Yearly Archives: 2018


Good news, I guess?

They’ve ruled out the Polycythemia vera, in at least as far as I don’t have the gene mutation. It’s still a 10% possibility, but they don’t want to do the bone marrow extraction yet. They are now testing for other things it could be that are way more rare.

They still don’t know what is causing any of this blood thickening, which is a concern because it means I have a stupid high chance of having a stroke or clot. Especially in combo with the high blood pressure. And none of the medication has been bringing my blood pressure down at all. It was extremely high today.

The two red blood cell numbers that were high all this time came down a little after the last pint of blood removed, so they did another pint blood draw again and will see how that compares at the next appointment.

Until next time...

Tuesday, December 25, 2018 at 9:17 am

Pandora seems… comfortable

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Pandora seems... comfortable
Pandora seems… comfortable

Tuesday, December 25, 2018 at 1:25 am

Merry Christmas to all, and to all, a good night….

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Merry Christmas to all, and to all, a good night....
Merry Christmas to all, and to all, a good night….

Friday, December 21, 2018 at 6:35 pm

That’s almost 500ml I’m short now…

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That’s almost 500ml I’m short now...
That’s almost 500ml I’m short now…

Wednesday, December 19, 2018 at 4:51 pm

Does anyone else smell toast?

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Does anyone else smell toast?
Does anyone else smell toast?

Happenings and such

Hello… world! It’s been a long time since I did a legitimate post here. A lot has been happening in that time. This post is more for me in the sense of I’m just trying to record what’s been going on, but also makes it easier to just point family members here so I’m not having to tell the story a hundred times.

That said, here we go…

I ended up in hospital yesterday. I woke up feeling dizzy, and almost passed out when I got out of bed. Sat down for a bit and it seemed to subside. Went to get ready for work, and had a difficult time of doing so. More dizziness. Confusion. I texted the Husbear (who was at the gym) and told him I didn’t feel right, and that I was going to lay back down for a bit. He scurried home and made me call my nephrologist to ask what I should do.

Nephrologist? Yeah… kidney doctor. And I guess I’m telling this story out of order.

In June of last year, I was wandering around Sam’s Club. They have one of those blood pressure machines there, so on a whim I sat down to take mine. It was so high that the pharmacist came out to check on me. Maybe they have an alarm in there or something, I don’t know. He recommended I should go to my doctor right away and see what’s going on. I had noticed my blood pressure had been somewhat elevated other times I’ve used similar machines in various places, but always assumed it was because I was walking around and frustrated by being in a store and having to deal with people.

So I made an appointment with my primary care physician, and lab work was done. Super high blood pressure! He put me on Lisinopril 10mg and Atorvastatin 10mg to decrease both my blood pressure and my cholesterol levels. But something else was also off in my labs, so he referred me to a nephrologist for further testing. /joy

It took a couple of months to get in to the nephrologist, and over the next month a lot more lab work was done. She finally determined I have chronic kidney disease. Stage 3b. Drastic diet change to help slow the eventual decline. No more potatoes, tomatoes, citrus, bananas, or raisins. As little sodium as possible. No more red meat. Pretty much every one of those was my primary food groups. I guess the bonus is it’s helped me lose some weight. She also upped my Lisinopril dosage to 20mg.

I’ve been keeping up with my blood pressure at home thanks to a BP cuff that syncs with an app on my phone. The readings never really came down much, and I figured I’d follow up with my PCP at my next exam.

Fast forward to my one-year checkup with the nephrologist a couple of weeks ago. Well, a new nephrologist, as the other moved away. More labs. She was reviewing my labs historically and found something… new. Which she wanted to do more labs for. And which in part might explain why the blood pressure medications I’m taking aren’t doing the job at all. For which she referred me to an oncologist.

And back to the start of the story.

While waiting for a callback from my nephrologist, things got a little worse for me. So the Husbear took me to the ER. More labs, and they confirmed what my nephrologist also suspected. Something called polycythemia vera (more info on it here). Basically, I have to many red blood cells which makes my blood thick. Which in turn messes with my blood pressure. It also explains a lot of the random things I’ve been noticing going on with my body over the last year:
Tiredness (fatigue)
Sweating (at night)
Blurred vision
Early feeling of fullness when eating
Pain under the left ribs
Problems concentrating
Dizziness, vertigo, lightheadedness
Reddening of the face
Ringing in the ears

Add to that the depression and anxiety I’ve been experiencing since this all started a year ago, and other issues that occurred midway through this year, and I’m sure it has all done wonders for my blood pressure anyway.

I received a call from the oncologist office today, and I go in December 21st. To talk, probably more labs, and start whatever treatment they advise. From what the ER doctor said, and what I read online, seems to consists of regular blood letting. Fun times!

And that’s what’s been happening. I’m dealing with it, working on at least maintaining where I am with the kidneys, and getting everything else as “better” as it can be.

Until next time...