Friday, 29 August 2014

PHighter Friday: Keti

Adventures with a Loser Disease

Today is a most excellent day ! And as time goes by, the good days have been out numbering the bad days.

It was late 2006 when midday at my workplace someone said to me that my ankles were very swollen, and I was shocked at the size of my feet as a whole.  Of course all kinds of advice were thrown at me as to what to avoid eating, but I knew that it was something more than water retention…. I started paying close attention as to when the swelling would start in my day to day, and noticed that all remedies for water were useless. In fact prescribed water pills caused ER visits due to dehydration and potassium issues… Diagnosed with Congestive heart failure… while dehydrated?? Hardly ! 

I had two separate  A-fib episodes that year at 3 a.m. , and was assigned to a cardiologist who in a course of 2 years fed me all the tests and stories of a heart condition that I didn’t have but “ you need to take heart meds just in case”.  I did not follow his advice, I was a very healthy and gym fit woman now terrified as to what could be wrong.  After 2 years of being misled I went to a different  and younger cardiologist who found that my right ventricle was stressed at  76 , and sent me to a PAH specialist who did the Cath and determined what was ailing me for more than 5 years actually, he said.

He also sent me to the sleep center where they found that I stopped breathing 82 times in one hour. I was given CPAP which gave me energy and filled me with air all night long.

We all know the course of things, the fears, the loneliness when no matter who loves you and who is around you… you are walking this road alone moment by moment unable to think of anything else. Oh, they all “understand”…  but no one can possibly know unless they face death eye to eye.  It became the demon for me,  to fight and flight better and faster than “IT”.  I started researching on lungs, and their maintenance… and yes I was and still am a smoker… and I didn’t talk about PAH to anyone.

I have been a healthy eater all of my life and yet the stress of this demon filled me with cortisol and I started to balloon. I was told to give up my bicycle and “ just sit in a chair a wither away” more or less. And so I signed up at the gym …
Most days feeling like I will pass out but at least I was doing something I liked. The 14 months that they gave me in life meant nothing to me. I was going to go down fighting, learning my lungs,  being pro active, advising others not to listen to anyone but their gut. My kids gave up on me, blamed my smoking…  couldn’t deal with my “dying”… Bless them for deserting me for I found unimaginable strength on my own, because of it.

14 months came and went, and my every 6 months six minute tests went from 175 meters to 280, in 2 years my number had gone from 76 to 54 and the doctors now wanted to know what I was I doing. Tracleer, the wonder drug, stops the PAH from worsening, but we all know that no drug cures us !!

I told them that I went to the gym, took vitamin B3 for my lungs and blood flow, Mega dose B 12 daily B Complex and was convincing myself that I HAVE NO DISEASE! I stopped making the demon my priority until it became a fact of my life like brushing my teeth. I listened to no one and even today I could care less what advice I am given… Be me, live me, and then come tell me how to fight.

By April 2013 the Cath showed that my PAH was now a 32.  The six minute walk I did was 260 meters. 
By January 2014 the Cath showed a normal number of 25-26 and I walked 400 meters in 6 minutes.
But I knew that even before the tests, I could walk upstairs 2 flights no stopping, just normal tired when I reached the top.

I truly believe that the CPAP, along with forced lung expansions,  deep breathing wherever I was and whatever I was doing, my vitamin intake, my stubbornness in winning and belief in God, won my fight.

I am not out of the woods they say, but that’s because no one knows everything about the disease…which I prefer calling a CONDITION…  a diabetic has more to worry about than I do. I now take only one Tracleer per day so I don’t damage my heart since PAH is barely traced inside me.  Oh, I am supposed to take two per day alright, but I listen to my body more than I listen to  my doctor* …. That’s how I am. On guard are my doctors LOL not meeeeee.   The 14 months became 5 plus years to date, to infinity and my morning pill is just that… a morning pill. 

PAH? Who, Me ?? nope.. and there will never be a round two either! Demon is scared of me now!

*Editors note: The PHight or Flight Project and it's contributors do not endorse or suggest changing prescribed medication in anyway. The PHight or Flight Project always recommends talking to your PH specialists about any questions you have about medications.

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