Shame on you lung!

I have a lung that’s missbehaving…

Here’s the downside with having POTS (ok, there are nothing but downsides, but stay with me here):

We start a few Days before Christmas. I was more tired than usual, it was difficult doing anything and I slept a lot.

Now we skip ahead a few days, to before New Years Eve. I was even more tired and slept more and was constantly exhausted.

And another skip, a week this time. Now I as getting really tired. It was hard to walk and I was exhausted all the time. I could still function though, I could still work my 50%.

And then 1,5 week ago, friday the 13th it was just too much.
I slept from that afternoon until wednesday. I was constatly sleepy and tired. I was beyond exhausted. I had huge problems breathing. I could hardly eat. My body refused to do anything. I figured all I needed was rest.
So I was hom sick last week, the usual – POTS is acting up and a bit of rest will take care of it.
Sunday came and I was even worse. I could hardly eat at all. (I don’t even want to eat anymore because o how I feel after. I can’t breath, I can’t sit up, I can’t do anything but throw myself on the sofa and hope for the best.) So off to the Emergency Room.
I spent 15 HOURS there!! The record is usually 6-7!! It as complete chaos there. I got there 14.39 on sunday. I could leave at 05.30 monday morning!!! First it took 6 hours to see a doctor. Then they needed more blood because the first tiny amount they had goten from me (yeah, good lucking getting any blood from this body!) had been ruined because the nurse had to “dig around” in the vein to get any!
Later, I was going for a CAT scan and a needle in my arm was needed. Yeah… So I’m afraid of needles. And it’s really hard to draw blood or anything like that from me. Bad combo. After 11 tries (!!!) they finally had 2 needles, one in each hand. Both were rejected by the nurses doing the CAT scan. The veins weren’t strong enough and would burst….

The next day, yesterday, I was called to go to Lund, the university hospital. It’s a 30 minutes bussride from here.
4 new tries for a damn needle (they managed), then I inhaled a radicoactive gas and was then injected with a radioactive fluid. I was then taken to a room labeled “GAMMAMACHINE” (and I am SO dissapointed I didn’t turn in to She-Hulk…).
It took 4 hours going to Lund, doing everything there and going back to the emergencyroom for the results.

Back at the emergency room, I had t go through the whole process again. Register at the frontdesk and wait. I waited 4,5 hours for nothing more than the results!! Finally the nurse called in and told them to come and get me because it wasn’t OK to wait for this long.

Now – I have POTS. Crappy things will happen.
Hard to breath? Yeah, one of the lungs has collapsed a bit… Not so strange. The examination in Lund showed that my breathing is a bit bad and that’s caused the lung to cllapse (not all of it, not sure ho much it is).
For the first time ever, I came to a doctor that new a bit about POTS and was sure my problems breathing had to do with that, so he set up for an x-ray in 3-4 weeks to see if it’s healing on its own, and told me to talk to my cardiologist to see if there’s anything we can do. I need to stay home this week too, to rest.

So now I’m home, resting, trying to figure out what I can eat. I’m doing a bunch of broccolisoup later, soup is easy to eat so I’m hoping it will work. That’s the advice on food I got, “try to avoid solid food” 🙂


Living the POTS life…

It’s not easy, but what are you gonna do?

I have sinustachycardia and POTS (Postural Orthostatic Tachycardia Syndrome).
For this, I take Procoralan, a medication to lower my pulse. I also take nitroglycerin, spray, when I need it. I have tried medication for my bloodpressure (it’s a bit too low and likes to drop every now and then), but sadly I can’t take any of them due to side-effects.

Early 2015 I started to get more tired. At times, I could hardly walk from exhaustion. It came every now and then. It was because of my POTS. Nothing to do but to ride it out. Every now and then I would get really, really tired. Exhausted. So I would rest a few days, and I got a bit better.
But I never came back to how I was Before. But I could manage!

Fast forward to late July/early August 2016. I started to get more tired again. Slept more. Didn’t have the same energy at all. Still my POTS. Nothing to do.
Since then, I’ve a had a small, irritating cough when I do anything. If  walk to fast, if I lift anything a bit too heavy etc. My doctor determined I had gotten worse. Earlier, tests showed I could work up to 75%. Now they showed 50%. And trust me, I could feel the diffrence!

IN the Days Before Christmas I slowly got more and more tired. More and more exhausted. I had to walk slower, I could hardly carry anything. I got really tired and I needed more sleep. It started to get really hard doing my physical therapy too.
Since then, it has only gotten worse.

I have been home this week. Friday afternoon, Saturday, Sunday and Monday was spent on the sofa, sleeping. Too exhausted to do anything. Out of breath from everything. Walking from one room to the other was hard. Eating started to get hard too. I got tired from it.

Tuesday and Wednesday was also spent on the sofa. A Little bit less sleep, but still way more than normal. I got my hopes up. But then I ate… I can hardly eat. I get so tired after…

An then today. Thursday. I was hoping things was going the right way but no. I’m constantly out of breath. I’m so, so tired. I’m exhausted. After I eat it’s really hard to Breathe and I don’t even want food anymore. Obviously food is kind of important (duh!) so I make mysel eat. Today I had a tiny sallad. Tomatoes, corn, spinach, parmesan and a tiny amount of ham. It was such a small portion, but it was enough to knock me out. I collapsed on the sofa and just focused on breathing. I even had to call for help so I could go to the bathroom. It took about 3 hours to get a bit better. I’m still exhausted and out of breath. It’s been 4 hours now.
When I go to bed, I can only breathe properly if my head is a bit elevated. Same on the sofa, I can’t sit straight, I have to lean to the side with a big pillow. Not too high and not too low.


But what has me a bit concerned right now is my weight. I don’t eat much at all, but I’m not losing weight either. That’s a bit odd. I think I’m retaining fluid. My belly is all swollen at times.


On Monday, I go back to work. And doing that without being able to eat properly can only end bad, I work 50% (4hours/day), but it’s still hard on my body.
On Tuesday my mom (whom recently had a minorheart-attack) is going to see a nurse at the heartclinic. I’m going with her for support, and because they want a relative there too. I’m gonna tke the opportunity t ask a few questions about myself.

I’m going to update here along the way (as much as I can, since I’m super exhausted all the time).

Do you have POTS? Please feel free to leave a thought or two 🙂