Today is the first day I have been able to sit at the computer and type. I was beginning to think I would have to learn to type with my nose-since nobody has touched it. Yet. There is still time...
Last Friday I had to go to have a CT Angiogram. It's a scan of the heart, just to show how the arteries are working. My cardiologist was so happy (yeah, and so was I. Obviously.) that I don't have an iffy valve that he wants to check the way the heart is working. That's fine with me: my heart is, after all, number 1 on my list of top ten organs. So I went along, suspecting nothing. My first mistake. The tech who was to insert a cannula for the radioactive contrast (here we go again. More radiation. Nobody who ever wants a child should ever stand anywhere near me), made such a mess of my arm that he caused a lump that was the size of a goose egg. No exaggeration: a goose egg.
These idiots seem to think they know my veins better than I do. Oh, he said, I can do this. Really? I couldn't move my right arm, since the lump was right at the elbow. So, he then went over to the left arm-and did the same thing. I was swearing (under my breath, of course), and I had to bite my lip to keep from crying. That is how much it hurt. When he finally found a vein, inserted the contrast, and called in the doctor who was to do the scan, I was told I needed beta blockers to bring my blood pressure and heart rate down below a certain level-otherwise the test would have to be repeated (and I said, give me the blockers, because you are not going to repeat this in my lifetime).
I don't know how I had the strength to get home. I couldn't bear to have anything touching either arm, couldn't bend my arms, and felt like throwing up, I was in that much pain. But I finally got back-and very few people came near enough to crash into me, I must have looked that threatening. I got in the door and started to cry. And swear. And I grabbed an ice pack and a tube of Arnica (great homeopathic remedy for bruises, I've been using it for years), had to peel my shirt off, and that was my weekend. I spent it rubbing in the Arnica, and really sobbed for a couple of days (such a wuss). I also had to wear short sleeved shirts for a few days.
By Saturday afternoon my arms were completely black. Not black and blue: black. My right arm had this huge lump so I couldn't move my elbow-and the whole area was swollen and black. Part of my left arm was just about the same. I looked like I had some kind of rotting skin disease, like my arms were going to fall off any second (serves me right for watching The Walking Dead, doesn't it?). And I was in excruciating pain for a few days. And swearing? If I had put a pound into the swear box every time I swore (since Friday), I could have bought a round trip ticket to Australia. First class.
Tuesday I had to go to the hospital for round two: another CT scan, but this time of my lungs. More contrast. More radiation. I wondered if I was starting to glow. And don't you know, the tech this time had to go into my right wrist to find a viable vein. So when she was finished, my wrist was just as black as the rest of my arm. Oh, joy. A week of not being able to wear anything that touched either arm, a week of being unable to do anything that involved actually moving either arm-the only saving grace was that I couldn't do housework. Such a shame (yeah, right?).
Everything changed on Wednesday, and I finally got some good news. By "good" I mean-good. I went to see my immunologist and chest consultant in their combined clinic. They were great. They made time for me, which is something I find very unusual, given how overloaded everyone in the NHS seems to be when it comes to spending any time with their patients.
The short version: preliminary reports from the angiogram show that my valve isn't the only part of my heart that is absolutely fine. My heart is absolutely fine. It'll probably outlast the rest of me. And the preliminary report of my lung scan shows that the mass Dr. Dimples saw in the first scan is only a cyst, not anything sinister. I do have some lung damage-something called "bronchiectasis", for those of you who are a little nerdy (like me) and want to check out the details on the great God Google. But the damage is very mild, which both consultants said was very unusual, and which made them very pleased indeed. Great news for me, since my lungs come in at number 2, just a whisker behind the heart.
This is all very important, because I have been walking around for eleven and a half years (since a doctor in Pennsylvania discovered the presence of CVID), thinking that I was living on borrowed time. And the doctors over at the Royal London never gave me any encouragement when it came to any ideas of life expectancy. They were all dismissive. And here at the Royal Free, Dr.S and Dr. J (using initials so I don't piss anyone off) have said that I could live a normal lifespan-a normal, healthy lifespan. Dr. J said that he might take me off the whacking big dose of antibiotics I've been nebulizing since 2010. We'll see about that when I see them both again in May.
I nearly skipped out of the hospital-but, of course, that isn't something I will be able to do (possibly ever) unless I want to fall over and end up in plaster from head to toe. No skipping.
I had my infusions on Thursday-and they added an iron infusion. You are, they said, anemic. And I said, well, if you would stop taking my blood, I wouldn't be anemic, would I? Talk about a no-brainer. So, seven hours later, I got back to my little shoebox, and I have been here ever since. But now I have lumps on both arms that are much smaller than they were last week-and the bruises are nearly gone, so I don't look like I have a terrible disease that will cause my arms to drop off.
I can keep you up to date now. But at the moment, I think I'm going to hit the Kettle Chips. At least I won't die of heart disease. Or lung disease. I'll probably snuff it at the hands of some lunatic from Essex.
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