Hypokalemia

I remember the very first time my potassium was found low. I was out with Richard and a few of his co-workers we went bowling and then decided to go to a nearby bar. I had a few drinks, but nothing unusual. It wasn't until after people left that I suddenly got really sick. It's almost like being drunk but your worst drunk. I know my limits and don't tend to pass them. People who know me know I can handle alcohol pretty well and know when to cut myself off. So this was so different! I actually suspected maybe I was drugged.

We rushed to the hospital. Once there I vomited and it was almost like instant relief. Of course everyone there was absolutely wonderful and working fast to get blood and an IV placed. Drug test came back clear BUT my potassium was 2.4, severely low!!

I spent the night there having 3 bags of potassium infused through my IV. If you know anything about IV potassium, it BURNS!! I have sensitive veins and had to have it at the lowest level, which took about 6-7 hours to do.

I spent the next two days vomiting. When I had my potassium rechecked it was found low again. This time I was prescribed potassium. My labs kept coming back screwed up which lead to me getting my J-tube.

What's scary is I don't have symptoms or well traditional symptoms of low potassium. Sure I have muscle spasms and cramps but I had those prior to everything happening so that's not really a good indicator. As well as palpitations, dizziness, etc. those were pretty much my normal life but it wasn't worse with low potassium levels.

When my potassium is at its lowest I actually don't get spasms and cramps often. I really had NO symptoms. There was NO indications that my potassium was low!! This was difficult and scary. No one was monitoring my potassium. I had to call and ask for labs!!!

I became more aware and realized that when my potassium dropped below 2.4 I end up feeling like I had the worst hangover of my life!!! Literally this was the only thing I could go off of. As long as it wasn't below 2.4 I felt perfectly fine.

While I may have felt fine, my body wasn't doing fine! I already had muscle weakness prior to my potassium dropping so that wasn't new. I now believe the severely low potassium only made my muscles worse. With time it'll be interesting to see what I can gain back and what stays the same. But I hope to find ways to build strength back and stop its progression too.

Low potassium IS life threatening and should be taken very seriously. So why was my case just left on the back burner? Why was my pleas and questions concerning hypokalemia ignored? Why didn't doctors make the connection?! Why did no one do anything? I often brought my potassium up and asked about it too! I was kinda just brushed off.

Low potassium is known to cause desveststing cardiovascular effects! Its also known to cause Respiratory Failure and death.

End of last year I went to a new Cardiologist. My tachycardia was so out of control. Beyond POTS. It felt like more then just Dysautonomia. Usually my POTS is well under control. With the use of meds and my wheelchair my heart rate is fine (unless its just a bad day). My pulse was always high no matter what which is so unlike me. BUT after several tests my heart was fine. Super strong!! While my lungs were failing my heart was perfect! That was good news. I knew low potassium as well as respiratory issues can effect the heart. I needed a cardiologist to follow me and ensure all was well with my heart. Let's face it your heart is your most vital organ!

When I had my trach placed my potassium was 2.4!! That was pretty normal for me, but they did pump me with high doses of potassium through my J-tube. The next day it was 2.6. This only proved that my intestines weren't absorbing the potassium. I already knew this so I declined further potassium because it doesn't work but also because it hurts so much going in!! They avoided IV potassium because it causes vomiting which defeats the entire purpose, plus after having a trach placed the last thing you want is to cause vomiting.

If you are ever found to have low potassium (also known as K on some lab results) and people are racing around and taking it serious, that's because it is serious!! Low potassium kills, maybe not right away but if you learned anything from me prolonged low potassium can kill you. We are all different though and even if this is your first time with low potassium and depending on how low it is, it is a medical emergency, it is life threatening!! Don't think people are over reacting, because it really is a serious matter. And while not everyone will have respiratory failure from it, cardiovascular effects are extremely common!! Once you damage your heart it is very hard to recover from, especially if low potassium leads to a stroke or heart attack. Those two things are devastating!!

I just wish doctors would have taken me more seriously. Which is why I always say self advocacy is a MUST! Never fear standing up to doctors and telling them what you NEED. Don't take no for an answer, ever!! Sure doctors have years of medical knowledge but they are also human too, just as human as you and me!! They don't have the final say as to what is best your you!

Had I stopped fighting had I not gotten my surgeon involved too in the end, I would still be dying and my body would still be failing due to extremely low potassium!!

Why didn't I fight for TPN? Honestly TPN comes with a TON of risks including a greater chance of sepsis which would probably have killed me! TPN is known to cause liver failure and many other horrible things, so its not something I really wanted, even in the end stages of life.

I really believed a G-tube was what I needed and what I wanted to try before something extreme like TPN. I even asked for an NG tube to see if it worked first before a surgical G-tube was placed. Guess what, that was denied!! Who asks for a NG tube anyway? Who just ups and volunteers for that? I was just desperate for relief that I was willing to have a tube up my nose. But I knew a G-tube was the most beneficial and made the most sense. So I fought for what I believed was best for me and my health. I was denied multiple times but that never stopped me!!

Low potassium was killing me, and would have killed me had I not agreed to a tracheostomy! Its so scary to think something so simple would have saved me had I gotten it placed in 2019.

My pelvic floor is completely paralyzed. Something no doctor has EVER heard of. Trust me I've tried to find others like me and have come up empty handed. It's a waiting game now to see if I regain any of those muscles again. If I do, its highly likely the severely low potassium is to blame!!! I will be pissed the day I regain any function because that too could have been avoided!

So much of what I've gone through within the last 2 years could have been avoided. I lost 2 years of my life pretty much as my health just went down hill. There's so many other things I could have focused on but instead we were fighting to keep me a live and find answers to why I was literally dying. During this time I went through countless tests! It all boils down to hypokalemia.

So again never ever feel bad or guilty for standing up to medical professionals or being persistent in what you need and want!! Never let a doctor make you feel less then or tell you its all in your head. It's ok to fight back, its ok to tell them what you think and how you feel. Its ok to fire them and get a second opinion. Advocate for yourself and what it is you NEED!! You know yourself and health better then anyone else! What works for majority of others doesn't work for everyone. Medical treatments is not a one shoe fits everyone type of deal!!! I will be writing another blog about this as well. But wanted to make a post about the importance of advocating as well as hypokalemia and how dangerous it truly can be!!! Get your electrolytes checked often, know the signs and get help if they are ever out of wack!!! If you ever just feel off, see a doctor.

Your health is so important! Take care of yourself, make yourself your very first priority. Without you, you can't take care of everything or others in your life. This goes for mental health as well as physical!!

I love you all and appreciate all your support and those who have followed my journey. I care about you ALL too!! Just know my inbox is always open. I am am a no judgment zone. If you ever need an ear or someone to talk to, don't hesitate to reach out!! No matter the subject I'm always here for you all!!

Of course if you ever have questions I'm always happy to answer them.

Make yourself a priority today!!

Fighting to breathe another day 💜 #beccasfight