09/01/2025
🕶Perspective 🔍 This is my life. I live it the best way I know how. I am not posting this to get attention, or sympathy or praise...I am just sharing this in the hopes that it will make someone realize how blessed they are. I would never have chosen to have Gitelman Syndrome. A rare kidney defect that causes me to spill all my Potassium and Magnesium. These vital minerals are essential for life. As fast as I infuse my 8 hour nightly infusions of K & Mag, and take many oral supplements as well, I spill (p*e) it all back out. If you have never heard of my disease, I encourage you to search the internet and read about it. It is an autosomal recessive gene that both parents have to be a carrier of. Even then, there is only a 25% chance of having a child affected with GS. I was born with it, but not diagnosed until the age of 21 while 7 & 1/2 months pregnant with my 1st (of 3) child(ren). I had the flu and got so dehydrated that I had tetany from head to toe as well as facial paralysis. Terrifying when I had an unborn baby that I was concerned about.
I was hospitalized 16 times last year. Just about as many in the prior 5 years. I had a port become infected in 2013 and I became septic. I now have another port and pray I don't ever get another line infection. I take 45 ml of liquid (10%) K three times a day and 3,200 mg of Magnesium Oxide orally daily. It's like chasing the wind.
Hot summer days deplete me, as do exercise and if I were to drink alcohol. They all deplete my electrolytes, and makes it even more dangerous. The normal range for people for their Potassium is 3.5-5.6, and Magnesium around 2. My lowest K has been 1.5 and Mag .8. More times than not, my levels become critically low and I spend 2-6 days in the hospital. Blood draws, EKG'S, x-rays, IV's, PICC lines,
Port a caths and daily infusions have become my life. 27 years of trying to keep my K and Mag at a level that I can feel somewhat functional. There is daily chronic pain, lethargy, insomnia, thirst, tired almost all the time, getting up a few times a night to p*e because our kidneys work too well. Multiple doctor visits... I could go on and on. So please cherish and appreciate your health! Amen 🙏🏻
