This week I finished up the pulmonary tests to see what was up with my lungs. This was pretty darn stressful and the poor BLZ was just besides itself with the trauma of walking into a major hospital to get admitted for outpatient testing.
I was brave. On the day my state opened up the first drive-through testing station for the Covid virus, I presented myself at outpatient admissions. I wore my fleece gloves the whole time I was there and followed all of the safety guidelines. I combined two appointments into one so I could pick up the equipment for overnight oxygen level monitoring while I was in the building for pulmonary function testing. The hospital was almost deserted and had bottles of hand sanitizer out for use at every stop on my route, so it wasn’t as bad as it could have been. I literally swerved and walked around anyone in my way, especially if they were wearing a face mask…
In case you all need a reminder, my red blood cell count (rbc) is way too high, and I have blue lips and shortness of breath. My internist diagnosed polycythemia, and once I googled it I discovered that I have every single one of the listed symptoms. The purpose of all of this testing is to uncover the underlying condition causing my rbc to rise. So, let’s just jump to the chase. Here are the results:
- My lungs are scarred and I have interstitial lung disease, a type of restrictive lung disease. I am stable and haven’t gotten worse when compared to the last testing two years ago.
- It’s not pulmonary hypertension. Yay! That would have been really bad news. My echocardiogram showed that I am at the upper limits of heart wall thickening, and my pulmonary artery is at the upper limit of normal, but I’m hanging in there.
- My oxygen level fell below 89% for almost an hour while I was sleeping the night I wore the monitoring equipment. Yay!! Houston, we have found a problem!!
Once the results were in the pulmonologist’s office called for a phone appointment and I got the good news. Well, the sort of good news. I have to go on oxygen overnight to keep my levels up, and the hope is that my rbc count will start to drop. If overnight oxygen doesn’t do the trick I may have to go to oxygen 24/7, but I’m not there yet. (The BLZ is happy but a little sad too. The BLZ hates to wear oxygen, and really doesn’t want to wear it when it goes out shopping… ) Seriously, I don’t appear handicapped until I have to walk with a cane and wear oxygen… then there is no hiding it any more.
Thinking about future appointments and the procedure with the hip specialist (I need an injection of steroids into my bad-boy hip), I asked what my risk from Covid was… (The BLZ was trying to not cry) and my pulmonologist told me straight out that she thought I would survive an infection but that I should put off any more trips to medical clinics for a few more weeks so that hospitals could finish gearing up for severe cases. Well, shoot. (The BFZ is now sobbing…)
Then I throttled the BFZ into silence and headed out to buy the last of the supplies that I needed to get through a few weeks alone. I’m immunocompromised; the medications that I take to control my autoimmune diseases have helped me to become stable, but they also make me high risk for any infection. Nothing has changed, I reminded the BLZ, but now the risk of a serious infection is coming at a time when the medical system may be overwhelmed and unable to take care of me. I’ve been using good judgement, social distancing, and hand washing for a few years now; I will continue for myself and everyone else sharing this scary time.
The truck carrying the oxygen equipment was at my house waiting for me when I returned so I am set up. Hopefully the BLZ will now slowly fade away and I will stop panting for air every time I move.
If this was a race to get new test results into my chart, the underlying cause of my polycythemia identified, and remedial measures into action, I have made it. I have a phone appointment with my new rheumatologist next week and I will ask her about the hip procedure and referral to the foot specialist, but I think that in the current unfolding Covid crisis there isn’t any hurry.
As for the inner voice that worries and feels panicky, my inner BFZ voice, I am going to smooth it into submission with the peaceful zen of knitting. Be brave, be brave, I purr to myself. Just like my son’s kitten Jonesy.
You all be safe out there!!
24 thoughts on “The Scleroderma Chronicles: The Blue-Lipped Zebra Goes On Oxygen”
Take care and know that someone is thinking about you. Posting 2 entries in one night tell me you have so much on your mind. I hope things go well for you and I will be thinking about you. Take care Joan Vey
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I do have a lot going on, so I decided to break it into two parts. It’s a time of stress for many others, too. Hugs!
Well that’s good news in many ways, the oxygen at night will take some getting used to perhaps, but at least it’s a step you can take and that feels positive. Stay safe x
I am really relieved that something has been identified that can be addressed now without more testing.Stay safe, too!
May you come through
I wish the same for you, my friend.
It’s great that you have some more answers and that you’re able to put off more time at hospitals with everything going on right now. Thinking of you!
It is great! I’m so glad to have the oxygen before it became impossible to get the unit. Be safe!
There is an answer! Timing isn’t perfect but an answer is a huge thing:)
I’ll be thinking of you and wishing you good thought. Stay safe:)
There may be more answers, but I am glad to get this one! Here’s hoping that I start to improve rapidly!!
An answer! I hope the oxygen at night does the trick and you can shop oxygen free (once it is safe to go shop again).
Me too!! I am so over the whole blue-lipped look! It has been a push, especially since the pulmonologist was a little hostile and reluctant to order testing, but I got there.
You have remarkable perseverance and now at least there are some answers. Medicine is certainly an imperfect science at times. Do you ever have someone to go with you to all your appointments and running around and maybe a bit of support?
I don’t have brain fog right now so it’s been easier to persevere with the doctors. Sadly, this is totally a solo act as there really is no one who can go with me, although if the need is great one of my children can be pressed into service. They all have their own medical issues and I hate to impose.
Stay safe and take care of yourself! I’m glad a cause has been identified and there is a pretty straightforward treatment, and very much hoping the oxygen while sleeping takes care of it!
Me too!! I’m hoping that I will sleep better too. 🙂
I’m hoping so! So hope the oxygen helps you!
How are you doing? No post from you for a while, so just checking in to see if you are ok. X
I am okay! I’ve been home all week in self-isolation and enjoying my oxygen. 🙂 I’m writing a blog post now. Thank you so much for checking in with me. These are scary times.