Like everyone else- i just wish there was something i could do!
Well, I did cry a little on my way home. 😦 Then I hit the grocery store to score that chocolate cake! Thank you so much for your kind words. Really, all I can do is take it one day at a time. I have learned to not worry about things that haven’t happened yet.
I have been following you for years. I rarely comment because I struggle with finding the right words, but I wanted to let you know that I read your words and that you are often on my mind. I enjoy all your writing and admire the time and effort it must take for you to do what you do. I am glad to hear that there is a treatment regimen for this latest finding. I hope it will work for you and that you will quickly benefit.
Thank you so much. It is hard to know what to say, especially when there isn’t any quick fix for the problem. The drug that my doctor wants to put me on does have a good track record for halting fibrosis (it is new) so I was glad that he mentioned it.
I am so sorry to hear that, but glad there is a plan. Glad that you took action and your care team is going into action to help you quickly! Thinking of you and sending you good thoughts!
Thank you. It is good to have a plan and such a great team of doctors.
I’m so sorry to read this. I’m thinking about you.
Thank you. I kind of knew this was coming so I was pretty prepared, but it was still a blow.
I’m so sorry, sending virtual hugs, dealing with all of what you’re going through and ILD is very difficult. The fatigue with lung issues is awful in itself. ❤️❤️🙏🏻
The fatigue has just been something, that’s for sure.
I hear ya – I’ve had to go down the cyclophosphamide track and now I’m heading down another course of treatment which is more aggressive. Staying positive has halped but there are days 😊 stay strong 👍
Oh, no. I’m wondering what is more aggressive than cyclophosphamide… are you getting ready for a stem cell transplant? Hugs to you, my fellow warrior. I so agree with you about attitude; my hope is that
joy with the little things, a crazy sense of humor, more curiosity than is good for me, and grace will bring me over the finish line. 🙂
Nah infusion of rituximab – sorta next level/stage apparently much cheaper option than another drug we could try 🤔
Check out my health updates on my blog braypa.wordpress.com
Stay strong 👍
Oh, I hope that it goes well for you. I will check out your blog for sure. I’ll be starting on Ofev at the same time as the Cytoxan. I’m happy that they have drugs, but this week has been hard.
It’s interesting the differences between approaches that numerous specialists are trying as this disease manifests itself in all sorts a ways – take care 😁
Not good news. The trick is to do exactly what you are doing. It’s important to honor what your feeling and have a good cry. After that, you need to arm yourself with a positive attitude, humor and to celebrate the small victories. Thinking of you and sending virtual hugs.
Thank you. What you describe is exactly what strive for. Good attitude is everything!