On the 13th of May in 2016, I wrote:
So what’s actually going on with me right now??
On Day 1, I mentioned that a mid-February breathing test showed that my lungs were only absorbing 70% of the normal amount of oxgen they should be. I first noticed I had a problem when I went on a hike with the Hill Walking Society at the end of October, and I couldn’t climb up even a small hill without totally losing my breath and getting a sky-rocketing heart rate– over 200 bpm.
My rheumatologist later helped me to identify other symptoms that I had had, indicating lung problems, that happened as early as July or August. So my lung involvement– and this flare– probably began all the way back in the summer of 2015. My Durham friends have never known remission-Heather.
All this year, I couldn’t figure out what was going on with my Lupus. I ALWAYS had low spoons, and I couldn’t restore them no matter how much extra rest I got. I got sick even more often than usual, and the bugs always turned into a chest infection with a cough. I would feel virus or bacteria free for maybe a week or two, and then catch something else.
About two months ago, the lungs and the rest of the Lupus symptoms started getting worse and worse. My joints started to hurt, my fatigue just about tripled, and I was ordered by the GP to stop walking up hills at all, because they were worried I would hyperventilate.
My blood oxygen saturation level was taken, and while it’s ok for normal day-to-day activities, I was told it is unsafe for me to fly in an airplane. It was 93%.
After other tests ruled out things like pneumonia and endocarditis, I was sent for a high resolution CT scan. On Wednesday, I will see the respiratory specialist at University Hospital of North Durham, and she will tell me what it showed, and how we will proceed with treatment. Either, the lining of the lungs is inflamed due to the antibodies attacking it, or it’s inflamed AND the inflammation has caused scarring. Any scarring would be permanent– so we’re hoping that it’s not that. I don’t have pleurisy, which is a more common Lupus symptom; instead, we are investigating for interstitial lung disease.
First, a little update: the lung issues I discussed in this post four years ago are much improved, but not gone. I don’t have pleurisy, and I also don’t have clear cut interstitial lung disease, though the question remains on my medical chart. The consultant at University Hospital of North Durham was ultimately stumped. Unfortunately, she also had an ego, and when she told me, a year later, that she was out of ideas, and I asked if there were places to go for a second opinion, maybe with someone used to lung issues in autoimmune disorders, she told me that no such person existed.
I’m now a patient in a clinic specialising in autoimmune lung disease, which I ultimately got access to by moving back into the Oxford area. Strictly speaking, on the NHS, it was within my rights to access a second opinion from the Oxford clinic while living in the Durham catchment area, but that was never going to happen, whether through the other doctor’s arrogance, ignorance, or simple bureaucratic complexity. I also lost my rheumatology consultant support in Durham, when the department was essentially eliminated through budget cuts. I waited a year and a half for an appointment at the Newcastle hospitals, where I was on a waitlist behind both the general Tyne and Wear population, and the Northumbrian catchment area. Once I moved to Oxford, I was seen within three months. I had the privilege, flexibility, and luxury to move; many in County Durham and other underserved parts of this country do not have the ability to move house in an instant. These are the people who suffered first as the NHS has had funding cut.
I want to apologise for the delay in this post. I had a bit of illness come on quite suddenly yesterday, and I am only now recovering from about 24 hours of intense dizziness and vertigo, fatigue, and nausea. I have no idea what caused it– could be allergies, Lupus, that time of the month, pressure change, what I had for lunch… who knows. But I’m better now, taking it easy but feeling myself. Hopefully I won’t miss another day this month while we cycle through these old posts.
Wondering what’s going on with these posts? Check out my explanation HERE!
This Isolation Life 